#1013: Pressure to reconstruct after a mastectomy

Dear Captain Awkward,

It’s been two years since my diagnosis with a very aggressive form of breast cancer, and eighteen months since my double mastectomy. The type of cancer (IBC) ruled out immediate reconstruction with implants (which I would have declined anyway, because not for me).

It used to be that women with IBC didn’t get reconstruction, because TBH we usually didn’t live all that long. Nowadays after a waiting period of two years or so one can have a DIEP flap where skin, fat and blood vessels are taken from the stomach and grafted onto one’s chest.

I’ve completed treatment, there’s currently no sign of cancer, and I’m doing well. I’m trying to move forward and get on with my life as much as possible.

But here’s my problem: medical folk keep pestering me to get reconstruction and don’t seem to understand that I DON’T WANT IT.

I’ve made a list of the pros and cons and–while it’s fine for others, it’s not fine for me, right now, under these particular circumstances.
I’m a smart person with a supportive partner, friends and family. Yes, the things surgeons can do are amazing. I know all about my options. If I want more information I know how to get it.

But..the continual unasked-for conversations from presumedly well-meaning medical providers are irritating at best and at worst can send me into a days-long depressive spiral.

Because I was trained to be a people-pleaser and discount my own ideas and opinions, and when I hear, “Have you considered reconstruction? We can do amazing things and by the way, you basically get a free tummy tuck..”

..my brain translates it into, “You are not okay the way you are, and your choice is not a valid one and your appearance is not acceptable. You are BROKEN. Let us fix you.”

What none of my medical providers seem to understand is that I want to maximize my physical activities and minimize my time spent in hospitals to the greatest extent possible, and for the most part I don’t give a rat’s behind whether I meet society’s expectations of how a female should look.

I’ve always been large-breasted and very self-conscious about it, and at the same time considered myself a bit of a “tomboy”.

It turns out I’m more at home in my body without breasts, have less back and neck pain, don’t miss bras or boob sweat, and enjoy wearing button-down shirts I buy from the men’s department.

My sex life is just fine.

I identify with others in the “flattie” community far more than anyone else in Breast Cancer Land.

But when doctors start pushing reconstruction, I feel as if my choice to remain flat is being questioned, and it affects my mental health when my efforts to explain and/or justify my choice seemingly fall on deaf ears.

Is there a script to politely shut this down? I’d be grateful for any suggestions.

Her/She pronouns, and just sign me “Flat and (Mostly) Happy”

Dear Flat and Mostly Happy,

I think your medical providers need a letter (email, fax, whatever works) spelling out what you told me. Something like:

“Dear Doctor,

Thank you for your excellent care so far.

There is some information I would like you to put in my chart & medical records in a way that it is clear to all the providers & staff I work with at your practice: I am not interested in discussing breast reconstructive surgery at this time. If that ever changes, I will bring it up. 

I know you and your staff are just trying to make sure I know my options. I’m very happy to be cancer-free, I’m happily adjusting to my new body, but I’m feeling pressured and distressed by these discussions and the prospect of more surgery in a way I’m sure you don’t intend. I’d appreciate it it can just become a non-issue during our visits, and if that changes, I will be sure to let you know.

Thanks for all you do.”

If you know of articles that might explain this well and help the doctor or clinical staff do better with other patients, include links or mentions of those resources. Then send it to every one of your current providers where this has been a problem before your next visit.

It’s not a 100% foolproof solution, but it will make you feel like you are more in control and you can remind yourself that hey, you told them how to take care of you as clearly and politely as you could. If someone brings it up (maybe they haven’t seen it, maybe they forgot), here are some scripts:

  • I’ve said many times that I’m not interested. Can I ask why you are trying so hard to sell me on this when you know that I don’t want it?

I suspect (but do not know for sure) that the answer has to do with insurance & money, like, there is a limited window where insurance will pay for reconstruction so they are trying to make sure that you get in inside the window and worried that you’ll regret it later. People had to fight hard to get insurance companies to pay for any reconstruction and the benefit is probably a “use it or lose it” deal.

That’s an understandable reason, if that is the reason, so, make them spell it out for you, and then give your informed consent to skip that part, like, “Okay, I appreciate it – I know you are trying to make sure I am financially taken care of as well as medically, thanks for helping me make an informed choice. I choose to opt out of reconstructive surgery at this time. If I change my mind down the road and it becomes an insurance or financial issue, I’ll cross that bridge then. In the meantime, can we agree to put this to bed? It really stresses me out to talk about it in a way I’m sure you don’t intend. Thank you.

See also:

  • I’m not interested in talking about reconstructive surgery. I’ll let you know if that changes.
  • I put something in writing about this – did it not make it into my chart?” Ask the person the best way to make sure that this information is visible to anyone who treats you.

Repeat this stuff like a broken record. If the person won’t stop, you have permission to stop being polite. You probably won’t stop being polite because you are a polite person but knowing that you’ve communicated your needs very directly and clearly can sometimes be helpful, like, “I’m 100% sure I’m not the one making this weird right now.

I hope this gets easier for you, Letter Writer. Readers, do you have any tactics that have worked to set boundaries with medical professionals?

It is now time for the summer Captain Awkward Dot Com pledge drive, where I shake the tip jar in the general direction of all of you kind readers. If you like what I do here and are able to support the work, please visit my Patreon page or make a donation via PayPal or Cash.me. Thanks to your support, we’ve made the blog ad-free. My next goal is to take a sabbatical from teaching in 2018 and work on a CaptainAwkward book and other writing projects. Every little bit counts, and I’m grateful for it.





208 thoughts on “#1013: Pressure to reconstruct after a mastectomy

  1. I will be watching this thread closely for ideas to use on health professionals who KEEP bringing up weight-loss surgery when it is not what I’m there for.

    Ah, you are seeing your dermatologist about psoriasis? LET ME TALK ABOUT WEIGHT LOSS SURGERY says the dermatologist.

    1. I don’t want the thread to become all about Weight Stuff but the letter approach has worked for me twice when I was searching for a new primary care doc. In one case the doctor & her staff ignored the letter & the request, and I read her intern for filth when he started lecturing me about my weight while taking my blood pressure. I left that practice and found a new doctor because I now had evidence that the people didn’t read my chart or see me as a person. In the second case it’s been respected and that person is now my doctor.

      1. My experience, as a middle-aged person who has been fortunate enough to always be able to get medical care, is that medical offices, like fish, rot from the head. I’ve never had a really shit front-of-house experience at a place when the doc was fantastic or even just good. Shitty PAs meant shitty docs and slapdash paperwork that resulted in insurance headaches. Dentists offices that try to sell useless adult fluoride treatments do bad jobs on crowns. Offices that don’t respect my time and who keep me waiting without apology are also the ones that do rushed consultations.

        I no longer put up with that nonsense and just view it as a sign that there’s more to come and probably sooner than later. Not everyone is fortunate enough to be able to do that, of course, but if you can vote with your feet I encourage people to cut their losses quick. It’s amazing that we’ll put up with more crap from the people who we trust with our irreplaceable lives than we ever would from a place where we buy a plate of spaghetti.

        1. I actually have a great cardiologist who has some … pretty bad office staff, but – he rotates through 3 hospitals in the area, so I don’t think he chooses his own office staff. I assume they’re hospital staff first and “Dr. D’s” staff second.

          Still, it’s frustrating. Especially the time Doc requested records from the hospital where I had my original surgery, and when I called to tell them the name of the hospital the guy kept saying “I don’t think that’s a real place.”

          1. “I called to tell them the name of the hospital the guy kept saying “I don’t think that’s a real place.”

            I would totally be astonished about that if I didn’t have a similar experience.

          2. Mine was Tufts Floating Hospital in Boston. He got stuck on the “floating” part. I even explained why it was called that. I told him to google it. Come on, who works in medicine that hasn’t heard of Tufts, though??

          3. HAHAHAHAHA! This happened to me, too! I had to have records of my prior cardiac exams sent to my current doctor from the Cleveland Clinic, and the office staff could NOT believe that was the name of the hospital, even though the Cleveland Clinic is, like, the NUMBER ONE HEART HOSPITAL IN THE COUNTRY.

            I thought long and hard about continuing to see them, I can tell you.

        2. I’ve never seen the pattern dissected like this before, but now that you mention it, this has been my experience, too. Any time I’ve started out thinking, “The doctor’s fine but the receptionist is really rude,” it has turned out that the doctor is in fact not fine at all.

          1. I had a doctor who was fine but her receptionist/office manager could be brusque to the point of rudeness. She wasn’t actively nasty she just catastrophically lacked social graces.

            Turned out she was also a wizard at dealing with stupid insurance bureaucracy and the foibles of other doctors’ staffs. It was a small practice and she was the only person who did front office work, and it turned out her ability to cut through insurance companies’ crap outweighed her lousy manner. I had my insurance refuse to pay for something for a bogus reason and had been going around with them for a month and as soon as I mentioned this to her she said “That is absurd. Let me call you back.” She fixed my problem in one phonecall. Same thing happened when a specialist’s office kept insisting they didn’t get the referral I had faxed them multiple times — Grouchy Front Office Lady dealt with it in one call and they never gave me trouble again.

          2. My old doctor was an exception.. some of his receptionists drove me nuts (for example, one day in the waiting room, I watched two of them talk about their weekend, answer the phone, put the caller on hold, and finish their conversation), but he was amazing.

            However, I don’t doubt that this is a relatively common pattern.

          3. I have an endocrinologist who is possibly the best doctor I have ever had, but his assistant is really awful – rude, and she doesn’t give him messages. Unfortunately, this affects the way people see his practice and he gets downgraded in ratings because of it. I can only guess he keeps her on because many of his patients are Russian and she is also Russian.

            Anyway, my advice to the LW is, get a tattoo on your chest. I once read and article on a woman who had the same surgery and got a tattoo that said something like, “I survived!” and had a big, beautiful rose. Then if someone brings up reconstructive surgery, tell them it would disturb your tattoo.

        3. Spaghetti is easy to replace, and readily available for small amounts of cash on a market with very low barriers to entry. The same cannot be said of oncology care. So it’s not that amazing, really, that we put up with some hassles in acquiring cancer treatment that we would never tolerate if all we wanted was spaghetti.

        4. I, too, have great insurance and can walk from a crappy provider, like Don is saying. Which is great for one-time bad experiences.

          But it is really awful to go through a whole, entire “journey” – such as cancer treatment or, in my case, a pregnancy – where you think that provider knows you, your history, really knows you as a person since they’ve seen so much of you. But then, sh*t like this starts happening, where you keep repeating your wishes over and over and they ignore it. To just up and start over to treat a health matter where your’re expecting an excellent continuity of care is really disruptive and isn’t easy to do while you’re in the midst of dealing with an ongoing issue.

          LW, in your shoes, I might have a T-shirt printed that says, in large letters, “I do NOT want the reconstruction. Quit asking! ” And that would be my going to the doctor uniform from now on. I’d wear it under a cardigan or hoodie or my work clothes to avoid unwanted questions from those outside the doctor’s office. I wish you well, LW. This question is making me relive my own doctor-ignoring-me situation.

          1. Yes, I’m thinking a t-shirt, or maybe even a giant button. Then you don’t have to rely on people reading your chart – or maybe just make a stack of those letters and bring one to every appointment. When I was going through some stressful health stuff it was really helpful to just bring something printed to every appointment – explaining the whole story every time was made me very anxious before every appointment. If you could just hand a letter anyone who asks, it might help you feel like *you* don’t need to engage with this at every appointment. Like, “here’s my documented decision, let me know when you’re ready to discus (what you came in for).” They would have the information on your decision and can check their checkbox. You can totally disengage from this topic.

          2. The thing about the chart is… the Chart is God in medical offices. If something makes it into the Chart, with the doctor’s signature on it, it is an OFFICIAL MEDICAL ORDER, and heaven help the staff member who crosses it. I leaned heavily on this during childbirth, when I got my entire birth plan signed off by every single doctor in that practice and filed in the chart. EVERY time one of the hospital staff tried to do something, or make *me* do something, which I hadn’t had in the plan, I just told them, “Look at my chart, please,” and the problem went pretty much magically away. There were some surprises in childbirth because there always are, and there were a couple of times when the elements on the birth plan which read, “I understand that childbirth doesn’t always go as expected, and some things in this plan may need to be changed due to medical necessity,” but *I* was still the one in control of changing them.

            Yes, you do have to tell them to go look at the chart, and yes, that’s a nuisance. But it has worked better, in my experience, than any system which doesn’t have the force of “doctor’s orders” behind one’s request.

          3. Or a few business cards.

            And be blunt (at least in follow-up–and in the original letter, I’d be a little more blunt and “bossy” as well–write it as an order). I would use wording like: “Do not ever bring up reconstructive surgery. I find those comments stressful and insulting. I do not wish to discuss the reasons why; rest assured that I have made a carefully informed decision.”

            And hand them out to people.

        5. Don Whiteside wrote: “Offices that don’t respect my time and who keep me waiting without apology are also the ones that do rushed consultations.”

          My current doctor is an exception (which may prove the rule–see below). He tends to run late, sometimes more than an hour late.

          But!! He runs late because he really talks to every patient. His standard appointment is 30 minutes and that does not include any of the time his assistants take vitals, etc. That’s 30 minutes of face to face time with the doctor. And if I need more time, he does not look at his watch, fidget or shut me down. He encourages me to talk until we’ve worked out whatever the question is.

          For example, the day came when he noted I’d never received the sort of standard gynecological treatment most women get. He didn’t scold or shame me, just commented that we both know all the reasons why regular GYN appointments are a good thing and asked me if I wanted to share the reason I wasn’t doing it. This was after I’d been seeing him for 4 years and had developed a level of trust I’d never had in a doctor before. It took an hour and a half for me to explain/confess the underlying reason, have 3 full blown panic attacks and use up 2 boxes of tissues.

          I’m sure I made him run late for the rest of the day. I also know that his being willing to do that and hang in there with me through the ordeal was a turning point in my life. Because he recommended counselling and because I trusted him, I was more inclined to trust the therapist he referred me to. And that therapy has been one of the best things I have ever done for myself. It sometimes (lots of times) hurts but it’s good pain, the way a deep massage can be both painful and healing.

