I know that the percentage is low...

HollyID
HollyID Member Posts: 946 Member
edited March 2014 in Colorectal Cancer #1
but who here has Lynch syndrome?

Comments

  • nannieg
    nannieg Member Posts: 3 Member
    #2
    Lynch Syndrome
    I had surgery for Stage I colon cancer and for Figo Stage 2 endometrial cancer in January 2008. After having both cancers I was tested and found to have Lynch Syndrome. So far all of my scans, etc. have come out ok. I have had three colonoscopys since my surgery and the one I had last month was the first with no polyps! I did not have any chemo or radiation for either of my cancers. It is kind of scary living with the thought of being at risk for so many different cancers. What is even worse is that I have three daughters and they have yet to be tested.
  • thready
    thready Member Posts: 474
    #3
    Lynch
    Holly,
    Have you been tested yet? I am headed to the GYN dr on friday and I have a mamogram coming up. I have had gyn issues lately and the uterus and ovaries showed signs of concern on the PET scan and ultrasound. so I will have an endometrial biopsy then go from there

    There was a question if my mom took DES when she was pregnant, just wondering if anyone asked you that question. There is information that DES can cause clear cell adenocarinoma and it usually hits in 30 or 40 year olds. They are not sure if it is a problem for later 40's and 50's because the kids affected are just moving into the "later" years.

    Take care,
    Jan
  • HollyID
    HollyID Member Posts: 946 Member
    #4
    thready said:

    Lynch
    Holly,
    Have you been tested yet? I am headed to the GYN dr on friday and I have a mamogram coming up. I have had gyn issues lately and the uterus and ovaries showed signs of concern on the PET scan and ultrasound. so I will have an endometrial biopsy then go from there

    There was a question if my mom took DES when she was pregnant, just wondering if anyone asked you that question. There is information that DES can cause clear cell adenocarinoma and it usually hits in 30 or 40 year olds. They are not sure if it is a problem for later 40's and 50's because the kids affected are just moving into the "later" years.

    Take care,
    Jan

    We just put in an order today
    for micro-satellite instability testing, which will tell them if I have LYNCH. My onc told me on my first visit that he would do this and I'm sure he forgot. Right now, it's a fight between my GYN and my onc whether I need a hyster. I vote for the hyster. :)
  • vchildbeloved
    vchildbeloved Member Posts: 133
    #5
    I have Lynch Syndrome. I
    I have Lynch Syndrome. I took the gene test in April 08, and officially found out. I knew even before then because several years before I was diagnosed, my brother had colon cancer and had tested positive. So after that, and with our family history I decided to be tested.

    Valerie
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #6
    thready said:

    Lynch
    Holly,
    Have you been tested yet? I am headed to the GYN dr on friday and I have a mamogram coming up. I have had gyn issues lately and the uterus and ovaries showed signs of concern on the PET scan and ultrasound. so I will have an endometrial biopsy then go from there

    There was a question if my mom took DES when she was pregnant, just wondering if anyone asked you that question. There is information that DES can cause clear cell adenocarinoma and it usually hits in 30 or 40 year olds. They are not sure if it is a problem for later 40's and 50's because the kids affected are just moving into the "later" years.

    Take care,
    Jan

    DES
    Interesting about the DES. That's not my situation, but I have a friend who's mom took DES while she was pregnant with my friend. It affected her own pregnancies by giving her an "incompetent uterus"- she found out by losing the first baby mid-pregnancy & she did have more kids, but she was on bedrest & meds to prevent early labor. This friend also happens to be a cancer survivor, as she had renal cell carcinoma (kidney) & had one kidney removed & is supposedly cancer free at this time. That's not an adenocarcinoma (I don't think anyhow), but I wonder if there's a link there. She never mentioned that link to me- I wonder if she's ever heard that or been asked that by her doctors. I'll have to ask her.

    Lisa
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #7
    I was tested
    I was tested because this was my second primary. I am a cervical cancer survivor too - over 5 years now. Also my paternal grandmother died in her 50's and they said it was liver cancer. She may have had a different primary and metastasis to the liver is what took her in the end (back in the early 60's). I tested negative for Lynch. So my children do not have to be tested.

    A family at my church has a father with Lynch, and both daughters have it. They started getting colonoscopies in their teens, and so far everyone has been kept in good health. (The dad did need a resection when his multiple polyps and small tumors were first found.)
  • mageed1
    mageed1 Member Posts: 2
    #8
    In March 09 I was diagnosed
    In March 09 I was diagnosed wiht StageIIA colon cancer at age 44. I had surgery...all large intestine removed....20 lymph nodes removed all clear no chemo. My doct wanted me to be tested for the breast cancer gene......in the profiling it came back saying I have a 25% chance of breast cancer but a 99% chance of having Lynch syndrome!! I'm waiting on the blood work now to get a positive result!!! My liver enzymes are elevated.....testing blood every 2 months....having right sided pain.
  • catherine58
    catherine58 Member Posts: 92
    #9
    Not sure...
    I was diagnosed with Stage 3b colon cancer in Feb 2007 and a year later was told that my tumour had tested positive for microsatellite instability (whatever that might be). I gather this means that there is a 90%+ chance that my cancer had a genetic origin, but further blood tests failed to identify a particular defective gene. They are still presuming the cancer has a genetic origin, but it's not one of the usual genes which cause Lynch syndrome (they told me that looking for a defective gene is like looking for a spelling mistake in a dictionary). From what I can gather there is a positive side to having Lynch syndrome, in that our tumours are less likely to kill us, but on balance I'd rather not have it!

    Catherine
  • JTL52
    JTL52 Member Posts: 16
    #10
    catherine58 said:

    Not sure...
    I was diagnosed with Stage 3b colon cancer in Feb 2007 and a year later was told that my tumour had tested positive for microsatellite instability (whatever that might be). I gather this means that there is a 90%+ chance that my cancer had a genetic origin, but further blood tests failed to identify a particular defective gene. They are still presuming the cancer has a genetic origin, but it's not one of the usual genes which cause Lynch syndrome (they told me that looking for a defective gene is like looking for a spelling mistake in a dictionary). From what I can gather there is a positive side to having Lynch syndrome, in that our tumours are less likely to kill us, but on balance I'd rather not have it!

    Catherine

    Lynch Syndrome
    Hi,
    I tested positive in 2006 after Endrometrial Cancer stage one in 2004 and Colon Cancer stage 3 in 2005.
    I go for an annual colonoscopy with endoscope at the same time.
    My oncologist and gastro agree they want me to go for an annual CAT scan because I had two colon tumors about 13 inches apart. Basically three tumors within a year removed.
    With the HNPCC(Lynch Syndrome)I have had no problem with insurance covering the additional testing.
    I will hit five years cancer free in August, so all is good.
    My daughter was tested at 30 and is negative, my son at 28 has not been tested yet.
    Janet

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