In 2010, at an annual physical, when I was 53, I mentioned to my primary care doctor that I had some rectal bleeding. He said it was probably just an internal hemorrhoid. “It can’t be cancer,” he said. “You had a colonoscopy three years ago.”
Okay. A few months later, I went for my annual gyn appointment, and she performed a rectal exam and an occult blood test which checks for colon cancer, as she always does, but she couldn’t get a good test because there was too much blood. I told her what my physician said about there being an internal hemorrhoid and not to worry, but she worried. She sent me to a GI to have it taken care of, whatever it was. The GI used a small scope to peer inside and said “That’s not a hemorrhoid, that’s the cancer Farah Fawcett died of.” Then she looked up the records of my recent colonoscopy and saw that the GI noted the presence of an internal hemorrhoid. He did not take a biopsy, and he never told me what he saw. In fact, I never met him, either before or after the colonoscopy, which was my first ever.
“I can remove it,” she said. “It’s pretty minor surgery. Depending on the biopsy, you may or may not have to see an oncologist.”
I should have gone running to a GI Oncologist there and then, but she was so blasé about it, I was too. I told no one except for my husband. I had the surgery, the margins were clean and she was pretty happy. But then she must have read up on the cancer, because at my follow-up appointment a week or so later, she walked into the room and the first thing she said was “You didn’t bring anyone with you?” My hackles went right up. She thought I needed support for what she was about to say. Reading from notes, she began to tell me about the aggressive nature of anal cancer and that I would have to see an oncologist and almost certainly get treatment. “But good news,” she said. “You can be treated locally. I asked around and we’ve got a general oncologist who’s seen two cases.”
Seen? I thought to myself. Seen them come and go? But I called the number on the card she gave me anyway. The receptionist snapped at me when I began to tell her my availability. “We’ll tell you when we can see you. Give me your number and I’ll let you know in a few days when that will be.”
It was at this point I did what I should have done in the very beginning: ask for help. I told my friends and family what was going on, and they quickly found GI oncologist Dr. Jeffrey Clark at Mass General in Boston who saw me the next day, at an appointment that included radiation oncologist Dr. Ted Hong. Both were highly experienced with anal cancers. PET scan and other tests showed I was still stage 1, but since it is such an aggressive cancer they recommended chemo and radiation. It was a rough few months, but I’ve been cancer-free ever since.
For anyone with rectal bleeding, if you are told it’s from an internal hemorrhoid, ask to get it biopsied no matter how many doctors insist you’re fine. A GI had looked right at my cancer during a colonoscopy and thought nothing of it. Looked right at it.
As for those who are recently diagnosed, don’t be so embarrassed by the diagnosis that you don’t tell the people around you. Because of its rarity, GI oncologists don’t always list anal cancer as a disease they treat, so you will need help to find the right doctors. Do try to find a doctor who has done more than “seen” two cases (that receptionist, by the way, called weeks later with an appointment I no longer needed, not days). You might also need to be at a facility that has 3-D radiation equipment, so it is important that the team has access to that as well.
My three children were the first generation to get the HPV vaccine, and for them, a hemorrhoid will probably always be just that. But I worry that there is such anti-vaccine sentiment right now, that parents won’t get their pre-teen children vaccinated against HPV. Those of us who survive need to spread the word that HPV cancers can be prevented in the first place with a simple shot. There are so few preventable cancers in the world, and this is one of them.
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.