need information to make difficult decision in treatment

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hope4more
hope4more Member Posts: 1
in Colorectal Cancer #1
I was diagnosed with Rectal cancer. Mass was removed due to rectal bleeding path report states T2 nd mass was large with small amount of cancer cells. All biopsies since have come back negative. Saw 2 colorectal surgeons with 2 options, they are total APR (colostomy non reversable) or chemo/rad. Since surgery I have had 2 strictures. I am a little person and have shorter arms so reaching for a colostomy bag would be very difficult. If I opt for chemo/rad there are side effects and % of reoccurrence is 10-20% within 10 yrs. I am 46 yrs old and I am independent now, very worried about becoming dependent. Not sure what to do gathering information to make this very important decision. Any thoughts are appreciated.

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  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
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    Hi

    You mention you are a little person and expressed concerns about being able to reach for a colostomy bag. Did your surgeon determine placement? Ideal location is usually your left of the belly button and down to avoid the waistline; however some have it located above the waistline. This just makes a difference with clothing choices.

    I suggest that you contact a doctor who is very familiar with treating the lttle person body structure, to determine if radiation and its potential side effects on bones would be a concern.

    I do wonder though about the options you were given. If the mass has been removed and there was no other involvement, why a colostomy? I also have to wonder about chemo/rads.
    You didn't mention if you had CT or PET scans done for diagnostic purposes.

    If you are near one of the major cancer centers in the US (Sloan, Vandy, Andersen, etc) I would suggest another opinion where you might be able to find a specialist who has some experience with your particular body type.

    Please stay in touch with us and let us know how you are doing.

    Marie who loves kitties
  • John23
    John23 Member Posts: 2,122 Member
    #3
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    hope4more -

    You'll find some very worthwhile information at the
    UOAA board. Please take some time to fully understand
    the impact of an ostomy vs the impact of radiation damage
    and recurrences of rectal cancer.

    Unless your arms now prevent you from defecating
    in the normal manner, having an ostomy should be
    of little concern.

    The best way to get cancer out would be to have it removed
    surgically. Chemo or radiation can not "seek out and destroy"
    individual cancer cells or clusters.

    Both chemo and radiation have side effects that I won't
    go into now, but there is a lot less damaging effects with
    good surgical techniques.

    If the only problem you're having with a decision, is regarding
    having an ostomy, please take some time to learn more
    about it from those that have an ostomy.

    Sometimes vanity can be detrimental to one's longevity!

    If you decide on a total rectal removal, please bring the
    thoughts back here for further discussion? Or, if you sign
    in at the UOAA site, you can ask there about what to
    demand from the surgeon regarding the operation
    and about the proper placement of a stoma.

    Take your time with this major decision.

    Be well,

    John

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