What to do next?

SophChinoy
SophChinoy Member Posts: 4
in Anal Cancer #1

Hello.  I wanted to see if I could get advice on how to proceed with treatment for my mom.  She was diagnosed in June with Stage 2 Anal Cancer.  She finished chemo and radiation in September.  The radiation oncologist was hopeful but said if the tumor did not resolve then she would need surgery--which would mean a colostomy.  Last week she had a colonoscopy which revealed the tumor has shrunk from 3 cm to 1 cm.  The radiation oncologist has recommended that she see a surgeon after the holidays to discuss surgery.  We were all devastated by the news. . . . I guess overly optomistic that the radiation and chemo would do the trick.  :(  I was wondering if anyone out there has heard of any doctors that could perform surgery without requiring the colostomy?  My mom's tumor is at the very end of her rectum/anal area and actually can be visibly seen from the exterior.  I have heard of very specialized colorectal surgeons that could possibly do surgery and save the sphincter muscle?  Any advice would be greatly appreciated.  Thank you!

Sophie

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    What to do next?

    Hi Sophie--

    I'm sorry for your mom's circumstances and that her treatment does not appear to have been successful in ridding her of the tumor, according to her doctor and what was seen on her colonoscopy.  However, my radiation oncologist told me that the radiation can continue to work for up to a year.  If that is true, perhaps your mother's tumor may continue to dissolve.  I would ask your mom's doctors about getting a PET scan to see how much activity there is at the site of the tumor.  

    I have listed below a website address that you should check out.  One of our members on this board just gave us this information about a clinical trial that your mom may qualify for.  It is being conducted at Memorial Sloan Kettering in New York City.  I do not know where your mother lives, but I would definitely check in to it prior to undergoing surgery to see if she would be a candidate.

    "A Phase I Study of High-Dose-Rate Brachytherapy plus Chemotherapy in Patients with Recurrent Rectal or Anal Cancer"

    http://www.mskcc.org/cancer-care/trial/14-104

    The usual treatment for recurring anal cancer, unfortunately, is surgery that results in a colostomy.  However, the above clinical trial offers hope that there may be another option, so please check into it.  And please check with her doctor about how long the radiation can be given a chance to further dissolve the tumor and about getting a PET scan.

    I wish your mom all the best.  She obviously has a wonderfully caring daughter.  Please keep us posted on what is decided for her future treatment.

    Martha

  • pializ
    pializ Member Posts: 508 Member
    #3
    mp327 said:

    What to do next?

    Hi Sophie--

    I'm sorry for your mom's circumstances and that her treatment does not appear to have been successful in ridding her of the tumor, according to her doctor and what was seen on her colonoscopy.  However, my radiation oncologist told me that the radiation can continue to work for up to a year.  If that is true, perhaps your mother's tumor may continue to dissolve.  I would ask your mom's doctors about getting a PET scan to see how much activity there is at the site of the tumor.  

    I have listed below a website address that you should check out.  One of our members on this board just gave us this information about a clinical trial that your mom may qualify for.  It is being conducted at Memorial Sloan Kettering in New York City.  I do not know where your mother lives, but I would definitely check in to it prior to undergoing surgery to see if she would be a candidate.

    "A Phase I Study of High-Dose-Rate Brachytherapy plus Chemotherapy in Patients with Recurrent Rectal or Anal Cancer"

    http://www.mskcc.org/cancer-care/trial/14-104

    The usual treatment for recurring anal cancer, unfortunately, is surgery that results in a colostomy.  However, the above clinical trial offers hope that there may be another option, so please check into it.  And please check with her doctor about how long the radiation can be given a chance to further dissolve the tumor and about getting a PET scan.

    I wish your mom all the best.  She obviously has a wonderfully caring daughter.  Please keep us posted on what is decided for her future treatment.

    Martha

    Sophie

    Wishing you andyour Mom the very best. As for advice, Martha has said it all.

    Liz

  • jcruz
    jcruz Member Posts: 379 Member
    #4
    next?

    I want to echo what Martha said about the radiation continuing to work.  This was something my surgeon brought up when I had a PET scan only 2 months after my treatment ended.  Something lit up with a higher than acceptable SUV and the oncologist referred me to the surgeon for an examination under anesthesia and biopsy.  During my pre-op meeting with the surgeon he suggested that we talk about waiting for some period of time before the decision to do a colostomy.  Turned out to be scar tissue which was a huge relief.  I don't know if that might be the case for your mother.  Sounds like not since it is visible.  I assume there was a biopsy?

    I wish you and your mom the best

    Janet

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #5
    More on clinical trials........

    Do check into that clinical trial at Memorial-Sloan Kettering Cancer Center. It certainly wouldn't hurt to contact the researcher, no matter where your mother lives. If there are qualification or geographical impediments, perhaps they will know of another clinical trial that would address her needs.

    More clinical trial information ---

    National Cancer Institute: http://www.cancer.gov/clinicaltrials

    UCSF has done a lot of anal cancer research, but as of today, there are 2 that are not appropriate, but check back before you decide on anything: http://cancer.ucsf.edu/clinical-trials/cancer-clinical-trials

    Background info on clinical trials: http://www.cancer.net/cancer-types/anal-cancer/about-clinical-trials

    American Cancer Society - how-to for clinical trials: http://www.cancer.org/cancer/analcancer/detailedguide/advanced-cancer-clinical-trials

    American Cancer Society Clinical Trials Matching Servic: http://www.cancer.org/treatment/treatmentsandsideeffects/clinicaltrials/app/clinical-trials-matching-service.aspx

    Colorectal Cancer Clinical Trials - list of the major cancer-matching services: http://www.webmd.com/colorectal-cancer/guide/colorectal-cancer-clinical-trials

    All the best luck.

     

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