Mastectomy or not?

[ayrtonhenry]

Hi all, this is my first post. Have had OC for 19 months and I have also tested positive for the brca 2 gene. I think that I want to go for a preventative double mastectomy but I am dithering. I havent even mentioned this to my doctor but I am of the opinion that I should try and help myself as much as possible and remove any threats. What do you think?

[Lyndy]

Hello ayrtonhenryIt’s a dilemma. I found out I was BRCA 1 as part of my first line treatment for OC in 2015. I decided against having a double mastectomy and opted for annual monitoring.

My reasoning was that my OC was stage 4 and I was recovering from optimal debulking, which was quite enough at the time. The geneticist told me that my risk of BC was actually declining with age and no one in my family had BC.

I felt it was the best I could do in the circumstances, I badly wanted to feel well and facing yet another op felt like a step too far.

I haven’t developed BC but my OC returned last year and I am now on Olaparib. I would suggest you think about why you are dithering, is this really what you want right now? If it is then great but if you think you might want more time, maybe consider talking to the geneticist again about your risk. There’s no right answer xx

[ayrtonhenry in reply to Lyndy]

HI Lyndy, thanks for replying. I wasn't aware that chances reduced with debulking surgery, noone told me that. So I will call my geneticist as you suggested, thanks for taking the time to reply. Hope all is well with you

[mrstadpole]

Hi ayrtonhenry

I am in a similar position to you. Diagnosed as BRCA 2, and it was suggested by my OC surgeon that I went to a breast surgeon to talk about my options. He was a researcher as well and due to my age he seemed to think that it would be better having yearly monitoring.

There is no history of OC or breast cancer in my family. I had mammograms but now when you get to 70 you don't even qualify for a mammogram on NHS.I will probably have to have one done privately this year.

Also when I went for my annual check last July I was told that they wouldn't be monitoring me any more as BC declines with age. However I will mention this to my oncologist during my next appointment. I have been taking Olaparib for a year now.

Hope it all goes well for you.Ann x

[Di16 in reply to mrstadpole]

I had my last scheduled mammogram 2 years ago at age 69. I was told by the radiographer that I could choose to request another one in 2022 if I wished by contacting the hospital's mammogram department.

[mrstadpole in reply to Di16]

Thank you Di16.I'm going to check this with my oncologist but it does seem strange if you are BRCA +ve that you are denied a mammogram on NHS whatever your age.Are you based in England? I live in the South West

[Di16 in reply to mrstadpole]

Yes, I'm in East Anglia. I have not been tested for BRCA as my OC is GCT (so many initials!) GCT is normally due to a different faulty gene, FOXL2, a fault which will have developed in my body & is not inherited or passed on. So there seemed no urgency to test for BRCA. But I was still told at my local hospital I could request another mammogram next year. I don't know whether this policy has been different in different hospitals, & I guess covid may have changed things. I've not had all the ct scans I should have had i the past year because of covid.

[Heart12345]

Hi Ayrtonhenry, I’m brca2 also and have just started last 3 chemo sessions after having my radical hysterectomy with debulking surgery after my first round of 3 chemos. Then on Orlaparib. I’m 58 and diagnosed stage 3c/4. My mum and sister had breast cancer my sister is brca 2 and still around 40 years after her diagnosis and treatment she was brca2. We never knew if mum was brca2 as before testing. I always thought I’d get bc not really oc but here I am.

I think it’s not a bad idea about thinking of a prophylactic mastectomy but it’s probably to do with timing which is were you need to talk with your oncologist. Removal of your ovaries which you had done during your surgery I think lowers your chances of getting bc but your doctor will help you make a decision about monitoring or further surgery. I’ll probably be talking to mine in the future with same questions.

Wishing you well with your decision 🤗

[Rankij11]

Hi , I’m BRCA 2 and daughter carrying gene . She has been under care of the St Thomas’s protection scheme and they will organise yearly MRI scan . So this should be available to you I would think .??? They are hugely supportive .I think your decision would be based on your age as well ???

