So sorry that your sister has found herself in this position. I can't answer your question about the cost of genetic testing, but I'm not sure why your NHS hospital has told you that it takes 4 months for the test results to come back. I had my test through the NHS and it came back within 3 weeks. My geneticist did explain to me that they sent the tests away in batches due to financial constraints, meaning I may be the last in a batch and get my results quickly, or at the start of a new batch and wait a bit longer. But they also said that either way my results would be back within 6-8 weeks max. Has your sister actually spoken to an NHS geneticist? If not, perhaps she should contact her local genetics department to get clarification on test times. They are the experts who can tell you the exact time your results should be available, other health care professionals can only give you a sketchy time scale at best. She also shouldn't worry about having the test while undergoing chemo, that's when I had mine (it was neg by the way). Wishing your sister all the best with her treatment. Ann X X
My younger sister was diagnosed with triple negative Grade 3 invasive ductal cell carcinoma at Christmas. She has been referred for BRCA1 &2 gene testing but has been told it could take at least 4 months to get result through the NHS. We have strong history of breast cancer in our family, maternal grandmother, 2 maternal aunts and also a maternal aunt with ovarian cancer and in addition a maternal uncle with bowel cancer and maternal grandfather with prostate cancer. She has started her chemotherapy which will be followed by surgery. If she is BRCA negative they would probably opt for a lumpectomy but if BRCA positive then a mastectomy. However it seems unlikely that she will get the result before her surgery date. Can anyone tell me how much it would cost to have the test privately and how long does it takes to get the result privately?
I was tested for both the TP53 gene and the BRCA genes which are both back as negative. I know exactly what you mean about the anxiety caused about the TP53 gene. I was beside myself thinking we could have this. However, it is really, really rare and the criteria is really very strict. Once I had calmed down, I did lots of my own research and contacted a research who has done much research on this and she said straight off that I didnt meet the criteria. I would have thought that if you had the BRCA gene that it would have tested and that inaccuracy is unlikely. I do think a lot of these geneticists jump the gun a bit and scare the hell out of us. If you like, I can PM you all the details I have on Li Fraumeni.
I have recently enquired with breast surgeon about having this test done. He told me that there was a long waiting list on the NHS and that if i wanted the test doing quickly i could get it done privately by going on the internet and paying about £1500. (but it hadn't come from him). Has anybody gone done this route ?
I would be very interested in any replies, Best wishes claire x
Hi Emily..I'll send you a private message about this..it will be in your inbox when you click on your profile. x
I was tested for both BRCA genes about a year ago and recently found out that im negative for both BRCA 1&2. I have been told that i may have a genetic disored that is a gene called TP53 (li-Fraumaneli Syndrome), needless to say if anybody has heard of this gene, its probably that worst one possible and I am really concerned that I have it. HOWEVER my genetecist said that before I had the testing she was 95% sure that I had the BRAC2 gene (as of fam history and my cancer). I also know that the BRAC tests are only 90-95%. I want to be %100 that I do not have this gene before I put my family through the torture of waiting to find out if I have the TP53 gene.
Does anyone know how much this would cost? Has anyone done this themselves after having a negative result the first time around?