Hereditary Non-Polyposis Colorectal Cancer
Posted on: Sat, 23/08/2008 - 12:27
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Hereditary Non-Polyposis Colorectal Cancer
I have just found out that my Aunt (dad's sister) looked into being tested for the breast cancer gene as many of the women on her mothers side of the family have had it. She gave all info to the geneticist including the info about myself and my father who died from Bile duct cancer aged 43. She received a letter in Feb to say that they were not concerned about the breast cancer link but more concerned with the link between myself and my father and the high possibility of our cancers being caused from the hereditary non-polyposis colorectal cancer (HNPCC). What I'm cross about is that she has neglected to tell any of us about it. I have 2 sisters and 3 children of my own and my sister also has 2 children and although this obviously doesn't concern her anymore, as they are pretty sure that if she were to have the gene for HNPCC she would already have had something show up on colonoscopies....it still VERY MUCH is of super importance to myself, mu children, my sisters and any of their children.
I am in contact with the familial cancer centre here already and I was contacting her to info on my granparents when she sent me a copy of this letter. You would think it would have occured to her to let us know a little earlier! And if I hadn't looked into the familial genetics of my cancer maybe she would never have told us!
Anyone else have the HNPCC gene???? And if so what other types of cancers in the family have been directly related?
Thanks for reading my winge post!
Cheers
Michele
Wow! This is something I am going to bring up with my doctor. I mean he said that the rectal cancer I had was not genetic, but after reading some more info on HNPCC I want to know more. I am going to discuss this with my doctor on my Tuesday visit.
I went on vacation for the last 2 weeks so that is why I have not posted anything new. I hope all is well with you and your family and I will continue to think about you.
~Stacy~
~Stacy~
G'Day,
How lovely for you to have been away. Hope you had a wonderful time. It had actually crossed our minds a few times and I even mentioned it to my onc that maybe dads cancer was actually bowel cancer that spread to the liver and bile duct. He only ever had scans done and because he chose not to have treatment they didn't investigate any further. My bowel and nodes never showed up on any scans, not even a PET so I wonder if the same may have happened with dad.
I see my onc on Tues as well so will show him the letter then, and I see the familial cancer people this week too. Do you have any other cancers in your family? Especially people who got it young???
Hope you are feeling well Stacy. When will chemo start? Good luck with that too. Hope to see you about more now that you are back and well rested!!!! With 4 kids, is that possible!!!
Love Michele xx
I have been just diagonse with HNPCC MHL1 mutatuion. I am 28 right now but haven't not seen any kind of problem so far, I am sure something will appear sooner or later. I do have same mutation running in my family from dad side. lets see if new genration can survive given the fact we know what is causing the cancer in our family
This must be very distressing to you to have this thrust into your face what with everything else going on. As you say, why the delay - or maybe why tell you at all, as it is just one more thing to worry about. Hopefully by the time any children from the next generation are old enough to be affected by any of this, there will be effective new treatments: after all, there is no point scientists making all these genetic discoveries unless they are going to keep apace with developments in treatments and prevention advice.
Sending you hugs xxxxxx Penny
Penny