My survival journey through anal cancer

I was diagnosed with stage 3b anal cancer in Sept 2022 and while I consider myself a survivor, my experience was difficult, I'm sorry to say. In Aug 22, I started noticing that I was passing blood in my bowels movements. I was 59 at the time and I've certainly had plenty of hemorrhoids where there was bright red blood, but this was different. It was dark, imbedded and consistent. It wasn't normal and I knew it but I just didn't know how abnormal it was. I had a routine physical scheduled with my GP at the end of October but they had a cancellation in late Sept which I accepted. As part of routine questioning, I was asked it there was anything unusual going on physically, so I mentioned the blood. The nurse got off the phone for a moment and when she came back, I had an appointment for 3 days later.

My GP, during a digital exam (every guys favorite exam!) my doctor found a mass about 2 inches up the anal canal, and referred me to a colorectal surgeon, who further confirmed a cancer diagnosis and scheduled a biopsy for a week later. The word "cancer" was shocking and momentarily, time stood still while I tried to absorb the surgeon's words. After the biopsy confirmed stage 3 squamous cell carcinoma, that's when the battery of exams and consultations began for the next 45 days. My initial mass was 3 cms, not so bad. But it has also spread to 2 local lymph nodes near my groin, one at 3 cms and the other measured at 6 cms, not so good. Due to the proximity to the sphincter muscle group responsible for bowel movement control, surgery to remove the mass was not an option without a stoma and colostomy, so I chose what I thought would be the better option of radiation and chemo. As with most anal cancers, I had 30, 7-min rounds of radiation over 7 weeks, with chemo during weeks 1 and 5 consisting of a slow release of mitomycin & 5 FU over 96 hours in a waist pack delivered through an IV into a power port surgically implanted just under my right collarbone.

Since I was in otherwise good health prior to the start of treatment, it took about 2 days for the chemo to begin its' assault. It began as nausea and a terrible metallic taste in my mouth that reminded me of blood. The fatigue was a challenge but at the end of the first round of chemo, I developed horrific mouth, tongue and esophageal burns that landed me in the ER to control the inflammation so that I could somewhat eat and drink. The recovery from that took about a week, just in time for the radiation burns to start. Because the initial mass was close to the anal opening and the one of the lymph node were enlarged beyond 5 cms, the radiation was delivered to multiple sites with different strengths over the course of time which caused 2nd & 3rd degree burns to my anus, groin and scrotal area, causing enormous pain during bowel movements which lasted for about 3 months before they healed enough where I felt comfortable enough to wear normal underwear again. Copious amounts of burn cream, painkillers and cannabis certainly helped but nothing provided true relief except time.

Here's where perhaps my story departs from others, or maybe not. Approximately 3 months after treatment and recovery, I had a CT scan which showed that while the initial mass and the smaller of the affected lymph nodes had fully resolved, the largest affected lymph node had not. This began another period of waiting for another CT in about 3 months to monitor if the remained node was still active or if it had continued to shrink. In June of 23, I had another CT scan that showed the lymph node had further resolved but that now there were several lung spots that were considered to possibly be additional neoplasms. Another 3 months, another CT scan. I had 3 possibilities - original cancer spread, a new cancer diagnosis, or it would resolve itself. In Sept 23, I received the glorious news that almost all of the lung spots were gone and that the lymph node has further resolved. I was in remission!!

Here's what I don't hear enough about - the mental and emotion toll that cancer can take. I am constantly anxious about recurrence. My experience was so traumatizing that I developed PTSD over any sights, sounds or smells that reminded me of my treatment. I would freeze and go into a panic, start to sweat, sometimes cry and become almost non-functional. It happened at work, social events or even alone. I became hypersensitive to pain, especially emotional pain. And not just my pain, but anyone's pain, and I couldn't control it. I lost my job and my long time intimate relationship with my partner and caregiver. It think she was just as traumatized as I was.

My cancer treatment and survival has left an indelible mark on my soul. I try not to let it define me but it has divided my life into 2 halves, before and after cancer. Every new body pain or odd sensation creates anxiety and fear, along with every 6 mos CT scan. I've become a poster child for routine exams and early detection. I am living my life as best as I know how but with a new appreciation for just about every new experience I have. I'm just simply more grateful. I wish I had asked for help sooner but it's much harder than you think. I'm not trying to scare anyone, truly I'm not and I don't talk about it much, for somewhat obvious reasons, but it feels cathartic just to write this post. I wish someone had given me a more realistic assessment of what would really happen but then maybe I would have made a different choice. Cancer is incredibly hard but when you get to the other side, you understand just how strong you really are. I still have moments of panic but I'm getting better at centering myself and realizing that in this moment, I'm ok. None of us know what's around the corner which just further supports the importance of appreciation and gratitude for the life you have today. I'm a survivor and I intend to stay that way. I hope it's ok that I wrote this. Thank you for reading. SR