Six years ago (Mar 2009, Aged 55) I experienced an episode of rectal bleeding during a bowel movement. For two years my primary care physician diagnosed me with hemorrhoids. After continued periodic bleeding, rectal pain and constipation, I was referred to a general surgeon who immediately diagnosed me with cancer.
When I was first diagnosed, I was scared, angry and anxious but determined to move forward as quickly as possible to find out the type, stage and prognosis for my condition. The next several months involved a lot of doctor appointments, tests and procedures which confirmed an advanced stage anal cancer. I continued to work at my full-time job. I think keeping busy, having purpose and remaining focused on your well being is an important part of staying sane through the process.
Based on my diagnosis, I was scheduled for radiation/chemo therapy (Nigro Protocol) which involved 27 days of radiation, coupled with two to three-day chemo therapy infusions, which means being hooked up to an infusion pump 24 hours a day. I have to be honest, it’s not fun but I knew I was finally doing something to treat my cancer which made the treatment bearable. The radiation resulted in increasing pain, burning and was actually worse for a month after treatment ended. This includes bowel movements that are very painful. In addition, the chemo made me nauseated and created a side effect in my mouth (blistering of gums) which was downright awful. Again, this resolved after several weeks.
The next step is waiting for results of the treatment. The good news is that my cancer went into remission and has been for four years now. For me, follow up testing has involved anoscopies about every six months and a PET or CT scan at least once a year. However, my one-year scan showed a possible recurrence of cancer in my abdomen. After consulting with my doctors, we decided to wait three months and re-scan, since PET scans can produce false-positives. More aggressive options such as biopsy (location of recurrence made biopsy difficult/dangerous) and targeted radiation were deferred. Subsequent PET scans showed no recurrence. That’s a great result based on my advanced stage diagnosis, and I hope it gives anyone going through the experience the knowledge that cure is possible.
Long-term side effects for me have been minimal but include a change in bladder and bowel movement frequency and some changes in sexual function.
In addition, a significant on-going side effect is anxiety - anxiety about being diagnosed and then the ongoing worry about future scans and tests regarding my cancer status. I cannot emphasize the importance of working on ways to minimize anxiety. I found the practice of mindfulness to be the best way to address this issue. In my view, anxiety comes from worrying about the past or future. Mindfulness is a form of mediation that allows you to focus on the present. From my experience, the present is a very calm place. There are few worries and as a result little anxiety. For me the practice involves focusing on counting breaths, and I find that this brings me to the present and the past/future thoughts melt away. Lots of places to learn about mindfulness, I suggest giving it a try, if you have anxiety regarding your situation.
I have not felt stigmatized by my anal cancer diagnosis. Most people treat all cancers the same. Cancer is cancer.
In looking for support after diagnosis and treatment, I explored various options like the American Cancer Society and my HMOs support groups. However, I found them to be too generalized and my focus after treatment was learning more about anal cancer. I found valuable help and support at the Anal Cancer Foundation. I think each type of cancer has different effects on you and the Foundation has allowed me to learn about the physician resources, treatments available and access the Peer to Peer program which allows me to communicate with other survivors, one on one, which has meant a lot to me.
Because of my misdiagnosis and delay in treatment, I have been doing what I can in my community to improve HPV/anal cancer awareness, prevention and treatment. I think if each of us who has been touched by anal cancer does their part, we can make a difference. For me, primary care doctors need to be better trained regarding how to treat people who present with rectal bleeding. Referral to a specialist, anal PAPs and other diagnostic aids like High Resolution Anoscopy should be offered after a few weeks of symptoms. HPV prevention (vaccination for boys and girls) and more HPV awareness programs for MDs and patients are needed. In addition, as a gay man, I am alarmed at the skyrocketing incidence of anal cancer in gay men. I think anal paps should be the standard of care for gay men. Since cervical paps became the standard of care, the incidence of cervical cancer has plummeted.
Finally, another thing I learned during this experience, relates to health insurance. I belonged to a major HMO in California and when I had a potential recurrence, the HMO would not approve a second opinion outside of the HMO. I have since switched my insurance to a PPO which costs more but provides access to medical choice and providers and centers that have state-of-the-art care, treatment and access to translational cancer treatments if ever needed. If you have health insurance options, I would consider them. If you need to stay with an HMO, I would be very proactive in making sure they are offering you the best possible care.
So that’s my story. I hope it helps anyone dealing with the effects of anal cancer. Good luck and be as hopeful as you can!
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.