Family History in Brief

1 minute read time.

I have a significant family history, mum was diagnosed with Breast Cancer aged 36 got ovarian cancer 2 years later and eventually died aged 44 from secondary ovarian cancer. The youngest of my aunties on her side to die did so at 28.  The oldest was I think in her late forties. My closest cousin on that side died at 40 (her mum was the one that died at 28) and so it goes on through the rest of the family...

For years I was convinced I would die aged 44 and it took a lot of work to get rid of that idea and accept that I am a separate person, my body behaves differently etc. I don't smoke, drink or do drugs. I eat reasonably well with fruit and veg but could use some more exercise!

I was referred to a genetic counsellor when I was in my twenties who went through my options. Unfortunately there wasn't anyone to test me against for the BRCA mutations because (a) most of my family who got it died and (b) those members of my family who have survived breast cancer live abroad in the caribbean and it is beyond our financial means to organise DNA testing. The outcome was that they would just keep monitoring me. I've been having annual smear tests since the age of about 24 and they started me on mammograms aged 34.  My latest genetic counsellor also tried to get me onto the MRI trial but because I was considered too young they said I didn't qualify.  As a result she suggested I try for MRIs again aged 40.  She also tried to get me on the UKFOSS trial and was told I should try again at 35.  Of course, now that I am 35; I have Breast Cancer... (part of me wonders if I had been on the MRI trial if they would have picked it up because they do say they can see things 3 years before you feel them.  I also gather that rules changed on MRI screening in the past 18 months so had I know that, I may have been able to pick up the cancer earlier, anyway...)

NOTE: As a result of having breast cancer I was able to be tested and am the proud to be a BRCA1 mutant - at least it means I can help in some more clinical trials :D

Anonymous
  • FormerMember
    FormerMember

    The smear test doesn't pick up ovarian cancer and I am wondering, given your family history, why you were not offered regular blood tests to try and detect this.

  • FormerMember
    FormerMember

    Hi Solent Lady,

    Thanks very much for picking up on this - you are quite correct, it doesn't.  It didn't occur to me that someone reading this post might think it does which would be misinformation.  Bear in mind this was many years ago (1994/5) before the CA-125 biomarker test you refer to was available on the NHS.  

    I was turned down for the UKFOSS trial in 2007 on the basis of my age (too young and at that time had not yet been diagnosed as a BRCA 1 mutant) which would have included the blood test and internal screening had I been successful in participating in the trial.

    My new genetics counsellor (as of this year and now with BRCA mutation confirmed) is putting me forward for ovarian screening anyway as I am now too late for the trial (missed out by a couple of weeks!).  We will be confirming all this at my appointment in September but I haven't gotten to that in my blog story yet so consider this comment response a sneak peak ;)

  • FormerMember
    FormerMember

    hi miadanu i  too have a strong history of breast and ovarian cancer in my family and as a result i tested positive to the brac 2 mutant  i since have had a bi laterial masectomy with diep reconstruction and have had my ovaries removed .my sister also as the gene and she as had her ovaries removed but she as choosen to continue with mri screening and mamograms alternating every 6 months. i am 43 and my sister is 40 i have  a daughter who is 21 and i am worried for her  i have spoken to her about the gene  and she doesnt want to get tested just yet so we are now going to see if she can get screening .i am really sorry that you have breast cancer andi send you best wishes for  a full recovery

  • FormerMember
    FormerMember

    Hi all

    Really interested in your comments and would be very interested to hear if you think there could be improvements in risk communication in genetic services/ or to services for people with an increased risk of breast/ovarian cancer in general. I was involved in some work speaking to some women either with the BRCA gene or from advocacy groups representing others who had. We did some videos to try and capture some of their views. If you would like to see them I could send you the link.

    Hope all goes well with treatment Miadanu

    All the best

    Carol

  • FormerMember
    FormerMember

    Scooterlady, thanks very much for sharing your experience.  It's interesting to me that your sister chose to go with screening.  I just can't bring myself to do that as I never want to go through chemotherapy again (my body hasn't reacted well to it).  I'm going to have the same as you (bi-lateral mastectomy with immediate DIEP flap recon) in November.  I can understand why your daughter wouldn't want to be tested yet; once you are then it can open up a can of worms of things she may not want to/be ready to deal with at that age... difficult one.

    Carol - I'd be interested in a link to those videos so feel free to friend and PM me if the link is blocked on this site.  Perhaps more could be done on the comms side as I had to seek this out about 12-3 years ago rather than being approached about being high-risk - but then, with my affected family being abroad they wouldn't have known I was high risk to approach me anyway!  I'm sure things have moved on, from what i could gather the issue is now about those who are moderate risk rather than high?