PPC cancer and considering risk reducing surgery for BRCA1 gene, help please.

[Julie40]

Happy New Year everyone. I'm not a regular contributor to this site but do read often and take great confort and inspiration from it so thank you all.

I was diagnosed with stage 4 PPC in April 2014 and thankfully it seems to be under control after chemo/surgery. I have since had confirmation that I have the BRCA 1 gene. I'm in the consultation stage with genetics/surgeons about a double mastectomy to reduce risk of Breast Cancer. I'm keen to hear from others with a similar experience. All feedback appreciated. Thank you Julie xo

[Jackie0]

Hi Julie,what a dilemma!!! It's a double whammy isn't it? ,first getting OC then finding out you are BRAC positive.

I am currently awaiting for my genetic test results, to be quite honest, unsure as to whether I could cope with the radical surgery after the extensive surgery I had nine months ago. I know that if the test is positive then the risk of breast cancer is high, but wonder if regular mammograms wouldn't suffice.Have you discussed this with your consultant.

Bottom line for me is that am more worried about passing on ti my daughters if I am positive.

Double mastectomy may be a life saver but much to consider.Best of luck, let us know what you decide.

Much love JackieO

[Julie40 in reply to Jackie0]

Hi Jackie. There is so much to consider and it's been tormenting me at times. I normally quite decisive but this is a minefield ! I have two daughters and a son, facing the possibility that I may have passed this on broke my heart. It has taken months now for me to accept that it really is out of my control and take some comfort in the fact that they can be tested and have the options to reduce risk. It means that no matter what happens my cancer could save them from the same fate. There are no known others in my family that have had this. I'm very lucky that my Oncologist in the Christy clinic tested me because if I was bring treated at home in N.Ireland I wouldn't have scored highly enough for genetic testing.

I've discussed screening but feel that it would always be on my mind and after battling so hard to get to this point with my other cancer don't want to be stressed and upset with the worry.

I've had 3 major ops this year too and the thoughts of another is really tough as I'm finally feeling better but I'm trying to balance recovery from op v fear if I don't. It's just so much to think about.

Thank you got responding. I hope you get good news. xo

[Hidden]

Hi Julie,

What a lot of tough stuff to consider and get your head round.

I tested negative for BRCA, but have had BC as well as OC and the BC was the type most associated with BRCA, so, in a limited way, I did have at least start to think about these things, but I was a lot older than you are.

I wondered whether you are aware that there are support groups for BRCA ( I just did a little Google research)?

Wonderful as this site is, their members' specialist knowledge and insight could be helpful....

If you want, I'll send you a PM with the links ( but you may already have got there yourself)

All the best

Chris xx

[Julie40 in reply to Hidden]

Thank you for responding Chris. I've been to a brca conference and that really helped. I didn't get a chance to speak to many women but there are support groups. I haven't told all of my family yet so trying to keep it under wraps until I have. Northern Ireland is such a small place and I would be sure to meet someone ! I'm planning on telling everyone in two weeks then I can come out of the closet

[thesilent1]

Hi Julie, sorry to hear you have been confirmed as Braca1. A lot to take in for you all. As you know Pamela is in the same position as you. I'm sure there will be some ladfies on here who are in the same position and will contact you soon. All the best. Ann xo

[Julie40 in reply to thesilent1]

Thank you Ann. I have a date in the diary to tell the rest of the family and was going to ask Pamela if she would like to come to some of the support groups with me. There is so much to take in.

I hope you are well. See you soon xo

[janegoods]

22 years ago I waded through the treatment and surgery for aggressive breast cancer on left side Had radical and lots of chemo. Now past summer, I am diagnosed with Stage 2 Ov Ca and have huge surgery and dreadful frontline chemo which I didn't tolerate so well. It had been mildly suggested I have my ovaries removed a year ago by an obgyn who glanced at my chart She did not however urge testing for BRCA 1 and 2.,then diagnosis with huge mass removed and the BRCA 1 test proves that to be my situation...now one suggested a right side mastectomy. I am still recovering from May 28 surgery and six months of aggressive treatments plus clinical trial drugs and trying to put doe of this together, I feel relieved that I did not cause the cancer to happen to myself (I am fit, healthy and eat wight with perhaps too much red wine for fun) but I didn't give myself cancer...it is "in the cards.: I wish I had been urged more assertively by do to remove my ovaries...and now, face decision about another mastectomy, Any ideas ladies?

Be well as you face a new year..keep plans moving forward to do the rings that bring you pleasure,

Jane

[Julie40 in reply to janegoods]

Jane there is so much to take in and your situation sounds complex too. Strangely it did make me feel better too knowing that it was genetic and there was nothing that I could have done to prevent it as I didn't know about brca. Red wine is good for you, we can't give up everything that is good.

I went to a brca conference and spoke to a surgeon that pioneered the double mastectomy to reduce cancer risks. He helped move me along in my decision making. I'm not quite there yet as it is scary but need to. It's so difficult making decisions. I hope you get the info/advice you need to help make your decision easier too. Xo