who has had a prophylactic mastectomy?

Dawnnie



Hi! I just had my PBMX last month and am in the middle of reconstruction. I cannot imagine any insurance company denying you especially with BRCA+ status. I did not have this test done, as my insurance company does not cover it unless you actually have a cancer diagnosis. In the last two years I have had numerous biopsies all with a pathology of atypical lobular hyperplasia. My breasts were also extremely dense and drs never were 100% sure they were getting the complete picture with mammograms. My MRI results always mentioned the density of my breasts as well. I thought on it for two long years, did some soul searching and decided I needed to take the next step for my peace of mind. I am currently going through the tissue expansion phase of reconstruction and will be getting silicone implants sometime in April. So far it has all been doable. It is a big decision and you do have the luxury of time to be sure of what you want to do. I know for me it was the right choice. Good luck on your upcoming diagnostics and feel free to PM me if you have any questions.

I do not work, but if I had a job that was not physical, I could've gone to work last week (4 weeks after surgery) however, if your job is strenuous, you will need the full 6 weeks off. I was only in the hospital overnight. Went home before breakfast trays came to the room. Only needed serious help for the first three days. Other than that, just needed someone to drive me to dr. appointments until the drains came out.

Dawnie,

My mom got bc at 41 and then 7 years ago at 57 in the other breast. She tested negative for BRCA but she just did the BART test.  When her cancer appeared in her other breast at 57 I thought long and hard about a pbmx.  Everyone thought it was crazy.  Well 7 years later, this past nov. I was dx with DCIS.  I was some how relieved that my biopsy was positive, so I could now deal with it. It was stage 0 and I still got crap from friends for the bmx. 

I can tell you this, if I had BRCA confirmed I would have done it.  I am glad however I waited for one reason.  Nipple sparing mast. have come a long way and luckily I was a good candidate.  Psychologically it made world of difference.  I am 44 now.  Seven years ago I wasn't sure if wanted children and I was running out of time.  I was afraid to get pregnant because of the BC risk and the hormones.   If I were younger, I may have done the pbmx and then had a baby.  Well, I ran out time-never understood how any could afford daycare anyway!   I am very content with my doggies.

If you are comfortable with the added risk of keeping your nipples (and risk they may be lost in or after surgery), it may be something to consider.  One of my best friends is BRCA+ and she got  DCIS at 41 and then they found 5 small invasive tumors in her good breast during her bmx that didn't show up on her MRI, mammo or US.  So that bmx saved her life.  She was able to keep her nipples!  A really really good BS is necessary. Mine surgeon is the best but he doesn't do many nipple sparing mx and he still did an amazing job.

Best of Luck!

Dawnie, I am BRCA negative but with a very long and wide family history of BC. When diagnosed with LCIS at the time of 3 biopsies (all were benign), I made an instant decision to do prophy bmx and recon.  Tired of looking over my shoulder waiting for my turn with the family disease.  I had the pbmx and d.i.e.p. recon 19 months ago, and I am stronger and healthier than ever in my life.  

The d.i.e.p. option uses abdominal fat instead of implants to form the reconstructed breasts, so there's a more complicated recovery because of the abdominal donor site. I fly every other week to teach seminars and took 9 weeks off from flying, but I was out walking and back to most normal activities after six weeks.  I believe that implant reconstruction gives a bit speedier bounce back, but I don't know that first hand.  If you decide to do the bmx, there are many, many wonderful women in the recon forum who can shed light on recon options; and there are some great discussions going on by those who have chosen not to recon. So you can get all kinds of perspectives on whether to recon or not; whether to recon at the same time as your bmx or wait a while, etc.

I don't regret my decision one bit and feel simply that I got 'it' before 'it' got me!  Good luck with your decision.

Hi peanutsgal. I'm a reporter for the Khaleej Times in Dubai and am currently researching with the aim to do an indepth feature piece on women who have undergone prophylactic mastectomies. Wuld you be happy to talk to me as I am really keen to speak to someone, first hand, who has had the procedure. my work email is kelly@khaleejtimes.com and I would really appreciate your help if you are happy to open up about your experiences. Many thanks, Kelly Clarke

Dawnie,  I see your last post on this topic was back in February so I assume you have your results and may have already had to make your decision.  I hope you are at peace with your decision whatever it may be.  If there is a chance you or anyone is is still wondering about those of us who have elected to have a PBMX, I will share my story. I like your doctor's crystal ball reference.  I have to say, that is how I feel.

My sister and I learned we are both BRCA1+ in January 2011. She had a SS/NS PBMX in June (at age 31) and I had mine in November of that year (at age 35). Our mother is a two-time BC survivor (age 29 and 45).  Her sister survived BC in her late 30s/early 40s but succumbed to OC about 10 years later. Their cousin died from BC in her mid 30s. So, every person in our family who has had the mutation has had BC by the time they reach their early 40s.

Getting insurance coverage for the PBMX has been surprisingly smooth sailing (even now as I am in the process of revision surgeries), considering how difficult it was for me to get my MRIs and mammograms covered.  Every 6 months I had a struggle with them!

