In September 2018, I was diagnosed with squamous cell carcinoma of the anus (SCCA), Stage I Anal Cancer. HPV strain was not tested. It wasn’t unusual for me to experience bleeding, discomfort, itching. Constipation was an issue for many years. In April of 2018, the bleeding was much worse. My primary care physician told me it was hemorrhoids. But by July of 2018, I felt a growth. I saw a surgeon in late August 2018, and we did surgery/biopsy a week later. A cat scan was done, and I was referred to a specialist. Cat scan and biopsy indicated that this cancer had not spread and was contained within the small mass removed. Both my surgeon and the specialist advised me that because the cancer was so small (micro) and, contained within the tissue removed, that I should consider frequent checkups with the specialist using special equipment, get the HPV9 valent vaccination, and keep an eye out for any symptoms of recurrence (i.e., bleeding, itching, pain, growth etc.).
My surgeon consulted with an oncologist, and he agreed with this plan. We opted against chemotherapy and radiation because of this advice and because there just wasn’t any cancer left to treat. In the first few months following surgery, there were a few abnormal cells that the specialist treated but follow-up biopsies indicated no cancer. I saw the specialist every 3 months the first 3 years and every 6 months the last 2 years. No sign of HPV or cancer. I have kaiser insurance and initially I wanted to seek a second opinion with Stanford or UCSF. However, I felt confident in the advice given by my team. I am trained in research, so I used the internet for further education knowing that what works for some might not work for others. I should note that the specialist I saw was incredible. Managing anal cancer is all he does. He has been thorough and provided amazing bedside manner and detailed information/education. I feel very fortunate to have this medical team.
My fiancé, our pup Sunny and I live in San Francisco. We lead a healthy lifestyle that includes skiing, hiking, biking, paddle boarding and eating a balanced diet of nutrient dense seafood, chicken, leafy greens, veg, berries, beans and we do our best to minimize animal fat, sugar and processed foods. While I am not always perfect with this approach, it is more of a habit now. I am also very conscious of ingredients I am putting into my body by reading labels on anything packaged. If it contains a long list – it is not for me. I see a therapist for help with mind-body balance and I exercise 5 days a week. I am learning to manage stressful things in life (including the news, pandemic, social media, etc.) with better coping skills.
Psychologically, I was really scared and confused in the beginning. How did I get it? How did it end up there? I was also very ashamed to talk about it for fear of being judged. Additionally, I did not want to sense fear or sympathy from people. This was isolating and lonely for me. I viewed my cancer as something separate from myself – which I think was good. It was not a part of me. But I also did not have to manage it as a chronic illness. My fiancé was incredible and extremely supportive as was my specialist, Greg Barnell (Kaiser Oakland). But the shame persisted. I frequently said, “figures I experience a cancer that is embarrassing to share”. I wanted to share my milestones with people. But I dreaded the questions about where it was. I would say rectal – as if that is better than saying anal! This statement was not true and not helping to normalize discussions about anal cancer. I worried about what people thought if I shared. What would people think or say about what many uniformed people call a lifestyle cancer? There were no pink ribbons with this cancer, no half marathons raising awareness or money, no t-shirts, buttons, hats or NBA/NFL players wearing AC colors. I remembered a time when Breast Cancer was called “lump in the throat”. So, I realized we have to fight this shame to bring awareness to AC, like Breast Cancer, and it starts with me. I am 58. Death has always been a very difficult concept for me. Facing cancer put things in perspective for me. I knew I had to trust my choices and let it go for my mental health. I didn’t have the chemo/radiation side effects or further HPV/AC to remind me. So, it was easier for me to envision my body as cancer free.
In 2000, I was diagnosed with vulvar intraepithelial neoplasia 3. Which was probably also HPV related. I believe that my anal cancer stemmed from this. In the following 23 years, I did my annual pap smears, but I didn’t see a specialist for the vulvar diagnosis using special equipment – which I should have done. I moved away from the area and the subject never really came up with my new GYN MD. In hindsight, I wish I would have been better educated and talked about the 2000 diagnosis with my new GYN, asked for the HPV vaccination and more thorough examinations including an anal pap. I have since talked with family and close friends about the importance of an anal pap since HPV is so common.
I am coming up on my 5-year anniversary of diagnosis. My specialist believes that I have very little chance of this cancer returning. No sign of HPV or Anal Cancer. Although he says it is not clinically necessary for me to continue to see him after fall 2023, I will see him once a year for peace of mind. I also continue to see a GYN specialist for the past vulvar diagnosis which remains clear.
In closing, I am grateful for Anal Cancer Foundation and this platform. Much appreciation to all those who have shared their journey, their pain and their joy. Giving Anal Cancer a voice provides hope, decreases shame and offers a space to share experiences with an often frightening/misunderstood/confusing diagnosis. The best advice I can give is to know your body and listen to it. No matter how minor any symptom is (itching for example), if it persists more than 2 weeks see a doctor. If you don’t feel you are improving, push your medical team for answers. And seek care from medical professionals who are highly experienced with Anal Cancer. Educate yourself – know your options. This form of cancer is often misdiagnosed in the early stages when chemo and radiation might not be necessary. Blessings to all who have lost their lives to anal cancer, to all survivors and to those recently diagnosed.
Looking for someone to talk to about your anal cancer diagnosis? We are here to help. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.