Hi
I’m having my genetic test in a few weeks, due to my age (30) and the fact that I am triple negative, but the only family history I have is that my dads sister had breast cancer 15 years ago, but is fine now, no one else has had it.
I don’t know how his is gonna pan out, my gut tells me I will be fine, but my head says that History has to start somewhere!
Mandy
Hi Mandy,
I had a gene test last year that came back neg.
The reason for that was i first had bc when i was 30 and then it came back when i was 46, the only link i had with bc was my dad’s sister also who died many yrs ago with bc, i also am triple-neg.
When i first had it they did’nt do tests, but the breast surgeon and the onc thought it a good idea to have it checked out as that was going to be the deciding factor wether or not i was going to have elective surgery on my good side.
I’m really glad it came back neg and they said i was just really unlucky, but i have a daughter and it worried me that it could compromise her. In all honestly when i had the test i did’nt think it would be positive, but you never know, and it is better to find out and know what you are up against.
30 is a young age to go through what we are going through and i know exactly how you will be feeling, but you will be strong and remember i got 16 good years before it came back. Did you have a mastectomy or lumpectomy and how are you feeling, i hope you are doing well.
Love Reneexx
I had an unsuccessful lumpectomy follwed by a mastectomy and finished chemo today So I am on to of the world right now!!!- radiotherapy is not necessary as the Cancer was all taken in surgery and chemo was just a back up plan.
My last trauma on this journey will be the results of this test. My onc did say that many women think that its genetic, however most are a freak of nature, and trust me I am hanging on to that.
Saying that if I am positive, I would rather have a 2nd Mastectomy then go through chemo again.
Have to say I know we are all different but your message has made me feel a bit more hopeful about it all… thank you.
Mands
In 2007 I found I had BRCA2 mutation 8 months after dx of bc. My cancer is ER/PR+, her2-. Approx 15 years ago my sister had bc aged 29 (ER/PR-, didn’t do her2 test then) and was refered to genetics, but it took all this time to confirm she was a carrier. We are the only family members to have developed bc, my other sister also carries the gene but has not(fingers crossed) had cancer. My father died aged 45 (20 years ago) of pancreactic cancer and genetics believe he was more than likely a carrier. Also his brother is a carrier but has not had cancer. Even if you have this gene you may not develope cancer, but what a worry.
My main worry is my kids as there is a 50/50 chance of them being BRCA2 as well, but I have been told they can go for screening from 25 years of age.
Good Luck with your test.
Take care
My daughter (38) has been told that she is highly likely to carry one of the BRCA genes as she has had breast cancers in both breasts plus I was diagnosed last year (65). She is currently awaiting blood tests results.
I had previously done extensive family history research and there is NO history of any sort of cancer in my husband’s or my family in the past 2 generations- all our parents’ and grandparents’ generation have been long-livers and died in their 70s, 80s, and 90s with heart failure, strokes etc.
What to make of it? I have another daughter (41) and two grand-daughters (and 4 neices, all with daughters) - are they all going to be at increased risk too?
Does anyone know if its possible to have brca1 or brca2 tests done privately? And if so how much does it cost?
I know from my small family history I wont be deemed to have it - so NHS will say no point -but I do have 4 young nieces and their future,and there is some history in second degree relatives…
Cathy
I had a second degree relative who suffered breast cancer and subsequently died many years ago and I have had DCIS.
A relative of mine went for genetic counselling on the NHS and was told that it would be better if I had the testing. I was surprised that they would do this with in view of the limited people affected by BC.
I would suggest you contact the Genetic Counselling Service nearest to you and ask - as you may well be surprised by their response.
My young Neice and Nephew were a factor when I agreed to have the test done with not having kids of my own, however my brother has decided he doesn’t wish to know the results as he wants to live for the moment. He is happy that he and his wife check themselves and they will educate the children when they are older… I understand his motives, I almost decided not to have the test done for that reason… part of me thinks “lucky him!!!” This cloud will be over my head for the rest of my life… whats more bad news I thought… it can’t get any worse than actually getting Cancer… But then I thought, but what about the Kids, when they are older they may wish to know the results of my test - if he ever tells them anything about me. Its very difficult as I’m not exactly close to my brother, he lives abroad and we havn’t seen him for over 3 years and he won’t talk to our Dad (he’s my half brother). But I would hate for something to happen to he kids later in life because HE wanted to live for today. Its so easy for something bad to get missed.
Families hey!!!
Hi,
Im have the brca2 gene and was told if i couldnt wait the 2 months waiting time i could pay private. I waited as i already had cancer and had just finished chemo and was about to start radio at the time plus its expensive my genetist told me it would cost around £1,500 - £2,000. The blood gets sent to America and you will get results back in 3 weeks. Its alot of money dont you think.
Leslee x
Hi Cathy, I had very little family history and was still referred (by the NHS) to my local genetics centre…went through my onc rather than my GP and got a very quick appointment. It’s only since my test my Mum was sadly diagnosed with ovarian cancer, she died days later. I’m neither BRCA 1 or 2 but even so my sister is having early yearly mammograms and has had a oopherectomy and my daughter will be monitored too.
