Anyone BRCA opted for an elective mastectomy?

[Emsymits]

I have the dreaded appointment to discuss a potential double mastectomy on Thursday. (I'm BRCA2 and just reached 5 years with no recurrence so far.) I'm having a massive wobble I think caused by a c*ckup that now means any private medical recourse to PARP inhibitors is gone forever - A different story but hey...I'm in need of info/reassurance.

Has anyone opted for a preventive/elective mastectomy following OC?

I get annual MRI/mammograms so could continue with that but my odds of BC are so rubbish I've been referred to chat to the experts at Guy's about going for removal. I'm 52 now.

I've read conflicting things about your odds of Breast cancer reducing if you've had OC but find that I bit hard to believe. It's a question for Thursday.

Anyone been through this? I'd welcome any advice or your stories about it.

Thank you

Em

[Emsymits]

Duh BRCA 1 not 2!

[delia2]

Hi Emmy. I don't know the statistics but I have seen women either on here or on a facebook group who have had both cancers, often breast cancer first. I believe as far as genetic counseling goes they say you should combine your family history with knowledge of the mutation--eg if all your relatives got breast cancer in their thirties, you may not get it. I have two stepdaughters with brca1 and my daughter, sister, and I have a pathogenic PALB2 mutation (giving up to a 58% chance of breast cancer). We're in the US and treated at very top cancer centers. None of us has done the double mastectomy, but from what I see on a Facebook group for PALB2 a lot of people sign up for one as soon as they find out they have the mutation. It's a very personal decision. You've obviously done relatively well with OC thus far. In my mind it comes down to fear of getting breast cancer vs reluctance to have a very unpleasant surgery. I do know that a lot of women feel very relieved once they have their breats removed and no longer need all the breast mris (horrible, horrible tests!!!). I'm twenty years older than you and feel like I'm living on borrowed time with OC so it wouldn't be worth going through the mastectomy, but I do worry especially about my stepdaughters. I assume you've consulted with relevant specialists and they've given you their best advice (I would definitely talk to more than one). Good luck and I hope you hear from more people with relevant experience. xx

[Emsymits in reply to delia2]

Many thanks for your comments. I'm going to make my decision after Thursday's meeting where hopefully they will be talking about me personally and my odds etc rather than general info! I agree it's the thought of putting yourself through a horrible operation when you actually have a choice! I love MRI's! I go into the most amazing sleep!

All the best to you and your family for continued good health.xx

[Zssu in reply to Emsymits]

Hi Emmy, I am Brca1, I have had a double mastectomy because firstly I had breast cancer both sides. Went to have oophorectomy and discovered I had OC. However the odds you have to weigh up too are.. is brca2 more likely to get BC? I had an amazing breast surgeon in Bath who removed both my breasts with a curved scar under the breast line. You can hardly see it now. I live flat very happily with no uncomfortable bra. I actually find it liberating not to have to worry about straps/summer tops etc. I did not want a recon as I was worried something could lurk unnoticed under the implant. As for a horrible op, I did not find it so at all. I think if you decide to have it done find a really experienced breast surgeon who will give you the best outcome. Good luck. Zsu

[Jacky5]

HiI saw a breast surgeon earlier this week and I'm now on the list for nipple sparing mastectomy with implant reconstruction.

I'm Brca2 and just reached 3 years.

I'm not looking forward to it and my plan had always been to ask for the op when I reached 5 years but lately I've been plagued by the thought that if I got breast cancer I would be gutted that I hadn't had the op sooner.

My surgeon told me the odds of developing breast cancer after the op will be the less than the average woman. I think he actually said the lowest risk possible.

The wait for surgery may be up to 2 years but could be sooner and in the meantime I'll see a specialist nurse for information and to be shown photos of surgery results.

My youngest daughter in particular is keen for me to have the op. She really struggled with my OC diagnosis, so in part I guess I'm doing it for her.

Sorry I haven't been able to give you any advice or information but just wanted to let you know you aren't alone.

Very best of luck for Thursday.

Liz x

[Itha]

Hi, I am 55, diagnosed Oct 2020, stage 4, BRCA1+. (Chemo, debulking, chemo, Avastin (x 16 cycles), Lynparza since July 2021). So far I am NED and my CA125 is very stable

I did consider a double mastectomy when I first received the BRCA1+ results and based on the geneticist's recommendation.

However, I did quite a bit of research, and I found a study (and I unfortunately did not save it) which was over a long period comparing the difference in getting breast cancer between having the procedure vs. not having it. The results were not conclusive either way.

Some types of breast cancer can be avoided/minimised with the surgery but for some it has no impact at all. (again I did not keep this research link).

Implants with reconstructive surgery makes it more difficult to pick up issues with self examination or scans.

I have opted not to go for the surgery. I will do it should I get breast cancer.

In the meanwhile I examined my breast almost every day as a pro-active measure

I felt I have been through enough surgery the past 3 years and my body needs to recover from all the surgery and medication it was subjected to.

Good luck with your decision!

[Wonnie]

Hi EmI had all my preventative surgery (oopherectomy and double mastectomy) a while before I got Primary Peritoneal Cancer. I'm BRCA1 with a ridiculously strong family history.

Although I took several years from finding out about the gene to doing the mastectomy, by the time I did it, my head was completely in the 'zone' of it being a positive step. As a result, I didn't have any emotional problems with the surgery. I saw it as empowering, not 'dreaded'.

Having now gone through major cancer surgery and chemotherapy incl one recurrence, I still view the mastectomy as positive and I would hope that you find it a different type of surgery to the more 'urgent' surgery of a cancer diagnosis. Its not an easy decision but I hope you can see it as a way of making a positive move to embrace life.

Wishing you all the best

Siobhan x