          I’m also sure he realised I’d never had any gynecological care in that first appointment when he looked at my medical history. He didn’t ask about it then and I doubt it would have gone well if he had. He waited 4 years until I did trust him (after all, if I had survived 57 years without it, it was unlikely to be an immediate emergency).

          So I don’t mind when he runs late. I figure he’s giving other patients the same caring, respectful, personally involved treatment he gives me. I make sure my Kindle is charged up, though. LOL!

          1. This is my dentist. I have terrible dentist phobia and un-great gums, and he is hands down the kindest, most patient, most un-shaming and chill dentist I have ever encountered. Twice now they have gone ahead and done a deep cleaning on me during a regular appointment — likely because they guessed that if I had to make another appointment, I would get scared and not come back. (There is truth to that). So if I have to wait to see him, I’m totally cool with that, since I’m sure those deep cleanings put him behind with other patients. Waiting to see Dr. S. just means someone else is getting amazing care, too.

          2. I used to have a dentist like that, sophylou. He retired while I was away at college and I’ve never found another practice where either the dentist(s) or the hygienists don’t make me feel like a terrible person because my teeth aren’t stellar. So I don’t go to the dentist as often as I should. I wish I could get them to understand that the pressure they’re putting on me to take better care of my teeth is making me take worse care of my teeth.

          3. My father is one of those doctors. He’s a noted diagnostician in a specialty that is notorious for it’s difficulty in diagnosing, and his comment is: If you listen to the patient long enough, they will tell you what is wrong with them.

            His advice on doctor timeliness is: don’t trust a doctor that’s always on the dot – because it will not matter how much time you need, you will get exactly the time they allotted and not a moment more. But also don’t trust a doctor who is always, always late – because they don’t know how to manage their time, and somebody is getting short-changed.

            It’s worked pretty well for me in vetting doctors over the years. My husband’s amazing oncologist is prompt and timely about half the time, slightly late (15-30 minutes), most of the rest of the time, and drastically late (once 3 full hours), maybe once a year or so (we see him 1-2x each month). But we know it’s because he gives all his patients the same care he gives my husband. If we truly need him, he gets us in, or comes to us, no matter what – and sometimes that messes with schedules.

          4. My gynecologist is the best doctor I’ve ever seen. I wait at least an hour for him every time. And I keep waiting because he is amazing and listens to me, is good at the specialty I initially chose him for, and has amazing bedside manner. Now I know to block off two hours for my appointments with him and I bring a book, because his level of care is worth it.

            His office staff is also excellent.

        6. One exception that I’ve personally experienced is in teaching hospitals, where many of the staff are there while in school, as part of their training. They’re learning – some of them are learning slower than others.

          I had a PA change a surgical form AFTER I signed it to indicate I’d agreed to what I’d specifically told her was not the case. Fortunately we found out about it before the surgery actually started, and we could prove I’d signed the unmodified form when we discussed it with the doctor (who was outstanding). All went well and I heard later on that there was a mighty kaboom at the office when the doctor got ahold of the PA.

        7. I have had several extremely excellent doctors and one really fantastic surgeon with mediocre to bad office staff. Often, especially if they are working within a hospital system, doctors do not have much control over their administrative staff – and that means both choice of people working there and any real control over disciplinary measures.

        8. My own experience has not borne that out, though of course it’s my anecdata vs. yours. Both my wonderful gynecologist and my wonderful endocrinologist had incredibly frustrating front of house staff (though maybe it’s because they were both part of large practices with many other doctors).

        9. I always remind my family that ever class of graduating doctors have someone who came in dead last and you may be looking at that person in the clinic office.

      2. Congratulations, lovely LW, both for your survival AND for getting a body you’re more at home with!

        Also, congratulations Captain for getting a good doctor who doesn’t bring up irrelevant junk.

        I acknowledge I have always had the privilege of having doctors respect me, regardless of my weight. I am fat – and can easily swim a mile or walk several miles with no problem.

      3. I’ve been dealing with complex health issues for 20 years and I feel really stupid to have never thought of a letter. Definitely will be typing up a few in the near future!

    2. Which is fully ridiculous…. I’ve had psoriasis most of my life, and I can tell you that losing over 100lbs didn’t affect it one bit, nor did it change when I gained 50-60lbs back. For me at least, those two things are completely unrelated.

    3. To be fair about it, there had within the last several years been a rash of criticisms of doctors (from within) for not addressing weight ever. So I think many are going overboard in response.

      I agree that many times it’s not related at all but considering the “WTF you are ignoring a burning building while fixing some broken stairs” level of discussion that was going on, not to mention the increased coverage of preventative medicine with the ACA, it was bound to happen, unfortunately.

      1. (I know CA doesn’t want this to become about weight.) I agree that this was inevitable – although I get the strong sense that fat patients were not unaccustomed to hearing comments on their weight from medical professionals before the ACA.

        However, I think this is the wrong way to look at it. I can’t speak to what it’s like to be a cancer survivor, but this standardized approach isn’t only annoying. It’s alienating the LW from her own personal relationship with and desires for her body. In other words, this strategy doesn’t only fail to help patients. It’s counterproductive on its own terms. And the same is definitely true of the Fat Patient Threshold – I hit that benchmark, and it definitely didn’t involve my doctor asking me any actual questions about my diet, schedule, activity level, sports injury history, disordered-eating history etc. etc. etc. The consequences weren’t neutral – it represented a measurable setback in terms of being healthy and active, because in actual fact I’m an eating-disorder survivor who will avoid the part of the gym with mirrors after my doctor puts Obesity on my chart.

        The LW isn’t being asked about her interest in reconstruction in a genuine way – she’s facing pressure, intentional or institutional, to choose a particular option in service of a particular outcome. Her physicians may be doing this in service of some pro-autonomy goal – “Women ought to be told that reconstruction Is An Option!” but it’s harmful and demeaning, and it’s important to see these campaigns in terms of their real-world outcomes. What if a care team managed to actually push a patient into an unwanted reconstruction?

        1. Oh, most assuredly true. It’s just that even the doctors who would not consider that to be part of their business suddenly find themselves confronted with arguments that it is, in fact, their business and they are doing true harm to their patients by not addressing it.

          1. Whatever their reasons, they are doing actual harm to their patients by addressing it *badly.* Here endeth this subthread.

      2. …trying really hard not to make this all “Weight Stuff” but I still prefer to actually be treated based on actually evidence, not scare tactics and lies.

    4. For me it’s cosmetic correction of my teeth… I saw an orthodontist for ten years, at least a third of which was dedicated to trying to fix the last few millimeters of vertical alignment on my front teeth. I managed to get the guy to concede defeat and remove all the ridiculous, hideous contraptions from my mouth when I graduated high school, at which point I was DONE FOREVER. No, I don’t want crowns. Do not speak to me about crowns. ESPECIALLY do not speak to me about Invisalign. Unless there is an immediate threat to the overall health of my mouth, I do not want to hear about it, ever.

      My previous dentist was great about this, but I’m seeing a new one tomorrow and I’m already anxious about this conversation. This is very timely advice for me!

      1. I’m like this about tooth whitening. Yes, I know my teeth are yellow. No, I am not paying you to whiten them. My teeth are a big enough mess without going at them with peroxide or abrasives, thx. Also I’m not stopping drinking coffee so it’s not like it’s gonna last long.

        1. IF tooth-whitening procedures also protected against future tooth decay, I would consider it. As it is, however, it is purely cosmetic, so NOPE.

          I ain’t got time or money for that. Yellow is a nice color, anyway. And the good people don’t care what color your teeth is. They care if you are smiling.

          1. In all fairness, in the regular course of my everyday life I typically don’t notice the color of people’s teeth at all.

          2. I know. Who does? Show business people, I suppose, make up the vast majority of people who notice the color of other people’s teeth. And people in the fashion industry, I suppose.

            But the vast majority of people aren’t going to give a hoot about yellow teeth. Brown or black teeth, maybe, but not basic yellow.

          3. which. . . to clarify. . . is not to say that there’s not very real social pressure to have White Shiny Teeth [TM], but that I also suspect that some of it is . . . er . . . manufactured pressure at point-of-sale (that is, at the dentist’s.)

            Bodies come in lots of shapes and sizes with a huge variety of details, and even though we are all trained to be Judgmental As Fuck about other people, I think it’s also fairly common for people to absorb a lot of the human variation they see everyday without really noticing it or thinking much about it. I might judge myself harshly for a certain aspect of my appearance, but it’s always enlightening to notice how *little* I notice the same aspect in other people. (aside, I also have quite yellow teeth, but the expenditure of effort and behavioral change to make them whiter is Just Not Worth It to me, even if I feel a little insecure about them.)

          4. Just as there is a lot of very real social pressure for women to shave their legs and armpits, and wear make-up and styled hair. It is absolutely manufactured, and while it may not be “point-of-sale,” the sale is the point.

            I tried an over-the-counter whitening system before, because it was on sale. I lasted about two fifteen minute sessions, before I just shrugged it off. That was about the same time I started fading out my make-up usage, as well.

            Now, I wear make-up only when I personally feel the need, for myself. I wore make-up at my father’s funeral, and for about a week after that. And then another time, about six months later, for a day or two. FOR ME. Otherwise, I didn’t need it, and didn’t care about the social pressure because, I hit forty, and who gives a flying flip, anymore?

            Gotta love middle age, when it comes to feeling more self-assured. This I care about. That I don’t. Why bother with stuff I don’t care about? FREEDOM!

            I wish I had known then what I know now. I wouldn’t want to re-live my puberty, but golly, if I could put my 45-year-old brain in that pubescent body, and let that teenager live life with a middle-aged attitude, I totally would.

          5. I have weird teeth, and by that I mean some of them are non-existent. My upper laterals simply never grew. I had braces as a teen to close the gap once the baby teeth fell out, and then I was convinced as a young adult in my early twenties to have my canines trimmed down and veneers placed over top, to make my smile look more “normal”. I wish to god I’d never done it. The canines were perfectly healthy and I hugely doubt anyone other than a dental professional would have noticed that they weren’t the “right” teeth for that slot in my mouth. I now have to have some form of dental work in there for the rest of my life.

          6. I did notice a former supervisor’s teeth, because he overdid it on the whitening and it was a very fake looking brilliant white. Teeth aren’t usually *that* white in nature.

      2. Whenever I get a new dentist, I tell the receptionist, dental hygienist, and dentist right up front that I don’t want anyone to talk to me about flossing. I’m an adult: I know it’s important, and I also know that in my 33 years of life, I have never done it and I’m not about to start now. My teeth are fine. Would they be better if I flossed daily? Maybe. Did being badgered about flossing make me stop going to the dentist for a while? Sure did!

        Now that I am a bit older and have many fewer fucks to give, I just tell them straight up that I don’t do it and that I won’t be doing it. I say it in a cheerful, firm way, and I have never gotten any pushback. A little bit of surprise, definitely, but everyone has always said “Well, okay then! Open wide!”, and never made another mention of it.

        1. FYI, while flossing can/does remove some plaque, there is no statistical benefit to flossing + brushing versus only brushing. Overall outcomes are the same.

          Personally, I floss because I like the feeling of not having bits of food stuck between or along the edges of my teeth, but there is no evidence of improved health outcomes.

          1. The studies that show there are no benefits to flossing and brushing above brushing alone are fairly new – not much over a year old, I think. Most dentists are still suggesting it though on the assumption of “Can’t hurt, might help”.

            I’m in the crooked yellow teeth camp myself. Fortunately all of my dentists have accepted that I am doing nothing about it unless there is a medical reason to. There was some concern about gum erosion and they sent me to a periodontist, who sent me to an orthodontist, who suggested $6,000 braces and I went back to the dentist to say “Fuck no, if that weird tooth becomes a problem, we can just pull it.” Cause I did braces twice and a retainer once as a kid/teen and I know that they are just a waste of money when it comes to my mouth. I already have a gap on one side, don’t care if I get a matching gap on the other.

          2. I am pretty sure one of the recent studies had a control group getting their teeth flossed by a dental hygenist, one group brushed and flossed, and one group just brushed. the ones brushing and flossing their own teeth were barely different to the just brushing, but the dental hygenist flossed ones were much better.
            basically, do it like a dental hygenist does it, or don’t bother, lol.

        2. It took my former dentist showing me how to floss for me to start flossing. I never did it because the floss always got stuck in my teeth and I ended up spitting out mouthfuls of blood every time. Once I got trained, I was able to floss with no problem.

        3. I talk to new dentists about not using shame-based language about my teeth / required dental care. I am very clear that if they shame me, I will never return to their practice and it will likely take me a year or more to overcome my dental anxiety enough to seek treatment elsewhere. That generally works.

      3. I am missing 3 teeth. They are at the very back, and I do not even notice they are gone until I go into the dentist office for a cleaning. Then I get bombarded with “have you thought about implants” over and over again. I had it entered into my file that I do not want implants. I then threatened to wear a t-shirt that said “say no to implants”. My dentist laughed and promised to stop bringing it up. I think medical personal get stuck using the same script and don’t realize how repetitive and annoying that is.

        1. I think that’s part of it, and also that they see so many patients it’s legitimately harder for them to keep track of things like “Have I had this exact conversation with this exact person before?” — it stands out to me that my dentist keeps asking about whether I want my wisdom teeth proactively removed (I don’t! they’re fine!), but to him, it’s probably a conversation he’s had fifty times with fifty other patients since the last time he saw me, and “had brief conversation about wisdom teeth, no action” probably doesn’t register as worth adding to my chart.

      4. *Because* of childhood orthodontia, the molars on the right side of my mouth don’t meet when I bite down. Every time I’ve been to the dentist since I got the damned braces off, I’ve heard “Do you know that the teeth on the right side of your mouth don’t meet when you bite? You should probably get that corrected – it could cause you jaw problems later.”

        A) Of *course* I know they don’t meet, it is my own goddamned mouth. I’m the one chewing with it.

        B) Y’know, considering that meddling for cosmetic purposes caused this ‘problem’ in the first place, I think I’ll leave it alone till it actually does cause me jaw issues.

        I do not want this thing and I do not want to talk about it any more but it comes up every time.

