SpillsySpillsy Hobart Member Posts: 77
Hi all, I had BC in my family, dads side, grandma at 77 and Aunt at 51, so was having mammograms since turning 40, which this managed to grow in between. GP, Surgeon, and oncologist, seem very quick to dismiss a family link, saying they were old,  when I put my sister 43 into the risk assessment tools, and now add me as her sister with BC in at 45, she becomes high risk. Have others had genetics tests. I thought I was doing the right thing with screening mammography, from 40,  and now realise I should have advocated for more frequent screening for myself, although my GP even dismissed any cause for concern due to ages at diagnosis. My Aunty developed pancreatic cancer 15 years after her breast cancer and died about 6 months later, she said before she died that she had been told it was highly likely a genetic disposition.  Too late for me, but what have other done about their genetic risks 


  • AineGAineG Member Posts: 53
    Hi Spillsy, I was diagnosed at 44 and with relatives who had also had BC I too was concerned for my sister and my nieces etc.  With a fair few relatives with various cancers I went through a questionnaire with the genetics dept at Randwick, the result of which was that given how many relatives I actually have (Irish family) and their ages when diagnosed I had a less than 2% chance of mine being genetic.  
    You can talk to your oncologist about whether or not it's worth doing the questionnaire in your case.

  • SpillsySpillsy Hobart Member Posts: 77
    Thanks, am going to follow up, but yes probably low BRAc 1/2 chance.
    I have a much much smaller family, and my parents died of other causes. Plus my Aunts daughter died of a congenital heart thing when she was late 30s, so we haven’t got a huge pool of females to review. 
    I thought I might get it but not at bloody 45!!!!!! Oh well just got to get on with this year long treatment marathon!!! Week one over with....
  • AineGAineG Member Posts: 53
    Good luck with the treatments.  Sucks at this age... sucks at any age! but there is life after cancer....  I'm really enjoying life now, I make more effort everyday, at home, with the kids, making sure I don't take it for granted.
    You'll get there too...  :) 

  • JoeyLizJoeyLiz Member Posts: 278
    I have just had the blood test done, get the results in 8-10wks.
    my paternal grandmother had breast cancer at 55, that’s the only breast or prostate cancer in the family. But with me being 31 and hormone negative they think it’s a possibility it’s genetics.
    using the Manchester score I was 3 points below the 10% threshold where they offer the test (the difference being I was 31 and not 30 at diagnosis all be it by 3 months!) but apparently the new thing is to test all women diagnosed under 35.
    plus I also consented for them to do further genetic testing other than the brca for research 
  • primekprimek Broken HillMember Posts: 4,418
    Ask for a referral for a consult to a genetic counsellor..
    They will map your family tree iand determine if suitable for free testing. If you are positive any children you have carry a 50% chance of carrying the gene. So it is important and it's very important in regards to pancreatic, ovarian and a second primary breast cancer. If your breast surgeon won't refer your GP can. It doesn't change today's treatment but may change future options. I didn't carry tbe faukty gene of my family and it has helped me deal with tbe huilt of not being more assertive too. My bc I found 5 weeks after a clear mammogram. My dense breast tissue was likely consealing it. Kath x
  • MezzieMezzie Member Posts: 8
    I don,t really get the whole thing about a person not having a greater risk of having a gene mutation for a familiar cancer and possibly being denied testing if all the people that have died of related cancers in the family were over a certain age? Doesn't make it any less worrying for yourself that you may or may not be at a  lesser risk because your family member was older when they died of that cancer.  Any risk small or large is a concern to me when there is multiple cancers on one side of the family.  I have been offered testing but I've yet to talk in depth with the counsellor  as to what faulty genes they are considering testing for, being that pancreatic and stomach cancer are dominant on my mothers side.  To be honest the thought of possibly getting pancreatic cancer worries me more than a return of breast cancer.   Guess in life there is always something to worry about , trick is not to let it dominate your thoughts and to do all you can to stay healthy.
  • SpillsySpillsy Hobart Member Posts: 77
    Thanks so much for much you all are so knowledgeable, kind and supportive in your advice, I will, follow up but they all seem so dismissive. I will follow up for my sister and my sons sake.
     My GP said that fathers side didn’t really count, gosh it’s a worry, as it’s just a relevant in the risk questionaire’s. 
    My Aunty died of pancreatic cancer years after her breast cancer, ( which is now worrying me a bit, too and she told me just before she died that she was seeing a genetics Dr, but nothing more, but I should get mammograms which I did.
    i notice your comment about dense breasts, I have those too apparently, as the wise surgeon said rather like it was obviuos.
    Why don’t they tell you about this after mammograms, I had no idea about our higher risks. I really thought I was doing the right thing, but now know that I had no idea and was a sitting duck!!! Life stinks....!! 

