My Presentation at the International Anal Neoplasia Society conference

As I had previously posted, I was asked by Justine Almada of the HPV and Anal Cancer Foundation to give a presentation about my cancer journey to the attendees of the International Anal Neoplasia Society conference in Atlanta.  And as I promised, I am posting my presentation for everyone to read.

It was such a great experience and I took some notes when Dr. Eng and a couple of other speakers made presentations during the same segment of the conference.  Dr. Eng spoke with me and the other two “thrivers” who spoke when the session finished.  What a privilege it was to speak to her!  I found her to be very personable and genuinely interested in our stories.  Kassie from the Anal Cancer Foundation took a pic of all of us and if she sends it to me, I will post it for everyone to see.  Dr. Joel Palefsky and Dr. Michael Berry, both from UCSF were there and also took time to speak with us afterwards and thank us for giving our presentations.  I tell you, it was like meeting royalty!   I will go through my notes and do another post after I’ve had time to go review them and make sense of my scribbling.

“Good morning.  In May 2008, I was a very fit 54-year old runner in the best shape of my life, or so I thought.  However, I began noticing blood and mucous with every bowel movement.  I saw my internist a few weeks later, at which time she performed a digital rectal exam and diagnosed the source of my bleeding as a thrombosed hemorrhoid.  Since I was 4 years overdue for my first screening colonoscopy, due to my own procrastination, my doctor insisted that I not delay it any further and referred me to a colorectal surgical practice to schedule the colonoscopy and get treatment for the hemorrhoid.  I made the appointment and tried to reassure myself that it was nothing serious—JUST a hemorrhoid.

I saw the colorectal surgeon the following week, at which time she took an extensive history.  After answering a few of her questions regarding the rectal bleeding, she promptly escorted me to an exam room, where she performed a digital rectal exam and anoscopy.  After I dressed, she came back to speak with me and stated that she was 99% sure that I had anal cancer.  I was in total shock and had a sudden feeling of doom come over me.  She recommended that I schedule a colonoscopy with her in two days, at which time she would do a biopsy.  She was so confident in her preliminary diagnosis that she had her office staff proceed with contacting both a medical oncologist and a radiation oncologist to take my case.  I was so overwhelmed that I didn’t even know what questions to ask and left there knowing only that I would most likely receive 6 weeks of chemo/radiation. 

The colonoscopy was performed and I began the agonizing wait for my biopsy results.   When the results finally came in they were inconclusive, due to the fact that some cell characteristics of squamous cell cancer were not seen.  My doctor had the specimen sent for a second biopsy, which confirmed her diagnosis.  Within the next three weeks, I saw both oncologists for initial evaluations, had my radiation simulation and fitting for my mold, and my staging PET/CT.  Thankfully, the scan showed my tumor to be localized and my cancer was staged as T1N0M0.  A week later, I had a port placed in my chest.

On July 28^th, 2008, I began treatment of six weeks of Intensity Modulated Radiation and two rounds of chemo with Mitomycin and 5FU.  Initial side effects were slight nausea and fatigue.  However, other side effects soon became present, including thrush, decrease in appetite, abdominal pain and cramping, diarrhea with blood and mucous, itching in the anal area, and severe pain with bowel movements and urination.  At the beginning of the third week, my blood counts showed I was neutropenic, so I received Neupogen injections.  I began to experience hair loss on Day 21.

Beginning week 5, I received my second round of chemo, at which time I was very weak, had no appetite, and weighed 92 pounds.  I had second degree burns and my radiation oncologist gave me the option of taking a break in treatment.  I made the decision to proceed and on September 9^th, 2008, I had my last treatment.

My burns recovered in about three weeks and my energy level gradually improved.  My appetite returned and I gained a few pounds.  I even began running again.  Post-treatment follow-ups were scheduled for 6 weeks, at which time my colorectal doctor did an exam and told me the lesion was gone.  I continued to be examined every three months for the first three years, then every six months thereafter, which I still continue to date.  Post-treatment scans have shown no evidence of recurrence or metastases.

In September 2010, at two years post-treatment, during my routine follow-up, my colorectal doctor found three small internal condylomas, which were surgically removed and negative upon biopsy.  In January 2013, a sudden onset of severe abdominal pain, accompanied by nausea and vomiting, resulted in a trip to the emergency room, where a CT scan revealed a partial obstruction of my small bowel, possibly due to adhesions.  I was admitted for observation and IV fluids and, eventually, the obstruction cleared without any further treatment.  I have since had several similar, less severe episodes, none requiring hospitalization.

Presently, at 6 ½ years out of treatment, I am able to enjoy a fairly normal life, with only a few long-term issues.  Urgency and frequency of bowel movements are common and I often experience bleeding.  Making food choices can be a difficult balancing act, in order to keep from experiencing diarrhea or the extreme opposite.  Although not confirmed, I believe that I may suffer from malabsorption issues, primarily with foods that are high in fat.  As a female, I experienced sudden menopause at the time of treatment and now deal with vaginal atrophy and pain with intercourse, despite regular use of vaginal dilators.  Reduced flexibility, stiffness, and hip and back pain plague me.  Bone density scans have revealed osteoporosis in my right hip and osteopenia in my left hip and lumbar spine, possibly due, at least in part, to the radiation I received.  Despite these findings, I have continued an exercise program, which includes running, walking and weight training, and I’m proud to say that I was able to run a full marathon in April 2012.

The emotional component of this journey has, perhaps, been the most difficult for me and the fear of recurrence is ever present.  I also worry about another cancer diagnosis in the future, possibly HPV-related, or one that is a result of the very treatment that saved my life in 2008.   Participating on several online support sites has been very helpful, where I have received wonderful support from other survivors and am also able to help those whose journeys are just beginning.  We often share the same long-term side effects, fears and emotions.

In communicating with other survivors, I have realized that my story is not uncommon, beginning with a misdiagnosis.  We all agree that anal cancer awareness is still lacking in both the medical community and general public and that attitudes must change.  The stigma often associated with this disease must stop and prevention efforts must increase, including the rate of HPV vaccination.     

Thank you all for listening to my story today and for your knowledge and expertise in the diagnosis and treatment of anal cancer.  I am most grateful to know that continuing efforts are being made towards increasing awareness and improving detection, treatment and quality of life for survivors such as myself and for those who are diagnosed with anal cancer in the future.”