genetic colon ca

crusader
crusader Member Posts: 5
edited March 2014 in Colorectal Cancer #1
Im a 23m, and just been told that I have HNPCC(hereditary nonpolyposis colon ca). I am 2.5 yrs removed surgery and chemo, with NED.

My oncologist proposed a total colectomy to reduce my chance of recurrence. Has anyone else had this done, or proposed? How about dealing with an ostomy bag?

Comments

  • spongebob
    spongebob Member Posts: 2,565 Member
    #2
    Ahoy, Crusader -

    I am also HNPCC. I started my cancer journey at 36 (actually the cancer started at 33, I found out about my uninvited guest at 36). I had a hemicolectemy (right and transverse). I also did chemo and have been in remission for about the same amount of time as you. The thing with HNPCC is that it doesn't limit itself to only living in the colon. HNPCC affects many other organs in the body - primarily digestive and reproductive. There is another genetic form of colon cancer called FAP (Familial something or other polyposis). I know that a common treatment for FAP is a complete cloectemy and the resulting ostomy. The reason they so often do the complete colectemy for FAP is bacause of the polyposis nature of the disease - literally hundreds of polyps occur. For that reason, it is nearly impossible to get clean margins when doing surgery. Based on what I have read, also, FAP is more discriminitory and tends to affect only the colon versus our HNPCC which is less discriminitory.

    I'm certainly not saying your doctor is wrong - s/he has your chart and knows your individual case. What I am saying is:

    - A colectemy won't take away the threat of HNPCC causing you cancer again - albeit elsewhere in your body

    - As an HNPCC patient you should be geting colonoscopies YEARLY - not the recommended 3-year cycle. That's for organic colon cancer survivors who are NED. Remember, with us, every cell in our body is a potential cancer cel - they're all coded with the DNA typographical error.

    - The way to ensure you stay NED is through extreme surveillance and healthy lifestyle choices. NOT (in my humble opinion) by cutting out a possible site for the cancer caused by your HNPCC syndrome to affect. Following that logic chain, you really should then get your stomach, liver, kidneys, bladder and pancreas removed also.

    I'd be happy to chat with you more about this if you'd like to drop me a note here at CSN.

    - SpongeBob
  • steved
    steved Member Posts: 834 Member
    #3
    I'm 32 and had colon ca removed last year. I am still waiting for my tests to come back for HNPCC. I am also a doctor so have talked a bit to colleagues about this.

    A colectomy would be considered an extreme treatment for HNPCC and Spongebob is right about it not totally removing the risk of ca elsewhere. I don't know if there are clear studies on this as an intervention but this is probably somehting worth discussin with a geneticist and surgeon to get clear information on the pros and cons of it.

    You would end up with an ileostomy whihc I currently have and am looking to get reversed now I have finished post op chemo. It isn't the end of the world and does become normal after a while (will be odd to sit on teh loo again afater 8 months of standing!). It does not stop me doing anything although I need to keep an eye on my diet- low fibre and not too fat helps keep it regular. Otherwise I am fairly happy it does not have a major impact on my life. there are people who struggle with the change in self image and esp for young people aspects of sexuality/ dating etc do come into it and should be considered. However if it helps keep you alive and cancer free it is worth considering.

    hope this is helpful and let us know if you have further questions.
    Steve
  • crusader
    crusader Member Posts: 5
    #4
    Thank you for the advice SpongeBob and Steve. Since diagnosis, we had always suspected it was genetic, given my age, and family history. My oncologist by no means recomended the colectomy, he just through it out there as an extreme option, and I just wanted to know if anyone had actually had it done.

    I think annual colonoscopies are a better preventive measure, and less invasive than sx. In fact, the MD said that he would recommend a colonoscopy every six months, if they find a polyp or two. However, if I had the colectomy, than i wouldnt any more colonoscopies right? Have often do you have endoscopies? My last one was two years ago.

    Steve, Im glad to hear that your doing pretty well wiht the ostomy bag. That must been an adjustment, and I commend you.

    Thanks for the advice.
  • Reini
    Reini Member Posts: 22 Member
    #5
    steved said:

    I'm 32 and had colon ca removed last year. I am still waiting for my tests to come back for HNPCC. I am also a doctor so have talked a bit to colleagues about this.

    A colectomy would be considered an extreme treatment for HNPCC and Spongebob is right about it not totally removing the risk of ca elsewhere. I don't know if there are clear studies on this as an intervention but this is probably somehting worth discussin with a geneticist and surgeon to get clear information on the pros and cons of it.

    You would end up with an ileostomy whihc I currently have and am looking to get reversed now I have finished post op chemo. It isn't the end of the world and does become normal after a while (will be odd to sit on teh loo again afater 8 months of standing!). It does not stop me doing anything although I need to keep an eye on my diet- low fibre and not too fat helps keep it regular. Otherwise I am fairly happy it does not have a major impact on my life. there are people who struggle with the change in self image and esp for young people aspects of sexuality/ dating etc do come into it and should be considered. However if it helps keep you alive and cancer free it is worth considering.

    hope this is helpful and let us know if you have further questions.
    Steve

    Hello my husband has duodenal cancer and his oncologist has said that she is very confident that it is HNPCC. She wants him to have a genetic test to confirm it. His tumour was missing MLH1 which we have been told is a sign of hnpcc and his age ( 34) We live in australia so there may be a difference over there but we have been told that my husband may not be able to keep his salary continuance insurance if he has this test. Are theer insurance problems in the US with genetic testing? Our oncologist has also said that HNPCC unstbale tumours are usually easier to treat, have any of your doctors told you that. His cancer is so rare but not supposed to be rare amongst HNPCC sufferers. They plan to gove him a coloncoscopyu annually and an endoscopy every 6 months ( which is how they found the cancer)
    Hope to hear from you soon
    Take care Belinda

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