        1. Several years ago I was searching for a new dentist. I tried one dentist who immediately said “we have to get those wisdom teeth out.” You could almost see dollar signs in his eyes to find someone my age (mid 30’s at the time) who hadn’t had their wisdom teeth out yet. He sent me off for a head x-ray and then booked me in for the next appointment to get things underway. I walked out kind of shocked at the ‘done deal’ treatment of the whole thing. He didn’t even ask me if I was having problems with them.

          My wisdom teeth had been coming in for about 5 years or more. I would have some gum sensitivity for a day or two every 6 or 12 months or so and that’s it.

          I cancelled my next appointment and went in to the clinic and picked up the x-ray that had been sent directly to them (The receptionist immediately started back-tracking about how the dentist just wants to discuss it further, that’s all).

          I took my x-ray to another dentist recommended by two people I know who use him. He looked at the x-ray (showing my wisdom teeth coming in in PERFECT alignment to my back molars) warned me about all the worse case scenarios then said “that’s not what I’m seeing here” and asked me what I wanted to do. I said I was happy to leave them unless they start causing me some actual problems and if they do we can talk about it then. He said “I am inclined to agree.”

          Guess which one is still my dentist 10 years on and which one isn’t. (Wisdom teeth still doing their thing and slowing coming in with no dramas, thank you.)

      5. Ugh, so much this. My bite is perfectly healthy but I have some charming irregularities in my smile. Nothing catastrophic – I have nice, mostly even teeth, they’re just not geometrically perfect like most of the kids I grew up with. I am 45 years old, and if something were wrong with my bite, the dentist I went to for 15 years would have mentioned it. Recently I changed dentists because I moved far away, and the new guy had all the charisma of one of those cruise-ship creepers who dance with old ladies for money, complete with freakishly perfect capped teeth. He’s working on my mouth and commenting that I could have this straightened and that veneered and so forth and ends with “You could be such a pretty girl if you’d just get braces.” At which point I nearly bit him, and in my mind I’m all “FUCK YOU I AM PRETTY ENOUGH ALREADY” and then after that I changed dentists again, because I am so not going to pay for what amounts to mild harassment combined with shitty advice.

    5. One of the reasons I love my doctor is that she *knows* me, and knows that there are much deeper causes to most of the issues I have.

      The only time weight loss has come up is when I’ve mentioned it, and her response was, “You know nothing’s going to change for good unless we get your stress levels down, right?”

  2. I’ve magically managed to find a doctor who doesn’t bring up surgery or other drastic options when it comes to my various problems. They are out there! And LW, if your requests get ignored, you have our permission to nope out and go find one! (Although obviously YMMV, because finding a new doctor isn’t like finding a new pair of 1-use shoes at a discount store, it takes work and time and money.)

  3. These are great suggestions that I think have even broader applications than just this one.

    LW, congratulations on being cancer free! And kudos to you for knowing yourself and not being beaten down (even inadvertently) by the barrage of frustrating (albeit well-meaning) suggestions to alter your body. As a fellow (mostly former?) people pleaser I know how hard it can be to fight those kinds of comments, particularly when you feel/suspect they often come from a place of caring and support. Doesn’t make it easier to hear, but it can make it harder to push back on. I hope you will use the Captain’s excellent scripts and ideas here and will soon find yourself largely free of this kind of discussion so you can just focus on your care and your health when meeting with your docs and providers.

    Good luck!!!

  4. In addition to the Captain’s recommendations, I think the important thing to remember is that you don’t have to explain yourself. “I’m aware, and I’m not interested. Could we please focus on [thing you actually came in for]?” Or “I’ve already made my decision on that.” If they keep pushing, even after you’ve repeated yourself multiple times, then go to “My understanding is that this isn’t a medically necessary procedure. If it’s not optional, then tell me why. Otherwise, please accept and respect that I don’t want this.”

  5. If you can connect with other flatties in your area, you may be able to find the names of providers who are accepting of a woman’s right to choose what her body will look like, in case it comes down to making a change. FWIW, your number is growing–going flat is increasing in popularity. It all goes back IMO to people believing that a woman’s body is for other people’s viewing pleasure, and certain parameters are paramount. It’s fine if others want to buy into this for themselves, but they have no right to force that on you. I wish you health and happiness going forward!

    1. When Angelina Jolie had her double mastectomy a few years back, I noticed that it was mostly male commenters on one online news site who criticized her and basically said that she was just a silly bimbo for doing it. Because heaven knows, women don’t have the right to decide what’s best for their own bodies!

      1. It seemed especially absurd when you actually looked at the risk she was facing.

        Imagine 8 Angelina Jolies standing in front of you. Now 7 of them die.

        I’d’ve chopped off my boobs, an arm and a leg if necessary to eliminate odds that high, never mind just boobs. I’d even consent to wear a Donald Trump mask for the rest of my life, if that were the medically-necessary treatment!

      2. Cool thing? So many more people were willing to get pre-emotive masectamies after Jolie did it that doctors started referring to this increase as “the Angelina effect” or something similar.

        So yeah, totally a silly move to be a positive role model! /s

  6. Has to do with insurance and money– Yup, that’s what was running through my head as I was reading. Even before getting to the Captain’s response, I was thinking of a script along the lines of:

    “I know you can make money selling me reconstructive surgery, and I find it unethical that you keep trying to sell me something I don’t want. This is for your benefit, not mine.”

    The Captain’s script is more tactful and makes fewer assumptions. For that reason I like it more. By asking the question, you leave them in the position of squirming if you’ve guessed the correct answer.

    1. The doctors who recommend plastic surgery that this particular OP is talking to are not the same ones performing it or getting paid for it. They aren’t making money off the recc. But there is a huge concern in breast cancer treatment about making sure that all the patients know that they have the option of recon, and that their insurance is required to cover it (to the same extent it covers recovery from injury, which may not be as complete as one could hope). Partly this whole thing comes out of a laudable impulse to help patients exercise all of their options. But the assumption that all patients OF COURSE want reconstruction is aggravating.

      1. thanks for mentioning this – Clarry’s assumption is untrue – the doctors recommending the reconstruction make no money off of it unless they are involved in an illegal kickback scheme – they are different doctors.

        1. I dunno. Not to bring it back to weight, but the hospital my doctor’s practice is housed in makes him bring up gastric bypass to every patient above a certain BMI. Yes, even to body builders. He uses it as a jumping off point to point out that BMI is bullshit and find out how the patient feels about weight, though.

        2. It depends – most of my doctors (GP, OBGYN, ENT, neurologist) are housed together under one practice. If they can recommend another doctor within the practice that would benefit the practice overall (have insurance pay for this expensive surgery!), it can benefit the original doctor as well.

          For what it’s worth, OP, my mom is also a breast cancer survivor who has chosen not to have reconstructive surgery, and her doctor (only her doctor) as asked her exactly twice if she wanted it – once while planning the surgery (where my mom basically said “not right now, ask again later”), and a few months into recovery (and her response was “no, I’ll let you know if anything changes”). I don’t think nurses ever tried to “sell” it (they may have asked if my mom was considering it, and dropped it when she said no). If they keep pushing you, it’s time to push back. And CONGRATS on kicking cancer’s ass!

    2. Only a reconstructive surgeon would make the money, and I assume the OP is not seeing one (because they only see surgical candidates) when she refers to “medical folk.”

    3. I think it’s much more likely that this is about evidence-based guidelines than money. One of the ways that quality care is achieved in oncology is through the use of evidence-based guidelines, which have a set of recommendations and quality measures (some are broad, and some are disease-/stage-/molecular subtype-/etc-specific). “Counseled and gave patient information about reconstructive options following conclusion of treatment” is exactly the sort of quality measure that would be in these types of guidelines. It’s meant to keep important treatment and quality-of-life information from falling through the cracks of a disjoined medical system, but still – they’re meant to be guidelines, and everything in them might not apply to each individual patient. Personalized care for LW means to stop asking about reconstructive surgery.

    4. It could have something to do with insurance and money, but it is most likely about standard of care.

      Speaking as a practicing doc, we need to discuss options with patients – it is why you are seeing a doctor in the first place. What I was taught to do is to offer what I think is the best course of care (again, because you are asking for my clinical licensed opinion) along with other viable alternatives. I am also supposed to explain the benefits and risks of each type of care I advise. So my guess is that the doctors the LW has encountered have been taught that reconstruction is the highest (aka best) standard of care, which is why they are pushing it.

      However! Once a patient has expressed clear disinterest in an option, I stop discussing it because they are not interested in it.* If they change their mind, it is on /them/ to talk to me about it. Continuing to pester a patient about an option they said no to is pushy, in my opinion. Unfortunately, though, especially in traditional medicine / surgery, too many patients have come back with lawsuits (and won) about how they “didn’t understand their options!” and the “doctor didn’t adequately explain everything!” I have no doubt some of the lawsuits were valid and I have no doubt that some of them were patients who regretted their decision but blamed their doctor for it. I think that this may be the root cause of the pushiness. If it is true, then the Captain’s recommendation to put it in writing like that is fantastic (and make sure you sign and date it!) because now the doctor has the patient’s written word.

      I also like the recommendation of putting in the chart. Your doctor should be checking your chart, and if they aren’t, you’ll find out real quick!

      *The only time I will continue to push is if a patient brings it up or it is critical. For example, I have someone who is not progressing the way she should and it is because she is completely sedentary – and I told her so in a gentle way when she first started treatment. She said she understood but never started to exercise at all. A few months later, she was complaining about her slow progress, which forced me to bring up the exercise again because there is literally nothing else I can do for her – she needs to help herself. She would complain about all the reasons why she couldn’t exercise, which forced me to continue to talk about it. She was trying to shift her responsibility onto me, but no doctor can heal a patient alone – we are partners in your health – so I had to shift it back to her. Eventually she found a way to exercise and surprise! is getting better now. Believe me, I get tired of repeating myself when someone is clearly not interested!

  7. Also, I can’t find the exact pages and quotes straight away, but Audre Lorde had some choice things to say on the subject in The Cancer Journals. There might be inspiration for you there.

    1. I was just coming here to say this. Lorde had strong feelings about resisting reconstruction.

  8. Congrats on surviving and congrats on getting a body that suits you better! As someone whose been through too much to, I totally get what you’re saying about not wanting yet another round of surgery and recovery. And wearing shirts from the men’s section sounds pretty fantastic.

    No advice, just encouragement!

    1. Too much medical care /surgeries/ appointments. Apparently my brain got ahead of my fingers. :p

      1. Can I just say amen to this? I stopped going to the dentist and other routine care appoints for a year, because I just could not take more medical appointments. Not nearly a big of a deal as reconstruction, but I could get surgery to improve the look of some scars. Maybe someday I’ll be tired of them and want the surgery, but right now I can’t imagine going under the knife again for something that’s not life-threatening. Just . . . no.

  9. This is incredibly annoying.

    It may imply be part of a follow-up checklist that is getting triggered by your diagnosis, treatment, & recovery timeframe, which unfortunately means it’d be kind of hard to squash, since your providers are being reminded to remind you.

    So I’d also explicitly tell your physician (whether PCP or oncologist) to put a note in your chart that informs your other providers that you opt out of this question and prefer not to be asked–a short version of the captain’s letter. Or ask your PCP that they inform the rest of your providers about your preference, since it can be part of their job to marshal your care.

    You’ve been in and out of doctors for a long time now, so you know who you’d be most comfortable bringing this up with. A letter might be ok, but it would be absolute best if you can bring it up in person as a concern of yours at an appointment, and watch them put it in your chart. Or you can send the note and follow up about it in an appointment if you feel comfortable.

    1. Oh jeez, I just read really badly–sorry, Captain, I added advice that you had already completely given. Take my comment to be just…it is completely legitimate to ask for this. Your providers should not ignore it, and they should inform other providers. If there’s a further problem, there should also be a patient advocacy program/line you can call at the hospital and hopefully they’d help a little bit.

  10. I kind of had this same problem! Except that I *did* have the DIEP reconstruction. And it failed. And now I am flat and I wish I had just had the gosh darn double mastectomy and called it done. (I wrote an article for the Toast about it, back when I was still in the “OMG WTF ARGH” stage. http://the-toast.net/2015/05/28/the-one-percent/.) Breast reconstruction is a very personal decision. You get to make it yourself.

    It took me a long time to get my doctors to stop mentioning reconstruction (insurance in the US will pay for it forever, and since implant reconstructions require maintenance, they will keep paying). The issue appears to be on some kind of checklist they have. I had to be REALLY PERSISTENT to get them to shut up. And since not everyone reads the entire patient file every time, I sometimes have to mention it again. The scripts CA mentions are the ones I use.

    I also refuse surveys that want to discuss reconstruction and feelings. Just so you know those are out there.

    1. I had triple negative and did a double DIEP flap in January 2014. It didn’t fail, but it took over a year, 8 months of it with a wound vac, to heal. And actually one part of the belly incision never healed entirely, and then I ended up with a 19cm hernia when my abs fell apart and my guts fell out. I looked like I was pregnant with an alien. When they did the hernia repair they took another couple inches of skin out so there was clean healthy skin and finally it healed well.

      I don’t regret doing it, I wanted some kind of reconstruction, but the surgery is beyond brutal, even if it goes well.

    2. Thanks for the 1st hand account. That sucks that you have to fight so hard to get past “scripts and checklists”.

      1. As I consider this today, I begin to suspect that this particular issue (asking about reconstruction) is at the confluence of a number of trends that actually result in IMPROVED care, but cause a specific problem in certain situations.

        Evidence-based care checklists are great and improve patient outcomes most of the time. They aren’t intended to reduce caregivers to checklist automatons and they don’t have to, but sometimes they have an unfortunate collision with the electronic medical record and the overbooked medical professional. Electronic medical records are ALSO meant to improve outcomes, by putting all the info about a patient at the caregiver’s fingertips, but I don’t know how well indexed they are. It is not uncommon for cancer patients’ medical records to be very, very long. I mean – my chemo alone generated a few dozen pages of appointment notes. And I have received all the medical care in my life, with the exception of a few GYN appointments in college, under the auspices of what is now a single ginormous medical group, so the file has everything. No one who sees patients has time to read the whole thing – they have to pick and choose, and I have to see them a few times a year, and I continue having other stuff go on (a case of strep here, runner’s knee there), so even if my oncologist puts down DO NOT ASK ABOUT RECONSTRUCTION in giant letters when I see him, when I come back in a year and see his new research nurse, she might miss it.

