I am Phil, and I live in London, England. I was diagnosed with anal cancer in December 2009 at age 55 years. I knew that I had a lump on the rim of my anus, but I thought it was a haemorrhoid. Then one evening I had to rush to the toilet feeling as if I had diarrhoea. I was bleeding however. There was blood in the toilet bowl and in my underwear – a lot of it. It was a terrible shock.
I went to the doctor's the next morning, and from then on my feet didn't touch the ground. I was sent for a colonoscopy. All the while I was undergoing the examination, I heard the doctor saying, “Nothing there, nothing there, all OK”, and then, just at the end, I heard him say, “Hang on, what's that?”
A biopsy was taken and then a few days later I was asked to go back to the hospital. I received the call on Friday afternoon and was asked to go in on Monday morning. I knew it couldn't be good news. I spent a tense weekend.
I was expecting the doc to say that I had bowel cancer, but he explained that it was anal cancer. I didn't even know what anal cancer was. I had surgery the following morning. The tumour was very small, stage T1, and I got over it straight away.
A few days later I saw the oncologist. She was great and very reassuring. Scans showed that it had not spread. I was asked whether I wanted to participate in a drugs trial and I agreed to that and was chosen to receive the older regime and the newer one too, so I had four sessions of chemotherapy and 28 sessions of radiotherapy. I was fortunate in that I didn't have any adverse effects from the chemo, and I didn't lose my hair. (Not that there's much to lose anyway!)
The radiotherapy, however, was very painful. The first week was OK, then my skin started to react and the diarrhoea started. Generally, the pain was centered on my groin and scrotum. The medical staff were very kind and understanding and kept me well supplied with morphine, cooling pads and aqueous cream, and they told me to take as much diarrhoea control drugs as I liked. I only experienced painful bowel movements for a few days towards the end of the treatment, but I must admit they were very painful.
At home, however, I couldn't have got through it all without the help of my partner. Household chores, shopping and preparing food would all have been way beyond my capabilities. If you undergo this treatment, you really need to have someone to take care of you. I spent more and more time relaxing in a cooling bath. I can't tell you the pleasure that gave me.
Sleeping was a problem because the top sheet kept sticking to my skin, which was sloughing and weeping by now. The hospital gave me special squares of material to lie on, but the top sheet was a problem. It was winter and too cold not to have any sheet. However, my partner made a sort of 'bridge' out of a cardboard box to support the bed sheets and keep them off by body. This provided tremendous relief.
I did have a troubling weekend when I found it difficult to urinate and then started to bleed from my penis. But on the following Monday the doctor told me that this was normal. The radiotherapy was also burning the inside of my urethra and the skin was sloughing off inside and blocking up the pipe - very nice. "What next?" I thought. He told me to keep trying to urinate even if it was only a little dribble as if it blocked up entirely I would have to have a catheter fitted. At that point my penis was so swollen and sore that I couldn't bear anyone to touch it and the thought that a catheter would have to be inserted gave me nightmares. Fortunately, I kept going and didn't need the catheter and after a few more days I was able to urinate again. The oncologist had warned me that I would probably have to be hospitalised for about two weeks towards the end of the treatment, so I wasn't surprised when I was hospitalised for the last 11 days.
Anyway, I got to the end of the treatment, and then I went back for scans and check ups at ever greater intervals. I was discharged five years later in December 2014.
A few months after I had finished the treatment I had a horrible shock when I found a lump in my anus. I spent a couple of days in despair, until the doctor looked at it and said that it was a haematoma (a kind of blood blister in the anus) and wasn't harmful and would go away of its own accord in a few days, which it did. I didn't know what a haematoma was and had never had one before. You keep learning all the time.
I wasn't tested for HPV, but the oncologist did ask whether I had ever had genital or anal warts, which I had had in my early twenties, and she said that HPV was probably the cause of the cancer.
Following treatment, I suffered from diarrhoea for a while, and I never wanted to be far from a toilet. Panty liners in your underwear can be very reassuring and give you confidence. Gradually things improved and my bowel function is back to normal now. I do still very occasionally want to use the toilet quite unexpectedly and quite urgently, but it isn't anything serious at all and only happens once in a while - nothing to be bothered about.
The oncologist warned me that treatment may cause erectile dysfunction, and I do have problems with sexual function, but I take medication for it, and that works fine, and I know other men of my age, and younger, who need help too.
Making people aware of anal cancer and providing the HPV vaccine for both sexes is of paramount importance.
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.