Preventative Mastectomy

"I had my first lumpectomy at 35 and then another a year later. All benign but I'm being advised that this isn't normal and that my risk is similar to a person who has tested positive for a gene mutation."

If I may ask, what were the results of these surgeries? I had an excisional (surgical) biopsy at 16 and another at 24, both for fibroadenomas. Those are common lumps in young women and don't increase breast cancer risk to any great extent. But if the finding had been a high risk condition, ADH or ALH or LCIS, for example, then future risk is definitely increased. In my case, although I've tested negative on genetic testing, my high risk is attributed to family history - there is enough cancer that the assumption is that there's some as yet undiscovered gene causing it - and because more than 2 decades after my fibroadenomas, ADH was found when I had another biopsy. That finding led to yet another excisional biopsy that did in fact discover breast cancer. But those first two 2 surgical biopsies (effectively lumpectomies but for the purpose of a biopsy) never played into the risk estimates from either my MO or genetic counsellor.

Certainly if your risk is 53%, that warrants serious consideration of a BMX. And as ctmbsikia mentioned, your age is a factor too. This is such a huge decision that I'd also suggest that you may want to get a second opinion either from another MO or a genetic counsellor.

Hi there!

I had a prophylactic BMX in 2014, when I was 34. I also did not test positive for any mutations (as was being tested at time, I have not had further testing for other discovered mutations etc or more advanced testing since) but my lifetime risk was assessed at around 40% due to various family and personal factors.

For me it was absolutely a choice I knew I wanted to make. Breast cancer diagnosis' have not worked out well in my family even when caught “early", and that includes my mother dying after metastatic recurrence a couple years after my initial surgery. It was a huge stressor for me knowing I was approaching an age (40s) my family members were diagnosed, as was the testing anxiety from screening.

I would say I went into it rather prepared so I don't think there were any “surprises" for me, but it is a significant decision to make. You lose sensation, risk complications, may need more surgeries (I am going for my 5th one - another fat grafting - next week), and so on. For me the relief I had was worth it, even knowing my risk is still never going to be 0 of course. Options have also gotten better for surgery and reconstruction.My sister also has a PBMX in late 2019 (she was 35) and it's pretty amazing how far things have come even in five years technique and preference wise.

I am happy to share further details if you want, send me a PM

@DiveCat Hmm. Interesting. The overall vibe that I am getting is that my desire to pursue a high-risk screening regimen and low-dose tamoxifen is regarded as ... unusual and very vigilant (but well within medical norms for peer health systems, even within Canada). I definitely sense that if I were just passively accepting what the system offered ... I'd be getting my next mammogram in about a year. Probably/maybe no ultrasound, definitely no MRI or tamoxifen.

Officially, BC has no high risk screening except for hereditary cancers. However, once you get into the system and start talking to clinicians, there is clearly some leeway, even for people with no known genetic risk factors. But it feels like the onus is on you to educate yourself and ask for more. Maybe that would even extend to PBMX? I have not even tried to have that conversation.

Hi mermaid,

I am a week and a half out from my PBMX (actually had it the same day you posted this). I’m mutation negative but have a strong family history (mother & grandmother pre-menopausal BC, maternal aunt post-menopausal). It took me many years to come to this decision, but what ultimately brought me here was two things: losing my aunt to a recurrence of her stage 1, “caught it early” cancer that we all thought was history; and then having a lump scare a few months later where I spent two weeks absolutely terrified that I had missed my window to remove this tissue from my body before it tried to kill me. After those two events, plus reading here about all the people whose cancers were missed by imaging or grew rapidly in between imaging appointments, I decided that the heightened screening I had been doing felt too passive, and I needed to be proactive. My doctor had recommended a five year course of tamoxifen for me (I’m 42), but knowing that many people struggle with the side effects of that drug, I decided I would rather go through the surgical route and be uncomfortable for a few months than potentially spend 5+ years feeling bad.

So far, I feel really good about the decision. I chose to do immediate reconstruction with over the muscle tissue expanders which will be swapped for silicone implants once I reach the right size. The surgery went smoothly, and my pain levels have been easily controlled and minimal. My mobility has been quite good so far, I think largely because my pectoral muscles weren’t cut and also because I had no node surgery. After the first few days it’s settled into a combination of tightness/mild soreness that’s unpleasant but tolerable. I’m taking it one day at a time, doing my PT exercises, and reminding myself to be patient and have faith that things will continue improving with time. And most importantly, when my surgeon called to tell me that the pathology report from surgery was clear, the relief I felt was like a physical weight leaving my body. Of course my risk will never be zero, but knowing that I’ve done everything I could to protect myself from this disease that laid waste to my family is incredibly reassuring.