        (I’m not defending the overbooked medical professional. The forces leading to overbooking are structural and systemic.)

        What they should be doing is asking a neutral question like “would you like information or referrals about reconstruction?” but I can’t always face even that. This – this specific question aimed at breast cancer patients – is a real problem because it would be bad care not to check but the question itself, even phrased neutrally, puts some of us (rationally) over the edge.

        1. How about printing in font size 48:

          “I have had reconstruction fully explained to me.

          No thank you.

          Please do not bring it up”

          And hand it to the medic with a smile on your face at the start of every appointment?

          1. That would be like starting off by telling them not to think about elephants. With a smile on my face.

            By handing over that card, I have started a discussion about reconstruction that the caregiver receiving the card is now obligated to follow up on. Is there a reason why I’m avoiding discussions about reconstruction? (Yes.) Is that affecting other parts of my life? (Definitely.) Am I aware of the counseling resources available? (I have a therapist.) Do I want to discuss the issue with a *different* plastic surgeon? (Hell no.)

            And that’s it, that’s our time.

            I would like to spend these appointments discussing more pressing issues – even five years out from diagnosis and most of treatment, I do have more pressing issues.

            Add on top of that that, in common with many cancer survivors, just GOING to the hospital is a psychological horror show with physical side effects. I am not in great shape in that office. I manage to bring someone along most of the time, but it doesn’t always work out.

            This is a somewhat intractable problem, one that isn’t easily solvable by handing over notecards or amending the medical record. (I don’t know how large the pinned at the top important issues section is, I know that the competition for billing in that space is sort of fierce in the medical records of many cancer patients.)

  11. Hey, LW. I too had IBC and ended up with 2 mastectomies rather than a double mastectomy in one go (finished treatment in 2010 and just downgraded to annual checkups this year). I too declined to do reconstruction and am comfortable with my body as it currently exists. I very much like swimming in swim trunks nowadays.

    I was fortunate, it seems, because no one on my medical team has ever pressured me about reconstruction. I did consult with a plastic surgeon for the sake of due diligence, even though I was sure at the time that I would not pursue that option. The preferred reconstruction technique seems to differ by region. In my area, it was all about harvesting from the lats. And as an archer, the thought of sacrificing my lats for cosmetic purposes! Never! Mind you, I haven’t managed to return to archery because of the concerns raised by my gradually worsening lymphedema. But still, I didn’t (and don’t) want to sacrifice functionality and maximum scope for physical activity. Also, every surgery has risks and potential complications. Why expose yourself unnecessarily if the facsimile of breasts is not important to your emotional well-being?

    I am sorry you’re dealing with this bullshit from your medical providers on top of the bullshit that is coping with breast cancer, particularly IBC. Captain Awkward has excellent scripts. Also, consider the possibility of switching to different medical providers who won’t harass you about this issue. You may want to mention that if they keep bringing it up then you will have to consider the possibility for your peace of mind.

    Congratulations on getting through treatment. I wish you an uneventful recovery.

    If you’re on the forums, you’re welcome to PM me there.

  12. One mpre thing. Consider bringing someone to your appointments with you who has a more forceful/direct personality and who is willing to shut down the conversation if it heads toward reconstruction one more time. You don’t have to navigate the bullshit by yourself. Friends and family are often at a loss about how to support someone going through cancer treatment, and I am sure one of them would leap on this as a very helpful service to offer you.

    1. I second this. After giving birth to my first born I was exhausted but determined to breast feed. There was this mean nurse who bullied me every chance she got because my daughter wasn’t latching on correctly when I attempted it on my own. My husband came into the room and heard her tell me that they’d give her a bottle even though I had expressly requested that this not be an option. He used his “big” voice (not quite yelling, but very forceful) and then he got the other nurses involved and had this woman banned from my room. I know it’s not remotely the same thing as you’re going through…but it helped that there was this person who was willing to back me up with medical and personal choices I’d made and when my voice was being ignored, he made sure his wasn’t.

    2. I’ve had issues with doctors refusing medical necessary surgeries because as the owner of a uterus my body is not my own. It’s awful to go down the route of having a male in your life assert your choice so it’s respected but sometimes when you’re exhausted and worn down the short route is the easiest.

      1. It doesn’t always have to be a male, either. Yes, men get respected more quickly and easily; and yes, that is a horrible thing that needs to stop by yesterday. But even though they have an easier time being heard and respected, women *can* get through. If the LW has, by her own assessment, “been trained to be a people-pleaser” who has a hard time shutting people down, a friend or relative — regardless of gender — who has the kind of voice and personality to cut through the crap might be a valuable person to bring to appointments for a little while.

    3. I agree. I’ve​ been the “voice” for a number of friends and family, those who were people pleasers and polite as well as those who were taught not to question authority. I am happy to be someone’s second voice, backup, shield or moral support. Having had a major surgery myself many years ago that required a long hospital stay, a lot of physical therapy and nearly two years of recovery, I know that I have zero desire to go back under the knife for anything short of a life or death matter. Many people feel that way about further surgeries.

    4. As someone who’s supporting someone I love through a difficult medical thing, I third this. I’m really happy that I can be that person who says, “No, she said she doesn’t want that/does want that, thank you for the information, she’s made her decision, now do your job” if she can’t.

    5. This. When she was living with her bio family, my daughter had an endless string of doctors who harassed her about her weight, while giving wildly impractical solutions for her living situation, and just generally making her feel shitty. So when it came time to go get an annual physical, she asked that I come along to be an Educated Science Person and shut the doctor down if they veered into aggressive weight loss evangelism.

    6. Absolutely agreed. I was very sick with a mystery illness some years ago, and even though my doctor was not one who made me feel bad, it still was a tremendous help that my mother acted as my patient advocate to make sure my concerns were heard and taken seriously. In fact, I think there are organizations around that can provide advocates if there isn’t anyone you know who can do it for you.

    7. A friend of mine and I traded medical advocacy for scary appointments for each other last year. We’d talk about what we wanted to happen before the appointment, step in when necessary, refer to our notes/take notes, and debrief afterwards. It was so nice to have someone there to watch my back and give physical comfort when necessary, and it felt good to be able to provide that for someone else.

  13. I don’t know if this posted and is in moderation, or if I’m double posting.

    OP, I’ve been in your shoes (sort of, I didn’t have IBC, just BC), except I *had* the reconstruction and it didn’t work. There is a note in my file now about how they aren’t supposed to ask me about reconstruction, but it’s on someone’s dratted checklist, and I have to rerun CA’s scripts from time to time. They don’t always read the whole electronic record, sometimes there are new people… Changing doctors isn’t a trivial thing for me, given the limits of insurance and oncology and not wanting to switch hospitals. Never going back to plastics has been lovely – stay out of plastics. They do important work, but if it’s not work you want done, they suck.

    1. I don’t understand why charts don’t have a line at the top for “PATIENT ALLERGIC TO EVERYTHING, READ CHART BEFORE PRESCRIBING” and “PATIENT NAME IS X, STOP CALLING THEM Y OR YOU WILL GET US SUED” or “PATIENT HAS TERMINAL X, STOP GIVING THEM IRRELEVANT ADVICE!” or whatever. Obviously everyone should read the chart, but if there were one line they HAD to read it would be harder to get it wrong when in a hurry.

      1. Oh, yeah. “Patient has Terminal disease, and less than a year to live, so stop recommending diets that just make them miserable and won’t save them, anyway. The last thing patient needs is for you to trigger the eating disorder, and make them hasten their own death by starvation and self-torture.”

        Or “Patient has a phobia about A, so do not mention it, unless B applies (B meaning absolute medical necessity).”

        Or “Patient has a history of sexual abuse, so keep touching to a minimum, and ensure another person is present at all times.”

        Just one little section at the top of the chart, where they can list the most important stuff that the medical personnel need to know about that particular patient would be wonderful! Other, less serious things, can go lower down in the chart, and the patient may remind them about it. “Is this thing in my chart?” “Let me see… Oh, yeah, there it is. Not a huge deal, but it’s good to be reminded. It won’t have catastrophic results if you take this new prescriptions concomitantly with the one you’re already taking, but look out for X, Y, or Z side-effects. Or we can just go straight to trying a different prescription, instead. That should avoid the side effects, although it may not be as effective. Which route would you prefer to take?” That’s a whole lot different than, “Avoid triggering the patient and sending her into a melt-down because of PTSD,” or some such.

        1. Even outside of the medical profession, I work for the probation services dealing with those doing community service and those notes are precisely what we have. For the sake of the offender/ those working with them/ the general public, we have large notes that the supervisor can read next to their name stating things like ‘prone to anxiety attacks’, ‘does not want to work with *name*’ or even just ‘ hayfever’. Because sometimes one conversation should be enough.

      2. I’ve been having a problem with my cardiologist’s office where things show up in my visit summaries that … I don’t actually have. I have a congenital heart defect, arrhythmia, and a failing pulmonary valve. So why does my visit summary say that the primary reason for my visit is high blood pressure (aka the ONE THING that I DO NOT HAVE)?

        There’s some weird mismatch between their computer records and what’s in my actual chart. Because nowhere does it show hypertension in my actual chart. I think someone must be just glancing at it instead of actually reading it, and assuming that my arrhythmia medication is actually for high blood pressure and then adding that in every time. I feel like I need one of those lines at the top that says “LOOK at her blood pressure it is RIDICULOUSLY LOW.”

        1. I feel you so much, many bells down.

          Because of a wonky reproductive system that bleeds willy nilly if left unsupervised, I have to use hormonal birth control until menopause or have a hysterectomy. It’s *very* unlikely that I would conceive if I stopped taking BC and very likely that I would end up in the hospital (again), so it’s pretty convenient that I also definitely do not want kids. (Neither does my husband. We discovered that we both felt that way during a phone conversation between our first and second dates and he was so excited that he said “will you marry me?”) My gynecologist was the one who told me it would be unsafe for me to try to get pregnant and he knows I do not want children.

          So: last fall, a week before election day, I had my annual gyno appointment and decided to stop getting depo shots and have an IUD put in instead. The office was going to do the dance with my insurance and contact me to schedule the insertion. Because of the election, the holidays, my honeymoon in January, and my major anxiety about the potential pain, I waited three months before calling to say “hey, are we doing this or what?” after I hadn’t heard from them. They promised to get right on it and that I’d have an IUD by the end of the following week.

          When the receptionist called the following week to tell me that their office had a policy against the way my insurance handled the billing for an IUD and thus would not be giving me one after all, she said “I see in your chart that you might want to conceive down the line, so maybe you’d like to discuss other options with the doctor.” I wish I had thought to ask who had written that in my chart since it was the opposite of what I *want* and contrary to my doctor’s advice to me, but all I could think to say in the moment was “I am NEVER having children” in a deep demon voice that I didn’t recognize.

          I know I’m privileged to have access to a gynecologist at all, privileged to have had free depo shots for almost two years, and privileged that this is one of the worst experiences I’ve had with medicine (the other was the time I went to the healthcare clinic at my university to have a rash on my leg checked out and the nurse practitioner looked me up and down and told me I had diabetes)…but gosh, I felt so betrayed. Dropping the ball on processing the paperwork for three months is pretty frustrating. Promising me a treatment that’s covered by my insurance and then rescinding that promise because of billing protocol is…borderline unethical? That it somehow ended up in my chart that I want to have kids when I do not and can not is wiiiiildly infuriating.

          (A different member of the office staff later whispered to me that Planned Parenthood would give me an IUD, and a week later they did just that. I can’t say enough good things about my experience with PP. I’m also loving my IUD. And I will never have anything to do with the group / hospital system my former gyno belongs to as long as I can avoid it.)

          1. Oh god. I went to *one* appointment with a gyno who a) told me that in order to approve sterilization (which I was not asking for, just mentioned that I didn’t want kids) she was going to have to send me to a psychiatrist to make sure I knew what I was doing, and b) told me that *even if* she did put in the IUD I was requesting (like she was doing me a huge favor rather than PROVIDING ME THE SERVICE SHE WAS BEING PAID TO PROVIDE), if I wasn’t going to have kids, my husband and I still needed to use a condom because “lots of women come in here who think they’re in monogamous relationships and it turns out they have AIDS.” Like….there was so much shit to be unpacked there I should have given her the name of a local moving service.

      3. Some electronic charts do have that top line, and each medical group can (in theory) customize. They generally contain any red flags, like allergies, or very serious diagnoses. It is, like so many other things, a setup issue, not an EMR issue. (Source: I used to work for the biggest EMR company in the US.)

  14. The medical record thing is a great idea. I’ve never had anything this major put in my chart, but there are a number of things that did make it in and make my life easier. Two (concurrent) strategies.

    Strategy one- be blunt, be repetitive.

    Strategy two- choose your audience. Your ob/gyn or family doc may be more inclined to listen than your oncologist or surgeon, a mental health person at that facility can probably help you out, and nurses are great allies, even if they just tell you that you’ll never get through to a particular doc.

    I’ve had a number of things added with medical-ish reasons, like allergies to triptans and opiates, that aren’t strictly true but keep me from having to tell people that I don’t want to take them and then entering a debate. For you it could be “poor candidate for reconstructive surgery” because you are: you don’t want it! It could affect insurance later, bIth positively and negatively, but oh well. Odds are a doctor won’t even ask why it’s there, and if they do, you can just say “I don’t know, but I’m really fine with it. Talk to ____ if you need to know more.”

    1. From experience: “poor candidate for reconstructive surgery” tends to trigger doctors to get creative. Can they refer you to a surgeon who is trying a new procedure kinds of creative. Do not want is the better message.

    2. “Strategy two- choose your audience.”

      And find an ally. Sometimes a nurse or office person (or the doc herself) can be the person to whom you say, “Look, every time people bring this up, it stresses me out. I’ve been through the decision-making process, and I’m really looking for a way to make that whole conversation never show up again. And, to easily shut it down if someone starts it. What do you think I could do? Or, could -you- have a convo w/ the doc/intern/whoever, and point out to them the problem I’m having? Maybe I could ask you to advocate for me, since talking about it sort of sets off some problems for me.”