Think you need more informed opinion to help you on this ???

Jennifer

[Entito]

Hi there, I found out I carried brca2 almost a year after diagnosis. I was 57 then and decided against mastectomy as was told there was a small chance of getting B.C. in the next ten years. If I'd been younger or had a family I may have felt differently. I opted for annual mammograms and so far all good. I've been in remission since summer 2013 and very grateful! Good luck with whatever decision you make.

[delia2]

Hi. I have the PALB2 mutation which gives me a 58% chance of getting breast cancer as do my sister and daughter. We are in the US and are monitored every six months alternating between a breast mri and a mammogram. My oncologist said Olaparib would be protective against breast cancer as well as ovarian but it’s not a sure thing. You are much younger than I am and that would be an important factor to consider. Good luck with your decision. Xx

[Leniko]

Tough decision. It’s a huge surgery requiring long healing time. Diagnostics are amazing these days. Mammo’s, breast sono’s. But the final decision is solely yours. Praying for you!!

[mupash]

HI- YOUR DECISION IS YOURS TO MAKE BUT I HAVE NEVER BEEN TOLD BY ANY ONCOLOGIST THAT THE CHANCES OF B.C. DECREASE WITH AGE. THE LITERATURE FROM THE GENETICS PLACE THAT DID MY GENETICS SAID IT INCREASED WITH AGE.

I AM BRCA2 AND HAVE HAD OC. I AM NOW ON OLAPARIB. I AM OLDER AND CHOSE TO DO SCREENING EVERY SIX MONTHS, ALTERNATING BETWEEN MRI AND MAMMOGRAPHY/ULTRASOUND. ARE YOU ON CHEMO NOW? MY COUSIN IS ALSO BRCA2. SHE IS A YOUNGER COUSIN (48) AND CHOSE TO HAVE A DOUBLE MASTECTOMY AND RECONSTRUCTION. SHE HAS GONE THROUGH IT BEAUTIFULLY AND FEELS SHE HAS ELIMINATED A LOT OF WORRY BY HAVING IT DONE. ARE YOU SURE THEY WON'T DO REGULAR SCREENING IF YOU ARE BRCA POSITIVE?

DOESN'T SOUND RIGHT??

WISH YOU LUCK WITH YOUR DECISION-

LEE

[Itha]

Hi, check your breasts every day - then you will notice if anything changes. Mammogram once a year and then do another scan once a year (6 months apart). There are new types of less invasive scans (can't remember the name now). I am BRCA1+, OC stage 4 B. I have been facing the same dilemma, but then I read a very recent report where they compared women who had a mastectomy vs. women who did the 6 monthly checks and daily examination. The women who did the regular checks did better. If I can find that report again I will share it. It convinced me to NOT do this surgery. I think my body has had enough to deal with already (6 x chemo, mass debulking, ongoing Avastin, and now if everything gets approved - Lynparza)

[Hidden]

I was diagnosed with OC in the mid 2000s and have been taking olaparib for several years now. I am BRCA1+. I decided from the outset not to have a prophylactic mastectomy and I still think that was the right decision for me. (I have made a provisional decision that if I get BC I will ask for a double mastectomy with no reconstruction). My focus has always been the OC. Having had 3 recurrences including 2 major surgeries and 3 courses of chemo, I feel I have had enough to deal with. I was also told by my genetic counsellor that my chances of BC reduced after my surgery for OC, tho they are still high compared to the general population. My concerns were about the impact of the extra surgery on my body, and the risks involved in the surgery itself. I figured my body had been through enough trauma as it was. I get an annual mammogram and MR scan which would at least flag up any BC. It's not ideal. I don't like the extra radiation especially on top of my regular CT scans, but it's a strategy that has worked for me so far. I also think that the olaparib probably has a preventative effect.