Possible preventative mastectomy

[CookieCake]

Hi, following treatment for stage 4 ovarian cancer I found out I have the BRCA1 gene. I was tested due to my age at diagnosis and family history of breast cancer. I’m now considering preventative double mastectomy with reconstruction. I’m due to see the surgical team on Friday to discuss my options. I would be very grateful if anyone could offer some advice if you’ve had personal experience of my situation.

[Katmal-UK]

Hi I am stage 3 OC with BRAC2 gene and was offered the same. I decided against it for personal reasons and due to the fact that there is no family history of BC just OC. I have a mammogram every 12 months with the option to ask for a mastectomy if I choose. Perhaps had I had a family history of BC my decision may well have been different. I hope that what every decision you make is the right one for you. xx Kathy xx

[CookieCake in reply to Katmal-UK]

Thank you so much for your response. Maybe if there wasn’t any family history I would think differently but appreciate everyone’s opinion. X

[Lindaura]

Dear Cookie,

I too am BRCA1, but I am an older woman, but was still able to have risk reduction surgery.

After my successful first line treatment, and I was beginning to feel good again, with a CA-126 of11, I had a consultation with the Brest surgeon.

However, the surgeon cautioned me that this radical surgery might get in the way when it was likely that I might have a recurrence with in the next year.

Naturally, I assumed that I would be a lucky one and never have a recurrence.

I was taken aback, but decided to wait on breast surgery for a year. I was also pretty positive that my breasts were safe, since first line treatment for Ovarian cancer is nearly the same as Breast cancer chemo.

And I had a clear mammogram.

As luck would have it, my cancer returned 3 months later.

However, I have a 42 year old daughter, who is also BRCA1 positive and my sister, also BRCA1 positive, had a recurrence of breast cancer this past year, after being clear for 15 years!

So my daughter is having the most radical double mastectomy with removal of her nipples and areoles, which makes reconstruction extremely difficult as she is quite small on top and there is not enough skin left to hold even the smaller implants.

It will be a years long recovery, which will include tissue expanders and further surgery to get a good outcome.

It sounds horrendous, but she is going through with it.

She will move into my room and my husband and I will help in her care.

I feel awful about this, but after knowing the suffering my sister is going through, we see no alternative.

Meanwhile, I am in my third cycle of treatment after failing to respond properly to Niraparib.

BTW, have you been offered a PARP inhibitor?

I had been hoping that this would prevent breast cancer also.

Sorry for this huge reply,

But risk reduction breast surgery is not as easy as you might think.

And you might want to wait until you have passed your 1 year mark after being clear of cancer.

Your good CA-125 score is quite reassuring.

Best wishes,

Laura

[CookieCake in reply to Lindaura]

Thank you so much for your reply. I appreciate your response, I had surgery last July, and chemo finished last Sept, then 18 cycles of Avastin which finished in September this year. If I had surgery I would want to wait til this time next year so 2 yrs after surgery and chemo and a year after Avastin. I’ve been reading about the surgery and aware that it won’t be easy but feel it could be the right thing for me. I wish you and your family well x

[Lyndy]

Hello... I am stage 3/4 OC BRCA I positive. I decided not to go with mastectomy but to have annual mammograms. It’s a risk but there are no recorded cases of BC in my family... also I had just gone through firstline chemo and surgery.

Four and a half years on I am beginning to reassess. I have had no return of the OC yet.

However I was told that my risk is falling for BC due to my age. I think it has to be a personal decision that is right for you but based on any evidence the docs can offer. Good luck xx

[CookieCake in reply to Lyndy]

Thank you so much for your reply, I’m so pleased that four and a half years later you are still doing well.

My concern is that at the age of 47 I have the risk of ovarian returning with the added worry of breast cancer (my grandmother and great aunt both had breast cancer) If I have preventative surgery I feel I would greatly reduce the risk of breast cancer (I realise that there is still and v small risk).

[Zssu]

Are there less risk factors for breast cancer if you have had your ovaries removed? Ask for the statistics.

I am inverse; Brca1 but went through 2 breast cancers (23 years between them) then for a prophylactic ovary removal and they found a cancer there too. There was breast cancer in my family but only one person.

Of course it is easier? to find lumps in breast tissue than ovarian cancer invasion. Difficult decision for you but thought I would add my experience. I have not had any reconstruction because I wanted to be able to check my breasts easily. My scars were done in curves along my rib line and have disappeared, I am very slim and I feel quite comfortable living flat.

I wish you the best of luck with your decision and future health.

Zsu

[Perthgirl]

I am BRCA1 + , Stage 3b HGS and decided to have prophylactic double mastectomy on the advice if my oncologists and breast surgeon as the risk factor is so high. Had the op done in January, direct implants, did not do nipple sparing as I wanted to have as much tissue as possible removed. It was a huge decision to make but I felt that I couldn't deal with the risk of another cancer on top of OC. Please pm me I'd you want to know more. Wish you all the very best 🌹

[CookieCake in reply to Perthgirl]

Thank you very much for your reply, I will pm you x

[mupash]

MY ONCOLOGIST CHECKS ME WITH AN MRI OF THE BREAST AND SIX MONTHS LATER A MAMMOGRAPHY WITH ULTRA SOUND. WE DO THESE EVERY YEAR. NOT WILLING TO DO DOUBLE MASTECTOMY. I AM BRAC2 AS WELL. HOPEFULLY, IF ANYTHING STARTS WE WILL CATCH IT IN VERY EARLY STAGE.

[CookieCake in reply to mupash]

Thank you very much for your reply x

[Ruthie46]

Hi Cookie I went through a preventative mastectomy 5 years ago after finding out about BRCA2 gene. I had a family history of both OC and BC. Having your ovaries removed does lower risk of BC to around 50% I think but check with your surgeon. There's lots of different routes for mastectomy surgery - I went for a direct to implant route and healed ok after surgery (had to go smaller bust size but was ok with this)- it was the emotional impact for me that was most challenging. I'm fine now but having implants was a weird adjustment at first -I felt like I was going to bed with my tights on at times and so wanted to take them off ! - but in hindsight it is and was the right decision for me. There are options for a more natural reconstruction but I didn't opt for them because of longer surgery times. Its so tough as all you can really do as go with your own instinct. So many stories out there.