      And also, you know? Get a little irritated; maybe even mad. And let it show.

  15. I’m a doc. I agree with the Captain’s suggestion about the letter – and also wonder about finding an internal script to counter what your people-pleasing training is telling you. I think you have an amazing and healthy outlook and I am delighted for you. I would not say “I know you can make more money” to a doc – sure, money-grubbing docs exist but they’re rare, and that will rupture the relationship.

    1. I mean, if you still want care from this person, assuming the worst and treating them that way is not going to improve the relationship.

  16. I don’t have any scripts for you LW. I just want to welcome you to the International Unofficial Order of People Who Used to Have Cancer. So glad you are with us. ❤

  17. Male surgeons sometimes don’t understand. Not an insult, just they physically can’t. My specialiast was taken aback when I cheered as being diagnosed as hitting menopause early at 30. He was used to people going ‘No! I can never have kids!’ Where my viewpoint was ‘Yay! I can never have kids!’

    1. Male doctors can also be the best because they don’t understand. While pregnant with my first born I was sure that I hadn’t felt her move for 24 hours and called the office in a panic. They hooked me up to a machine for a fetal stress test which turned out to be normal. I felt stupid that I had overreacted. The MD told me “I have never had a baby before. I’ve delivered thousands, but I have no idea what it feels like to have a baby growing inside me, moving around. If you say you didn’t feel her move, I believe you. How am I to know?”

      I had a female MD for the birth of my second child. She discounted every concern I had as a “normal” symptom. My son was born with long lasting physical issues that he’s still getting treatment for 11 years later that could have been addressed while he was still in the womb.

      Gender doesn’t make one MD better than another…it’s their ability to listen, to respect the patient, and to work a treatment plan that works for both parties.

      1. I really admire your first doctor. It’s really, really difficult for people in professions where they’re constantly told that they’re supposed to know everything to admit that they don’t know… but it’s one of the things which makes a good doctor into a great one.

        1. More doctors need to learn to say “if you say you feel x, I believe you”, because how are they to know? They’re clever and educated, not psychic!

          1. I was worried last year when I was experimenting with anxiety meds. The one I’d been on is great short term for my appetite but jacks it up too high for long term use, so I decided to try something new. I was kinda worried a week later when I went back in (at which point hadn’t taken anything in two days, my reaction was so bad) that he’d encourage me to stick with it longer to let my body acclimate–I was ready to argue because I knew I couldn’t handle it that long. Nope, he took me at my word and handed me a new script that worked well enough until I didn’t need it anymore.

      2. So true. I get debilitating painful menstrual cramps, the sort of thing that makes me say to whomever I’m with “I’m not dying, but I need you to take me home right now.” The vast majority of everyone has been wonderful and understanding as soon as I explain what’s the matter and what I need for help. On the rare occasion that I’ve run into someone horrible, it’s a woman telling me it’s all in my head or not really that bad or why don’t I just try [weird unproven home remedy]. Men have all been sympathetic and kind.

        1. As a migraine sufferer “I’m not dying, but I need you to take me home right now.” is honestly the most succinct script I’ve ever heard and I thank you for it

  18. I think the letter is a great idea. I’m so sorry that your medical team is not listening to you when you express yourself about this issue.

  19. If you use the language of gender identity to describe your comfort with flatness, that might well hit home and force them to think outside of their box. (It could be on target, it could be borderline appropriative, depending on your actual feelings – your letter describes some ambiguity.)

    I would be inclined to go on the offensive immediately: “Please don’t imply that bodies with flat chests are less beautiful.”

    1. Re: gender identity: hello from one of your local non-binary CA readers! I just wanted to pop in and say that the LW should be careful about this — depending on where she lives, the insurance protocols are vastly different. It’s worth finding out whether saying “this is a gender identity issue” will either (1) have no effect on her medical paperwork and insurance, (2) give her access to additional insurance but possibly cause a chain of additional paperwork if she follows up on it, or (3) make her life more difficult because it will trigger a chain of paperwork which she is required to provide in order to “prove” her identity. It varies widely by state and sometimes even by city. I know that in NYC (and I think in all of New York State) insurance is required to cover top surgery for non binary folks; but I also know that the chain of various doctors and psychologists you sometimes have to see to get that kind of thing written on your chart can be long and arduous. Not saying what the LW might like to do, but I think it’s important to know that saying this might open a can of worms rather than resolving an issue, depending on where she lives and how her doctor reacts.

      1. Simply admitting to non-binary identity does not require you to prove or document your non-binary identity. Your doctor has no moral or legal obligation to drag you out of the closet and evaluate it rigorously, and you can always decline further evaluation concerning it. I was suggesting simply putting gender identity on the table as a reason for declining, and asking them verbally to be sensitive to it.

        There’s a fairly limited list of things doctors have reporting requirements around – certain communicable diseases, lead poisoning in children, suspected child abuse, a set of things that lastingly impact your ability to drive. Legally obligating someone to treat you in accordance with your chosen identity is in fact often a hassle, but there’s a lot of room between, “hey, please be sensitive to my gender identity” and performing a full scale bureaucratic assault on the documentation system.

        (I came out to a doctor in an unplanned way – basically to explain another problem – and got offered a referral towards medical transition services, if I wanted such.)

        1. Well…on the one hand, what you’re saying about the difference is true. On the other hand, it is worth considering transphobia and discrimination as complications. We’re living in a time when the ACA’s restrictions on trans exclusion and underhanded underwriting practices are uncertain – and of course she has no control over what her providers actually put in her records, and they’ve already demonstrated that they’re insensitive and lazy. LW could be giving herself a case of Trans Broken Elbow Syndrome going forward, one which could affect her access to or coverage for specialized endo, psych, or surgical care.

          If the LW thinks this might help, it might be worth trying, but it might be less effective than a simple “DO NOT WANT.”

    2. If LW is not feeling a gender-identity issue, and it’s just that she likes the feel of a flat chest, and less back/neck pain from carrying around that weight in that spot (being top-heavy is literally a PAIN), then I don’t think it’s wise to bring gender identity into it. LW said she felt like a “tomboy, ” but not like a man, or other non-cis-female identity. Queen Latifah didn’t get breast reduction surgery to feel manly. She did it to feel physically better, with smaller breasts and less physical stress.

      Better to just state, positively, “I LOVE my new body, the way it is. Being flat-chested has all sorts of advantages for me, personally, and HOORAY! Don’t rain on my parade by trying to make me fix something that isn’t broken. If if change my mind, I’ll let you know.”

      I’m the type of person who cheers loudly when my loved-ones get cataracts, because “YAAAY! You can get intra-ocular lenses, and never need glasses or contacts again! You can get multi-focal lenses, and not even need reading glasses, if your insurance will cover it, and you get the right doctor. Hooray! I can’t WAIT to get cataracts!”

      The more we move forward with better and better accommodations for medical issues, the more people will become positive and happy about changes in their bodies. Silver linings are popping up in growing numbers.

      1. Another non-binary person here; my response to my doctor’s hesitant “If these genetic tests come back positive, would you consider prophylatic bilateral mastectomy?” was “Insurance would pay for that? Oooooooooh.” As a teen, I was really upset when the Titty Fairy arrived; they were useful for nursing, and now I am menopausal and would like the backaches to go away, please.

        1. Me tooooo. I kinda hate having boobs. They’re useful at the moment (still nursing) but the second I am done I hope they shrink down to nothing. Mine were never even that big, I just don’t care for them. And bras are the worst.

        1. Really? I didn’t know that. Thanks for the information!

          My experiences with “tomboy” and “butch” are almost completely from movies, and probably full of holes.

  20. As a nurse I’ve had to follow procedures that were well-meant but negatively affected my patients (for me it was sending people with dementia 3 letters for one appointment until we had sufficient evidence that it was causing confusion and panic). If you put your concerns in a letter, your health team have the evidence to say that at least some people don’t like being hassled about reconstructive surgery (and it’s not that the doctor is too lazy to bring it up or the nurse can’t face difficult conversations or whatever).

    As a minimum they should change in how they consult with you but you might influence policy and help other people out too.

    1. So true, (not to say that you LW have to be the trailblazer for something that’s distressing you – you do whatever makes your life easier in this situation). But absolutely when you raise issues like this odds are it’s been bothering other people too.

  21. Longtime lurker. Not sure if I’m even wordpressing right.

    OP, I am so glad you are doing well, and are pushing back against people demanding changes you don’t want to make. I really sympathize with this problem. The captain’s advice is excellent (as always), especially if you want to keep things polite. I don’t know how many specialists or offices you’re dealing with, but if it’s only a couple, prominently inserting the info into your file makes sense. IME though, especially re. long-term care across several providers…it is often clear that they haven’t even read my file, and if I’ve given consent for doctors to consult to help coordinate my care, they sometimes…just don’t. At that point, I would skip straight to blunt or even changing doctors (if that’s possible given your needs, location, and means).

    For me, this dynamic boils down to a) the doctor is not even listening to what I’m saying, or b) they have already decided that their expertise makes my personal experience and insight somehow inconsequential. At best, they are adding labor to a process that is already exhausting, complicated, and expensive. If your doctors are not listening to you, that is a big problem in and of itself.

    I keep trying to write helpful scripts for you, and none of them polite. Some possible sharper options, short of shouting/storming out:

    “You’re clearly not listening to me.”
    “This information is in my file, which you are convincing me you have not read.”
    “Stop bringing this treatment up. I am not interested. Period.”
    “I already said this plan won’t work for me, and you need to accept that.”
    [hand you a leaflet] “Oh good, kindling.”
    “I heard you the first time. Now you hear me.”
    “I am considering changing doctors, since we keep wasting time on this topic and only one of us is getting paid.” [I sometimes even go so far as to pretend I have someone else lined up, as if I’m fighting an obscenely high increase on my cable bill. Getting people off script often takes some serious wrenching].

    OP, you mentioned that you/women are trained to be polite and accommodating–harness that awareness. These people are not your friends. You have a business relationship with them, even though that business is intimate and personal to you. Their feelings are in no way your responsibility, and they are dumping extra work on you in already stressful circumstances. Your feelings and mental health are no less worthy of care than your body, and the present you have or future you envision for yourself does not need to be rubber stamped by someone in a white coat to be valid. I just want to say that if politer scripts don’t produce enough change, you don’t have to stick to them. I am a very conflict-averse woman, and disagreeing strongly with doctors makes me feel stupid, and presumptuous, imagining my mother’s silent disapproval. That doesn’t make it the wrong choice, but it does take practice to override those impulses. idk, I’m still working on it.

    wishing you the best.

    1. “OP, you mentioned that you/women are trained to be polite and accommodating–harness that awareness. These people are not your friends. You have a business relationship with them, even though that business is intimate and personal to you.”

    2. What helps me stand up to doctors is to know that they know the generalized knowledge. I know my body better than they ever will. If they’re not treating me specifically, with all the quirks of my body, and instead are generalizing, they’re not doing their job effectively. If they’re not doing their job, why would I not bring it up? Doctors are not gods, as much as some seem to think they are and expect patients to act accordingly.

      1. agreed.

        I sometimes fear hitting the opposite end of the scale, where parents turn into anti-vaxers who “know their child best,” but doctors should be using their expertise to help the patient make choices, not to play puppeteer.

    3. This is an argument I have to have frequently with my doctors. I am an EXTREMELY conflict-averse person in meatspace, to the point that I seldom speak up for myself unless something has gone very very wrong.

      A few years back I was diagnosed with a non-malignant tumor that has absolutely wreaked havoc on my endocrine system. To the point that I now have to take a steroid daily. Residual effects from both tumor and treatment make it appear that I have diabetes. Because of all of this, I have reached the point with every doctor I see that the first thing I tell them is:

      I am AWARE of my options with regard to [diabetes-related topic]. I have [Condition X] as shown on my chart, and I am not here to talk to you about [correlative but not causative symptom]. I am here to talk to you about [whatever I’m really there to see them about].

      And if they bring up the other topic, I have gotten very good at saying, “That Is Not Why I Am Here. Please address my actual concern, which is [X].”

      I’m also not afraid to fire a doctor if necessary. I hate doing it, because it means finding a new doctor and doing the whole dance with them again, but I will.

      YOUR NEEDS MATTER. This is YOUR body, of which you get ONLY ONE.

      I know how it is to be a people-pleaser, and I know how difficult it is to say “These are my needs” because of the nasty little demon that sits in the back of your mind going “WHAT? How dare you have needs? How selfish!” But in this case, you are absolutely ENTITLED to that selfishness, because (I reiterate) you only get ONE body. Care and feeding of that body is up to you. And you have lived in it for however many years, so no one knows it as well as you do.

      Also, I completely feel you about not wanting to spend any more time in surgery/in the hospital/in doctors’ offices oh, yes, precious, we do.

      Also, eternal teapot — I once fired a doctor who, when handed my initial letter explaining my medical situation, told me she “didn’t read.”

    4. I like your scripts. think some other helpful, also slightly sharp scripts for OP are:

      “I said I’m not interested. I did not say that lightly. It is time to move on.”
      “I’ve already said I’m not interested. What will it take for you to hear that?”
      “Reconstruction is definitely not for me, I am done talking about this.”
      “I need you to stop trying to solve a problem that doesn’t exist. Let’s move on now.”
      “I’ve been very clear that I am not at all interested in reconstruction. Why are we still talking about this?”

      OP, Practice these out loud in a mirror or with friends, so they roll off the tongue easily. This will make them way, way easier to say when you need to. Saying them in your head is helpful, but saying them out loud is about 100 times more so.

  22. LW, having never seen you ever, I can say you’re beautiful because (mostly)happy people generally are quite beautiful. And bless your supportive loved ones, too.

    “I suspect (but do not know for sure) that the answer has to do with insurance & money”

    Captain, many things in this world can be explained away by money – and in this case insurance is a subset of money.

