Where to Start?

8890vero
8890vero Member Posts: 4
in Colorectal Cancer #1

i was just told Friday I have rectal cancer. Good news its high in the rectum but thats all I know. Hoping to be staged by the end of the week. Geisinger Danville, PA will do my staging but depending I may go to Fox Chase Philly or John Hopkins. Any recommendations or advise?

Comments

  • John23
    John23 Member Posts: 2,122 Member
    #2
    8890vero -

     

     

    Re:
    “Any recommendations or advise?”

     

    Yes:

    1. Get other opinions from other colorectal surgeons that are not of the same group or association as your present physicians..

     

    2. Do NOT fear having an Ostomy and having to use an Ostomy appliance. In fact, welcome the major change to your body with the knowledge that you’ve taken the major step to remove the cancer.

     

    Go to the United Ostomy website and see what they have to say:

    UOAA.com = https://www.ostomy.org/forum/viewforum.php?f=2&sid=e1151a8d0f120318f1156b14979b5103

     

    Good luck, and best wishes for a great new life!

     

    John

     

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #3
    John23 said:

    8890vero -

     

     

    Re:
    “Any recommendations or advise?”

     

    Yes:

    1. Get other opinions from other colorectal surgeons that are not of the same group or association as your present physicians..

     

    2. Do NOT fear having an Ostomy and having to use an Ostomy appliance. In fact, welcome the major change to your body with the knowledge that you’ve taken the major step to remove the cancer.

     

    Go to the United Ostomy website and see what they have to say:

    UOAA.com = https://www.ostomy.org/forum/viewforum.php?f=2&sid=e1151a8d0f120318f1156b14979b5103

     

    Good luck, and best wishes for a great new life!

     

    John

     

    With all respect...

    ...that's a little to early to discuss. It's not certain that this patients will need ostomy at all and even if s(he) does there will be plenty of things to do before that: staging, genetic counseilling, treatment plan, time tables etc.

    But John is right: get 3 independent opinions from professionals and some hands on experiences and tips from here and you will be all right.

    We are here to support you and wish you the best outcome.

    Laz

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #4
    Hi

    Sorry you find yourself in a position to be here, but glad you found this board as it has folks at all stages of the journey and with mega experience in just about any treatment option.  Ask anything and folks will try to help.

    Both of the hospitals you mention (Fox and Hopkins) are listed as NCI comprehensive cancer centers which is good.  Here is a site where you can find them and others http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center

    You mentioned being "staged" at another facility.  Did they say how they were doing that?  The reason I ask is that usually a CT or other scan is done to see if there is any indication of cancer elsewhere.  Sometimes final staging is not done until after surgery when lymph nodes are taken to see if the ones locally are involved.

    Wishing you best results on the staging.  Please let us know how things go and don't hesitate to ask about anything the docs tell you...always remember, no one doc (no matter how good) will know everything, having docs that you feel comfortable with and communicate well is vital and you will always be your own best advocate when it come to treatments choices.

    Marie who loves kitties

  • 8890vero
    8890vero Member Posts: 4
    #5
    Lovekitties said:

    Hi

    Sorry you find yourself in a position to be here, but glad you found this board as it has folks at all stages of the journey and with mega experience in just about any treatment option.  Ask anything and folks will try to help.

    Both of the hospitals you mention (Fox and Hopkins) are listed as NCI comprehensive cancer centers which is good.  Here is a site where you can find them and others http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center

    You mentioned being "staged" at another facility.  Did they say how they were doing that?  The reason I ask is that usually a CT or other scan is done to see if there is any indication of cancer elsewhere.  Sometimes final staging is not done until after surgery when lymph nodes are taken to see if the ones locally are involved.

    Wishing you best results on the staging.  Please let us know how things go and don't hesitate to ask about anything the docs tell you...always remember, no one doc (no matter how good) will know everything, having docs that you feel comfortable with and communicate well is vital and you will always be your own best advocate when it come to treatments choices.

