Prophylactic Mastectomy

Kindofblue7

Hi - In November, I had a successful single mastectomy (Right).

I'm 67 & I was a caregiver for my mother-in-law for 5 years. We moved into her house from

out-of-state. After she passed - I decided to join my various friends across the country that I

had missed & making plans was invigorating!

Then the pandemic - no reunions with family or friends.

Was diagnosed with ILC & DCIS in Oct, 2021. Again, no travel after surgery. I had told my surgeon

I wanted a bi-lateral mastectomy. She said that was too big of a surgery.

So I reiterated my request during a follow-up. Now she says that it may not be necessary.

I would rather get the surgery now so I can travel again - with no restrictions. The mastectomy

was relatively easy.

My insurance covers this procedure.

How is this Not my decision?

Any similar experiences out there?

Thanks in advance.

LW422

Hello KindofBlue. I haven't had this happen but it seems to me that you are in the driver's seat as far as this decision. Maybe you can get another surgeon who will do as you wish? Do you have other co-morbidities that would make having the surgery dangerous to you?

I have IBC and wanted a double mastectomy, but I am "urged" to only have the cancerous breast removed to hopefully avoid extra complications. I can go back later to have the other one removed but I doubt I will bother. All this cancer stuff is so maddening.

I hope you can get the situation resolved to your satisfaction.

Bookpusher

I was under the impression that doctors generally let us decide. However, I am sure some doctors might not want to do bilateral unless the medical facts strongly support it. Some might brush off our anxiety about being one breasted, recurrence, etc.

I see my surgeon tomorrow. Not sure what I will do, but leaning bilateral for more peace of mind. I am ER/PR negative so hormonal therapy won’t be an option for me. I also have dense breast, mother had breast cancer, I am as healthy as I will ever be (I am 70), don’t relish being lopsided. But will my surgeon agree remains to be seen.

I wish you luck. If you feel strongly about the need for a a BMX, I ‘d think about changing surgeons. Good luck. None of this is easy, hard decisions to make when you are rightfully feeling overwhelmed by all of it.

MsMarilyn1960

I had the same issue since my original diagnosis. I wanted bilateral, doctors said no. Back then I was having anemic bleeds. To this day we can't find a cause. Just know how to control it so I don't have anymore issues. Well not supposed to but at times I have. So the reasoning was we don't want you on the table that long. I am 61 now and that was 14 yrs ago. My weight has fluctuated. Back then weeks in the hospital with a chest tube I wasn't eating. I lost about 95 pounds. My weight has fluctuated. This entire time, all these yrs nobody would do the surgery. I am finally going to have a prophylactic mastectomy. But ONLY because I have an inflamed lymph node in my right breast that appears every so often. I hope you can find someone that will do it.

Kindofblue7

Thank you.

Lizard123

I opted for a double mastectomy after a reoccurrence. It was not recommended. My cancer reoccurred in a lymph node a year after my first lumpectomy surgery. My first cancer was very early stage and was deemed very unlikely to reoccur.

I also had very dense breasts for a 53 year old woman I think there may have a been small cancer(s) that were not detectable within my breasts so I choose a mastectomy What convinced me was a comment my surgeon made. “If it comes back we can deal with it again."This is not something I want to deal with again. Everyone is different. If I was much younger, I probably would not have had a mastectomy. Not everyone is part of the majority. If breast cancer was always curable by a lumpectomy, that would be the only surgery available.