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:
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.”
- “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?
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