Jonathan Little

It’s been going on for a while now. It always follows the same routine.

Somehow, subconsciously, I just know it’s coming. I start to tense up and my sleep starts to suffer. The sleep I manage to get, I spend grinding my teeth.

When I’m awake, I’m just snapping at people or being irrational. Cancer does that to you. All that broken sleep ages you too. “Oh, you look tired.” “Yeah Karen, I haven’t slept in three weeks.”

It’s not actually ‘the cancer’ though. It’s the fear of it coming back.

I’ve been in remission for a year now, and I’m writing this a day before my next scan. It will be the 8th surveillance scan I’ve had since they last found any new disease.

To read more on how Jonathan Little was blindsided by his

When I was first diagnosed with penile cancer in 2019, it was all a bit of a whirlwind. By the time my staging was complete, I was told that I had stage 3, grade 3 cancer.

It had spread from the primary tumor in my penis to the next set of lymph nodes in my groin. After having nodes removed in my pelvis as a precaution too, I got the incredible news that there was no sign of disease. Or, that as some like to say ... that I was cancer-free.

Next, I went through a few weeks of chemoradiation to give me the best chance that cancer wouldn’t come back. It was tough, but I knew it was worth it.

It’s just great to be me again, while it lasts

The scans and the months go by, and in the gaps between, you grow in confidence. Things get back to normal, and the smile comes back to your face. You’re not a victim anymore.

Then, just as you’re thinking how great the world is, the call comes ... “Hello, your consultant has asked us to contact you about coming in for a scan. How is three weeks, this Thursday?”

Well, it’s terrible. I never want another scan in my life. But you know you have to. You know that speed is everything when it comes to cancer. The earlier you catch it, the better the chances of killing it.

But as soon as that appointment is made, the clock starts ticking. The little arguments start at home, lashing out at the people you love. The silly frustrations at the simplest tasks and being overcome with emotion about the supermarket being out of edamame beans. The dull aches in your sides and the pit of your stomach that mimic a tumor.

What if it’s come back? What if they didn’t find all the microscopic disease? What if the surgery wasn’t radical enough, or if the cancer took a detour and it’s growing further up my body? What happens then? It took less than three months to grow a tumor the size of a tennis ball in my groin. What if it’s in my liver or something? That’s the right side of my body.

Am I being irrational? Of course, I am. But cancer does that. It destroys your belief system, and what you think is normal. Simple logic becomes difficult to handle. Surely, I’d know if it had come back? I only ever ask myself the questions that I know I can’t answer.

The crazy thing is that I’m not scared of the treatment. I’m not bothered about operations, or spending time in a chair getting chemo. I’m not worried about the radiotherapy. The side effects are the worst part, but I can handle those too. I know what to expect.

But it’s the disruption that bothers me. My cancer puts everyone’s lives on hold, and everything has to revolve around me.

I’m supposed to be a parent, and a husband and a leader. People depend on me to be there, to be involved. More than anything, I really want to be there. I want to be me.

That’s why I hate scans, because I know that I’m only ever “I have some bad news”, from taking me away from the best job in the world.

You can read more about Jonathan Little’s cancer journey at

where he writes about treatment, recovery and the toll that cancer can take on mental health.

Articles

A penile cancer survivor recalls how he can become irrational and lash out at his loved ones during the days leading up to his next scans. His wish: To be normal again.

‘Scanxiety’ Can Make Cancer Survivors Irrational and Irritable

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 

 into a source for all things penile cancer, getting fit again, as well as the story that got everyone hooked, of course.

For more news on cancer updates, research and education, don’t forget to

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. 

Jonathan Little

‘Scanxiety’ Can Make Cancer Survivors Irrational and Irritable

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

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