No One Ever Sees a Cancer Diagnosis Coming, Especially When it Involves Their Penis

January 26, 2021
Jonathan Little

A cancer survivor writes about how he, like many, was blindsided by his diagnosis and what it was like to receive treatment for a rare disease: penile cancer.

We all know someone that’s had cancer, but we never really think it’s going to happen to us. At least, I certainly didn’t.

In 2019, I was 40 and married with two children and two cats and was living a comfortable life. I was quite fit, wasn’t a smoker or much of a drinker. To me, I didn’t fit the “stereotype” of a patient with cancer.

By the late summer, I’d developed a bit of an itch on my penis.

I didn’t think much of it initially, as uncircumcised men do just itch every now and again. Then I discovered a painful lump on the head of my penis, and the smelly, rusty brown discharge started.

Most men can be sensitive about their penises and, for me, I needed to sort this out immediately.

I’d Always Considered Myself a Winner in the Great Lottery of Life

I grew up a 6’6” rugby playing, charming, brilliant, (and modest, naturally) force of nature. Spending my formative years in a post-industrial English port town, opportunities were plentiful.

I’d previously had a couple of little issues that needed to be resolved. My testicles swelled up like a balloon once with a mystery infection. The phimosis (a condition in which the foreskin can't be pulled back from around the tip of the penis) came and went, too, but it never caused me any trouble. I’d been thinking of getting a circumcision for a while, just to tidy things up. But, I never thought anything about it though.

Over the next few days, my foreskin thickened, and I could feel a dull ache in the right side of my groin.I was beginning to get quite concerned. So, I went to my general practitioner (GP).

After a cursory check, he made up his mind quickly. I was misdiagnosed with balanitis (inflammation of the foreskin and head of the penis) and sent away with some creams that I couldn’t use. A week or so went by and nothing changed so I went back.

My lump was bigger, my skin was thicker and the marble-sized lump in my groin had started to show. I asked for a referral but was sent to the sexual health clinic instead. More negative tests and another two weeks went by, and my GP was out of ideas. So, I booked a private consultation.

It Took the Doctor About 10 Seconds to Say “You Have Cancer”

It felt as though a huge hole in the ground had opened, and I was being dragged into the abyss. The doctor was talking, but I was somewhere else. I walked out with another referral, staggered through the hospital and sat in the car.

All my emotions arrived at once and I broke down. An hour went by before I called my wife to tell her the news. Talking brought clarity, and my gallows humor lifted the mood.

I pulled myself together and made an appointment with Nick Watkin of St. George’s Hospital in London, a leading urological surgeon and expert in penile cancer. He quickly restored my faith in health care in the United Kingdom, walked me through the plan, and I was under the knife just two days later.

It Was at This Point That I Knew I Needed to Share My Story

I wanted to take control and stop any guessing or gossip from family and friends. I had told the people close to me everything I knew whether they wanted it or not. It was just easier that way. So, I started posting on Facebook to keep everyone up to speed.

By the time I went under the knife, the tumor on my penis was like a thick juicy earthworm, and the one in my groin had grown to three inches across. The surgery to remove them took around three and a half hours and left me with a circumcision, fewer lymph nodes, a drain bottle and plenty of stories.

By the time I had surgery to remove more nodes on the other side of my groin and pelvis, it was confirmed that I had stage 3, grade 3 cancer. So, in the height of the COVID-19 pandemic, I was sent to The Royal Marsden Hospital (a specialist cancer treatment facility) for chemotherapy and radiotherapy treatment to the groin.

Treatment Hasn’t Been Without Complications Though

I was hospitalized in January 2020 after a drain became infected. I’ve had to manage stage 2 lymphedema in my legs. I’ve had moist skin desquamation (skin peeling) from the radiotherapy, and my skin has changed color. At one point, my testicles were the size of an outstretched hand and my penis was buried in a mass of skin, like a bashful Jabba the Hutt.

It’s now January 2021, and they haven’t found any new disease for a year. I’ve started running again, and I’m determined to get as fit and strong as I was in 2019. I’ve been given a second chance at life, so I’m taking on new challenges to see how far I can go.

My Facebook posts started to get popular, even with people I hadn’t spoken to or seen since school. Everyone wanted to tune in for the latest! So, I started to share my experiences with whoever wanted to read them. Since then, I’ve evolved my blog into a source for all things penile cancer, getting fit again, as well as the story that got everyone hooked, of course.

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