Best of luck with your decisikn

I’m new here, too. I am 57 yo, in for BMX 4/13/21, expanders, etc. I’m BRACHA Neg but Mom 2x BC (one premenopausal with MX) maternal AND paternal aunts. My doc suggested to me 25 yrs ago to think abt prophylactic BMX and I was shocked and horrified. two ALH excisions, numerous rides in the MRI tube, stereotactics, all the screenings available...it boils down to I’m tired of being afraid awaiting every diagnostic test result, and ready to reduce my risk as much as possible. Not the right decision for everyone, but the only responsible one for me, to enjoy my Husb, kids and maybe some grandkids some day. I will miss my set but they are no longer very awesome, lol, and I am trying to focus with being Blessed to be able to make this decision. My late femIle family didn’t have this option. Good luck!

chicagonellie

Yeah I'm a couple months into 5mg/tamoxifen per day. If I have side effects, they are pretty subtle and very tolerable. Definitely a bargain I am willing to strike for a possible 40% risk reduction (i'm looking at 40-45% lifetime risk at this point). The one thing I've noticed is maybe some temperature regulation issues (mini hot-flashes?) but, if they're real, they are very manageable so far.

With the GIANT caveat that I have not experienced breast cancer treatment, chemo, mastectomy etc.... I do feel like there is a great reluctance to proactively treat women that are clearly at high risk. As I've said in another thread, it feels like you go from "yeah you're very high risk but it's too early to take them off" to "yeah you have cancer but the horse has already left the barn (or not) and there's no point in taking them off". This, of course, points to how blunt an instrument prophylactic mastectomy is. But I can't help but believe there is some very male-influenced thinking here about breasts and the cost-benefit analysis of removing vs. conserving. It's incredibly personal and I do process a lot of advice with a huge grain of salt.

I have two close friends who also have a mom with breast cancer (one's mom has survived, the other did not, mine is still alive). They are also both physicians. And they both, like me, are very, very open to the idea of preventive mastectomy.

My next mammogram is later this month and it will be very interesting to hear how things look.

Hi @chicagonellie! I had posted above but figured I’d comment again since today I’m four weeks out from my PBMx. A couple questions/thoughts:

1. Is your sister the only person in your family to have BC? Obviously hers was very early and very aggressive, but from my experience, insurers definitely and doctors most likely will look for more evidence of your risk in order to approve this surgery for you. In my case it was my mother, maternal aunt & maternal grandmother all with BC (including my mom and grandmother both pre-menopausal) and it was still a bit of a process to find the right surgical team. (And by the way, literally every doctor I talked to along the way was female.) When I spoke to Memorial Sloan Kettering in NYC they said they only do prophylactic surgery on people with known mutations. My insurer’s criterion for family risk absent a mutation was 3 family members. Obviously your ADH diagnosis changes the picture, but I don’t know by how much.

2. It is a hugely impactful surgery. I tried to prepare myself mentally and physically as best I could, but there’s no way to know what it will feel like until you’re in it. My nipples/areolas turned dark brown and scabby before healing. My drain incision sites still hurt randomly even though my last drain came out almost two weeks ago. I have no sensation inside the outer perimeter of my breasts; they just feel like this weird uncomfortable weight on my chest that isn’t part of my body, because my brain literally doesn’t know anything is still there because the nerves are gone. I chose over the muscle expanders to implants as my reconstruction, and the expanders are pretty miserable. Temporary, but quite unpleasant while they’re in there. At four weeks my right side feels pretty good as far as normal range of motion, but my left side is persistently tight and sore, and when I do PT to try to stretch out my chest muscles, I end up sore with all kinds of twinges and pangs. The expanders are sutured to my muscles and they do not like to be moved too much. And I still have two months before my exchange, then the healing from the exchange, then trying once again to rebuild my physical mobility and strength... it’s a long and tiring process. Meanwhile my cousin who chose a direct-to-DIEP recon has had a really tough recovery with substantial complications, despite nothing in her health profile presenting an increased risk for slower/tougher healing.

None of the above is a reason not to pursue it... just information to chew on. For myself, I know for a long time I thought of mastectomy as a cozy, magic no-cancer bullet; it wasn’t until I got close to scheduling my surgery date that I really started to understand what a significant surgery it is. The size of the area involved (collarbone to armpit to halfway down the rib cage, across the entire chest) and the location (over one of the major muscles that operates the shoulder) make it a long recovery even if you opt out of reconstruction.

Good luck to you!

Skeet - I had BMX with expanders, then exchange to implants, then two years later a recurrence that required ALND. All of this started when I was 67. The only real help I needed was with the drains. I'll find the sugery thread & post it.

thanks so much! My dmx was postponed from February 1 to February 24 as my ps has covid. Trying to avoid covid while i wait. Lots of anxiety, which i am prone to anyway. Just want to be on the other side of surgery. And now i find out my son's in laws are coming for an overnight 2 days after my surgery. Not sure why that bugs me, but it does.