Hi all. I have a strong family history of breast cancer on my mother’s side (my mother and 2 of her sisters have had it). However, the consultant at the genetics department in my local hospital has told me that I don’t need a test for the BRCA1/BRCA2 gene unless these relatives had the cancer before the age of 40. Has anyone else been told this? Surely the fact that 3 of my close relatives on the same side have had breast cancer is enough to warrant a test?! Thanks in advance for any advice you can give.
Hi there and welcome to the BCC forums bcquestion
I am posting a link to the BCC publication ‘breast cancer in families’ which may answer some of your query in addition to the information you will receive from your fellow users:
www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32
If you would like to talk your concerns over please call our helpline on 0808 800 6000, the lines are open weekdays 9-5 and Sat 9-2
Take care
Lucy
Hi
There are lots of characteristics which make cancers appear genetic or not. Age at onset it one. None of my relatives had cancer before 40, but I was 38 at dx. They tested me because I scored over 20 points on the Evans scale. This is where each cancer gets a score depending on characteristics and then they add them up. With me the tipping point was a paternal grandma who had ovarian cancer at 50- she scored 13 points on her own. My grandmother who died of bc only score 3 points I think, as she was post menopausal. It might be worth finding out what scale your hosp uses as it might help you make sense of their decision. It can be v confusing.
Debx
You have to have quite a significant family history to get tested… Typically 4 family members with BC under age 60 or ovarian at any age in 3 generations of your family, one individual who had both breast and ovarian cancer, somebody with triple negative breast cancer diagnosed under age 40 or as deb says if your evans score is 20 or more…
If you had three relatives with BC you would be considered moderate risk for screening but not high risk… For somebody with breast cancer over 60 yrs old they get 2 points and over 50 it’s 4 points, over 40 it’s 6 points… So the most you could score in your family is 18 which doesn’t full fill the criteria.
You should however fit the criteria for early screening from age 40.
Lulu x
Thanks everyone for your replies, I appreciate the advice and info. What I was advise by the genetics people corresponds with what you’re saying Lulu (i.e. that I’m moderate risk and that I need breast screenings from age 40), so I feel reassured now, thanks.
I was in my early 2s when the GP mentioned had I ever had any kind of genetic testing for breast cancer. That was far from my mind at that age. At 36, it struck me that I was older than my grandmother when she died from it, so I went to my GP. I was sent to the genetics team, and they didn’t want to test me, but asked if my mother would be willing to partake in a research study and she’d be tested as part of that.
I was tested after her result came back positive. It sounds like without this research I would never have known!!
Lulu34, you mention the scores for testing. What would my score have been?
Maternal grandmother - bilateral breast cancer aged 35
Maternal grandmother’s sister - Ovarian cancer in 70s
Mother - breast cancer aged 50
Thanks in advance
Always interested in these threads about testing for variations on the BRCA gene. Think carefully before embarking on this road - results are not always conclusive, it’s not as simple as a “yes/no” answer.
hi Dinkydoo
Your family would score 30 so would have had plenty to be tested through the labs as well as the research… But the research requires a family have 3 affected individuals and because it’s a research trial they pay for the testing saving the heath board who will do a confirmation test which is a about 10% of the cost.
In order for a family to be tested it is standard practice to take a sample from an affected person and they have a full analysis which can take many months… If a gene change is found then other family members including those who haven’t had cancer can be tested to see if they carry the same change… There are hundreds of different changes and it’s a bit like looking for a a spelling mistake within a large book… They have to look through the whole thing in the first place to see if it’s correct. If they find a spelling mistake then in subsequent copies they can go directly to the page and see if it’s correct or not.
Testing somebody who hasn’t had cancer is most like not to show a mutation but they wouldn’t know if this is because there was no gene change or because they just didn’t inherit it… S back the book analogy if no spelling mistake was found does it just mean they spelling is correct or because they weren’t looking in the right book in the first place.
Puffy White cloud have you heard of the affect trial? It’s looking at people with unknown variants… I can’t remember all about it but it popped into my head and just thought it may be of interest to you… Illl see if I can find some info for you.
Lulu x
PWCs found this it’s only if it’s brca1 you have and not brca2…
cancerhelp.cancerresearchuk.org/trials/A-study-looking-at-the-BRCA1-gene-and-the-risk-of-developing-breast-cancer-AFFECT?openFullCancerType=1#list
Lulu
Thanks again Lulu.
It took a full year from getting things rolling to my Mum’s positive result. They did say it would be about that, mind you.
Thanks for the trial info Lulu.
Agree with what people have said about how long the process takes, it’s nearly 3 years for me now with few conclusions (albeit the process was delayed by me at one point because of my own diagnosis).
Hi Ladies
It does seem to take some time. Our family have been 20 yrs in genetics!
Finally 6 months ago we had a breakthrough. It was confirmed that the ‘spelling mistake’ in the Brca 2 gene was causing cancer in our family. My mother and her two sisters have/had this gene and I’ve just found out I also have it.
Thank goodness I’m able to do something about it my poor mother,aunts and grandmother were not so fortunate.
M.