I wondered if anyone had any experiences or information around getting genetic testing done with a metastatic breast cancer diagnosis?
I have been reading research articles that have been published in the last two years, primarily USA based. There is a lot of strong recommendations coming out of these articles for women with metastatic breast cancer to get genetic testing done because studies are showing that as much as 11% of metastatic breast cancer cases have been found to have a recently discovered gene mutation that could potentially be targeted with different treatments.
I know that genetic testing is not routinely available on the NHS and I’m considering paying privately for a test. However, I can’t seem to find much information around any genetic testing facilities that offer really comprehensive, up-to-date genetic tests (ie. ones that don’t just look for BRCA1 or BRCA2 mutations).
I plan to speak with my Oncologist about this but in the meantime I wondered if anyone else had any experience of going down this route?
I was offered genetic testing on the nhs, through Guys in London. They are testing for four gene mutations (including BRCA 1 /2). I’m not sure if that’s what you’re talking about, or if it would be something more involved? I think there is a company called oncologica that will do a full work up and match you to any potential trials, but it’s not cheap. I’ve read about it on a Facebook group for tnbc.
I hope you don’t mind some input from me I was reading up about the PBCP(Personalised Breast Cancer Programme) at Addenbrooke’s hospital in Cambridge. I contacted them and they said I could go down to Cambridge and provide a sample of a lymph node tumour near my clavicle. However, they then said they weren’t sure it was big enough to take a sample from and are still waiting on a referral from my Consultant. It’s worth a read because it may just throw up something in your gene sequencing and it’s free! It’s run in conjunction with Cancer Research UK and the Nurse who helps to coordinate it is called Justine Kane. Take care ladies xxx