Hi Op, I have just been through this, testing for BRCA 1 and 2 gene mutations. After an eight week wait I had my results a few days ago. I was diagnosed with breast cancer in July ‘20 at 50, my sister too, very early last year at 51, I also had a maternal cousin who had (and recovered from) testicular cancer though that wasn’t necessarily relevant. My dad died of cancer and my (paternal side) cousin also died very young a few years ago of ovarian cancer, her age being a major factor. My breast surgeon was quite dismissive, in a trying to be reassuring way but came over to me as dismissive, and didn’t refer me initially saying it was likely just coincidence.
I went to my GP and she was completely supportive, the referral had to be via the consultant so she promptly wrote to him asking for a referral, which he did. My mum died young of a non cancer related illness which I think helped sway things because she was an uncertainty. Once the referral has been done you then do a more detailed family medical history with the genetics clinic and if you meet their own criteria they will go ahead. They felt there was sufficient cause to test both me and my dsis because of us both having BC around 50 and also the young age ovarian link with our cousin.
My understanding is that the only way to get an NHS referral is to have what appears more than a coincidence level (the incidence of which is much higher than you might think) of first and second degree relatives, to show need and get a referral either via a consultant or through your GP. I don’t think they will do it on the NHS unless you have in their view a significant history, not limited to but including relevant cancers, often typically breast, ovarian and prostate, coupled with younger than average ages of diagnosis.
If you can ascertain a bit more detailed family history of close relatives in the last few generations you might find enough justification to go to your GP?
I already had a mastectomy last year but did have counselling about the treatment options for a positive genetic result, but actually tested negative for BRCA gene mutation, this means no genetic very high risk of BC, prostate or ovarian cancers for my dc. Despite this they unfortunately still found a higher risk link to BC in my family, unrelated to BRCA, so my daughters will start screening 10 years earlier. I will get screened regularly anyway because of my own BC.
Just to add, for breast cancer patients having finished active treatment, they have changed the protocol of screening/checking for recurrence and I think this is really important to all women, especially also if there may appear a family link. If you are recalled only once a year, what they don’t want is women to put a high level of faith in annual screening, i.e., mammograms, and rely on that as their main method of checking. They now strongly emphasise, instruct really, that your main method of early detection on top of screening is once a month self checking. We all know we should do it, but I still don’t think a big % of women do it regularly and thoroughly. Everyone should self check properly once a month.