Does anyone know if genetic testing for BRCA1 is always carried out in the biopsy when tnbc is diagnosed please?

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Hello Everyone

I am new here but I received treatment for triple negative breast cancer throughout 2016. So far I am well, so I hope I can give hope to other people on the forum.

During my appointments I was always able to tell hospital staff that there was no history of breast cancer in my family but both of my sisters subsequently got breast cancer. Neither of them had tnbc but one of my nieces has asked me if I had genetic testing for BRCA1. I cannot remember being told about it if I was.

Has anyone got any up to date information please?

Thank you and good luck xx

  • When I saw the surgeon they requested the blood test, I don't think it would have been done routinely. I was told only 5 percent are hereditary, but you can develop a faulty gene through a mutation. I didn't carry the gene and had no family history. Perhaps you can ask if it was done? I had to wait 2 or 3 months for the result. 

  • My understanding is it’s not tested. My daughter attended an appointment with me and specifically asked the surgeon could it be a concern for her. She was told no because of my age when diagnosed ie 66. I too have a sister who has since been diagnosed with breast cancer ( not TNBC) and have since found out my mum’s 3 siblings who died all died of cancer ( throat x2 and prostrate). There’s been no mention of testing for BRCA1 which does worry me now.

  • Any genetic testing is done on a blood sample

  • Testing is not automatic (in the uk). When I underwent testing the blood sample was taken then a few weeks later I had an appointment with a genetic counsellor to discuss my case and family history. Based on that information she decided that I had enough of a risk to undergo testing for which I had to give consent. As this was happening at the same time as all my other tests it was done as an urgent case and I got the results in 4 weeks over Christmas. This is a quick turnaround time for a genetic screen. Fortunately I was negative for all the mutations they test for. That doesn’t mean there isn’t an underlying genetic cause but it’s not seen in the current known gene panel

  • I would strongly recommend that you try to get tested.  However it is not straight forward and rather a post code lottery.  My sister died of ovarian cancer and my other sister got breast cancer.  They didn't want to test her but she really pushed hard.  She was told being in early 60's meant she couldn't be a BRACA carrier.  She was was and so I could be tested and found in my late 60's I was a carrier. We now know 2 of my 3 son's are carriers. There are private testing sites as well but you need to shop around.

    We now realise my paternal grandmother died of ovarian cancer and it came through my father.

    It all remains not an exact science.

    I hope that helps.

    ricki
  • I don’t think it’s automatic - I think it depends on the patient’s age and family history. I wasn’t tested.

  • Thank you very much to all of the people who have replied to my question about BRCA gene testing for TNBC.

    I shall have to try and find out what happened in my own situation.

    Unfortunately, after my diagnosis, we found out that my sisters and I are half sisters and I don't have any way of finding out my real father's family history. Maybe a private test would be the answer but I imaging it would be very expensive?

    Best wishes x

  • I understand you can have a private test, costs about £300 through a company called Color if not available now on NHS.

  • That's really helpful. Thank you so much.

  • There are other mutations you should probably ask them to check for, I have PALB2 which is a risk for me for breast and ovarian but I have now had dmx and ovaries and fallopian tubes removed.  The 4 that I think the NHS test for are BRACA 1 and 2 and one called CHEK2 and PALB2.