Hi Nx I am a 64 year old man who after getting primary BC on both Right and left sides 9 years apart was sent for gene testing and I have the mutant BRCA2 gene. I have had PSA tests for Prostate cancer and thankfully all ok. I am deeply concerned about my daughter I have given her the information and letting her deside for herself what she wishes to do.Wishing you all the look in the world'
Thank you for your advice - very helpful
I hadn’t thought that my bro might be dealing with my cancer etc.
My niece only 10 ! So you are right plenty of time ahead to get her tested if my brother has a BRAC gene from either side of the family
It is very hard to know who to tell and when as this affects many family members, who needs testing and how far up and down the failmy tree the gene goes.
We are still early into the testing not sure weather the gene comes from nana or grandads side. My brother was advised to get tested when he is in his 40s as he has a daughter and if he does have the gene they would not be able to test her until she is older so he is in no rush to get tested. He has agreed to have the test so he can be clear if his daughter is at risk. Maybe your brother just needs a bit more time to concentrate on what you are going through and in time will decide to have the test. Im sure They will test his daughter when shes older (if she is younger than 30 at the moment) if your brother does decide against it.
It must be hard to go though so much to be where you are today with your current diagnosis. I feel you must be strong to go though a double mastectomy at a young age, was this a decision you was 100% on or did you feel pressured into making the decision. With them finding DCIS was you monitored yearly or did you fall in to 3 year testing after having the preventive surgery?
Sorry for all the questions.
Hope everything goes well with your treatment x
Thank you! Tough for all of us with heart wrenching decisions to make.
What is so puzzling is that I’m told the BRAC2 gene is inherited from my mum’s side of the family but she’s 85 and fighting fit & no cancer ! As was her mum who died @ 88, again never had cancer.
Then the dilemma of telling my mum or not although I’ve been told the risk to her now is very low but I feel I’m keeping a big secret.
I’ve told my brother who is in denial and won’t get tested. He has a daughter
Thanks for your reply I'm sorry to hear of your diagnosis. It must be really difficult to go through it so young for it to make a return. Is a double mastectomy something you have thought about after your first diagnosis or was this not suggested my the doctors as they didn't know you have the brac2 gene. My mum passed away from cancer 6 years ago after getting breast cancer in her 30s for it to return in her 40s. She dint know she had the gene and we dint find out till earlier last year that's why testing was offered to me. I have 2 young girls so I know that theres a 50/50 chance i could have passed the gene onto them. My head is all over the place at the minute part gilt for my children and not knowing what is the best decision to make to ensure I get to spend a long time with my children as I was only 25 when my mum passed.
Hope everything goes well with your current treatment.
I’m so saddened to hear your story.
Reading women’s accounts like yours on this site is very humbling.
I bhope you stay strong in spite of this difficult time.
I tested positive to the BRCA2 gene when I was 28 (2008). I chose to have a bilateral elective mastectomy & immediate reconstruction. Upon path lab checking my removed tissue that I was told I’d already had DCIS.
In 2012 I was diagnosed with stage II er+ breast cancer. I had more surgery and was discharged. No treatment or further screening.
in 2016 I was diagnosed with stage IV breast cancer- it had migrated to liver, lungs, bones and sternum lymph nodes.
My story isn’t the same for all BRCA patients. Mine unfortunately is probably due to neglyon my surgeons part.
Good of luck with whichever route you choose xx
I was told I had the BRAC2 about 6 weeks ago. Big shock as I’d recently been diagnosed with breast cancer for 2nd time. Different cancer in different boob. The first time when I was in my 30’s.
I’m older than you so will have my ovaries and tubes out probably within year.
Best advice though is to take your time and have regular checks. We’ve had gene since we were born! I feel everyone pushing me to have major surgery - double mastectomy , ovaries out while still being treated for breast cancer.
I've just found out that I have the brac2 gene a few days ago at 31. This is all very new and I've been searching for someone who has tested positive for the gene and what route they took. I have been told that I will be on year mammogram and MRI's as if I was to get breast cancer the earlier they find it the best chance they have of curing it. There is an option to have a double mastectomy (prevention surgery) and also when I turn 40 have my ovaries removed. Would be great to find out what other people going through or been through getting tested positive for the brac2 gene.