  23. LW, congrats on being cancer-free, and also on having the clarity to know what isn’t right for your body.
    It sounds like you’re dealing with the next level super saiyan rebirth of Doctors Not Listening to Women, and I wish all the best in holding on and getting heard.

    No concrete suggestions from me, just solidarity and feathery hugs if you want them.

  24. LW- being a people pleaser is hard. As a fellow people pleaser who was continually taught my feelings, thoughts, reality aren’t valid unless someone else says they are- YOUR VIEWS, REALITY, AND WANTS ARE 100% VALID. One thing I learned is “don’t let the neighbors dog shit in your yard.” I think of boundaries like a fence, some are small and dilapidated, others strong and tall…. These can change depending on who wants in our yard. If you have a neighbor who comes in with her dog and she smiles and chats with you all caring and sweet while simultaneously letting her dog shit in your yard while she picks your fruit without consent- you have a right to get angry, frustrated, and stop being polite.

    These medical people are crossing a line and doing something similar. Maybe with great intentions…. but I’m sure it gets old real quick and if it is impacting you so deeply- they are essentially letting their own values shit all over yours and you have a right to shut that down. I love the idea of a letter…. I hope that seems like a good fit for you. I just wanted to share how much you have a right to assert yourself and even though you are probably going to feel like an asshole for setting the smallest of boundaries- you aren’t. And if they continue pushing- just know they are the assholes.

    I wish you great adventures and happiness. I hope the letter is a success…. If not, ‘don’t let the neighbors dog shit in your yard’ ❤

    1. I love your fence metaphor. You can close the gate or open it depending on the person, you can rebuild a small or dilapidated fence… but it delineates a line that shouldn’t be crossed regardless.

      1. There is a reason for the phrase, “mending fences.” Strong fences make for good neighbors.

        I’ve heard some people argue that, saying that fences get in the way of friendships, and should be abolished. These same people get all up-in-arms angry when someone stomps on THEIR boundaries.

        Fences. We all need them, whether they be real or figurative.

        My neighbors respect the property line, and a fence isn’t necessary as more than a simple marker. But I’ve had neighbors who had issues with their other neighbors (two doors down from me), and actually built a second fence on top of their existing fence (chasing it from a 6 foot fence to a 12 foot fence – solid wood, no peeking), because it was the only way to enforce the boundaries with those neighbors. Coincidentally those were also the neighbors who were so notorious that when my Dad got pulled over for speeding, the police officer looked at his license, and said, “Oh, you live next to THEM. I’ll let you off with a warning, because you have enough troubles.”

        That twelve-foot fence actually added a noticeable increase in the level of peace and quiet in the neighborhood. But then we got some neighbors who didn’t need anything more than a flower border to mark the territory. Lines are good, when it comes to human interactions. Clearly delineated lines.

  25. OP, I’m very glad you’re healthy. I’m not a cancer survivor, but as a transgender woman I have had repeated frustrating conversations with doctors who didn’t think I was doing gender the right way. And I think that’s contributing to your harassment: some new doctor sees you and thinks it’s wrong for a woman not to have (prominent) breasts and so makes sure you know surgery is an option. “For your own good”, that is, so you can better confirm to gender norms.

    My own case is that I’m a male-to-female transsexual – pardon the old-fashioned language, but it’s associated and accurate. But I haven’t had and am not interested in genital surgery, and my personal style is not very femme at all. (Makeup? You want me to put slime all over my face? Every day?) So every time I see a new doctor they ask – or just assume – where I am on the progress towards surgery. I have to patiently explain that I have a body I can live with, if they’ll just fill out that hormone prescription. Even if it’s not about surgery, they often assume since I’m not wearing pearls and a twinset I’m still at the confused beginning of the transition. This is common enough that I make a point of wearing a dress when setting a new doctor, in hopes of getting better assumptions.

    I’ll also add, it’s easy to say “find a new doctor” but rarely have I lived anywhere there was more than one group with the specialist experience to treat transgender people. I’ve been stuck with bad care because the alternative was no care. So advice on how to make the best of the doctors you have is very apropos.

    1. I’m supporting someone who feels the same way you do, and it didn’t occur to me that that would be an issue, so thank you for sharing something so personal; it alerted me to a potential thing I’ll argue doctors down about.

    2. I once had an online-acquaintance who was male-to-female butch lesbian. She got a lot of flak for “womaning wrong,” too. Also a lot of ,”Well, if you want to dress butch, and date women, why did you even bother to transition?”

      Because she wanted to feel comfortable in her own body, that’s why.

      Also of note: She got flak from certain feminists, because of her “male privilege,” and the assumption that she would feel male entitlement to the women she dated (like the creepy stalker dudes of previous letters, who thought the women they wanted owed them “a chance” or twelve). But she was, in fact, quite respectful and not at all creepy or entitled. At least, never to my knowledge. In short – damned if she did, and damned if she didn’t, by someone or another. She just had to learn to be strong and live in the world as best she could.

      Good luck and Jedi hugs!

      1. Damn, hadn’t Trans-Exclusionary Radical Feminists gone extinct already? It’s 2017, for fuck’s sake, transphobia and transmysoginy in feminist spaces should be a thing of the past!

        1. This was my first experience with a TERF. I think it was three or four years back, but I’m not sure. I’m not very good with dates in my own past. Once it’s earlier than last week, it’s all just general “past,” and very hazy.

          A couple of years back, I witnessed a major schism in a feminist space, where the TERFs asserted themselves, and basically the rest of the group threw them out, as rather a large portion of the group came out (within that group space, not necessarily anywhere else), at the same time, in response to the TERFs.

          It was quite educational for a cis-woman who had almost never given transsexuals much thought, at all. Really highlighted my privilege.

    3. “Even if it’s not about surgery, they often assume since I’m not wearing pearls and a twinset I’m still at the confused beginning of the transition.”

      Hah, I’ve had something like this recently too. I’m finally getting some mental and physical health stuff taken care of, and I have a great set of doctors (so far) who ask my pronouns upon intake. I say something like “ugh, they is fine but I don’t have a preference” and they all write it down with a knowing smile and say “ok, we’ll get back to that later!”

      I’ve been on the gender ride for close to ten years at this point, I consider myself post-medical transition for the most part, and if I had a pronoun preference I would probably know by now!

  26. If you’re not sure how good a place will be about reading your file before stepping into the room with you, you could try bringing several copies of the letter (or a modified form of it) with you to hand to everyone you might spend more than 2 minutes with.

    Feel free to add other stuff to it as well. There may be other annoying but less loaded conversations that medical personnel have on their checklist that you can preempt. They pretty reasonably think the worst thing is that you want a procedure and don’t find out the option exists in time, both for your sake and for the sake of lawsuits, but they don’t know whether they’re the first or 50th person to check.. (*Waves to the two doctors, nurses, and interns who made sure I hadn’t forgotten to circumcise my son before leaving the hospital.*)

    1. I think pre-emptive handouts are a great idea. “Here’s my card,” and hand them a 3×5 card with the most pertinent facts about you and your medical needs. If they can’t be bothered to read that before they jump into their own spiel, then you can know IMMEDIATELY not to bother with them, and just walk right out, and not waste time. And the ones who will respect your needs and desires will appreciate that you saved them time by pointing it out, right at the get-go, rather than making them draw it out of you.

      Also, if it’s written down, then it will be easier for you, no matter how hard it is for you to speak up, because no speaking is required. You design and edit your words when you write them down, so they say exactly what you want to say, and how you want to say it, and then let those written words speak for you. Scared, quavery, quiet voice? No problem!

    2. It could be helpful as well to go in and say, ‘I’d like to say at the outset that doctors very often recommend reconstructive surgery to me, I’ve considered it carefully and decided against it, and to be honest it’s come up so many times that I’m really tired of hearing about it, so can we consider the subject unnecessary for this appointment?’ That way they can’t miss your point, and you won’t have to spend the appointment worrying if they’ll bring it up.

  27. Ugh. BRCA1, Triple negative, double mastectomy and oopherectomy, DIEP flap reconstruction here.

    I wanted reconstruction, but my fight was with the doctors who kept checking to make sure I didn’t want to freeze my ovaries. I was 41, the cancer was genetic, I have PCOS and have known since I was 19 that I would be adopting if I wanted kids.

    And then there were endless questions about whether or not to save one breast or just take the tumor (it was massive but never spread) and leave the breast. I knew I wanted them gone, and I was clear about that from day one.

    At least those were over once the deed was done. I’m sorry that you might be stuck with this for a while.

    The really sucky thing is that a lot of the time the questions are just sort of assembly line. It doesn’t matter what we say or what’s in the file, the people who have been doing this for a while often have a mental checklist.

    The one that was most irritating to me overall, was the nurse at the oncologists office that would run through her checklist and ask me if I’d done my self exam yet that month. She did it every time I went in there.

    1. I am still in the treatnent stage of my BC and have had single mastectomy and now chemo. I would have liked to have had double, but since all I heard about was reconstruction options, I didn’t realise it was an option. Also I didn’t get to see the surgeon between getting my diagnosis and having surgery so there wasn’t any good time to bring it up.
      Like the LW I realised I am happier flat and am now trying to get them to take the other side too – I don’t really want more surgery but I really want the other one gone, especially as I now realise I identify as non binary.

      1. I’m a BC survivor, and apparently I did things slightly out of order due to being in a drug study. My boob was donated to science. Chemo->surgery->radiation for me instead of surgery first. How did this change things for me? I was a visible cancer patient for about six months before my surgery. I kept getting hugged by other breast cancer survivors and then as my price for the surprise hug (ask first, damn it!) I’d ask them about their surgery. Did they have a single or double mastectomy? Did they have reconstruction or no? Were they happy with their choice?
        My small sample size & very unscientific survey indicated that most of the happy ones were happy that they were symmetrical. People who ended up not symmetrical felt conspicuous, and getting prosthetics to match a natural boob was hard and it didn’t stay matching as the natural boob changes over time.
        I opted for a double mastectomy and held firm on that. Then, after all the treatment for the cancer was done, I discovered that I didn’t really miss the boobs much. I have a set of prosthetics that I have worn twice in nearly four years. I kinda miss the nipples sometimes, but, the part I miss is the feeling, & that’s something the reconstruction is vanishingly unlikely to give me. They reconstruct for looks. It won’t feel right.
        I’m lucky in that I haven’t gotten pressure to reconstruct. They mentioned it about the time most women start if they are going to. I said no. Apparently my doctors read and remember that well.

      2. Maybe a weird place to put this, but have you ever seen mastectomy tattoos? They’re a really cool thing to know about, even if not something you want yourself.

    2. I don’t mind checklists, if the person comes right out and says, “Sorry, but I’m required to run through the checklist. Let’s get this done, and then we can get down to your individual issues.” The more automated doctors offices become, with computers that are programmed a certain way, the more this will come up.

      At my last doctor’s visit, the PA entering data complained that EVERY SINGLE TIME she accessed the patient file for me, the computer popped up with “insulin,” because I have diabetes. But I don’t take insulin, and never have. But the computer program sees “diabetes,” and automatically goes to insulin, and they have to manually “opt out.” Every time.

      So, checklists? I blame the programming, not the people. But when the people buy into the checklists, that’s when it becomes a problem for me.

      Attitude, and seeing their patients as people, not meat-bags, is everything.

      Also, I LOVE my current doctor, and staff. Thanks, all, for reinforcing my gratitude, today.

    3. @sony_b, having the nurse ask about your self exam has to be maddening. I had a hysterectomy earlier this year (Hooray! *waves pompoms*) and I’ve already had the checklist question “when was your last period?” come up a couple of times. Seems like the medical records should have a No Longer Relevant setting programmed in for some of these checklists.

      OP, it’s really okay to tell doctors “No. I don’t want to do that,” instead of giving a soft no. When I was pregnant with Thing 2, my OB/GYN wanted me to take a standard test that made me really sick when I was pregnant the first time. I soft pedaled a couple of times and then finally came out and said I wasn’t going to do it. The doctor respected my decision and it didn’t come up again.

      1. Oh god. I get that too. They took my ovaries at the same time as my mastectomy. Same people, ask me allllllll the time.

  28. LW, I get the feeling you’re saying to yourself, “If I had known life could be this good without breasts, I would have chopped them off *years* ago!”

    As a big-breasted woman, myself, I know about the pain and awkwardness they entail. Sure, men tend to love them, but they are rather inconvenient, at times. Personally, I do love my breasts, but I recognize the awkward inconvenience, and if I had to lose my breasts, I’d probably embrace my “new body,” wholeheartedly, after a brief adjustment period. I’d say you’re having a really healthy response, making gallons of lemonade with the lemons life gave you.

    So, why not tell them, straight up, before they start? When you go in for a check-up, take 10 or 15 seconds to enthuse about the joys of being flat-chested, right at the beginning of the visit. If they have a reason, such as financial coverage, they may be obliged to bring it up, but their attitude when they do it will likely to change to an “I have to say this, and you probably don’t need it, but here’s the information for you,” instead of “Have you *considered*…?” which is annoying as heck the twenty-seventh time.

    Good luck! And never feel that your body is wrong. Your body is just fine. It’s our culture’s attitude about it that is wrong.

  29. I love the letter idea. As an admin, my suggestion is to contact the office staff and ask them the best way to get this information into your file and to get it *actually read* by the staff. It might be a letter. It might be a letter that contains particular phrasing. It might be a form they can email to you. It might be something you can do online if your provider has online services. Whatever it is, the office staff will either know or will be able to find out.

    When in doubt, ask an admin. 🙂

    1. Good advice! As a former admin, I can confirm that asking an admin will almost always lead to the best outcome. Unless the admin is an absolute jackass, in which case, you should alert the powers that be, so they can move/retrain/replace the jackass admin, who is damaging their office. But admins KNOW. Admins DO. Admins can pull off feats of wonder, given the chance, and most of the time, they love to do it, because it makes them feel like Rock Stars. Or maybe that was just me. But seriously, I have witnessed other admins doing the Rock Star “how did you even DO that?” magic. Tell an admin the result you want, and they will usually be able to help you find the path to get that result, even if it is the path less taken.

      Also, different offices will do things differently, so as annoying as it is to repeat the process for each office, I do recommend repeating it for each office. Just as YOU want to be treated as an individual, you ought to treat the practices as individuals, with different policies and procedures that work for them.

