I was diagnosed with tripple negative at 29. There is no family history, but my Grandad on my mothers side is Jewish. There is apparently more chance of a mutation amongst people with Jewish herritage and because of my age they are willing to test me for the Jewish mutations. However they can’t do the tests for the other mutations as there is currently no funding for that due to no family history ect. I really don’t know what to do now. If I have the test it may come back clear for the Jewish mutations but it doesn’t mean I don’t have one of the others. If it does come back with one what do I do with that info. Mastectomy, Overies removed?? I don’t know if I’m strong enough to deal with the consequences of the results but I’m also not comfortable to stick my head in the sand. It feels like it’s not worth having the info if I then choose to do nothing with it. Also as I can’t have the full test it feels like it’s not a properly informed decision.
I am so confused. I spent all my time to worrying about what this would mean for my sister and mum and didn’t really think about what it meant for me.
Any advice would be great. I finished my treatment in 2010 and all this has just brought it all back with a massive thump.
Kelly
Hi Kelly
I am sorry that your post has not received any replies as yet, this is probably due to the technical issues we are still working through so please accept our apologies, hopefully your post will appear in the latest posts section where it will be seen by other users
Best wishes
Lucy
Hi
Things may have moved on as you posted some time ago, so apologies if I’m talking out of turn.
I thought that all ladies diagnosed with Triple Negative breast cancer at a young age were entitled to full genetic testing (on the NHS in UK). I could be wrong but the BCC Helpline might be able to shed some light on this.
I don’t know where you are but if you’re in UK and being treating under the NHS I really do think that you should push and push and kick up a stink if you don’t get the testing you want. If you can get your GP, BCN and oncologist on-side that may help. I know it’s not always nice to make a fuss but, as I know from personal experience, that’s sometimes what it takes.
Kells PWC is correct you should be eligible to have genetic testing through an NHS lab if you are diagnosed with triple neg bc under age 40… if the health board has no money you could look into getting tested through the Genetics of Familial Breast Cancer Study sometimes referred to as the BRCA3 trial. its a research trial and is carried out at the institute of cancer research in cambridge… it is trying to identify new genes (hence the name brca3) and in order to do this they test participants to rule anybody with mutations out the research as that would be the most likely cause of their cancer not a new one so its really done by default.
they will carry out testing through the research on anybody having a gene test done on the nhs so i think they would be able to do offer this for you although its not specifically one of the criteria which is 3 BCs or OCs or 1 individual with bilateral BC.
also you can ask to be referred to another healthboard… the marsden are experts in the field of genetics too.
good luck