http://www.analcancerfoundation.org/

tanda
tanda Member Posts: 174 Member
in Anal Cancer #1

oHPVAnalCancer Foundation has updated it's website and has a wealth of information. Check it out!

NYTimes Magazine section for 5/15/16 is devoted to several interesting articles  on the latest translational research directions.

Our protocol is 30 or 40 yrs old!  There are practically no new clinical trials for a.c ,and a quick scan of the abstracts for the major oncology meetings (ASCO, GI Cancer Symposium,etc) have practically no new information about ac. Many hosptail websites (including cancer centers) do not list anal cancer among the other GI cancers that they treat. 

I have a friend who just completed chemoradiation for cervical cancer..(.a nasty treatment regimen)She is now in an immunotherapy clinical trial that hopefully will protect against a recurrence.  Since cervical cancer is also caused by HPV, I wonder if some form of immunotherapy might work for a.c recurrences

There are so few of us  and shyness and "stigma" are also keeping us invisable,  We need  a famous person or a celebrity to get outfront  and bring awareness and advocacy...Michael Douglas did this for Head and neck cancer...Betty Ford and others for breast cancer,etc; unfortunately ,most people were not clear about Farah Fawcett's cancer.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    tanda

    We, as AC survivors, are very fortunate that the Almada family founded the HPV and Anal Cancer Foundation.  They do have a very good website, chock full of good information.  I have had the pleasure to meet Camille Almada and I can assure you that they are very comitted to their mission of bringing awareness to anal cancer and increasing research for new treatments. 

    Thanks for posting about the NYTimes Magazine article.  I will have to check it out. 

    Anal Cancer, unfortunately, still is not getting the attention that other cancers get.  I believe this is due to the stigma attached to it, along with the fact that it is still considered a "rare" cancer.  As all of us know on this board, it is not "rare" to someone who has or has had it.  It is a shame that Farah Fawcett's death prevented her from speaking out about it.  Whether she would have been a spokesperson for the disease or not will never be known.

    Martha

  • CURED IS THE WORD
    CURED IS THE WORD Member Posts: 4
    #3
    Anal shy

    In response to your statement TANDA:

     There are so few of us  and shyness and "stigma" are also keeping us invisable,  We need  a famous person or a celebrity to get outfront  and bring awareness and advocacy...Michael Douglas did this for Head and neck cancer...Betty Ford and others for breast cancer,etc; unfortunately ,most people were not clear about Farah Fawcett's cancer.

    THIS IS SO TRUE!!!  I still tell some people I had rectal or colorectal cancer. It is embarassing to tell people that it is ANAL cancer because they do not understand and I had...I thought was a good friend tell me, It was my fault that I got it...I should of protected myself sexually....so when you get a few people look down at you or talk to you with disgust...I got a little gun shy to disclosing my true cancer. 

    I am glad I found you all 2 years later! There is power in numbers (and support)! Much love to you all!  Michele

     

  • tanda
    tanda Member Posts: 174 Member
    #4
    CURED IS THE WORD said:

    Anal shy

    In response to your statement TANDA:

     There are so few of us  and shyness and "stigma" are also keeping us invisable,  We need  a famous person or a celebrity to get outfront  and bring awareness and advocacy...Michael Douglas did this for Head and neck cancer...Betty Ford and others for breast cancer,etc; unfortunately ,most people were not clear about Farah Fawcett's cancer.

    THIS IS SO TRUE!!!  I still tell some people I had rectal or colorectal cancer. It is embarassing to tell people that it is ANAL cancer because they do not understand and I had...I thought was a good friend tell me, It was my fault that I got it...I should of protected myself sexually....so when you get a few people look down at you or talk to you with disgust...I got a little gun shy to disclosing my true cancer. 

    I am glad I found you all 2 years later! There is power in numbers (and support)! Much love to you all!  Michele

     

    Michele,

    Michele,

    I'm embarassed to confess that, when asked, I have "fudged' the true nature of my diagnosis.  I say it was a GI cancer, but not colon cancer(which usually involved surgery).  I doubt that cervical cancer patients (also a sexually transmitted disease , ususally involving HPV) get a similar unsympathetic response.

     

  • joang67
    joang67 Member Posts: 3
    #5
    tanda said:

    Michele,

    Michele,

    I'm embarassed to confess that, when asked, I have "fudged' the true nature of my diagnosis.  I say it was a GI cancer, but not colon cancer(which usually involved surgery).  I doubt that cervical cancer patients (also a sexually transmitted disease , ususally involving HPV) get a similar unsympathetic response.

     

    AC embarrasment

    I always say ano/rectal cancer, it helps with the embarrassment.  

    I finished my chemo/radiation in 2013, but the damage from radiation was so severe that I have to have an ostomy done beginning of July.  I wish there wasn't such a stigma attached to anal cancer because we need support also.

  • MariaBarr
    MariaBarr Member Posts: 5 Member
    #6
    Not Ashamed

    I was diagnosed at 38 years old and clear for 8 years now. When people ask I am very clear in explaining exactly where I had cancer. I even tell them that my tumor was as big as a lime and I was stage 4. I want people to know. It's important to me. 

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