Deciding if I should do bilateral or double mastectomy??

Correction I meant to say "grade 3" and not "stage 3"! They are very different!

Hi Everyone
Just a quick update 2 years later…I did end up having a double mastectomy and 14 lymph nodes taken out. I had the diep flap surgery one year after the mastectomy. I’m currently Stage 4 with metastatic breast cancer. I’m doing good and currently getting faslodex injections once a month to keep the lesions on my vertebrae stable. I’m not on any other medications only supplements. Staying positive throughout this process has been key. 😊

I had this exact diagnosis, except I was level 3. It was my doctors who encouraged me to have the double, and it was I who thought that was so extreme. What finally swayed me was 1.) I wouldn't have to have radiation or any further treatment 2.) You get the best cosmetic outcome if you have the double. I was able to have the reconstruction at the same time as the mastectomies. I am 78yrs. old & decided that I want to look my best for as long as possible. I sailed through the surgery & recovery, & I know I made the right decision for me.
I did not allow them to perform the sentinel node biopsy. I am in perfect health, have no family history of cancer, and didn't want a sore arm to interfere with golf & tennis. After I made the request, the doctor told me that in my case, there was a very low possibility of finding anything. Good decision! I am clear. I wish you peace & luck in your decision.

I had stage 1 initially and did a lumpectomy/radiation. It came back 12 yrs later. Still stage 1. Decided that I would take them both off this time around. Wish I would have taken them off the first time. Could have skipped radiation and a 2nd surgery. But it is personal. There is no right answer.

I met with my doctor yesterday and she will not do double mastectomy. I don’t want the radiation. I guess I’ll be looking for another opinion. Feeling very disappointed. Thank you for your reply!

I’m not being given a choice, even though she told me two weeks ago I would get to choose. She will only do lumpectomy and I wanted DMX and go flat. This is why I’m upset. Maybe I’m overreacting…

This is exactly why I just want one surgery… I hear this too many times. It comes back!

I am in Canada with “so-called” public health. I feel for you a 100%. I am sorry that your doctor is not “allowing” you the choice of a double mastectomy. A prophylactic mastectomy brings the chance of cancer down to 5%. Why aren’t they doing it? Angelina Jolie had it right. And how dare these doctors treat patients like children and make the decision for them. They may have the training but it is not they life to gamble with as they don’t pay the consequences if they are wrong. When I was originally diagnosed I thought decisions were supposed to be consensual but I quickly found out for most oncologists it is a power game. Oncology infantilizes the patient and this needs to change as the field is not rocket science. I had to beg following my single mastectomy to have the other side removed. I had a recurrence on the chest wall (botched mastectomy I believe) and was able to lobby for double mastectomy due to calcification on the other side after leaving my home province. All of this was massive lobbying. My sister, in a different province, on the other hand, was offered a DMX at the onset even though her cancer biology wasn’t as as dangerous as mine. We are both thrilled with our double reconstructions. Better than before. My fight was extremely inconvenient and expensive. Unfortunately you may have to go somewhere else. Contact American Cancer Association they might be able to assist. Medicine has to change. Good luck to you.

I was dx with TNBC and am BRCA2+ oncologist suggested DMX but surgeon said I only needed lumpectomy - for my comfort level I told both I would not move forward until they were on the same page - so I ask them to talk before scheduling surgery. Everything I read about TNBC & BRCA gene indicated DMX was the process to have to minimize recurrence - which was a high probability. Onco convinced surgeon and so DMX was scheduled. If I couldn't do DMX and reconstruction at the same time then I was going flat - I didn't want to look forward to multiple surgeries down the road. Unfortunately one and done was not an option so I went flat. I was 69 when I had surgery and wanted to look forward to retirement and not surgeries - I also had two new grandbabies and wanted to spend time holding them while they were still small and didn't want to content with any soreness from reconstruction process. I researched my dx as soon as I knew what it was to have an idea what was ahead of me so I was prepared for treatment options and what was in store for me. Being prepared for each treatment and side effects and what I could do to minimize those side effects made me feel more in control of the treatments. I had chemo, dmx and radiation - with minimal side effects from each treatment.

Definitely another doctor.