Recovery was difficult but doable with pain meds and support I took 6 weeks off of work (my sister only had 4).  I had no pain by the time I returned, but due to complications, I did have to return with an open wound from skin necrosis. That finally got resolved with a small procedure and strong antibiotics about 2 months after my surgery.  

Best,

Sarah

Dawn, for what it's worth, I think the anticipation was much worse than the reality for my reconstruction. My recon was diep, and yes it was challenging at first --really only the first two weeks--and then slow but steady and not painful progress from there. And at the end of it all, the most important comment I can make is that I feel so very whole. The breasts do not look 100% like my 'old' ones, and of course, there are scars on the breasts and on my abdomen from the donor site, but the breasts are me, they feel and move like my natural breasts, and now...I almost forget that I had a pbmx.

Good luck on your continued deliberations.

Dawnie,



So glad you are comfortable with your decision. I just had my exchange to implants last week and things have gone amazingly smooth for me. I wish you the best of luck in June. I will keep you in mind and say a pray on the 19th for you. If you have any questions or if you just need a sounding block between now and then, please don't hesitate to PM me. I'm willing to share the good, the bad and the ugly! Rest easy knowing that the anticipation is absolutely the worst part. I hate that I expended sooooo much energy on the "what ifs" that never happened. It is doable and you will find great support here. Hang in there!

I find this thread really interesting.

Good luck for your surgery next month.

I am 35 with three kids. My mum is currently battling metastatic bc and it is a battle she will not win. She first had bc in her 50s. Now 12 years later the mets turned up.it s the same for her mother. My paternal aunt also died the same way this year.

I haven't had my BRAC test yet but am in discussion with a genetic oncologist but tbh I just want to go for the mastectomy whatever the brac test result. after all it isnt the only dna mutation for bc. and my doctor told me that some people dont have a dna mutation as such but have a predisposition / tendancy towards bc, but they cnt yet test for this. it was a bit vague,

The hospital told me that even if i am BRAC negative or they decide my family history is not strong enough to warrant the test, that they would offer me extra mammograms and checks etc. For me this isn't enough - just waiting for the cancer..

I worry that as soon as the cancer is big enough to be picked up by a physical exam or a mamogram then the "seeds" may have already spread and metastatic cancer may occur ten years on whatever. Who knows when the seed cells pass into the blood?

I am terrified of this. It is uncertain as to wether my mother will make her 66th birthday. It is too young. As was the case with her mother,who I never had the pleasure to meet.



I have no idea what insurance companies would make of my choice. Or the surgeons. But I don't want to spend life waiting for it..



I have a skin disorder in the vulva which caused physical changes. I needed that operating on too. So I have no fear of surgery or loss of femininity etc..these were all issues I faced and got over with that issue.. I am sure I can mentally handle it and my husband is brilliant and v supportive.



Is this a crazy choice? Anyone similar?



Love and luck to all xx

I have a strong family history.  On paper it looks exactly like BRAC2 - big difference is that my mom is the only one who got her cancer early at 41, then other breast at 57.  The BRAC2 pattern is on her father's side - yet her mother had BC twice in her 70s.   The pattern on my grandfather's side includes my mom's three 1/2 siblings having ovarian cancer at 88, pancreatic at 81 and prostate at 77.  There is also a male bc from a cousin in his 60s.  No once has died except my uncle who had pancreatic cancer - and even he kicked its butt for 2.5 years in his eighties.

I looked into a pbmx 8 years ago when my mom's bc came in the other breast.  Everyone told me I was being a hypochondriac.  Well 8 years later, this past Nov., I was dx with DCIS at 44.  Even though it was stage 0 I immediately opted for the bmx.  I was almost relieved when the biopsy came back positive. 

I didn't want radiation and I can't lie, knowing I had the best chance of good comestic results if I had the procedure done before any major treatments, made the decision super easy. 

I guess I am glad I didn't do it 8 years ago, because I didn't know about nipple sparing procedure back then and I was fortunate enough to have them survive the surgery.  It is a added risk, but I can live with it.

My question is - should I remove my ovaries?  Can it wait until menopause?  Has anyone else without a positive gene removed them before menopause? 

My oncologists thinks it is fine to keep them and just have u/s yearly.  I think they will go as soon as I hit menopause.

Thanks.

Carol, my mom did have hers removed and she didn't notice an difference. She was 60 or so then.  Sadly my reasons for not doing it are mostly vain.  I don't want to have an even harder time maintaining my weight and I don't want my hair to thin.  Also, I am hate heat. I always joke I won't survive menopause.  My friend with BRCA did both surgeries.  She is miserable without her ovaries.  Regrets it. She is 43.

I know my reasons are lame. If I had BRCA I'd do it no questions.  The only confirmed ovarian cancer is my 1/2 aunt at 88 on my maternal grandfather's side.  My mom's mother's sister died of lady cancer - my mom's words????   They claims it was vaginal; not ovarian - anyway she was in late 60s. 

Then there is my uterus.  I had polyps about 5 years ago, they'd said they would come back.  Drs. don't seemed concerned=I don't like them in there.  I am going for an U/S next month. I will discuss my gyn.

I guess I'd also like know if those who had their ovaries removed premenopausal - had as awful consequences as predicted?

My PS told me in about 5% of cases they find cancer when they do a prophy, a bit higher in those with a genectic risk.