On May 13, 2014 in San Francisco a Public Educational Forum addressed the short and long term quality of life issues that effect anal cancer patients after chemotherapy and radiation.
The event was a collaboration of UCSF Helen Diller Family Comprehensive Cancer Center, The HPV and Anal Cancer Foundation and the Farrah Fawcett Foundation and was co-sponsored by the UCSF Alliance Health Project, Project Inform, Shanti Project and the International Anal Neoplasia Society.
Dr. Joel Palefsky, of the Anal Neoplasia Clinic UCSF and President of the International Anal Neoplasia Society http://www.ucsfhealth.org/joel.palefsky
and Justine Almada, Executive director of the HPV and Anal Cancer Foundation http://www.analcancerfoundation.org/
opened the event, which was the largest gathering of anal cancer survivors –EVER.
Dr. Palefsy discussed his $89M grant to study anal cancer. The study will focus on determining the effectiveness of treating anal high-grade squamous intraepithelial lesions (HSIL), which are caused by chronic HPV infection. The study will have application to early detection and treatment of other HPV related cancer and in reducing the incidence of anal cancer. “Given these strong biological similarities, it is very possible that biomarkers and treatments identified in the study will be applicable to cervical and HPV-associated oral cancer as well,” said Dr. Palefsky.
For those who didn’t know, Justine Almada introduced attendees to the amazing work of the HPV and Anal Cancer Foundation. Justine told us about her mother, Paulette, who was diagnosed with stage IV anal cancer in 2008.
She and her siblings saw first-hand how few resources were available for anal cancer patients, caregivers and providers. After their mother’s death, they started a non-profit to advocate for much needed attention to the disease, to provide services, such as support groups for caregivers and patients, and to fund research in an effort to improve the therapeutic standard of care that has remained the same for the last 30 years.
They understand that anal cancer carries an incredibly difficult stigma. Many patients discuss the solitude they feel after being diagnosed with life threatening anal cancer, because they are not comfortable discussing anal cancer openly for fear of judgment.
She and her siblings believe that every cancer patient deserves resources, support and hope, including those with anal cancer. Through the HPV and Anal Cancer Foundation, they give other patients and their families the guidance, the information and the chance for saving a loved one’s life that they did not have.
Panelists, Dr. Albert Chang, Radiation Oncologist at UCSF http://radonc.ucsf.edu/faculty/physicians/chang_a.html
spoke about his work investigating the advanced imaging technologies, radiation therapy techniques, and targeted drug therapies that allow for the maximization of therapeutic effect while minimizing treatment side effects.
Katherine Van Loon, MD, MPH, Medical Oncologist at UCSF, a gastrointestinal cancer specialist with a particular interest in colon cancer http://www.ucsfhealth.org/katherine.vanloon
discussed the importance of diet and healthful lifestyles during and after treatment.
Allison Palandrani, DPT, Pelvic Health and Rehabilitation Center http://www.pelvicpainrehab.com/
spoke of the benefits of this specialized physical therapy to assist with pelvic health post radiation, including reduction of pelvic pain, incontinence and vaginal stenosis.
The professional presentations were videotaped. (Availability to be announced)
I was one of three thrivers who spoke. Our presentations were not videotaped, though we had the opportunity later to be interviewed. (Availability of those interviews will be announced)
The evening before, I had dinner with Pamela Tom, the founder of HPV and Me
In 2011 her husband was diagnosed with HPV-16 related throat cancer. During the course of her husband’s diagnosis and treatment, she spent hours on the Internet researching information about HPV throat cancer. Who gets it? What’s the prognosis? Why had she never heard about it before? What she learned was frightening: according to the American Society of Clinical Oncologists, by 2020, the number of HPV throat cancer cases will surpasses those of cervical cancer.
We talked about importance of education. Anal cancer is rare, but HPV related cancers aren’t. They are connected and they can happen to anyone.
It was the third time in a month I’d had the opportunity to speak about my personal experience with anal cancer. Last month I had been on two panels at American Association of Cancer Research AACR meeting in San Diego. For each of those, I had 3 minutes. At the Public Forum I had a bit more, but how does one tell of such a journey in 5 minutes?
As I sat waiting for my turn at the microphone, I flipped through 10 - 12 pages of notes. I’m always over-prepared, because I look at this from both sides – I am a patient, but I am also a health educator. I could talk for hours on the subject from either point of view. But, I asked myself what was my brief message to my fellow thrivers, not just about what happened to me, but what I saw as the bigger picture.
I decided to share:
· That I am incredibly ordinary and that if this cancer could happen to me, it can happen to anyone.
· That viruses don’t have morals, they just do what viruses do – they find places to proliferate.
· That this cancer is not our fault. We didn’t do anything wrong.
· That this cancer grows in inconvenient places
· That not only did we need to support each other here in this room, but that we needed to take back the narrative and combat the mythology about anal cancer and other HPV related cancers.
· That we need to lift the stigma for ourselves, before anyone else will. That we need get rid of the yuck factor.
· That it’s okay to acknowledge a perfectly normal part of our body, the anus.
· That no one should die of embarrassment.
· That in the future, my hope is that there will be a post HPV cancer generation.
· Yes, that I’m talking about the vaccine.
· That we look ordinary, even healthy, but if people could see our suffering, past and present, parents would be waiting in line to get their children protected.
· That a hemorrhoid is not always a hemorrhoid.
· That we need to get the word out about early signs and symptoms. This cancer is curable if caught early.
· That the future is hopeful. Research is underway that may open the door to a kinder, gentler treatments.
After a question and answer session, we doned our purple Kick Cancer’s Ass t-shirts and posed for photos.