      Each office’s admin will be able to guide you, to help you have the most effective experience with them.

  30. This is very common, and it’s so annoying. I had a single mastectomy with implant reconstruction. My dr offered to do a small lift on the other side to make my breasts “match” better. I declined, as I didn’t (and don’t) want more surgery, no matter how minor, and it’s not like they will ever truly match again because one is real & one is fake, and I decided not to get a new nipple on the fake one because that’s a separate procedure and I realized I was just *done*. And I’m fine with how it all looks, as fine as I could be considering I had cancer & lost my boob. But my plastic surgeon brings it up every time, even if it’s just to say (annoyingly), “oh, I think you look great even though we didn’t do the lift.” I haven’t said anything to her, and now I don’t see her very often, but if she says it again, your letter has inspired me to speak up.

    Anyway, I think plastic surgeons are just obsessed with giving you what *they* think is the best option. I think the Captain’s idea of putting it in writing is good.

    Also, just to make a correction to CA’s answer –as of 2 years ago when I had surgery, there was no limit to how long you could wait before having reconstruction. Insurance companies are required to cover it even if it’s years later. Who knows whether that will remain the case, but my docs (at one of the US’s top cancer hospitals) were very clear on that. So there’s no financial reason for them to bring it up again & again.

    Plus, that type of reconstructive surgery you mention is no joke! I declined it after about 10 seconds of thought. No thanks, no interest in having major abdominal surgery along with chest surgery.

    LW, good luck & be well!

  31. Yes having had a double mastectomy in 2009 and choosing not to have reconstruction I was flabbergasted at the lack of info out there around dressing for flat figures. I too see it as a body shape and like not having to em wear bras. And people rarely notice my lack of breasts. And there is the option of wearing pro thesis when desired.
    There is a Facebook group called fabulously flat. And somewhere a website by a woman who choose not to have reconstruction. Will post link when find

  32. Dear LW,

    First of all I just wanted to cheer you on. You have gone through stressfull times, painful medical treatments and many other things many of us cannot even imagine – and you survived. Reading your words about your body, how you are happy in it and how you prioritize function is awe inspiring.

    I am sorry to hear about the repeated comments – no wonder that they build up pressure coming from people who are in the position of medical authority. The Captain’s idea about writing a message and the idea about bringing printed letters with you when you are meeting with your doctor(s) sound very good. Hopefully you will not feel pressured again – and even if everyone do not read it before meeting it you can always refer to it. Hopefully that will minimize the necessity of repeating the message over and over again. Is there anyone among your doctors you particularly trust, someone you could visit and tell them this particular worry? I do not know how the computer programs related to medical care work in where you live but if this kind of doctor exists, could you ask them to make this note with you to your file so that you know it is there and should be available to everyone taking care of you? It sounds awful that you have to worry about a thing like this.

    I am a very privileged person, in a way: I do not live in US but in Northern Europe and here we have public healthcare. That does not mean, though, that all my experiences with medical personnel have been happy. Unfortunately, not all doctors are blessed with good social skills and empathy. So far I have not personally experienced breast cancer, but I know many people who have and they have told me that the pressure for reconstructive surgery exists here, too; many have felt liberated without breasts for the same reasons you described but yet been pressured repeatedly to reconstructive surgery. I do not believe this happens for money in here; the doctors get paid the same amount whether they perform these surgeries or not.

    People have began to fight against the culture where having breasts is strongly connected to being female: they take beautiful tattoos to their chest – and also new kinds of clothes are designed. Many articles were written about these monokinis a few years ago in here: http://www.monokini2.com/

    I wish people who have just survived strenuous medical treatmens did not have to fight and keep repeating themselves in order to be seen and accepted as they want to be by the doctors and nurses who treat them. May you have lots and lots of strength – and be proud of your awesome body!

  33. Ugh, I’m so sorry for your experience, LW! To survive a previously-deadly disease and then feel endlessly harassed by the providers who helped cure you is terrible. Here are my suggestions from my own experience, as someone who has seen a ton of specialists for a mystery chronic illness.

    Not all doctors will actually read your chart before seeing you, especially the hyper-specialized. I once saw a neurogastroenterologist. They made me arrive an hour early with my pre-filled out paperwork. The doctor walks in with an empty folder and asks me why I’m there. Infuriating, and he refused to see my further when I would not repeat a test that went poorly for me. That kind of doctor does not see patients, he sees diseases that happen to inhabit bodies. I found the only other person with that specialty in my region and saw her instead. For those kinds of doctors, that is really your only choice.

    I really encourage you to ask why the surgery keeps being brought up. Doctors who practice evidence-based medicine should be able to tell you, in detail, why they do so. In my case, I was being pressured to take a certain medication that I’m not comfortable with, and I asked why — science shows it is highly effective for someone with my symptoms. Fine, we’ve had a consult on it, show in my records that I’m not interested and don’t bring it up again. That practice complied, and I’ve stuck with them.

    I would suggest telling the medical professions that are bringing this up that they are damaging your mental health by doing this. That will hopefully shake the provider out of rote checklist mode and into compassionate provider mode. Even if the provider is a specialist, they need to care about treating the whole you. I wish you the best!

  34. Ugh, I’m so sorry LW, pushy and oblivious doctors are the worst.

    I had a bad experience recently when I went to my GP practice and saw a different doctor than usual, to get a doctor’s note about being off work sick. He saw a note in my file about not needing pap smears. He asked me about it and I said my usual Dr has said it was unnecessary because I am not sexually active. I then tried to move back to the subject I had come about, but he would not. Fucking. Let. It. Go. He asked if I had ever been sexually active. No. He then talked about what “sexually active” means, “it’s not just penetration” and something about same sex etc. I could just see his brain working, like he couldn’t figure out why a woman of my age would say I’m not sexually active and never have been. Clearly I must be confused about what sex is, or lying, or a lesbian!

    It was bizarre, and creepy and humiliating. I eventually got him to give me the doctor’s note for work, and when I got home I wrote an email the practice saying how utterly inappropriate this was and how uncomfortable it made me. I surely won’t be seeing that doctor ever again.

    (Note: I am 1000% not interested in discussing the benefits of pap smears in this thread. Thanks!)

    1. Are you my twin? I also had that doctor except he kept pressuring me to go on birth control “just in case”. I’m an asexual aromantic gal who also has personal convictions regarding sexuality. It will not happen. But the doofus wouldn’t believe me. (I still didn’t do what he wanted- stubbornness is one of my most useful traits haha- but it really made me distrust any advice or recommendation he gave since he wouldn’t believe me when I told him directly what I did or did not do.)

      LW, as you can see it isn’t just cancer docs who act stupidly. I think the Captain has given great advice (as have a lot of commenters). You are okay; it’s the medical folks who are doing it wrong.

    2. I think I’m a triplet here XD I’m asexual aromantic and ON birth control because hormones!! And pap smears still aren’t necessary. I’ve only had good doctors about it as an adult, luckily. The nurse I got when I was 15 for a cold who I had to argue with, though, that was a pain. (Because who needs medicine actually based on evidence, right?)

    3. Ugh. That’s giving me flashbacks to the stupid clinic for students at my university when I was in grad school. If you were female, no matter what the actual reason you were in there, they’d ask if you might be pregnant. Injured eye? Are you possibly pregnant? Hurt foot? Pregnant? It was beyond annoying.

  35. Sorry to hear your woes LW. I’m not sure where you are or who you are seeing, but I second Captain’s suggestion to make it very clear you are tired of the question. I’m a medical oncologist almost done with training and I can understand maybe providers have a checklist they are going through in their mind but if it’s the same providers there’s definitely a point at which they should not ask the question again if you’ve said you’re not interested (unless you said you were not interested for [Reason] and [Reason] has changed). I think it’s perfectly understandable not to want to go through cosmetic surgeries if you’re feeling fine. (And to be extra clear, I think it’s understandable if other people do not feel fine and want the cosmetic surgery.) As a medical provider I’d appreciate it if a patient flat out told me “hey, please quit asking me that I’ll bring it up if I want to talk about it” and I’d make an effort to do so.

    … come to think of it the main thing I probably nag people about is smoking but I’d drop it if they told me to.

    1. … come to think of it the main thing I probably nag people about is smoking but I’d drop it if they told me to.

      Please just stop by default. Unless you’re in an area with extremely poor exucation and no mass media, I promise that everyone knows that smoking is harmful. Not everybody considers whatever you or society generally think of as optimal health to be a top priority (I think that this in particular can be difficult for doctors to understand, since many of you went into medicine at least in part because you DO consider physical health to be extremely important). If there is a particular problem for which someone is seeing you that night be linked to smoking, go ahead and mention that, but as a primary care physician, mention it once to do due dilligence and never again, and not at all as a consulting physician unless it’s directly relevant to the reasob for the consult/referral.

      1. Yeah I’m seeing people for lung cancer and/or who may be undergoing surgery; smoking cessation can improve outcomes and further people often don’t know what resources we have available. Further it’s generally been shown that one’s physician saying X is unhealthy can have some impact. We give many drugs for the same reasons; this is a non-pharmacologic intervention. I’m not going to go into much detail as it is a derail, but while people may know X is harmful, what level people really know about it is and what can be done to change is TOTALLY UNKNOWN TO ME unless I actually ask about it.

  36. I’m a young BC survivor, and BRCA 1. I kept running into a slightly similar issue with my gyn’s office asking me about my last period, and me reminding them that I no longer have ovaries. After I spoke with the doctor about how upsetting I found this, I believe they put a sticky note on my chart to remind them not to ask.

    (In case anyone is interested in the financial aspects of reconstruction, my understanding of US law since the the 1997 Women’s Health Act is that breast reconstruction (and subsequent revisions) after breast cancer must be covered, at any point in time.)

  37. I am a trans guy who is very pushy about this stuff, after a bunch of gentle non-pushy responses fail to get me anywhere. “No, sorry, I’m not a woman, you cannot address me as Miss Bird or Jane. I will not receive non-emergency care from people who don’t address me appropriately, especially because I have tried to put this in my chart already. This appointment is cancelled. You will fix my chart and I will reschedule this for another day, or I will leave and find another provider.” And then I get my jacket or bag or whatever and they say some words and sometimes another appointment happens and sometimes it doesn’t.

    I work with computers and I know it can be hard to keep records organized, but if you can’t do that I’m not about to let you poke around my teeth or whatever. I also live in a large enough city that “I’m gonna see someone else” is a sincere description of where this is going, and I want their office to know that’s why I’m bailing.

  38. I’m so sorry to hear you’re dealing with this. It is, sadly, as I understand it, a common problem. I ran into it when I was hit by a car on my bike (the worst time) and both the ER doctor and clinic doctor at the followup visit gave me the hard sell on plastic surgery to minimize my facial scarring, to the extent that the clinic doctor scheduled an appointment with a surgeon over my explicit objection (I canceled it immediately after leaving).

    The explanation I’ve gotten from friends in the medical field is that they do this to statistically minimize the risk of legal liability because there are a lot of litigious assholes who sue doctors for doing what the patients say they want if it doesn’t result in the desired outcome, reinforced by a bias toward normativity. It’s the same reason many doctors will refuse to give uterus-having people IUDs if they haven’t procreated or will try to sell parents on male infant genital cutting (in USA) or will heavily pressure parents of newborns with intersex conditions to have gender assignment surgery and hormone treatments.

    If the polite refusals are ignored, threaten a lawsuit. For the extreme boundary-pushers, this is sadly often the only thing that will work to enforce the boundary, since it’s often exactly what they’re trying to avoid.

  39. As a medical professional, the best tactic to set boundaries with your medical professional is to understand the nature of informed consent.

    The main current standard in bioethics seeks to grant the patient the highest degree of autonomy possible which is the one laws currently endeavor to support, and whose maximum expression is the requirement of informed consent. For the consent to be informed, the patient needs to be in a condition to understand the information provided by the health professional, the information provided to be adequate, and for the patient to have the ability to make decisions.

    If these conditions are met, it does not matter what your doctors believe or think could be better for you. It’s your body and your life and you are allowed to do as you please with it, sometimes even when unconscious thanks to certain documents (which I advise everyone to take a good look at, it’s definitely worth the time) except in life or death emergency situations where doctors are under the obligation to attempt resucitation and saving you.

    Plastic surgery is among those surgeries that require the highest level of consent possible, and one from which you may withdraw it for any reason whatsoever. Levels of consent required vary depending on the operation and how life threatening the condition is, but if it’s not essential to your health there is zero reason to insist on it. Long gone are the days when doctors were the ones who told others what to do with their bodies. You are the boss of you, and you have the right to be provided with accurate yet understandable information on the subject (the onus is on the doctor to ensure you understand and not use jargon if you are not trained in the medical field).

    As long as you understand the above, you can set boundaries and trust me, there is no need to please doctors. We simply do our jobs. Doctor pleasers in fact only give us more headaches than anything else, we are the last you need to please with your choices. Some cookies or a chocolate bar or something will do the trick, and make your choices and stick to them unless there are reasons to change them. Your life, and even your doctor’s will be all the better for it.

  40. Dear LW,

    First, congrats!

    I love the idea of sending doctors’ offices an email to be included in your file. I also like the idea of bringing a paper copy.

    My mother brings her list of conditions, medications, and procedures to new doctors. The offices appreciate the effort she’s made. This is true even though most of her doctors are at the same hospital and theoretically have access to all of this.

    I really feel you though on medical professionals pushing plastic surgery. I had a smaller version of it years ago when I survived a severe abcess and systemic infection (yes, deadly flesh eating bacteria). I had a hole in my leg that was going to heal eventually. Plastic surgery could, probably, help with the inevitable scar. I wasn’t interested. The doctors wouldn’t shut up for months.

    The good news is that doctors do eventually listen.

    Jedi hugs if you want them.

  41. I have not had this particular problem, but in dealing with repetitive, systemic problems I’ve had good success following the Captain’s advice to “Ask the person the best way to make sure that this information is visible to anyone who treats you.”

    Specifically, to recruit the person to be on your side, and help and advocate for you.

