Braca1

[Clifden1]

Hi guys I have just being told I am braca 1 positive I had a visit today with my oncologist who was very happy with my progress to date I have just had surgery and was getting a date to finish my chemo I was totally unprepared for the result I was just wondering if anyone else with this prognosis went for surveillance or had a double mascsatomy just looking for advice or guidance xxxx

[Katmal-UK]

Hi. I was advised I am BRAC2 and decided to be monitored . I currently have annual mammograms. Its a personal decision because at the time Id had enough surgery etc. Also Id been told I had. couple of years so for me enuf was enuf. I hope you make the decision that us right for you xx Kathy xx

[Doglover1410]

I am BRCA2 and wished I had found out in 2005 with my breast cancer! My oncologist hasn’t discussed surgery (which I would have!) but am having a yearly mammogram to monitor x

[Wonnie]

HiI found out I was BRCA1 many years before getting cancer. I had preventative oophrectomy aged 39 and a double preventative mastectomy a few years after. I still ended up with primary peritoneal cancer aged 47.

BUT - the preventative mastectomy at the time felt empowering. Both breast and ovarian cancer were very common in the family which is why it was so important to me. I'm still pleased I had it done.

I guess the only other consideration is if you have children. Having now had cancer twice and taking Olaparib, it is my wish that my children don't pass this gene any further down the line, so I will talk to them about using IVF to have their own children. Its a highly personal decision, but any preventions (surgeries, IVF) are a breeze compared to the mental and physical struggle with actually getting cancer.

Can't say whether I'd have had the mastectomy if I'd had cancer first - suspect I would.

So long as your decision is what you're happy with, then its the right one.

Siobhan x

[Mummawoodsy in reply to Wonnie]

Hi siobhan - just interested to know what treatment u areDoing and did the oliparib work for you cos my cancer returned

In theee months while

I was on that ....... love to hear your story! With love lorna

[Wonnie in reply to Mummawoodsy]

Hi LornaI went onto Olaparib after first recurrence which was treated successfully with chemo. I've been on Olaparib for 2 years now, NED at last check up, the worry never goes away though.

Siobhan x

[delia2]

Hi. On the bright side being BRCA positive means chemo and PARPs work better for you. If you have children they will have to be tested. Both my stepdaughters are positive and for brca2 and I have PALB2 which gives a 58% chance of breast cancer. My sister and daughter have it too. We are all getting surveillance every six months. In the US they alternate breast MRIs with mammograms. My daughters are getting their tubes removed and then their ovaries at 50. My oncologist says that being on a PARP and having CT scans every six months should be protective for me. I know it’s shocking to deal with the news. I hope you will be going on a PARP. It’s been a game changer for me and many others, notably Katmal.

[Mummawoodsy]

Hi there -Yes I’m brca1 and after xxxneg breast cancer in 2016 I got the test done 2018 and it was positive so had ovaries and boobs removed. According to my surgeon who did the debulking op I’ve been incredibly unlucky cos got

Peritoneal cancer in 2019 and now told I’m incurable - I’m

On weekly taxol which gives some

Quality of life I can’t complain -

Lucky lockdown here as haven’t got FOMO ! But when everyone starts partying post covid I’m gonna find

It hard as energy levels just won’t get me there......... I’m sorry this isn’t good info but I was never told

It could

Go to my peritoneum so I thought I had irrational bowel syndrome

For weeks before they realised it was cancer. Knowledge is power. Just keep eye out. Good luck to you x