How did you decide for or against a prophylactic mastectomy?

My original tumor was highly aggressive and TN tumors are also known to become chemo-resistant over time. I was very lucky that it grew close to the surface of the breast so that I could detect it with a self-exam. Had it grown closer to the chest wall, I might have missed it, and then it might have grown and spread before a mammogram detected it. And even though I tested negative for BC genes, I still have a pretty compelling family history, with 3 of 4 aunts + 5 first cousins getting BC, I wasn't going to take the chance of getting it again in my non-diseased breast and having to go through chemo and the worry all over again.

3 days ago, I got a mastectomy on my right and a prophylactic mastectomy on my left.

FWIW, had I tested positive for any of the BC genes, it would be a no-brainer: off they'd come. (I'd also have them take out any other at-risk parts, such as ovaries, if that was indicated.) BC is a horrible disease, and if the odds were very high that I'd get it, I'd definitely go the prophylactic route. I personally know 3 ladies who have done it, and not one of them regret it. In fact, they found it liberating not to have to get mammograms and MRIs all the time.

Take care and good luck with your decision.

I opted for BMX as well. My risk level was high due to previous rads to the chest for Hodgkin’s lymphoma. BC in one and microcalcifications in the other. Could have opted for UMX & lumpectomy but did not want to deal with this again down the road, didn’t care to deal with stress and anxiety of hyper surveillance on the other breast, symmetry, and I was doing DIEP flap recon (natural tissue, no implants) which you can only do once. If I had UMX and had to have MX on the other side down the road that recon option would not be available. I also thought it would be strange to have the two sides feel different from one another. The recovery from BMX vs UNX really isn’t any different. You still having lifting restrictions, sleeping position restrictions, you’re still easily fatigued for the first few weeks, driving restrictions, etc. I’m 45, married to a wonderful man, actively involved mother to 2 boys (23&13) and a Mimi to my 2 year old granddaughter with a grandson due in 2 weeks. I work full time and up until very recently served in leadership roles on the boards of 2 non-profit organizations (term limits). If I can do it with all this going on, anyone can.

I too am Brca 2+, once I received that diagnosis, there wasn't an option in my mind. Having extremely dense breast tissue would have required that I go for regular MRI testing, no thanks. My only regret is I didn't do this before a cancer diagnosis. The statistics are simply not on our side being Brca2+. I hope you find peace with your decision.

Nearly twenty years of high risk screening was incredibly stressful and expensive. I always knew if something came up I'd have the PBM. ALH and ADH were found. I insisted INSISTED on the PBM. Too late though. I already had breast cancer and every screening method missed it.

The best feeling in the world was waking up from surgery thinking I had outrun the beast. The worst feeling was when my doctor called me three days later and said I hadn’t.

I too opted for a double Bmx . 51, mom of 3. Was offered a lumpectomy. Having had dense breasts and previous biopsies, I just couldn't mentally handle the increased surveillance that would ensue and I'd constantly be worried it would pop up on the other side too. For me it was a no brainer. I'm a worrywort. I've not regretted the choice to do both. Hope you feel confident in whatever you ultimately choose.

Hi Lpartida,

Welcome to the forums!

We're sorry that you're circumstances brought you here but glad that you found us. Deciding on double mastectomy and reconstruction are very personal and individual decisions so we suggest you get well informed before making a final decision.

Here is some information from our main site that you may find helpful:

- Prophylactic Mastectomy

- Prophylactic Mastectomy and Reconstruction Video Series

- Is Breast Reconstruction Right for you?

We hope this helps!

The Mods.

Hi everyone...I had a prophylactic right mastectomy for several reasons. I wanted my breasts to be symmetric. I also was very difficult to screen. Its a very personal decision but I'm happy with mine. Good luck to all.

I chose not to have a prophylactic mastectomy. Testing showed low recurrence likelihood, genetic testing was clean. My breast surgeon recommended double but I couldn’t wrap my head around removing a healthy breast. My plastic surgeon would have supported double but made a comment that resonated. Double wouldn’t change my cancer risk but doubled my risk of surgical complications.

Haven’t second guessed it since making the decision.

What drove me to make my decision was the fact that ILC tends to be multifocal -- both sides even though we only found it on one side and dense breasts, which hid the cancer in my right breast for several years, even with mammograms.

I will have double mastectomy in a month - invasive papillary carcinoma on left side, nothing (that I know of!) on the right. For me, it was other health reasons that led me to mastectomy. Radiation wasn't a good option because I have a vascular issue and a heart issue - the RO did research on my vascular issue and didn't feel great about doing radiation and I agreed with her. I also have an ATM VUS gene alteration, which they say isn't an issue, but I'll believe it in 10-20 years when they've had more time to research. Finally, I'm a C cup after breastfeeding two babies (who have grown into ungrateful teens) and the PS said it's hard to match larger size with the implant. I can't say I'm looking forward to it, but with my vascular issue I was dreading radiation and I believe this is the best option for me.