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Living with HIV and HPV - How are you doing?

This discussion is a forum for those living with HIV and HPV. A place to share your challenges and safely discuss or share resources for the newly diagnosed as well as long-term survivors.

  1. I am a 30-year long-term survivor of HIV and have been living with HPV for most of my life. Over the years, I am sure I've had discussions with my doctor about the HIV/HPV connection. Still, with so much information to remember and a lack of opportunistic infections, I either forgot what was said or just began feeling invincible.

    That changed recently when I was diagnosed with squamous carcinoma in my rectum and on my tongue. I was lucky to have caught it early and to be in relatively good health. I had both removed through surgery, but still opted for chemo and radiation therapy.

    The treatment was very difficult, but I am happy to say that we are looking at a positive outcome. Right now, I have to commit to some lifestyle changes but the choice between eating more fiber and cancer is an easy one to make.

    I wonder if anyone else has an experience with HPV-related cancer or other issues that they want to talk about. It was very stigmatizing for me when it happened, but I've learned over the years it's better to face these things head-on and not to ignore them.

    Robert Brunet - Team Member

    1. Yes, I have both HIV and HPV but I have seen my every appointment and I don't have cancer.

      1. Hi . So glad to hear your appointments and tests have been clear. Do you mind if I ask how long it has been since your diagnosis? I ask because it is good for others to hear that continued good health is possible. Best, Richard (Team Member)

      2. Thank you so much for sharing that. I'm also really happy to hear that you are clear from cancer. Can I you a question? Does your doctor regularly discuss your HPV status with you?

        I was surprised that it was a topic that my doctor rarely brought up. I hope that things continue going well for you.

        Robert Brunet - (Team Member)

    2. I'm a 40+ year HIV/AIDS survivor. I also have HPV (not sure how long but difinitely more than a dozen years). While I don't know for certain the cause, I had cancer on my tongue also. Fortunately I didn't need chemo or radiation. I also had breast cancer (pretty sure that wasn't HPV related). Twelve years out from the oral cancer and 8 years for the breast cancer, I apparently have defeated both (still on drug treatment for the breast cancer).
      I'm interested in how your tongue cancer was treated if you don't mind sharing.

      1. Hi Eric, Thank you for sharing your story. I'm happy to hear of your success with your treatment and your victories over the cancer. Seeing the length of time since your diagnosis and where you are today is inspiring.

        I did not receive chemo or radiation for my tongue. When the carcinoma appeared on my tongue I monitored it daily for about two months. It expanded in size almost overnight and at that point I visited an oral surgeon for a biopsy.

        Because I caught it early a simple excision of the soft tissue removed everything. We also removed one lymph node to ensure no cancer cells had drained into it.

        I'd love to ask if the diagnosis prompted any lifestyle changes you benefitted from.

        Robert Brunet - (Team Member)

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