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BRCA Testing & wait times

keb303
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Hello, my Mum had the BRCA 1 mutation. She passed away in June 2022. I have all the relevant paperwork for her results etc. 

Back in 2016 I went through genetic counselling and was all set to find out if I have the gene. At the time I was 31 and about to be married. At the eleventh hour I changed my mind and stopped the process.

In March 2023 I decided now is the time to know. I was told I had to start the process again and my GP has referred me. 6 months later I have heard nothing. My GP has sent a reminder. I am now 39 and my second child is due in a few weeks and our family will then be complete.

My question is, how long is reasonable to wait? Or should I explore private testing? I’m keen to just know now and in a position to make decisions depending on the outcome. 


Any advise appreciated :) thank you 

  • Hi keb303,

    I’m Kirsty one of the cancer information nurse specialists that work on the Macmillan support line. Thanks for getting in touch.

    The decision to go forward for genetic counselling can be an emotional one. It sounds like now is the right time for you and I do understand how difficult the wait can be.

    Having genetic testing to look at potential changes in the BRCA gene is important given mum’s medical history. Your results will give you more information about your cancer risk and allow you to consider options going forward. The hope is of course, that you results show you have not inherited a faulty gene and therefore cannot pass it on to your children.

    Unfortunately, there has been a shift in healthcare. As you are finding, this means longer waits for routine screening, compared to back in 2016. I am pleased to hear that you have discussed this with your GP, and they have written again to the genetic team.

    Exploring private testing is of course another option. Perhaps it is worth waiting to see if the new referral results in an appointment first.

    Take care as you look forward to the arrival of the little one. Life is about to become very busy again in a wonderful way.

     

    Best wishes 

    Kirsty, Cancer Information Nurse Specialist 

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref/CF

     

     

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