Can someone clarify this please? Lynch Syndrome

JoannieJoannie Member Posts: 667
edited March 2 in Day to day
I went for genetic counselling a couple of weeks ago, the main thing that came out of that appointment was they want to see whether we have Lynch Syndrome in the family.  My main reason was to see if I carry the BRCA 1 or BRCA 2 gene!  I was told I have 1% percent chance of being a carrier.  
Now, if I want to find out I will have to have the blood test and all that is involved in that and pay $450.00.

I came away rather discontented, with that appointment being a waste of my time.  I also did a little research since my appointment on Lynch Syndrome, and found that some Insurance can be hard for people to get (discrimination), if they have Lynch Syndrome.  My main concern is I don't want to add to family burdens.  The more I looked into the implications for the next generation (ie my daughter,and nieces and nephews, and grand nieces and nephews) being told they have Lynch Syndrome, the more I disliked what I read.  Any feedback would be appreciated.


  • lrb_03lrb_03 Member Posts: 726
    As I understand it,  Lynch Syndrome is a genetic mutatiom that increases the risk for a certain group of cancers - pancreatic, bowel, ovarian, breast & I can't remember the others. If you are tested, & test positive, it is then up to the individual family members to decide if they want testing done. I guess the disadvantage, as you said, may the difficulty in getting insurance. The advantage, to me would be in the ability to take some control, and start screening for those cancers that you can screen for, and being aware of early symptoms to look out for. There would also be the option to look into risk reducing surgery.
    Whatever decision you make, it needs to be the right one for you
    Take care
  • brightspacebrightspace Member Posts: 245
    Hi Joannie
    Saw on the news that genetic testing might become  avaiable in aust to individuals when starting a family.....this would mean that it would be very easy for people to find out about many different hereditary health  issues 
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