    “Listen, can I get your help on something? I am 100 percent sure I don’t want any more surgeries that can possibly be avoided. Reconstruction is off the table. But I keep getting asked about it, to the point that it feels like pressure, personal insults, and it’s really upsetting. I’ve dealt with enough, I don’t want to get beat up over my decision at every single office visit. How can we make it stop?”

    Helping people like to !help!
    Sometimes when you redirect their !helping! impulses in a constructive direction, it can pay off.

    1. That also reframes it as “we are a team and I need your help” as opposed to “I am fighting you on this”.

      It’s like the kinder, gentler version of forced teaming. I used to do it all the time when I was a research moderator and I had participants start to get a little aggressive with me because I had to ask them to do something tedious or annoying (nothing scary, just like “read this list of words out loud”) — I’d try to frame things as me and the participant against the faceless person running the study (up to and including times when I had myself designed the study, but they didn’t know that).

  42. ..my brain translates it into, “You are not okay the way you are, and your choice is not a valid one and your appearance is not acceptable. You are BROKEN. Let us fix you.”

    I don’t have a lot of helpful advice here, so let me just say that you are 100% okay the way you are, your choice is completely valid and your appearance is a) perfectly fine and b) none of your doctor’s goddamn business. Their job is to make sure you’re healthy, not to make sure you conform to society’s expectations of your appearance.

    Honestly, as soon as I read the first paragraph of your letter I was thinking that if I had survived cancer, I’d never want to see the inside of a hospital again. I don’t know why that’s so hard for people who see the effects of cancer and cancer treatment firsthand to understand.

  43. I work as a physical therapist. I used to periodically offer one family I work with a large piece of equipment (a patient lift) to help them move their large and growing child. Wanting to be helpful and not overlook something that might be needed I offered again every few months until they finally told me they were well aware of this equipment and did NOT want one as they have no room in their home. Oh. I had merely been trying to be helpful. Sigh. I apologized for not clearly understanding them sooner and i don’t ask anymore!

    My point is that the medical staff you encounter might be merely trying to be helpful/ not overlook something and just don’t understand that you are actively choosing to take a pass on reconstruction. Try being blunter, the letter is a great idea!

    Also, most medical records are now electronic which means that there is a ton of information in there. A ton. So, you could have clearly declined reconstruction in the past but this information may not be that easy to find. Just a thought. Again, I like the letter idea as this will alert them. I’m sorry this issue has been painful for you!

  44. Breast cancer is something I’ve thought a lot about as I have two sisters who are survivors, who have had between them three different types of cancer (one of them had a lumpectomy and one had a bilateral mastectomy and eventual reconstruction). When I found out that most people lose their nipples, that took away any desire I had to have reconstruction. I don’t think I would want to have breasts that just filled out clothes, if they didn’t have the sexual sensitivity. I would rather have the various benefits of being flat-chested. Of course I have no problem with others making different decisions (and I have not said one word of this to my sisters), but I think that is where I would be. (Note: we aren’t carriers of any of the BRCA genes that get tested for. I think it’s just coincidence. Also I am at somewhat lower risk of premenopausal BC than they were due to having given birth and breastfed. Roll on, menopause.)

  45. No additional advice from me. Just… I’ve survived some gnarly, painful, life-altering medical crap too, and I want to offer ALL the Jedi hugs.

    1. Actually, as soon as I got done posting that I realized that I did have some possible additional advice. Some of the gnarly medical crap I’ve survived involved losing my infant daughter due to something going wrong during childbirth. So I’ve learned that saying, “I’m sure you can understand how painful this is for me to talk about” is a good way to shut people down if they are offering unwanted suggestions / asking intrusive questions / etc. I have no qualms about dumping some of that Awkward back in someone else’s lap, and even exaggerating exactly how emotional I might feel about it in the moment to get the point across. Because honestly, even in the medical profession, people generally suck at dealing with raw grief, so it tends to help me enforce a boundary if one needs to be enforced.

      So I’m wondering if a script like this would be useful: “I hope you can understand what a difficult, scary, painful experience it was to have such a serious form of cancer. I am really hoping to put that chapter of my life permanently behind me, and for me that means no more breast surgeries.”

      1. Or maybe, “I hope you can understand how demoralizing it is to have you keep pushing reconstructive surgery on me, especially when I am so happy with how my body feels now, and I’m enjoying not having boobs. I know you wouldn’t want to cause me stress, so please don’t ever bring it up again.”

  46. I’m sorry you are going through this, OP. As a fellow double-mastectomy sufferer, I get it! However, remember that your doctors and nurses see you a couple times a year and you only recently became eligible for reconstruction. They are actually trying to make sure you are getting all the information, and frankly, most women want to get reconstruction. (Not getting it is a totally valid choice! I’m just saying they see a lot of the other choice so it’s normal to assume you want to know when you could get done.) If the doctor talks to you once, the nurse once, the PA once, that’s three times already, and they see so many patients that they might not remember they talked to you, or you might have been noncommittal.

    I’d say once more that you currently have no plans to do reconstruction and appreciate knowing your options, but that you will bring it up if you want to, and would they put that in your chart? Let go of being angry or offended. Good doctors want to give you information.

    1. Not sure it’s helpful to make generalizations about what “most women” want when the LW has already stated she’s feeling accused of Not Womaning Correctly by virtue of refusing the surgery.

      And I’m 100% sure it’s the opposite of helpful to tell someone to “let go of being angry or offended.” Feeling negative feelings is already pretty awful, and, contrary to that really overplayed Disney song, they don’t just go away because someone told us, or we decided, to let them go. It winds up sounding pretty damn victim-blamey–like, if we feel badly, it’s our fault for clinging to the bad feelings.

    2. Let go of being angry or offended.

      The impression I got from the letter is absolutely not that LW is somehow hanging on to being angry or offended, but simply wants her wishes respected. That really doesn’t seem like that much to ask.

      Also telling people what they’re allowed to be angry about is incredibly rude and dismissive. Maybe next time don’t be tremendously rude and dismissive.

    3. I’m also pretty sure this is a part of what’s going on (from both personal experience with a non-cosmetic thing and not wanting to assume the worst), but there’s no need for OP to not feel upset by this.

      Intent isn’t a magic wand that makes all the feelings go away, even if it can be a good thing to consider when measuring the response you’ll give.

  47. Audre Lorde wrote really eloquently about the pressure post mastectomy to have reconstruction and to wear breastforms after breastforms cancer in The Cancer Journals. I would strongly recommend reading it.
    Your experience is very common and I suspect it has less to do with insurance and more to do with the fact that they’re uncomfortable with a woman without breasts.

    1. That’s what I suspect, too. After all, there’s no need to repeatedly ask “are you sure?” if a person does NOT want cosmetic surgery. The outcome of not having cosmetic surgery is easy to predict; things will just continue to be like they are in the moment the decision is made. Whereas having the surgery would require the patient to be informed about all possible outcomes, complications, and dangers, things that there’s a real chance they don’t know about.

      1. Well noted – there is a big distinction between informing someone of medical consequences and pushing a medically unnecessary surgery

  48. Pragmatic solution: Bring a friend along. That way, when you say no, and the medical personnel push back, your friend says, “Dude, she SAID she’s not interested.” I have a lot of problems with doctors not listening to me (probably not coincidentally, I’m also female), and this works for me every time. Why shoulder the entire emotional burden yourself?

  49. I have no useful advice for how to get them to stop pressuring, but on the topic of how to deal with it, I found it very helpful to get into radical feminism as a way to reassure me that I am, in fact, Womaning Correctly, (because by definition, you cannot get being yourself wrong!) and people who tell me that I am not are just plain wrong and there’s no need to worry about them.

  50. If your doctor uses a paper chart, in an actual physical file folder, ask them to write on the outside of the folder, “do not suggest reconstruction, per patient.”

    If they use a computer record, ask them to put the note on the first screen they look at.

  51. I bet the novelty/doctors wondering if you haven’t heard is a big contributing factor here, too. I’ve been reminded about new treatment options for an slightly more common thing I have several times by various doctors. It isn’t reconstructive or weight loss surgery or anything, just more of a matter of me being happy with the old method. They see so many patients it was probably easy to forget to note they told me or that they had during a previous visit.

    All the more reason to go the letter route or something else that puts it on the record that you’re 100% completely aware this is now a safe thing and you don’t have any interest in talking about it, I guess.

  52. As someone with a BRCA mutation I’ve had both a double prophylactic mastectomy and a salpingo oopherectomy. I’ve had to repeatedly inform many doctors that no, I do not need to start having mammograms just because I’ve hit 40, and that my last period was in 2009, and it still hurts a little each time.

    I did opt for reconstruction, though my nipples could not be spared. (side note: I have fabulous boob tattoos that look nothing like realistic nipples (p.ink rocked my world)) The reconstruction is lopsided and it took a while for me to get the relevant doctors to understand that no, I didn’t want to try again, no I didn’t want surgically constructed nipples, I was pretty happy avoiding going under the knife again for as long as humanly possible. What works/ed for me (which I know might not work for you but offer in case it could help) is/was using a lot of “I feel” statements and then explicitly calling doctors on trying to tell me my feelings weren’t valid or informed and asking them what I could do to never have the conversation again.

    I was lucky enough to live in an area where I could get treatment from A Fancy Oncological Hospital, and while it won’t help with people not asking the initial question, I’ve found saying things like “I’ve fully discussed my decisions with my boob doctor at A Fancy Oncological Hospital and she and I have agreed on this course” can sometimes get medical folk to shut up about the asymmetry pretty quickly.

  53. LW, you have received excellent scripts for a letter and for bluntly telling medical people that you are aware of your options but are not interested in reconstruction, and do not wish to discuss it.

    I was treated for BC in 2011 and had some other medical treatments shortly thereafter. In my experience, some medical staff skimmed my file and asked patently absurd questions which also made me feel upset. I tried hard to maintain composure and they never realized how upset I was.
    This was magnified due to the sheer number of appointments I attended, usually with a complete stranger for part of the appointment.

    If it’s any help to you – what made a difference was when I finally stopped trying to hide my feelings, and cried when the insensitive and absurd questions were asked. It wasn’t intentional, but that doctor has been much more considerate, and never asked those questions again.

    I have also found that my reactions to inconsiderate, repetitive questions have changed the more time passes since my treatment. And with more time passing, I require fewer appointments where medical staff or receptionists may ask me questions which sting.

    Finally, if you have access to any counselling, I found it very beneficial to talk to counsellors trained to work with cancer survivors.

    All the best to you!

  54. LW there’s so much great advice here I’ll only add in one thing; I’m a people pleasing woman type person and for years (like 11 of them) I went to doctors sure there was something up and got rebuffed. And eventually it got so bad I was unemployed and couldn’t apply for jobs due to my health but also couldn’t get help from the government because the medical profession insisted there was nothing wrong with me. And feeling lost I wrote to a business writer I really respected who ran an advice column with a largely unrelated letter that had maybe 1 sentence mentioning my medical situation and she sent a long, detailed reply and the most impactful part was her response to that. She said ‘imagine you were a rich, white, male CEO having this issue and people kept insisting you were wrong, how would you react?’ Changed my whole world. With said attitude in mind I became extremely persistent and insistent and through a series of tests I demanded they run it was found I needed a surgery which changed my life. (This all sounds far more dramatic than it felt, and there were many tears and setbacks, but damn if it didn’t work). I’m sincerely hopeful the caps advice works for you and you get some resolution around this, but I found this really helped me overcome my natural people pleasing when it came to something as personal and important as my health/body, should you find yourself in that situation again. All the best x

    1. First, congrats on finally getting the care you needed!

      Second, oh my, yes, internal self-view does make a difference. I’m in my late 40s and have, only in the past few years, finally realized that the concept of my internal view of myself influencing how others see me is not just woo-woo. I’m still getting used to it (and thus don’t always remember to do it, especially when stressed). But I’m getting better at it all the time.

      I’m so happy for you that the business writer picked up on that one sentence of yours and gave you the rich-CEO example. Keep using that attitude!

  55. I don’t know if LW has this option or if it would be a good one.

    Whenever I go to see a new doctor or I am too sick to fight for myself, I always bring my husband with me into the room with me. Doctors in general treat me differently with him in the room than they do when I’m by myself.

    After a particularly bad flu where I had a high fever and the doctor took one look at me and wrote a prescription for allergy medicine, I’ve made this common practice for me. After I’ve formed a relationship with my doctor, if I ever do, I don’t mind leaving my husband at home.

    Truthfully, I see my chiropractor much more than any other doctor, so I’m not sure how this would work for anyone that sees a whole host of medical practitioners.

    I absolutely hate doing this. I hate that I need to have a man in the room with me in order to get the care I deserve, but my health isn’t a joke. We talk before hand about what I want from the doctor and he has clear instructions from me to stand up for me if the doctor isn’t listening to something I say. I’ve never had a doctor not listen to me when he’s in the room. So mostly he just sits there quietly while I get checked over and talk with the doctor. But it means I get a support network when I’m feeling vulnerable and I know that someone has my back.

  56. I had a horror-movie case of shingles once. Gruesome beyond belief, and I can’t even describe the pain of one’s skin burning to the point of blistering from the inside out. They told me people often die when shingles is that severe, but I was saved by being relatively young.

    Anyhow, we’re well into this nightmare and it’s a hell of a journey of new forms of pain and torture. The use of my dominant arm is affected, which is something I rather need as an engineer. So we’re in the middle of discussing what we can do to reduce the likelihood of permanent impairment of my hand and arm, with that side of my torso exposed, including my breast which is well covered in horror-movie burns, when suddenly the doctor starts assuring me that I wouldn’t necessarily be permanently disfigured.

    I looked at her blankly for a moment, and then went back to talking about the functionality of my arm. Permanent disfigurement or lack thereof hadn’t even crossed my mind — we were too busy trying to save my life and my arm. A bunch of ugly scars seemed pretty damn trivial by comparison. “I’ll consider them souvenirs,” was as far as my thinking got.

    Anyway, my arm is now fine. And there are no scars at all, because anecdotal stories from nice people on the internet told me how to treat the burns in a way that produced no scarring, much to my amazement. But it’s still a head-scratcher to me that the doctor thought I’d even care about disfigured boobs when my life and my arm were at stake.

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