I am a 57 year-old female who, in May 2008 at the age of 54, began experiencing rectal bleeding with bowel movements while on vacation. Upon returning home, I saw my internist who diagnosed me with a bleeding hemorrhoid after performing a digital rectal exam. I was given a prescription, but also a card referring me to a colorectal group for a colonoscopy, NOT because of the rectal bleeding, but because I was 54 at the time and had not yet had my first screening.
At that moment, it would have been very easy for me to have blown it off as a bleeding hemorrhoid and nothing to be concerned about. However, I felt that it was more serious and scheduled an appointment with the specialist. I saw her on June 18, 2008 for my consult visit, prior to scheduling the colonoscopy. After hearing my symptoms, she decided to examine me that day by anoscope. When she completed the exam, as she and her assistant left the room and closed the door, I heard her assistant mention Farrah Fawcett. At that very moment, I knew I had cancer! The doctor came back in and told me that even before biopsy, she was 99% sure I had anal cancer. The colonoscopy with biopsy was done two days later, and the biopsy results came back the following week confirming her diagnosis. I was totally shocked and petrified.
My next two appointments were with a medical oncologist on July 10th and a radiation oncologist on July 11th. The treatment explained to me briefly by the colorectal doctor was exactly the protocol the oncologists were recommending—two rounds of chemotherapy, using mitomycin and 5 fluorouracil (5FU), concurrent with six weeks of intensity modulated radiation therapy. A PET scan was done on July 16th to stage my cancer, and fortunately I was stage I, with no evidence of nodal involvement or spread to other organs. I met with a chemo nurse on July 18th to review the drugs, their side effects, and how to combat them. On July 21st, I had surgery to implant a chemo port in my chest. On July 22nd, the radiation center did CT scanning to finalize my treatment plan and placed permanent tattoo marks on my skin to aid in lining me up correctly every day on the machine.
I began treatment on July 28, 2008 - not knowing what to expect and scared to death. Anti-nausea meds were taken at home in advance of the IVs, which also included anti-nausea drips prior to the chemo drugs. Mitomycin was given at the chemo center, then a pump was hooked up to my port and a bag of 5FU was set for a 96-hour drip. I was sent home with the 'fanny pack' containing the pump. I experienced some nausea, but the anti-nausea meds helped tremendously and I never did vomit. Radiation treatments also began that day, and for the first two weeks were pretty uneventful, as you do not feel any effects from the radiation in the beginning. My hair began falling out on day 21, but I did not lose it all, just in clumps.
The second round of chemo began on August 25th and with it, I experienced more nausea, fatigue and lack of appetite than in round one. However, still no vomiting. My weight plummeted to 92 pounds. By week three of the radiation, my skin started to burn. It continued to worsen the farther I got into my treatments, and honestly, by the last week, I just wanted to die. I didn’t see any way that I was going to make it to the last treatment. I was terribly burned and every time I urinated or had a bowel movement, I would just want to scream in pain. To make matters worse, we’re not talking about just one or two BMs a day, we’re talking multiple episodes of diarrhea and very frequent urination. It was pure hell! However, with the support of my husband and friends, I did make it to the last treatment—I am still amazed.
After the last radiation treatment, the healing began very quickly. Ten days later, I was back on my treadmill, walking every day, and soon got back to running. However, this was not without many lingering side effects, mostly related to bowel issues. It seemed like everything I ate just went right through me. I didn’t venture out of the house unless necessary for fear of losing control of my bowels. This is a very upsetting side effect many anal cancer patients deal with, but it does get better! I still have occasional bleeding with bowel movements due to radiation proctitis. This seems to be a common long-term side effect experienced by many who go through this treatment. I now eat most foods without problems. However, occasionally something will cause my bowel issues to resurface - mostly diarrhea.
I have had numerous follow ups since treatment concluded, including several anoscopic exams by my colorectal doctor, PET scans, CT scans, and of course the much anticipated digital rectal exams! I am now almost 27 months post-treatment and, for the most part, my follow ups have yielded good results. However, I did have to have a minor surgery in September 2010 to remove three anal condylomas, which are HPV warts. The biopsy came back negative, thank goodness and the surgery was not nearly as bad as I had anticipated. I will continue to be checked every three months as part of my follow-up protocol, most likely for five years. I am feeling good, despite occasional fatigue, ongoing hip and pelvic stiffness resulting in decreased range of motion, and some bowel issues (mostly due to bad food choices). I had a bone densitometry in March 2009, which showed osteopenia, a common side effect of radiation treatment. I am treating this with supplements of calcium, vitamin D and magnesium, along with my exercise program. My last PET scan in July 2010 showed no evidence of disease (no activity at the tumor site). I get colonoscopies every year now. Anxiety always rears its ugly head when any type of follow-up exam or test is nearing, as it’s impossible to not think of the 'what-ifs'.
I realize that fighting cancer is 1) a full time job; 2) not a quick sprint, but rather a journey that lasts far longer than we would like; and 3) an opportunity to learn so much, from appreciating the simplest of things to becoming very well-educated on my cancer and trying to help others who are in the same fight. I know I can’t think of myself as cancer free until I reach the magical five-year mark. I must admit, right now, that sounds like an eternity.
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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.