hello peeps. Right here is my story.
i was dx last year with BC in left breast. aged 26. had WLE followed by 6 xFEC and 33 rads. one year on and head of hair and feel getting back to ‘normal’.
my BC was NOT hormone receptive. grade 3.
my mother had BC 3 years ago. she was 47, had WLE followed by 6 FEC and ££ rad. she too was NOT hormone receptive and grade 3.
NO ONE in our family tree has had BC before us. We both eat healthy, do not smoke or drink and take regular exercise.
So after all this we went for Genetic testing, they ruled out BRAC1 as could not find the gene. great! then they ruled out pg53 gene as could not find… so we are now a bit lost as to where the BC came from. going back to have another chat with genetics team. Seems so bizzare that in that short space of time we both got the bl***y thing with exactly same side and grade.???
Anyone else got a similar story? would love to hear
There is no history of BCin my familt but my mum had ovarian Ca, They tested me and found a gene but I was told that even if they couldnt find the gene it didnt mean I didnt have it.They explained that it was like looking for a spelling error inThe Encyclapadia Brittanica!!
hi nadia, sorry to read your story. i have brca2 gene and while upset at that due to cancer on both ends of family i would have hated to be told they did’nt find gene fault as due to young women in family being diagnosed in my opinion there had to be something wrong somewhere and as you will be aware just because they cant find it doesnt mean its not there. is there cancer on your dads side of the family? i know that wouldnt explain your mums cancer but brca2 has been passed to me through my dad xx
I go for my results next week (it’s been just over a year since I was tested).
Part of me thinks that I don’t have one of the genes but a ‘family history’ and then I get thinking what’s the difference between family history and having one of the genes? My mum and aunt were both pre-menopausal (like me) at the time of their diagnosis.
There’s no cancer on my dad’s side but is my mum’s plus my granddad had lung cancer (and his brother did) but there’s no link with breast cancer and lung.
Family history is where there are a few people in family diagnosed with breast cancer which could then increase your chances, a faulty gene is where the gene is mutated and increases your risk quite drastically (ie breast cancer up to 85% and ovarian cancer upto 65%) dependant on which gene fault is in family. you can also pass faulty gene to any childre you may have. the faulty gene doesn’t surpress any cancerous cells and usually with a faulty gene you are most likely to develop cancer at a younger age whereas family history can be sparadic and not follow any pattern. hope this helps and good luck with results x
I have no faulty gene found but have lots of cancers in my mums side (breast, ovarian, bowel and leukaemia mainly). In my mothers generation of our family tree there is only one relative left un-affected by cancer.
I have had statistics given to me of the likelihood of cancer ranging from 80 - 90%.
Pinkdove - I, like you, could not find a difference in my mind between having a gene fault or not. I wondered why I waited nearly 2 years to be told that a fault could not be identified but to assume I had a high risk anyway. The outcome was the same as far as I could tell. Good luck for your results anyway. Do you plan further surgery to reduce risk?
Thanks for your comments. I’m not really sure what I’ll do if I find I do have one of the faulty genes as I’ve now got secondary breast cancer and my initial chemo (13 years ago) put me into an early menopause so if they suggested an oopherectomy (sp?!) I’m not sure whether it would do any good. Also, I’m not sure what I would do with regards a bi-lateral mastectomy - hard decisions to make sometimes and you don’t always know what’s for the best.
I went for genetic testing about 8/9 years ago but was told that the testing wasn’t that accurate at that time so I didn’t pursue it further. This came about because my oncologist at that time wanted me to come off Tamoxifen after five years but my GP didn’t want me to as there wasn’t a lot of stats around for family history and Tamoxifen. Anyway, I managed to find a consultant geneticist at Addenbrookes and he told me I should definitely stay on Tamoxifen, which I did for 10 years before my cancer came back.
I understand the difference with the genes and how it can be passed on but, like you’ve said Jackie and I have, what is it in the family history side that may trigger it?
I hope they do get to find out. I feel for my daughter and the decision she will have to make at some point in her life. In a way it would have been easier if they had found a faulty gene then my daughter would know she had a 50% chance of having it and could be tested. But this way it is very vague and, like me, she has to ‘presume’ she is at risk due to the family history.
I too asked for genetic counselling approx 10 years ago and, despite the many cousins and aunts who had died of various cancers, I was sent away until I had two 1st degree relatives diagnosed. My sister is my only remaining 1st degree relative ,appart from my mum, so when she was diagnosed for a second time I asked if this counted as two relatives. My mum took part in the Tamoxifen trial when she was diagnosed first time, approx 15 years ago. She was un-aware at first if she may be on a placebo but she took it for 5 years and was told afterwards she had not been on the placebo.
Have a good weekend, and I hope you get to see some sun!!!
Hi…I don’t have BRCA 1 or 2 but my sister is having annual mammograms because of my family history and she had her ovaries removed last month. My daughter will be offered screening from her early 30’s. For Pinkdove: I was also offered ovarian screening but like you have mets and already have 3 weekly bc tumour markers taken. It might sound a foolish decision but I haven’t taken up the offer, I’ll just deal with this cancer for now, perhaps I’ll change my mind at a later date.
