I am from the Uterine cancer board but...

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TracieLC1972
TracieLC1972 Member Posts: 15
in Colorectal Cancer #1
I have a problem I hope you guys can help me with! I have heard you guys are nice over here!!!!

My moms mom was diagnosed with colon cancer at 48 and died at 49.
My mom was diagnosed with colon cancer at 48 and died at 50.

So, back in Febuary Dr.Rafiq did a colonoscopy and removed 4 polopys and 3 came back pre-cancerous. I am 39. No other genetic markers.
July 25th I was diagnosed with Stage IIIc Grage II endometrial cancer. During my hysterectomy on October 11th The doctors took some tissue to send off to test for Lynch Syndrome.

Back in July the doctors who were doing the surgery wanted to remove my colon without really explaining to me why. So, I ran to Dr.Rafiq then and he explained to my husband and I why it was recommeded. So, I had to see one of the bigger hospitals GI docs ok he refuses to remove it during my hysterectomy. Just have another colonoscopy in two years. Well Dr. Rafiq said protpcol is 6months to 1 year,
Tomorrow I get to see Dr.Rafiq for the first time since my surgery.
He should be able to get in the computer and pull up the pathology results and see if it is positive for Lynch Syndrome.
If it is positive I have an 80% chance of being diagnosed with colon cancer within 11 years. I will want my colon removed.

Please will you either run over to the uterine cancer board and look for my post with the name TracieLC1972 or email me at tracielee39@ymail.com
Thank you very much

Tracie

Comments

  • John23
    John23 Member Posts: 2,122 Member
    #2
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    Tracie -

    It can take 1.5 to 2.5 years for a cancer cell to grow large enough
    to be identified. If you had a colonoscopy now, then 6 months is
    really too soon for another.

    That aside... If you have decided to go for a colostomy or ileostomy,
    then make sure you tell your surgeon that you want to make sure
    the stoma is placed in the best spot -for you-. You would want to
    engage the services of an experienced WOCN to help locate the
    best spot. It is -very- important to take that initiative, since it
    can mean an easy management of the ostomy, or living hell.

    If you're considering a complete colon removal anyway, then why
    not use the "wait and see" approach? Leaping into a "preventive
    measure" when there's no need to, is only subjecting yourself
    for needless discomfort.

    Cancer usually moves slowly, and so should we with our decisions
    and direction.

    Take care; stay healthy!

    John
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #3
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    Tracie,
    *Duplicate Post From UC board*

    I am not going to be as rosy as the others. Your family history, and your diagnoses of endometrial cancer, are strong indicators of Lynch Syndrome, which can be a much faster growing variant than what most of us on the CRC board have.

    You may not have it, only your doctor can say for sure, but you should treat this as serious.

    Let me suggest you pay a visit to the United Ostomy Association: UOAA Forum

    LIVESTRONG is another resource, and lastly, a site called My CRC Connections, where they offer one on one telephone support.

    On a personal note, I had a colonoscopy within a month of my 50th birthday, all clean. Two years later I had stage 4 CRC, so I am not in the camp that suggests this is always a slow growing cancer.

    Sorry to be so gloomy, and I do hope you find out tomorrow that you do not have Lynch.

    Blake
  • abrub
    abrub Member Posts: 2,174 Member
    #4
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    John23 said:

    Tracie -

    It can take 1.5 to 2.5 years for a cancer cell to grow large enough
    to be identified. If you had a colonoscopy now, then 6 months is
    really too soon for another.

    That aside... If you have decided to go for a colostomy or ileostomy,
    then make sure you tell your surgeon that you want to make sure
    the stoma is placed in the best spot -for you-. You would want to
    engage the services of an experienced WOCN to help locate the
    best spot. It is -very- important to take that initiative, since it
    can mean an easy management of the ostomy, or living hell.

    If you're considering a complete colon removal anyway, then why
    not use the "wait and see" approach? Leaping into a "preventive
    measure" when there's no need to, is only subjecting yourself
    for needless discomfort.

    Cancer usually moves slowly, and so should we with our decisions
    and direction.

    Take care; stay healthy!

    John

    Polyps can grow quickly
    John,

    I have a family friend who has new pre-cancerous polyps removed at EVERY 6 month colonoscopy. There is a certain condition (I don't know the details) where the polyps do grow quickly. She must have colonoscopies every 6 months.

    On the bright side, she's been doing this for many years, and is still ahead of the curve - she's in her 70s now. She is also a breast cancer survivor (since 1985).

    Alice
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
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    Tracie
    I am sorry for your losses, but given your family history, I think it's a good idea to be proactive. While I also disagree about how fast or slow cancer grows, I do think it's a very good idea to make sure that any "new plumbing" you get is installed in the best place possible if need be.
    I too hope your Lynch Syndrome results are negative.
    -p
  • laurettas
    laurettas Member Posts: 372
    #6
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    More news you don't want
    Just a quick note about something we have learned. My husband has signet ring cell colon cancer. It does not form normal polyps--more like indentations than polyps and can often only be seen using scopes with a special spectrum light. This cancer also grows quickly.

    It is good that you are being pro-active--keep learning all you can.
  • Linda Lee
    Linda Lee Member Posts: 7
    #7
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    John23 said:

    Tracie -

    It can take 1.5 to 2.5 years for a cancer cell to grow large enough
    to be identified. If you had a colonoscopy now, then 6 months is
    really too soon for another.

    That aside... If you have decided to go for a colostomy or ileostomy,
    then make sure you tell your surgeon that you want to make sure
    the stoma is placed in the best spot -for you-. You would want to
    engage the services of an experienced WOCN to help locate the
    best spot. It is -very- important to take that initiative, since it
    can mean an easy management of the ostomy, or living hell.

    If you're considering a complete colon removal anyway, then why
    not use the "wait and see" approach? Leaping into a "preventive
    measure" when there's no need to, is only subjecting yourself
    for needless discomfort.

    Cancer usually moves slowly, and so should we with our decisions
    and direction.

    Take care; stay healthy!

    John

    Lynch Syndrome Has Aggressive Colon Cancers
    John, with a Lynch syndrome cancer, the colon cancer can metastasize in one to three years. Often, there are flat polyps that are very aggressive. Lynch cancers are often different than sporadic cancers, so it is important any person who is at high risk for Lynch syndrome have annual cancer screenings, as per the guidelines. For more information, visit www.lynchcancers.com

    Warm regards, Linda

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