Hi,
My family has a large history of breast cancer on my mothers side including my grandmother,great aunt and great grandmother,there has been genetic testing done on my mums cousin which came back negative however the genetic counsellor decided to test my mum (who was diagnosed with bc in feb)also. Today we recieved the results back which were also negative but again the counsellor wishes to keep testing as she believes someone in the family has the gene,so now my aunt is being tested who was diagnosed with LCIS in July.
My question is has anyone else been in the same situation when they just can’t find a gene but yet have a particularly strong family history?
And also I wish to have a preventative mastectomy is this still possible even though a gene has yet to be found?
I haven’t got any advice for you, I’m sorry but have the same type of history.
Grandmother, possible, it wasn’t spoken about at the time, my mother, her sister had Breast cancer. I was diagnosed in 2004 and in a matter of a month from my diagnosis, two cousins on the maternal side of my family were diagnosed with breast cancer.
I was to be tested but my blood form was lost and it has taken a lot effort and time to be tested and my results came back as negative, to any known genes at this time.
I feel strongly that it is genetic, and for the sake of other women in my family that my cousins should be tested but its such a struggle to get the test I don’t think they will.
It is frustrating, I’m sorry I can’t help with your question but maybe someone else can.
Hi, I would ask what percentage of the BRCA 1 & 2 gene has been tested. Some centres don’t test 100% so check this out. It may be possible that they think you have a yet unidentified gene so want to keep your dna to use for further tests in light of a new BRCA gene. As for preventitive surgery I think a lot depends on your NHS trust and how high genetics assess your risk to be.
Sorry to butt in to your thread, I just wanted to mention a BCC booklet which you might find useful to read. It is called 'Breast Cancer in families and is for people who’d like to know more about breast cancer in families. It explains what is meant by a significant family history of breast cancer.
If anyone would like a copy or to read it on all just follow this link:-
My gran mum and aunt were diagnosed before I was which when there are only 5 women on my mums side of the family counts as a fair percentage. Prior to my diagnosis the NHS said no testing as only 3 members of the family couted as low risk!
I was tested for BRCA and it was negative. The geneticist said it was likely to be a cluster of low to medium risk genes. As yet there is no easy way to detect what genes are involved and no testing. There is a research project going on in Surrey looking at inherited breast cancer who are trying to develop better ways to identify genes, it might not be any use to you (or me)but may be to others in the future.
