• Lynch syndrom

    Asked by psue on Saturday, May 11, 2013

    Lynch syndrom

    I am currently being tested for this. After listening to the genetic counsler I fear more surgery and frequent reocurrance and poor prognosis. Any one have thoughts on this.

    7 Answers from the Community

    7 answers
    • carm's Avatar
      carm

      psue,
      Hello I am an oncology nurse and maybe I can shed a little light on your question. When you look at diseases from a genetic standpoint there are two distinct features that accompany every trait or mutation on a gene, the phenotype and the genotype. A genotype is the trait or mutation and the phenotype is the result. For example BB,Bb or bB might be the genotype that contributes to a hair color trait and then that trait is expresses in the phenotype which in this case would be brown hair. So the phenotype describes the genotype. Lynch syndrome is also referred to as HNPCC (Hereditary NonPolyposis Colorectal Cancer) and it is a cancer that derives from a germ cell. In the human body, germ cells are for a woman, the ovum.. and for a man, the sperm. Cells that are involved in reproduction or germinate. Your type if Lynch Syndrome, is a disease that got its start in your lineage and is passed down through your family and not the result of a polyp whether hyperplasic or adenomatous. Having Lynch syndrome does not mean that more surgery is necessarily needed any more than if you had another type of colorectal cancer, it just means that your cancer got its start through the family and when treating this cancer it is good information to consider, it is also important for other family members who are at risk and might want to get genotyped or their genetic biomarkers interpreted. I hope this helps answer your question. Best of luck to you, Carm RN.

      almost 4 years ago
    • CrazyHarry's Avatar
      CrazyHarry

      I had all of the genetic testing like you. What I was told is that if have the Lynch mutations they sometimes will do a colectomy instead of a resection because of the chances of cancer recurring. Also good stuff to share with your children. Good luck in your healing journey.

      almost 4 years ago
    • BeckyTice's Avatar
      BeckyTice (Best Answer!)

      Odd that this question should come up this morning. I have to do some research on Lynch Syndrome today to get ready for the meeting with my surgeon on Tuesday. I too carry the HNPCC gene. I had the resection done by robotic surgery on April 8 this year. Now I'm suffering with two hole [seroma] and the doctors are arguing about chemo... 5FU won't do much good but FOLFOX may or may not affect the future. Here's the question I have.... My mom had colon, uterine, and breast cancer. My dad had prostate cancer. So am I supposed to worry about uterine and breast cancer in the future.... or will it be the Alzheimer that will get me?

      almost 4 years ago
    • psue's Avatar
      psue

      Thank you carm, CrazyHarry, and BeckyTice for responding. My understanding/concern comes from speaking to a gastroenterology oncologist. He and the geneticist said the current recommendations are for annual surveillance (colonoscopy/endoscopy) due to the increased probability of uterine, ovarian, endmetreosis. Also he stated that in the past they did colonoscopys every 3 years but by that time tumors had already developed. I need to review colectomy because I had the resection. I am grateful that I can get the kids tested and we will have knowledge. The day I wrote this post I felt very down down about having to worry about aggressiveness of my disease. I just try to remind myself that life is always uncertain I just need to plod along through Chemo right now and hope for the best. I will try to put worry away for today.

      almost 4 years ago
    • BeckyTice's Avatar
      BeckyTice

      psue... hang in there. If we have Lynch Syndrome there's nothing we can do about it. Any time we allow ourselves to worry about it is time taken away from the good moments in life. I'm going to give it some time online so people who don't know can find a positive source of information. I always figured the myasthenia gravis [another inherited issue in my family] would get me. I never dreamed cancer was lurking. I hate to say it... I'm a little thankful that it might be the cancer that gets me... you see Alzheimer also runs in my family. To me it now looks like Lynch Syndrome is not quite as big a monster hiding under my bed as the others.

      Keep us updated....

      almost 4 years ago
    • BeckyTice's Avatar
      BeckyTice

      On another site... psue... someone passed this link to me. http://www.lynchcancers.com/

      almost 4 years ago
    • psue's Avatar
      psue

      BeckTice-- I share so many of your concerns. I think we will need to be concerned about all these cancers. When you look at the statistics for all the different areas this can manifest once you know the Genetic Link they seem so low 6% here and 8% there it seems like we have a fighting chance. But I was told the percentage of people with Lynch Syndrome is 3% so now I don't dismiss low numbers like that. I am going to have a total hysterectomy this year once I complete chemo to cover myself. I have twin 17 year olds (boy/girl) so I want to be aggressive for them. My grandma had Alzheimers so this has always been my greatest fear, I did not expect this but i don't want that either. Really I think all this worry probably causes cancer, lol.

      almost 4 years ago

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