Prior to my diagnosis of anal cancer in the summer of 2013, I had repeated pap tests that were positive for atypical and squamous cells of the cervix. These areas that were found were frozen and repeat tests were performed and clear for a while. I also tested positive for HPV, the last time in 2007. When I was 20, it was severe enough to warrant a cone biopsy, removing part of my cervix and being told I may never have children or if I did become pregnant, I would probably not be able to carry the baby to term. Well, I survived that and had two children, one weighing just under ten pounds. The other was almost nine pounds. But the fact remained I was not clearing the HPV.
I had the usual screening colonoscopy when I was 55. I was told I had a polyp, which was removed and an internal hemorrhoid. The doctor sent me home with a clean bill of health and told me to eat a lot of fiber and drink more water. About a year and a half later, I had a discharge that did not go away with normal treatment. I couldn’t really tell where it was coming from, and I called my gynecologist because I assumed it was vaginal. She took one look and told me she wasn’t going to whitewash it, I had anal cancer. She did a uterine biopsy to make sure, but also sent me immediately to the surgeon. He also took one look, pulled up my colonoscopy photos and showed me what we were looking at. It was cancer then and it had grown. I had a skin tag on the exterior and a tumor on the inside, which were connected. He scheduled me for biopsy surgery and hoped he could remove all of the tumor.
I guess I was in a state of shock. I didn’t cry, I didn’t break down, I just felt stunned. I had expected something was wrong, perhaps even uterine or cervical cancer and was prepared for it. My gynecologist had told me to be aware of something like this after menopause, but except for hearing about the death of Farrah Fawcett I had never heard of anal cancer, much less expected it to be what I had that day.
Everything moved in slow motion after that. I laughed, I cried, I laughed some more. If I hadn’t laughed, I would have fallen into a deep depression and laughing was easier. The following Monday they removed what they could of the tumor and sent it for testing. A diagnosis was confirmed. It took almost a month to schedule the oncologist visits and wait for the biopsy to heal. Just the pain from the biopsy was horrific for a few weeks and that needed to heal in order for them to start the treatment. I spent those days researching what anal cancer was, joining several cancer forums and reading about anal cancer on Anal Cancer Foundation site. There really was not much information except for this site. We have a rare cancer and I guess no one wants to talk about anal cancer. I even told my sons to just tell everyone I had stomach cancer. It seemed easier. My boss didn’t want to hear it either, it would have been easier to have breast cancer I thought. I didn’t have HIV or had had anal sex. But every article only talked about those risks. I realized we all have an anus, so why not just say it like it is.
From that day on, I just tell people the truth with dignity! Many if not all of the survivors I have befriended are exactly like me!
I had no idea at that time what a stage was or what mine was. I only knew that the tumor was 2.5 cm. I had a PET/CT done. They tested the tumor which was positive for HPV 16. No real surprise there given my history. Two weeks following the biopsy I met with the surgeon and he explained what stage it was based on the tumor size and the PET/CT results. If I had not had a lymph node involved, I would have been stage 2. With the pelvic node glowing from the PET/CT scan it was now stage 3B. My case was sent to the Tumor Board at the hospital to determine what treatment I was to receive.
They determined that I would have concurrent chemo/radiation with 5-U and mitomycin C. Meeting with the medical oncologist, he explained the chemo drugs that I would receive and how I would receive them along with anti nausea meds. I had blood tests and more blood tests! I was going to given 5-FU with mytomicin C on the 1st to 4th day of radiation and the 25th to the 28th day of radiation. It was actually given to me the 23rd day to the 26th day. Radiation would be every day for 28 days and would take about 20 minutes each day. The total dose of radiation would be >50 gyr. I had researched all the machines and asked for the 3D-IMRT machine. The oncologists agreed and this machine was available at this hospital. There was still the matter of getting the lymph node though and the radiation field would have to be increased in order to avoid removing it surgically which they did not recommend. Some damage to the intestines was inevitable.