I went for genetic testing as my paternal grandmother died of ovarian cancer aged 69 and her sister died of breast cancer in her 70’s. Since my appointment and results my Mum, aged 70, had a diagnosis of advanced ovarian cancer just a few days before she died. Her father had prostate cancer and died aged 69 and her brother, mid 70’s now has leukaemia. I was diagnosed with stage 4 breast cancer from the very beginning at 44, five years ago.
Have found out this week that I’ve got the BRCA2 gene and am okay with this news as the mets diagnosis was far more devastating for me although it may have huge implications for my cousin who is now going to be tested as she doesn’t have cancer. Also my brother is now going to be tested.
Belinda - I discussed the ovarian subject and my feeling is that my mets will probably get me far earlier than the possibility of ovarian as the percentage is lower in BRCA2 plus I really don’t want to go through invasive surgery either.
They’re not sure whether it was my nan or my granddad who was the carrier (they were second cousins) but if it was my nan then it by-passed her but she passed it on to my mum and her sister and then ultimately me or it could have been my granddad! He died of lung cancer but there’s no connection there
My two sisters and I found out last year we are BRCA2, 6 months after my diagnosis of bc. One of my sisters had bc aged 29 which was 13 years ago and my father died at 45 with pancreatic cancer 20 years ago. My sister went for genetic screening 4/5 years after diagnoses and it took them 8 years to find this faulty gene. My fathers brother has also been screened and carries this gene. My sister has just gone through oopherectomy, had her other breast removed and double reconstruction, my other sister will just be screened. I had oopherectomy in January and subsequently bc was found in ovaries, tubes and peretinium lining, think thats its name!!! Hopefully Femara keeping everything under control. Mets also in bone.
Sorry to hear about your family history - you’ve got so much in your family.
I was told that there’s also a small chance of pancreatic cancer with BRCA2 (not sure about BRCA1 as we weren’t discussing it) so it makes you wonder whether he had the BRCA2 gene as well.
I first went for genetic testing around 8 years ago and was told it wasn’t refined enough and even if the result came back as a negative it might be a positive because they couldn’t test accurately for it.
I hope the Femara keeps working for you. Xeloda (for my liver) plus Zometa are keeping me stable and I keep my fingers crossed that it will continue to do so.
Am waiting now to see what will happen with my brother and my cousin when they have their tests.
hi Pinkdove
Genetics seem to think he may have done. When they checked our family history, most of our relatives on my Dads side had died of cancer and certain cancers indicated a link to BRCA1 or 2. But only my Dad, my sister and myself had cancer young. I know they are also carrying out research into BRCA1/2 and if there is a reason why family members develope cancer at different ages ie: my sister was 29, I was 43.
Sorry to hear you have tested positive for the BRCA 2 gene Pinkdove, I’ve followed your posts as you’ve been waiting for your results. Hello Lynni from a fellow BRCA 2 mutant. I have done quite a bit of research into my particular mutation and identified the risks associated with it. I’ve found this to be very useful as my particular mutation carries a high bc risk for males - my brother has tested positive so its good that he can now be ‘breast aware’. The other strong risk is prostrate cancer and he is having screening for that. I was diagnosed with bc at 41 the same age as my grandmother. My mum had ovarian cancer at 48 the same age as her aunt, there is also several cases of pancreatic cancer in family members who were in their 70’s. I think the age factor is interesting, my particular mutation is early onset of bc which fits in with family members who have been diagnosed so far, however my 2 sisters who are late 40’s and have the mutation haven’t had bc so I did wonder and hope that perhaps they wouldn’t get it but now that I’ve read about the age variances in Lynni’s family I’m not so sure. Do you have any links for the research Lynni?
We were told we were strong risk BC, ovarian, slightly higher risk pancreatic and some skin cancers. My uncle (Dads brother) was told strong risk prostate as well. I don’t have any links for the research Helen, but I’m attending genetics clinic late October and I’ll ask. I find this interesting as well, you never know if there is a “trigger” found in us “mutants” what could develop from that.
Interesting about the age factor. My mum was 43 when she was diagnosed, my aunt slightly older at 52 and me at 40. I also had an aunt die of b.c. in the 60’s but don’t know much about this and it’s too late to ask any of my relatives who might have known as none of them are alive to ask.
I’m in a bit of a dilemma though whether to contact my great uncle (who actually was younger than my mum!) so he’s in his early 70’s now but I’m not sure whether to let him know about this news as they can’t be sure whether it’s been carried down from my nan or my granddad as I knew that they were cousins but found out from another uncle of mine today that they were first cousins! Thankfully I haven’t got two heads - I’m just a mutant!!!
I’ve just got my letter through today telling me where the mutation has been detected and I read somewhere that you can find out more about this so I’m going to google it later.
I feel I’ve come up to speed quite quickly in the space of a week with regards this! I just need to know and whether it’s had an effect on my secondaries, etc. etc.