    Marie who loves kitties

    Staging

    I have a CT scan tomorrow, then they're scheduling and internal ultrasound and my oncology appoinment is next Thuresday. I'm being very agreesive with them the not knowing if this crap is all thorugh your body or localized is torture. Questions about the bag why don't they just hook up the new plumbing from the get go?

  • LindaK.
    LindaK. Member Posts: 506 Member
    #6
    8890vero said:

    Staging

    I have a CT scan tomorrow, then they're scheduling and internal ultrasound and my oncology appoinment is next Thuresday. I'm being very agreesive with them the not knowing if this crap is all thorugh your body or localized is torture. Questions about the bag why don't they just hook up the new plumbing from the get go?

    Patience

    I know it's hard to wait, but you have to have patience and try not to jump the gun on anything. I don't think they can actually stage it without a biopsy and/or lymph node removal and testing.  Did they do a biopsy during a colonoscopy?  My husband had a tumor in his colon, they did a biopsy during a colonoscopy, which confirmed adenocaricinoma but they did not stage it until the path results from his surgery (about a week later) when they removed the tumor and checked multiple lymph nodes.  With my husband's surgery, they didn't know until they got into it if he would need a temp bag - he did not.  Many people here have had both temporary and permanent bags.  Good luck

    Linda

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #7
    8890vero said:

    Staging

    I have a CT scan tomorrow, then they're scheduling and internal ultrasound and my oncology appoinment is next Thuresday. I'm being very agreesive with them the not knowing if this crap is all thorugh your body or localized is torture. Questions about the bag why don't they just hook up the new plumbing from the get go?

    If a perm ostomy is not required, then the reconnect is done at time of the surgery to remove the tumor.

    The need for a temp ostomy is determined by the surgeon based on what he has to do and if he/she feels that the reconnect site can handle the "flow" while healing.  I don't know for sure, but believe it is a different location than where the tumor is removed.

    Having an ostomy is not as big a "problem" as one might think.  I have had a perm ostomy for over 3 years now and it is not getting in the way of any life activities.  It does take a bit of getting used to, but that happens pretty quick.

    If your surgeon thinks you might have to have a temp or perm ostomy, be sure to have marking done before the surgery.  This will locate the optimal site for placement of the ostomy so it does not get in the way of belt line, etc.

    Hoping for best results on your additional tests and surgery.

    Marie who loves kitties

  • danker
    danker Member Posts: 1,276 Member
    #8
    8890vero said:

    Staging

    I have a CT scan tomorrow, then they're scheduling and internal ultrasound and my oncology appoinment is next Thuresday. I'm being very agreesive with them the not knowing if this crap is all thorugh your body or localized is torture. Questions about the bag why don't they just hook up the new plumbing from the get go?

    scan

    The CT scan will give the Dr.s more information.  You may also get a PET scan which hi-lights where cancer cells are.  To cut out a part of your colon is rather hard on it.  Thus not using it for a while with a temp ileostomy makes for better results when the ostomy is reversed and the colon re-connected.  Good Luck to you!

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #9
    staging

    My brother's rectal cancer was 2A. His cancer was high in the rectum just touching the colon. He had a temporary ostomy bag, but it was removed after a couple of months. They did chemo first to shrink the cancer (using a portable infusion pump), then they did the surgery to remove the tumor, leaving a temporary ostomy bag, then the ostomy was removed and he had more chemo where he had to go in once a week for a drip of meds. He had no issues for almost 2 years, but now it has metastisized to the lungs, but just a few nodules. They are going to do surgery and more chemo.  We are taking it one day at a time. We are happy that it was caught and he is alive to see so many things he couldn't have if we didn't catch it early.

     

    I agree, get a 2nd opinion if you have any concerns. Make sure your doctors are on top of it. Keep a positive attitude. I'm actually thinking about finding another oncologist. The surgeon is very positive, wants to operate and get the tumors out, but now we're being told the oncologist may not want to do that. Now I'm waiting for the oncologist to return my call. Ugh! The waiting is absolutely horrible!

     

    Lin

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