Belinda…x
hello everyone, I read in my medical notes a reference to having a possible genetic test. i saw these when first dx last year. My mum had bc at 48 (she is now 74) ER+ and I was 38 at dx also ER+. The only other family member with bc was an aunt of my mother’s on her father’s side who had bc in the 1940’s ! I want the test but my younger sister does not want it. When i said I would do it she thought my bc was entirely due to having hrt ! I don’t think it helped but as you all know bc is multi factorial and I maybe had too many risk factors together. I would rather know than be ignorant.
Rachy
I have Brac 2 gene. My dad’s side of the family carried it, as they were all leaving us one by one, me and dad were the only two left. my dad decided to go to London Royal Marsden in 2006 to find out what was going on. apparently this gene (BRAC2)is connected with cancer. My dad has prosphate cancer and I had Breast cancer. I had a lump removed from my breast. I did not have to have chemo but I did, and radio,then my ovaries removed and a double mascetomy and reconstruction in the same operation. that was my choice. it was hard and the reconstruction was uncomfortable, and I was not even sure I was doing the right thing. I was 37 at the time. I do remember after the operation looking at my breast and they had removed my nipples, i was horrified, I felt that I was no longer a woman, but then soon thought about my 3 lovely girls waiting for me to come home, PLEASE anyone who is alone out there don’t be. Private message me and i will give you my email and I will do my best to help in anyway I can. NO ONE NEEDS TO GO THROUGH THIS ALONE. my dad went private at the Royal marsden, he was told not to eat red meat and to eat plenty of omega 3. Why did my doctor not tell me this? take care Gina x
Although there was very little family history in my family of breast cancer except for my father’s sister…who survived for many years after her diagnosis and died from a heart attack… it was the fact that my mother died from ovarian cancer and I had developed breast cancer was the reason I have been tested for the BRCA1 and BRCA2 genes. I am still awaiting the results. I was diagnosed originally with high grade DCIS and underwent surgery to remove the breast with an immediate resconstruction. Unfortunately the disease was also invasive and I have had chemo, radiotheraphy and am currently receiving Herceptin because I am HER2 positive. Although the geneticist feels the risk of me being a carrier was low he was prepared to carry out the test because I have two beautiful daughters who also have daughters and should I be a carrier it gives them the option to go for further screening.
Lyn
what a difference of genetics doctors.
I was refered to genetics as my maternal grand mother had BC in last 40’s and died form extensive secondaries. On my fathers side my great grand mother had ovarian and extensive secondaries died aged 69 and 4 of her daughters had BC. The genetics doc did not think that was a strong link to do the test!!! It seems mad with that history with my being DX at 29. As some others have said just because you have the gene does not mean you will def get cancer although the odds seem very high. I am only getting the test as there is a study looking for other genes and they test for Brac1 and 2 in the process but might not hear for a year - so its a long wait.
Vicky
1 was originally referred to genetics when i got ER/PR + cancer at 37, 18 months after my mum had it at 57… no other family history of BC or ovarian ca.
i was told there wasnt enough history but could join a research trial for brca3 who would check it for brca1 and brca2. it came back negative.
i since got BC again age 40 this time triple neg and both radiologist and surgeon thought its genetic so being re-referred but onc thinks its just a fluke and that they wont do any more tests… but he said it was possible that a gene could have mutated in the last 3 years.
i thought genes were mutated from birth but surgeon says not always and the mutation has to start somewhere.
the original test took about a year to get the results
hi im jude im 35 and mother to 2 young girls i have brca1 so had preventive oopherectomy last year and offered double masectomy with reconstruction
i knew i had a gene mutation before i got results as cancer had my great gran nan mum and sister with breast or ovarian cancer all at extremely young ages
for the sake of my children and myself i feel lucky to have found out now and do wotever i can to reduce my risks as many people dont get that chance to help themselves
goodluck and if your found to have a mutation be gratefull you find out before the big c bites ya bum! be positive and feel lucky that science is improving in genetics
takecare jude
I was sent for genetic testing because my Mum had ovarian and my paternal Aunt breast cancer. I was told I was borderline for testing as there was just one relative on either side. I tested positive for the BRCA2 gene but I haven’t found anyone else in either side of the family and I’ve been doing the family history for about 5 years!
Hi all,
I wanted to highlight that Breast Cancer Care is now running Family History Telephone Support Groups for people diagnosed as gene carriers for breast cancer. Here is a link to more information:
breastcancercare.org.uk/server/show/nav.631
Kind regards,
Kate, BCC Facilitator
I have posted this on behalf of new users Helen.
Regards Sam (BCC Facilitator)
hi my name is helen i am 35 and on friday was given the news that i was positive for the brac1 gene,i am still not sure how i feel,i am still very confused at the moment,especially as my sister got a negative it came as more of a shock,i do no that i feel very alone and isolated,i no i have a lot of desisions to make in the near future as to surgery i only hope i can find the strength to deal with it all…i would love to talk to anyone in the same situation as me…take care all
since i posted in june i did get further genetic test in october and due to get the results in the morning… the last time i got a letter telling me they were negative this time i have a letter to discuss my results… probably still negative but doesnt your brain work over time and analyse things that probably arent there.
fingers crossed its negative again.
Lxx