BRCA 2 gene testing

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Hi, I was diagnosed with Stage 2 IDC / DCIS in October. I have now had 2 ops (WLE / SNB in Oct and lateral mammoplasty in Dec). From some reading I found out about the link between Ashkenazi heritage and BRCA 2 gene mutations. I raised this with my surgeon a week before my second op. (3/4 grandparents Ashkenazi Jews). Not sure why they didn’t pick this up as was on my form. He advised testing but to go ahead with planned op. At my post surgery op last week he said they would aim to expedite my gene testing results so as not to delay treatment plan but I only had my brca appt today (4 weeks after I raised this) and it was a shambles -  counsellor not there, no bloods done or even scheduling of bloods and no further info - in effect no further along and still in limbo. Could not answer any of my questions - am most concerned about delays to current treatment plan. My BCN went awol about 5 weeks ago and I have had quite a difficult few weeks without support and trying to navigate challenges pre and post surgery. Can anyone advise about brca gene testing and how it is done and how long results take? Is it silly to push for my radiotherapy before results? I am seeing an oncologist next week for the first time but had been advised I will have radiotherapy and AI tablets for 5 years. Thank you. 

  • Hi, I was diagnosed with triple negative breast cancer in November and was advised to have genetic testing. Mine was a saliva test ordered through Berkley genetics. I am still waiting for the results as I think they take a few weeks. Hope this helps!

    Good luck on your journey!

    Keely x

  • Hi  , I think different places have different time scales. In my case, I wasn’t tested initially as the doctor at my biopsy results appointment said that my type of cancer (oestrogen positive) wouldn’t be related to my family history (my mum and her aunt died from breast cancer). I don’t know about her aunt, but my mums cancer was also oestrogen positive. Anyway several years into my post diagnosis follow ups I asked again about gene testing. The surgeon agreed to refer me - it took a few weeks for a questionnaire to arrive, then after I’d sent it back by email it took 3 months to get an initial appointment at the genetics clinic. I saw a counsellor, and had the blood test straight after. 12 weeks later I got the results - I was negative for BRCA but positive for ATM gene mutation. It gives a moderate rather than high risk of breast cancer and is apparently probably why I got it. 
    I think that partly why my results took so long is because they were testing for a number of gene mutations, not just BRCA. It may well be quicker if they’re only looking for BRCA. 
    I’d definitely discuss it all at your oncology appointment next week, maybe they could push to try to speed things up re the testing? Good luck with it all, love and hugs, HFxx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Thanks Keely. It’s a rollercoaster! Thanks for replying and good luck to you too Heart️

  • Thanks HF. Appreciate your reply. I don’t know yet even when I will have the test, feel worried I will need to wait 12 weeks for results. But yes, maybe quicker for different parts of tests. Fingers crossed! 
    i hope you are ok and thanks again for your reply and advice x 

  • Hi,

    I was diagnosed August 2023 and because my grandfather had BC my oncologist referred me for BRCA testing. I completed a lengthy questionnaire then about two months later had an online counselling meeting that lasted about thirty minutes. I decided to have the test and waited for a blood test pro forma to arrive in the post. Then I made a blood test appointment locally. I was advised my result would be about five months but it took three months and I received a phone call to advise I had tested negative.

    So, all in all about five months.

    Hope that assists x

  • Hi I was diagnosed in January last year with grade 3 IDC they genetically tested me as I was just 40 and my dad’s sister was 48 when she had ovarian cancer. My blood test was in march ( end of) I went through my chemo and radiotherapy as having the gene would not of affected that course of treatment. My results came back in June and I was positive for BCRA 2 which has meant I now have 12 months of a parp inhibitor. I don’t think having the gene mutation affects radiotherapy or chemo etc so I personally wouldn’t delay, but definitely mention it to your oncologist. I hope your doing ok, so much to process, :) 

  • Hello Shopping Lady, thank you for sharing this. Very happy to hear you tested negative. I have already done the questionnaire. Such a long wait for you. Really appreciate you taking the time to reply. It’s a long process. 

  • Hi Whynot, am sorry to hear that you had a positive test for the gene mutation. Thank you for telling me about your experience, sharing your advice and for your kindness. I have had a difficult few weeks to be honest. The last 12 weeks have felt relentless and I am just having a low moment trying to process it all. 
    i had a call back today and saw an absolutely lovely counsellor who talked me through everything. They are going to try to expedite my tests. If I should test positive the recommendation is bilateral mastectomy and ovaries out. Although of course it would be up to me to decide. 
    such a lot to take in and work through. 
    hope you are ok - what a journey this is…

  • Yes it is one hell of a journey- and although we are all different I know we all probably have some of the same feelings, fears and thoughts. I understand the difficult few weeks it’s a lot to decide and process when your brain feels so overwhelmed. I had a mastectomy on the left side due to the cancer and now am waiting for the right and my ovaries and fallopian tubes to be removed due to the BRCA. The genetics team in my experience have been really good- please do reach out if I can help ( being a little further ahead in the journey ) although I hope u don’t have to make those decisions if you do, this forum has helped me not feel so isolated x take care

  • Your words resonate with me. Am generally pretty resilient but it’s hard to hold your head at times with this. I am really grateful to you for your offer of support - it’s an immediate help just to know it’s there. Am so sorry about all the surgeries… BRCA is brutal. Take care you too X