Forum Discussion
Prophylactic mastectomy
Hi, following lumpectomy, sentinel node biopsy (clear), and radiation in 2015/16, I've been tested and am positive for BRAC2 'variant' (my doc calls it 'abnormality'); it's unknown what the risk factor is, compared to the 'known' BRAC1 and 2 mutations. On the basis of this,however, plus my medical history and that of my family (sister died at 32 from BC, mother at 62 from bowel CA plus other more distant rallies, my breast surgeon has "offered" me a bilateral mastectomy. This has shocked me somewhat, as this is the first time this has been suggested. I'm on hold at the moment about a decision, and will have another breast clinic check up in May, and another MRI in September. I'd love to hear from anyone who has also been in this position. It's such a 'grey' area - some days I just want to get rid of the anxiety about a return of cancer (DCIS with micro invasion), and other days it seems crazy to have full-on surgery. I'm 67 years old.
12 Replies
- Hello
I am 3 weeks post double mx direct to implant plus aux node dissection.. op was 7 hours and I was in hospital for 5 days not including day of surgery. Had 4 drains. 2 came out before I left hospital and then the other two within 10 days of coming home.
Whilst it wasn’t pleasant by any means it is completely doable without too much fuss and I am now able to do most things I could do pre surgery. - Just in case any new readers come to this topic: I'm postponing my decision as to whether to have a prophylactic bilateral mastectomy for now. I've got other surgery coming up on parathyroid so that'll do for now! Breast MRI in September. In the meantime, I'm addressing one of the 3 risk factors my specialist named, and that is the BRAC2 Variant that was detected when tested through Qld Health Genetic Unit. I've been seeking up-to-date advice from them, but haven't had any luck in 3 months of asking them for information. I think they're probably underfunded and understaffed! So I'm going OS: that is, my niece in Shanghai had her testing done for minimal cost through a Boston-based Laboratory who are very interested in the rest of her family. So when she next has an Aust. visitor (this month) she will give them the kit to bring to me (it's a saliva test and only has a 5-day shelf life so I have to get it back to the Shanghai Lab in a timely manner). Then in June when another friend is visiting her from Australia, she will take the test vials back with her. I'm hoping to get a second opinion on my genetic status, but also my niece's report was much more thorough than I received here. Will keep you posted in case there is interest. The risk status of "variant" is still unknown, yet is being taken as one of the 3 factors of my specialist's 'recommendation' for mastectomy. I've been encouraged by above comments that the surgery itself can be quite trouble-free. Janine
- Hi
I was diagnosed in August at 40 with multifocal triple hormone positive cancer in left and a benign lump in right.
My surgeon was very open and discussed the options of a single or double. I chose the double with node clearance. She was extremely supportive.
I was big busted and do believe matching prosthetic to real breast would have been difficult.
The surgery was not as I expected. I recovered quickly and required minimal analgesia. I have complete range of movement.
Good luck.
x - Hi @Zoffiel, thank you for replying. I had lumpectomy and re excision and sentinel mode biopsy(clear) for DCIS so prob not as sinister but was grade 3. I won’t be choosing reconstruction so that’s one thing off the plate. I’m fortunate probably to not have dense or overly lumpy breasts so detection easier. Issues are sister dying at 32 from bc and other close rellies plus BRAC2 variant. My niece and brother have same variant. Janine
Hi Janine,
I was diagnosed, eventually, with Lobular carcinoma (the sneaky little sucker of the breast cancer world)
By the time it was confirmed I had BC the tumour was a significant size. I had, and this is a direct quote from one of the technicians, 'boobs as lumpy as a kapok mattress' This density of tissue made it really hard to find the tumour. Once it was confirmed I had it in one side, I couldn't trust the other so off they came. The 'good' boob had some sinister stuff happening as well so I felt the decision was justified.
I didn't like it and still miss my tits, but overall it was a good thing for me too have done. Nothing will keep us safe--I did get a recurrence in my armpit--but doing everything you can gives some degree of comfort if that's the way you tend to think. Everyone has different priorities.
It's a tough decision to make. The options for reconstruction are much better than they were when I had to choose what do in that regard. In hindsight, going flat and fabulous probably would have saved a heap of mucking around but that is something that everyone has to decide.
One piece of advice, if you do decide to go for the chop and get retreads, start the reconstruction early if you don't have private health. Depending on where you are the wait lists can be daunting for reconstructions if you don't do them at the time of your initial surgery. Find out about that as part of your research process. Good luck, Marg
- Thank you; this discussion helps me to feel more accepting that this can be my future decision. Janine
- Hi there @Lozang...I was diagnosed with triple positive breast cancer in the left boob and was told I had some "abnormal geography" on the right side, (pre surgery). I had to push for a bilateral mastectomy rather than "close monitoring" as was offered. I told the surgeon that for me, it was like being told that a convicted sex offender was living next door to me, but that, don't worry, we are keeping a close eye on him. He has an ankle tracker and he has to report to his parole officer every week. Fiddlesticks (as opposed to another exclamation of discontent), no way!!! When I explained myself thus, she agreed to whack off both. As it happened, the pathology showed abnormal cells, although not cancerous at the time, certainly a ticking time bomb. Surgery done last year when I was 59. No regrets whatsoever....except that now I have nowhere handy to keep my cable needle when knitting.
- Hi there love I’m the same as @Mollygirl no regrets from me love with the double chop. Margie xx
- @Mollygirl Thank you so much for your comforting words about the procedure itself. I’m having a parathyroidectomy this year so will get that over with and have a breast mri in September and I think I’ll be ready to make a decision to go forward then. Big hugs, Janine
- Hi @Lozang, it's certainly confronting to hear the word mastectomy. My situation is different to yours but I hope I can offer you some support. I had triple negative cancer which is closely linked to BRCA but I was actually negative to gene mutations. I'm adopted so no family history known.
I elected to have bilateral mastectomies after my chemo last year. Yearly mammograms and ultrasound since 36 years old (47 at diagnosis) I was 10 months since last mammogram when diagnosed. I had very dense breast tissue and had DCIS and grade 3 tumour was 17mm with lymphovascular invasion.
It's a big decision to make. I had people in my orbit who'd had recurrences and also in the other breast. That really influenced me a lot. Chemo was awful, that influenced me most. I wanted to reduce the chances of me ever having to do that again. I guess I wanted to know I had done as much as possible to prevent a recurrence.
The surgery itself was much easier than I anticipated. Much easier recovery when no nodes interfered with. Some pain for the first couple of days but manageable on oral pain relief.
Good luck with your decision- we are here for you whatever you decide. Big big hugs, Bec xx
