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Genetic testing

Posts: 835
Joined: Apr 2004

have recently agreed to being tested for HNPCC (hereditary nonpolyposis colon cancer) and attenuated FAP (familial adenomatous polyposis) after seeing the clinical geneticist. The reason they are keen to offer this is my young age of onset (31) and the fact my parents died young so they can't be certain of whether they would have developed colon cancer so my family history is unknown.

I would be interested to hear from anyone who has knowledge of these tests or has been tested as my wife and I have battled a lot with getting our heads around teh implications including for our new born baby, my siblings, insurance matters and the need for furhter screening for other associated cancers if it turns out to be positive.

I await your replies,

Moesimo's picture
Posts: 1080
Joined: Aug 2003

I will have genetic testing done. My daughter has been dx'd with colitis and i wouldn't want her to go thru this. Noone in my family has colon cancer and I am the youngest of 5. I was dx'd when I was 46. Good luck with your testing and let us know what happens.

MJay's picture
Posts: 132
Joined: Aug 2004

Hi Steve- I chose to have the testing done. First my insurance paid for the initial testing (cost est. $750) then based on the result of that test we would then decide to do the further DNA genetic testing. Sorry don't know the technical terms. My first test came back Negative (it is NOT hereditary) and am told that false negatives are very rare but false positives are not rare. If the result would have been positive we would have pushed the insurance company to pay for the DNA testing ($2-3,000)and if they said "No" I think I would have paid for them myself.

It was important to me to know if my kids would have this horrible "Axe" hanging over them. They will still have to be diligent and start screening at age 27 (10 years before earliest age)but at least I know I was a "flook".

All they did was use the slides from the biopsy they took of my tumor. Thank goodness they took biopsies because radiation/chemo totally irradicated the tumor so by the time surgery was done there wasn't anything to get a good biopsy from.

I say if you can get the test and insurance pays for it..... just do it. Knowledge is power.


Posts: 28
Joined: Jul 2004

Hi I was dx in may long story anyway mine was emergency lots of complications but I am here today doing chemo every 2 wks 48 hours I will be done 10/28 then surgery to reconnect and burn what ever spots on liver are left. Anyhow, what I want to get to is I have 4 children 38, 35, 33 and 24 my oldest 38 called her doc right away and wanted a colonscopy done because I am only 56 and had to face this my case was different though because none of my docs every offered or told me anything about a colonscopy test at all even when I had so many bladder infections, this includes my gyneocologist too, they were good at sending me for test for mammogram, bone density but never colonoscopy, any how here I am dealing with this, her doc told her she was to young to have it done wait til she was 40 luckily she did not accept that and called the gas. dr and told them the situation and they told her as young as I was to be diagnosed she is not to young she had it done today and they had to remove 6 polyps, so far the doc said he thougth they were benign but just think if she would of waited how bad she would of been I want to know who do these docs think they are by putting an age on when you should have test and when you can get cancer? when she left the gastro docs office they told her to call her brother and sisters and tell them to get the test done to because there is never age for colon cancer. so there is genetic and hereditary in colon cancer. They now will have to get there test every 2 yrs but hey that is better than going thru with what I had to go thru and have to go thru. So please do not take what the docs say at first get 2nd opinions all the time, I wish I would of had that option of someone doc telling me to get a colonoscopy but I didn't and why would I walk into their office and request one never would of dawned on me besides they were my docs they should of known and read my medical files. not me I am a lay person. yes I am bitter about my docs ignorning my signs and not giving me an option. That is why I was on my children to get it done do not believe what the docs says cancer does not discriminate even with age.
So please do what ever you have to do to protect your family. sorry for rambling but this gets very emotional for me and now to know my children have to start watching there life style too is not a good feeling.

Anonymous user (not verified)

Hi Steve. I don't have much knowledge of this/these tests, but Bert had it done as well. His father died at age 57 of right colon cancer...tumor was the size of grapefruit and growing for at least 7...that's right, 7 years before they found it and then it really was too late...that was 28 years ago. Bert's right sided stage III tumor was found July 2003 even after being tested several times since age 42 with (alas) sigs only and when they found it, it too had an estimated growth time of about 5 years. We have a son who turned 27 this year and it is for this reason Bert did the test. His results were negative but the warning that my son is at a much higher risk remains and therefore, suggested first colonoscopy is no later than age 30.


spongebob's picture
Posts: 2598
Joined: Apr 2003

Ahoy, Steve -

I had te HNPCC genetic testing done on me, my mom, my sister, and all of my aunts and uncles as part of the Human Genome Project being done by the NIH. As part of that study, they are mapping the HNPCC gene and I got involved at Bethesda Naval Hospital.

I would like to discuss the test - well, not so much the test, but the implications of the results of the test with you. I made a rather lengthy entry a few months ago discussing the test's implications, you might run a search on HNPCC and Genetic Testing and see if you can find it.

I guess you could say that I am not necessarily a big proponent of the test, now that I have had it done (and tested positive for HNPCC). I would be happy to discuss the "why" with you off line.


Posts: 835
Joined: Apr 2004

That would be interesting Bob and I would be keen to hear your opinion. Tried to email you via the icon on your message but it wouldn't function. Not sure what went wrong. Feel free to email me here or at my hotmail address at stephendinniss@hotmail.com Look forward to hearing from you,

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