Hi,
I was wondering if anyone could shed any light on the BRCA genetic test. I’m 27 and have been dx with ER pos, PR pos and HER neg breast cancer. I’ve asked my breast care nurse several times to have the BRCA test but she hasn’t organised it. I read somewhere that a very small number of ER and PR pos cancers are BRCA. There is no family history of breast cancer. I have already undergone a mastecomy and am awaiting chemo.
Thanks for any help!
Hi,
when I asked about this, there was a genetics nurse in our area who I was able to have a chat with first. I had asked my onc several times but he pushed it aside so brought it up when i had my visit to my surgeon. So I would say keep asking different people until someone listens. There is a lot to consider before having it. I have no relatives on my mum’s side with it but do on my father’s side. They said I did not have enough relatives with Bc and no relatives with ovarian cancer to show that a gene was likely. They said most are environmental and that only my daughter’s can trigger a test if they ever want it. They don’t want to know at the moment. So I was not allowed to go forward for the counselling you have before the actual tests. There are considerations as it may affect your ability to get private health insurance, life insurance and mortgages so have a big think if there is anything you need to do beforehand. I do remember several friends on here going for the test and both were positive and I think telling all the others in the family that they were at risk (especially little girls in the family) was a really tough thing to have to do.
They are just my thoughts and others will give you their views and then you will decide what is right for you. Big hugs for the next stage of your treatment. Keep a diary of your first chemo and then you will know exactly which days you can plan to go out and which you need to be a vegetable on the sofa. It helps you to feel more in control.So sorry you have this totally crap disease
Take care
Love
Lily x
if there is no family history of breast or ovarian cancer they wont do a brca test… there is quite a strict criteria you need to fit into to be at an increased risk of breast cancer and that risk would need to be in the ‘high’ category to be eligible for genetic testing… even in families with 3 cases of breast cancer they may still not be considered high enough risk for testing.
there is a research trial which they may be able to test you in but this will take many months and may even take years for the results.
not sure if your in england but if you are this is the criteria for genetic testing…
icr.ac.uk/research/research_sections/cancer_genetics/cancer_genetics_teams/genetic_susceptibility/fbc_protocols/12904.pdf
if you have asked for genetic testing then your onc should be able to refer you to the genetics department to discuss it even if you dont fit the criteria for testing it may still be beneficial for you to speak through your concerns with the genetic team.
hope your chemo goes ok.
Lulu x
Thank you lulu and Lily. I’m going to keep pushing for the test. It’s useful to know about how it may affect mortgages etc.
x
in terms of mortgages etc its probably going to make little effect on your mortgage or insurance… the main effect on your future finaces and security would be based on you medical history and family medical history so the fact you have had cancer with or without a gene would be the critical thing.
you have certain allowances and only if you are wanting to secure high figure sums would insurers and lenders have to know the results of genetic testing…
this is the guidelines for members of the association of british insurers.
abi.org.uk/Information/Consumers/Health_and_Protection/44578.pdf
Lxx
Hi Rosie
As well as the information you have received from your fellow forum users you may find it helpful to read the BCC booklet ‘Breast Cancer in Families’, it explains what is meant by a significant family history of breast cancer and gives a better understanding about breast cancer in families. If you would like a copy or to read this on line just follow this link:-
breastcancercare.org.uk/upload/pdf/BC_in_families_LP_-_March_08.pdf
Best wishes
Sam, BCC Facilitator
KEEP PUSHING!!! It’s not normal to get breast cancer in your 20s. I was diagnosed last year aged 29 and had to fight for my test, my oncologist’s registrar basically told me I was being hysterical, refused me the test and wrote a letter to my surgeon saying I was “having difficulty coming to terms with the end of my treatment”. My surgeon relented and I took the test in April. Last month I was rediagnosed, just 6 months after finishing my treatment. 4 days later I got the test results and I was BRCA1. Technically I shouldn’t have qualified as the only family history was my mum who had it in 2001 aged 56 so quite common. The other thing that should have alerted them was the fact I am triple neg which the majority of BRCA1 cancers are. I have now had a mastectomy on one side and am booked in for the other side in September. I thank God that I pushed, I’m not normally a demanding patient in any way but I am outraged that I had to be belittled by that awful woman to get a simple test that has had a MASSIVE impact on the decisions I now have to face. If I hadn’t know about my status, chances are I would have had a single mastectomy and it would have eventually come back in the other breast. Now at least I know what I am dealing with. My genetic counsellor told me the main reason they were testing me was my age, not because of my mum. BC in your 20s is rare, and it’s not normal. Keep hassling them, it’s your absolute right. Good luck xx