BRCA triple negative

Hi everyone,
Does anyone know what the stats or the chances are that having triple neg in your 50’s is genetic BRCA - i.e. should I push for the test so my daughters can be aware?
I know the flip side is that a high percentage of BRCA genetic cancers tend to be triple negative and wondered if that worked in reverse?
Karen xx

Hi Karenap
Sorry, I can’t really help with stats, but I am triple negative in my fifties and have just been diagnosed with the BRCA 1 mutation. See my profile.
There is another thread on gene testing.(Called for a genetics trial) I think you will find some answers on there to your real dilemma.
What every happens, all the best.
Maria

hi karen

if you are the only person in your family to develop breast cancer regardless of the type then your family wouldnt fit the profile for testing.

a one off sporadic triple negative BC is less likely to be genetic than somebody developing it in their 20s or 30s or with a strong family history of breats or ovarian cancer.

the type of cancer you have isnt a risk factor in terms of assessing if fit the criteria for testing.

anybody can get triple negative breast cancer just that a higher proportion of these cancers occur in people with mutations and also a higher proportion occur in younger women with or without a genetic mutation, but i know of women in the 70s diagnosed with TNBC who do not have a mutation.

if your worried about genetic cancer you can ask for a referral to the genetics department to discuss your risk and understand the issues relating to that.

Lulu x

I’m 30 and triple negative. We have no family history of cancer, apart from my mums sister, she died of ovarian cancer age 39 10 years ago. The genetic counsellor came to my house yesterday, she has sent off my aunts blood sample that they still had for it to be tested, if thats BRCA 1 they will then test my mum, and I will know if I have it too.
I’m really confused about it all, i think I’m sticking my head in the sand about it so I dont worry myself silly until the results come back.
xxx

I am triple negative and BRCA1 and was 43 at time of diagnosis.

There are no cases of breast cancer (apart from me) in my family.
I was tested for BRCA genes, as there are ovarian (nan) and pancreatic (father) in my family.

It does seem to me that there is definately a link between triple negative and BRCA.

xxx

Crystal

thanks for all the info and input ladies - I will go and read that other thread!
My problem is a dysfunctional family - I have no knowledge of my fathers family and my mum is an only daughter with 4 brothers. The only other female that I know of in my family is my maternal grandmother who died of bowel cancer but in her 70’s so the limited knowledge I have of my family doesnt put me in the profile for testing! I just wonder if I should push for testing as I have two daughters in their 20’s !
Karen

50 is actually quite old for a cancer to be genetic in origin. The onset for the majority of genetic cancers tends to be much younger.It doesn’t sound as if you’d make much progress with such limited information-but the main question is…has your Mum had cancer, and if so, how old was she?

actually the BRCA gene is just has likely to have come from your fathers side ( mine did), so family history from both sides is equally important.
So keep pushing for info if you can
xxx

Very true Crystal-but she has said she has no knowledge of her father’s family-so that road is a dead end. Perhaps a good starting point would be for Karen to re-establish contact with someone on her father’s side to see if she can get any info. With such limited info as she has, there simply isn’t enough to work on-as you know, the geneticists need as detailed a family tree as possible.

Hi, I have triple negative bc and I find this subject fascinating.
I was told that I wouldn’t be tested for the BRCA gene as I was 50 when my cancer was discovered.
Both my parents died of cancer, my dads was oesophogeal and my mums was pancreatic.
I find it hard to get my head round the fact that this can have no impact on mine or my family’s chances of developing cancer (of any kind)when I am the third person in the family to have it.
I also don’t know any details of cancer on my fathers side. I have 2 daughters and a grand daughter so I worry for them.
I also have 3 sisters.

thanks ladies, all information is helpful to mull over and consider.
My father died over 15 years ago and I know that he only had 2 older brothers and the only female in his family was his mother, and she was an only child so dont think I would get any more information there, even if I could track them down!
so limited family knowledge, plus very few females doesnt add up enough information for them I dont think.
apart from two daughters I have a younger sister and a younger half sister and 2 nieces, so obviously they would appreciate the information too!
One thing I have learnt on this journey is how many different kinds of bc there are and how complicated it all is!
Karen xx

when you go to the genetic department if your limited history sounds like your family could be high risk they can ask the medical genealogists to research your family tree in a it more detail.

the cancers that count are female breast cancer, male breast cancer, ovarian cancer and to a lesser extent prostate and pancreatic cancer.

the higher risk factors are one individual with breast and ovarian cancer, male breast cancer particularly if they were under 60, ovarian cancer again particularly under 60 and female breast cancer under 30.

if you have any two of the above in your family you would fit the criteria for genetic testing… they have to be 1st degree relatives or through unaffected males… eg if your dads, dads, brothers, sons, daughter also had bc at 39 then she would still be considered the same as if it was your sister who was diagnosed.

its quite complex and its only going to get more complex with families breaking down and losing contact but also because people are having prophylactic surgery, so we wouldnt know whether they didnt get cancer because they had surgery or because they were never going to get it anyway.

only 5% of all breast cancers are genetic and only about 10% of all people tested will be found to be gene carriers… so often you are no further forward as you and your family would continue to be at an increased risk.

if however a gene was found this would mean that other family members could be tested for this gene change in a predictive test… if they were positive it would mean they were a gene carrier and at a significantly increased risk of cancer, if however they tested negative that would mean they werent a gene carrier and would have the same risk as joe bloggs down the street.

as elaine says 50 is on the older side for getting genetic cancer as most genetic cancers would occur before age 50 however not all BCs would and you still get a fair number of people from high risk families getting BC in their 50s and 60s.

this is the institute of cancer research guidelines for testing, however individual clinics may have their own protocols, my clinic would normally only test families with a score of 20 or above…

icr.ac.uk/research/research_sections/cancer_genetics/cancer_genetics_teams/genetic_susceptibility/fbc_protocols/12904.pdf

Lulu xxx