Not BRCA but RAD51D

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Hi all, I wasn't sure where to post this.  I had BC diagnosed back in April,  it was a rare adenoid cystic carcinoma - 32mm -  not spread, lymph node clear.  Had lump surgically removed followed by RT.  Because my tumour was triple negative I got offered a genetics test - which has just come back as positive for RAD51D - which is also quite rare!! I'm being referred to a genetics consultant to discuss further, but in the meantime I wondered if anybody on here has any experience of it.  I've googled a little - but I'm too scared to spend much time on google as the last time I did that regarding my cancer diagnosis I had an anxiety attack!!!  Nobody in immediate family line as ever had cancer.  Thanks in advance :-)

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I don't have RAD51D but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list.

    While you're waiting for replies, it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hi  , thought I’d pop in, I don’t have your gene result but I do have another one. It’s not BRCA so I sort of lurk in this group as I don’t really belong but joined it when waiting for my genetics results. My wonky gene is ATM and carries a moderate risk for breast cancer. I do have a family history of breast and prostate cancer. In my case the gene tends to be associated with hormone positive bc. 
    I mainly wanted to welcome you and also to caution against googling. When you speak to your genetics counsellor, they’ll be looking at your individual case, background, family history etc. In my case, once a load of other stuff was taken into account, it turned out that I was at the lower end of the risk scale for my gene. As with many things, there is often a sliding scale for the risks posed by genetic factors, certainly for mine. So although I was upset when I was first told (had of course really been hoping that it would all be negative), I felt somewhat reassured once I’d had it all properly explained and assessed. 
    Hope you get your appointment soon and get a better idea (from the experts) about what you’re dealing with. Love and hugs, HFxx 

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Thanks HappyFeet1 - I am being pragmatic about it and definitely staying away from 'Dr Google' which only ever seems to catastrophise theses things.  I guess my concern is getting cancer again - and maybe not being so lucky with the prognosis next time.  Hopefully the genetics consultant will be able to guide me though what it means to me - as you say, each case is individual.  Thanks :-) xx 

  • update: I had my consultation ... RAD51D is one that is also being tested for now in the genetics testing.  We went through my details (family history etc) and I am moderate risk of a breast cancer recurrence (22%) which will be monitored by my yearly screening so no action required as such and high risk (11% is high on their scale) for risk of ovarian cancer. I am now being referred to discuss with a gyno about possibly ovary removal given that there is no screening process for that.  still am perplexed by this as there is absolutely no family history of these cancers.I am still staying off dr google and my anxiety levels seem to be doing ok at the moment !! xx

  • just to add - I'm 50 years old now and my ovaries are on the brink of retirement !!!!