BRCA 1 and BRCA 2

[airfemale]

Hi everyone. I received news today that I am negative for the brca gene. It is a giant relief for my family. We all know about the monkey that sits on our backs, with ovarian cancer. I am glad for my family, I am one of 5 daughters. I suppose I question, why me. I am interested to know if everyone, knows if they are positive or negative. It makes getting into trials interesting. It also is so important for family members. I was just wondering

[Hertsmum]

Hi aitfrmale, I was tested as diagnosed under 50 and high grade serous though no family history. I tested negative. Relief of course, but I agree it does leave you even more mystified about why??!! also some trials are only for Brac positive patients, though some are offered to high grade serous patients who are Brac negative too. It's all a bit of a minefield.

would be interesting to know if you are offered a trial in Australia what drug it is. I've not got to that point yet as only 6 months on from first line carbo/taxol.

hope you are doing ok and coping if you are on treatment at the moment .

Madeline x

[airfemale in reply to Hertsmum]

Hi Hertsmum, I am in remission at the moment. I have been on one trial and 2 rounds of chemo. I was diagnosed in jan 2013. So I am going okay so far. It just took them a long time to get around to testing me. Yes. I am afraid that they will exclude me for future trials. My oncologist and I are in for a long talk I guess. It is interesting for me to read about different treatment programs and various things happening over in the UK and ireland. I have only admiration for all the strong women on this site. As I have said before I am a long way away but I share this experience with you.

[peanut2]

Hi Airfemale,

I was diagnosed in 2013 firstly with breast cancer, then a month later with late stage 3c ovarian cancer. I do have some family history of breast cancer mum and a cousin mum's side. I had the Brca screening, it came back negative, and yes whilst not wanting to have it I did feel it would have answered some questions as to why this has happened to me. I would say that there has been little or no conversation with my oncologist about this I even sorted out the screening myself. Ladies here talk about having Brca tendencies and that there maybe other Brac genes that have yet to be found. I'm on second line treatment at the moment. I have come to the conclusion chemotherapy is like sticking a plaster over a gaping wound. I go back to see my oncologist next week before the next chemo, I plan / we are going to discuss what else is out there I don't have the time to wait why am I not being offered more choices.

I have two daughters and lots of nieces and a sister, I don't want any other member of my family to go through what mum and I have.

Keep well keep strong Kris x

[airfemale]

Thanks Kris. You keep well. Goodluck with your treatment. I also was diagnosed 3C. I really liked your sticking plaster thought. I agree. It made me laugh. Regards Sharon.

[thesilent1]

Hi, I was tested because my tumours were high grade serous, apparently this type are more likely to be positive for the Braca gene mutations. I too was negative and I breathed a huge sigh of relief as I have 2 daughters, like you, I then went through the why me stage too. I think that's only natural though!

I have two friends who tested positive and they were told it gives them more treatment options, so I can only assume this is with clinical trials. Don't really know enough other than that.

Ann x

[MaggieN]

Myself and my 2 daughters have an appointment with a genetics councillor on 10 July. My Mum died 10 years ago after having breast cancer twice. Mum's cancer was very aggressive, my Aunt has also had breast cancer twice, fortunately hers was non-aggressive. I was diagnosed with Ovarian Cancer stage 3C in June last year. I am due for my first 3 month check up on 3 July following my surgery and chemotherapy. I am obviously very worried for my 2 girls, and my Sister and Cousins, and hope that we don't have the BRCA gene. It had always been assumed by the doctors that Mum and Aunt developed breast cancer due to HRT, but I think it was wrong to make that assumption, we should have been tested years ago.

[debwood32 in reply to MaggieN]

Hi Maggie I was diagnosed as BRCA 2 last year and as you my worries then went to my daughter sister and neice thankfully both my daughter and sister came back as negative therefore my neice does not have to be tested, but while all the focus is on females my son also needs to be tested as males can also have this and pass it on to any daughters,but as he is in early 20's and no plans of children he as of yet refuses to be tested.

[MaggieN in reply to debwood32]

Hi Debwood, It is so worrying. My maternal grandfather had prostate cancer, so the genetic connection could be prevalent. I also have a Brother, who may need to be tested if the BRCA gene is detected. He has a girls and a boy, and my sister has 2 boys. My eldest daughter is 45 and has a lad. They have already started screening her yearly for breast cancer. My younger girl is only 26 and has only been married a few months, so she hasn't had any children yet, but all of us have said that we'd rather know than be in the dark.

[Alex53]

I'm waiting for the test results. Hope it's negative because positives too scary for everyone else....

[annieH1]

Hi airfemale.I was diagnosed last Sept,advanced stage 4.i was tested for the BRCA and came back positive for BRCA 1 passed down from the paternal side of family.In a way it's good news as only for this who knows what the outcome would have been for my siblings and children and grandchildren.They are going to be screened more intensely from now on and they have app for BRCA test.My grandaughts won't be tested until they're 18yrs.I guess It was a blow and I kept thinking how come no one was tested before me! All of my dad's brothers and sisters passed away from Breast and Prostate cancer and my dad had prostate cancer .Didnt realise until tested that ,breast,ovarian and prostate come from the same gene.I know there are specific treatments here in ireland targeting the genetic form of O.C but I'm still on Avastin which is keeping things stable so they won't change treatment for the moment.x x

[Di16]

I haven't been tested for the brca gene, as my OC is granulosa cell, which has no known inherited genetic link. It is apparently linked with a genetic mutation, FOXL2 which has occurred in the lady's own body, and is not inherited. I'm naturally pleased that there is no inherited link, as I have 2 daughters, & my second granddaughter is due to be born in a few weeks time. I was not aware though, that some trials are only available if you are known to be brca positive. I'll have to ask my onc about that. I have been on one trial, which was specifically for ladies with hormone sensitive tumours.

Di

[airfemale in reply to Di16]

Hi Di16, you have given me hope that it won't exclude me. What is the trial you are on?

[Di16 in reply to airfemale]

I was on a trial a couple of years ago with a tablet catted Arimidex. It prevents the tumours from producing hormones, & they hope that by stopping that, they can stop them growing. There were already similar drugs in use, & they were trialling this one. Unfortunately it didn't work for me. I was tested for the TAXTORC phase 1 trial last year, which they hoped to try me on, but at the last minute my blood sugar levels were too high - I'm diabetic, & for that particular trial, the diabetes control has to be slightly better than mine was at the time. I don't know whether there will be any more I can be considered for,

Di

[Di16 in reply to airfemale]

I could have added that in the TAXTORC trial they were trying a new drug teamed up with weekly taxol. Although I wasn't successful in getting on the trial, I did still get to have weekly taxol on its own.

Di

[judyved-US]

Hi Airfemale....I was diagnosed Sept.2014 with Stage 4a OC. I was negative for the brca gene. Two interesting details I learned from the genetic people at Massachusetts General Hospital......getting OC is just the "luck" of the draw, and we not only have to worry about out female relatives if brca is positive, the male family members are also at risk. I didn't realize that. My sister...age 72...will have her ovaries and tubes removed this summer as a prophylactic measure. Her uterus was removed years ago.

Anyway, I wish you the very best, and the very best to all you lovely ladies on this site.

Judy

[Sherryross]

I see this is a few years old. How are you doing now?

[airfemale]

Hi Sherry Ross, I am okay still fighting on. I have had radiation therapy and still going with my fourth round of chemo this year. Aside from that my CA125 is down to 39. I can’t complain. I feel well and have no symptoms. I will be celebrating my 5 years since diagnosis in January. So I guess I am okay. How are you? Sharon