When I was diagnosed with ovarian cancer I was not aware that ovarian cancer was linked to breast cancer and that I had a genetic mutation running through my family. Genetic testing was not offered to me initially as I was only asked about my mother and sisters and they had not had cancer. However I have since found out I do have the BRCA1 genetic fault and it is responsible for my cancer. This fault can be inherited through your mother or your father's side.
If you or any family member has had:
~ ovarian or fallopian tube cancer at any age
~ breast cancer at age 50 or younger
~ breast cancer in both breasts at any age
~ both breast and ovarian cancer
~ male breast cancer
and if more than one family member on the same side of the family has had any of these cancers:
~ breast cancer
~ ovarian or fallopian tube cancer
~ prostate cancer
~ pancreatic cancer
you should see a genetic counsellor and enquire about testing.
Dear Charon, thanks for posting this up. I wasn't offered genetic counselling even though the hospital were aware my sister had breast cancer and my father had prostrate cancer. My daughter prompted genetic testing through visiting her GP and asking if this could be done.
Funnily enough we were wondering what had happened to the test as it was done in March, and I received a phone call from the genetic testing centre yesterday to say they'd lost my results so we have to go through the process again.
I'd urge anyone with a history of these cancers in the family to press for genetic testing as I believe it does open up new treatments if you have the BRAC1/2 gene.
I hope this is the case for you.
best wishes. Annie
This is so interesting.... Thank you Charon and Annie.... love x G x
Yes Whippit you are right - the treatment I am on (parp inhibitor) is particularly suited to BRCA-mutated cancer so knowing this information is very important.
I also had a double mastectomy, after testing positive for the BRCA mutation, to reduce my risk getting of breast cancer as well as ovarian cancer. My sisters and children have also tested and now informed with the knowledge can be proactive in reducing their risk of cancer.
Likewise I was not offered genetic counselling despite my mother dying at 45 with breast cancer and a first cousin having a mastectomy in her mid-twenties. I asked the consultant to refer me the last time I saw him and he said he would but warned that results take upto a year to come through. I want to know for my daughter's sake whether there's a defective gene in the family.
Liz X
LizK, Ask to see a genetic counsellor. My results took 8 weeks to come through. My daughter was tested recently and her results took less time to come through.
It isn't necessarily all that easy to get genetic counselling. I tried the Macmillan Opera tool and it said that I should ask about genetic counselling, because my grandmother had breast cancer in both breasts. I did ask and was told that I was not eligible because my mother and my sisters had not had cancer. I'm not particularly happy about it, but I don't see what I can do, as there is no way we could afford to get it privately.
Who advised you that you would not be eligible for genetic counselling? My mother and sisters have not had cancer but my grandmother and an aunt had both breast and ovarian cancer. I had to provide all my family history information and push to get an appointment with a genetic counsellor.
I don't know where you are based but if you wish I could ask for specific advice about eligibility from my genetic counsellor who is from the Clinical genetics department at Great Ormond Street Hospital which covers a number of clinics in London and Essex.
My gynae oncologist told me this. She said I had to have a first degree relative affected to be eligible. She did say that mucinous tumours are less likely to be the result of BRCA defects than serous tumours, which is fair enough, but doesn't say anything about the risk of other defects!
I'm in Sheffield. I don't know if the same rules would reply, but I'd be interested to find out. If you think of asking what the rules for eligibility are next time you see your genetic counsellor that's great, but don't worry about it if there isn't time or opportunity.
I think one important fact in all this is the that everyone is asked specifically about their mothers, sisters etc. Many people I have met have remarked that luckily there is no cancer in their mothers side of the family, only in thei rfathers!! I inherited my BRCA2 from my father, he is in his 80s and has never had cancer, despite carrying BRCA2, BUT his paternal aunt had breast and then ovarian, her son had prostate and 2 of his sisters have had breast cancer. If you see a genetic counsellor they will check both sides of the family. My test took about 3 months to come back.My brothers and fathers test results came back much quicker. One brother is positive one is not. Now the next generation know the score and have plans to get tested. They were advised, as it is BRCA2 to get tested by 30, if they want to.
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