Well there was no turning back now! Four weeks after my diagnosis I was off to the radiation oncologist. I met the radiation team, received my tattoos (four very small dots used to line up the radiation machine) and they built a form to hold my legs during treatment. My legs were put together like a frog and the mold material put around them. Within minutes they had a mold. Lying on my back on the table of the radiation machine, the ceiling had a wonderful back lit scene of clouds and blue sky. At least there was something to focus on during those 20 minutes lying still like a frog on that cold table! Talk about embarrassment! But that quickly subsides and it doesn’t matter who sees what anymore. In reality, I said a few prayers each day after assuming the position and talked with those I knew in heaven, my dad, my grandmother etc., and told them I wasn’t coming anytime soon and as I did deep breathing exercises, I’d fall asleep! It was that easy. Radiation is not painful. The after effects are but not the treatment. The nurse explained I may need dilators after this was over and explained the necessity for creams to keep the skin moist and how to apply them and removed them for the next day’s treatment. I bought a cookbook and cooked and froze healthy food and fruit pops and prepared for the days I couldn’t. I was keeping busy so I wouldn’t think about what was going to happen! I conversed with an online support group every time I had a question and there were a lot of questions. These survivors had been through the worst and were not afraid to answer my questions and provide advice and support. I wanted to hear the reality, not the safe answers the doctors had given me. Yes I would lose my hair, and be burned to a crisp and have urinary tract infections and diarrhea or constipation. I would throw up and feel horrible, but I would also survive! They told me their stories and that it was temporary and how to get through it. Being proactive with the doctors was the best way to get through. Taking anti-nausea medication was very necessary, sitz baths were a godsend , and there were painkillers if I needed them. There were other medications that solved the burning urination and helped with the bowel issues. I stocked up on cotton underwear. I bought sweat pants two sizes too big because I was told about how sore my skin would be. In general there was something to solve most of the problems with the treatment. If I had to give anyone advice, it would be to be proactive and tell the doctors and nurses immediately if you were not comfortable. No one wants us to feel bad and there are solutions.
I had a PICC line inserted for the chemo the first day of radiation. That didn’t go so well, but they finally got it inserted. This was the first of three. One for the first round of chemo, one for the second round and a third when the second one pulled out. They also used the PICC line to draw blood for testing. I was thankful for that as I never was one to give blood easily and hated being stabbed with a needle!
I felt well enough the first two weeks of treatment to drive myself every day. My radiation treatment was 30 miles away and an easy ride up the turnpike. I enjoyed knowing I could still do it myself and I planned errands around my treatment. I had to stop working the day I was diagnosed as my daily commute was a two-hour train ride each way and the healing from the surgery took time. I decided to have my treatment in Maine rather than Boston.
The equipment for radiation that was the best was available at the largest hospital in the state. I could have opted to have my treatments in the city where I worked as they have fabulous hospitals, but it is a tiring day when you are well and I couldn’t imagine travelling four hours a day for treatments. My company told me to go home and relax and not to worry about a thing. I had wonderful family and friends that each took a day of the week to drive me to radiation. By week three I was worn out. On day 27, I could no longer get out of bed. It took over an hour just to get to the bathroom to shower, and I never stood up straight. My ride was on her way and instead of radiation that day I was admitted to the hospital. My blood cell count was so low and I had diarrhea that was so intense that I was severely dehydrated. I had been having hydration therapy for the last week, but it wasn’t working. My doctors were very surprised, as I had been doing so well up to that point. 40 bags of fluid, many doses of medication I have no idea what they were for and 11 days later I went home. I had a blood clot from the PICC line and now had to take a blood thinner and be tested twice a week. I was put on a diuretic for thirty pounds of fluid in my legs and arms. I had a box full of different vitamins. A good friend from high school came from Florida to stay with me and manage my house. I was exhausted, still had no control of my bowels and slept 18 hours a day. But I was still here! I had so much to be thankful for and so many friends doting on me. You never realize how much you need other people and how willing they are to help until you are that sick.
Every week got better, the skin peeled off and the black skin was replaced with pink new skin, most of my hair fell out then grew back curly, I got a haircut. I learned that Depends were not the end of the world and sometimes necessary when you went out in the world again and bathrooms were miles away. My blood count slowly got healthier. I made Christmas dinner! The bloating in my arms and legs slowly subsided. Writing this I have forgotten what the pain and fatigue felt like during treatment and after. It has been replaced with a different pain from the side effects, but like childbirth it will someday go away too. We are survivors and we get better.
The daffodils my oldest son and I planted the week I was diagnosed came up the following spring. It is my victory garden and I will continue to plant 50 new bulbs every year. I have had many side effects from the treatment, but the cancer I am told is NED (no evidence of disease). I am thankful for every day I wake up and try to find something good in everything. As a survivor it is important to give back, and now that I am on the other side of the fence, I try to do that every day.
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.