  • Jen79xJen79x Member Posts: 115
    I would definitely recommend genetic testing - even for you to know if you have past it into your children.
    i just had two relatives my mum and her mum and I have brac1.
    found out too late though as diagnosed at 38.
    to young but I assume there is never a ideal age to go through this. 
    Ny daughter has 50% chance but we arnt going to test her till 18.
    my brother and sister are both waiting for results 
  • primekprimek Broken HillMember Posts: 4,418
    Bollocks that Fathers side didn't count. If he had the gene he could of past it to you. 50% chance.  That's why we have genetic counsellors. If they don't think it's not a risk at least they explain why. My father lost 3 sisters and a mother and 2 nieces to ovarian cancer and/or bc. They were convinced I had that gene because of the age they got it...around menopause. My sister also had bc but we had diff Dad's. They were looking at my Father's side only who were in Scotland. 

    My sister had been tested as her daughter developed bc also but they were neg to all known thus far. The genetics people believe we have a gene just not one known of as yet. But at this stage I am just considered an unlucky 1 in 8. Each time a new one discovered they retest my niece, the last retest was after I queried the newest gene for risk and they recalled her for testing again. But no. Still a mystery.
  • AfraserAfraser MelbourneMember Posts: 1,630
    The incidence of cancer increases as you get older (no comfort to those of us who are over 70 at all!). Your body and its cells are ageing and are more susceptible to malfunction, the effects of some carcinogens (eg alcohol, nicotine) may have accumulated and you have been around long enough to have a higher chance of sheer bad luck striking. Keeping/eating healthy as far as possible, exercise, regular checks, all may help. 
  • onemargieonemargie queenslandMember Posts: 1,188
    Hi there I was diagnosed aged 43 with triple negative breast cancer no family history and qualified for the gene test as I was under 50 and had no family history of breast cancer. Mine came back negative for the gene so it’s not recommended I test our kids either for the gene either you can get the test done privately but it costs around $1000. Margie xx
  • MollygirlMollygirl Brisbane Member Posts: 213
    Hi @Spillsy, I had genetic testing done really to help me decide if I was going to have mastectomies or not. I had them done anyway even tho no BRCA.

    I was triple negative like @onemargie, and because TNBC has higher chance of BRCA mutation it's usually recommended. I had a 'color test' I saw a geneticist and then sent my saliva to the USA and it tested for about 30 gene mutations. This was a good option for me as I had melanoma a couple of years ago. It's expensive - $550 for the doctor and $450 for the test. But the Foundation at my place of treatment helped me out with some of the payment. 

    I think testing is smart to help you choose treatment path. ie mastectomies or not. Every little bit of info helps. 

    Once you you have the test tho, if positive may have implications for your children's ability to apply for life insurance down the track if you are positive.  My poor teenage son was quite anxious about the results bless him. Xx
  • lgray3911lgray3911 Member Posts: 167
    I contacted the genetic testing people and filled out the questionnaire and because of cancer history was given the test for free. It’s just a blood test and takes about 3 months to get results. If you don’t qualify you can still get it done it costs $500 
  • DearBDearB Member Posts: 168
    @mollygirl. That was the implication of the testing I couldn’t think yesterday’s what the dr had said but yes maybe they can be discriminated against for life insurance later.  That sucks doesn’t it.   I wonder if they can discriminate though.    
  • MollygirlMollygirl Brisbane Member Posts: 213
    Yep @DearB, it's something that has to be disclosed if they apply for life insurance and are asked for family history. As they then pose a higher risk I guess if you've tested positive as a BRCA 1 or 2 - don't quote me though it's months since it was all explained to me as this ol chemo brains has some black holes still! 
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