The personal stories below may be of use to anyone affected by penile cancer. Please remember however that many men will not need the type of treatment described and may have less extensive surgery. The stories are also candid and their content includes open, honest and sometimes explicit language.
Richard was diagnosed with penile cancer at the age of 53. Since his treatment Richard has spoken openly about his journey. Having spent his career in alternative theatre he even created a hard hitting theatrical show-DICK.
Richard has travelled around the UK with Orchid delivering awareness sessions to health care professionals helping them understand the impact that treatment for penile cancer can have both physically and psychologically.
In 2019 his story was the subject of a candid and brilliant documentary-Shopping For a New Penis (click the image below).
As a result he was interviewed by Philip Schofield and Holly Willoughby on This morning raising the profile of penile cancer to an unprecedented level.
Jon was diagnosed with stage 3, grade 3 penile cancer in 2019 at the age of 40. Following his treatment he has written openly and honestly about his journey and experience in an online blog.
Cancer is going to affect half of us..
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. Married with 2 children, 2 cats and a comfortable life in the English Home Counties. I was quite fit, wasn’t a smoker or much of a drinker. I just didn’t fit the stereotype of a cancer patient.
By the late summer, I’d developed a bit of an itch. There’s no point in keeping you in suspense any longer, I had an itchy 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.
If you have ever met a man, we’re quite… sensitive about our penises. It’s a bit of a thing we have. If anything goes wrong, it needs to be sorted. 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 and my penis had always done a sterling job for me.
I’d previously had a couple of little issues to resolve. My balls swelled up like a balloon once, with a mystery infection. The phimosis came and went too, but it never caused me any trouble. I’d actually been thinking of getting a circumcision for a while, just to tidy things up. I hadn’t done 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 GP.
After a cursory check, he made up his mind pretty quickly. I was misdiagnosed with balanitis 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 ten seconds to say “you have cancer”…
It felt as though a huge hole in the ground had opened up, 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 humour lifted the mood.
I pulled myself together and made an appointment with Professor Nick Watkin, a leading urological surgeon, and expert in penile cancer. He quickly restored my faith in UK healthcare, walked me through the plan, and I was under the knife just two days later.
It was at this point, I knew I needed to share my story…
I wanted to take control, to stop any guessing or gossip from family and friends. I’d tell 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 tumour 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 3.5 hours and left me with a circumcision, less 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 for chemotherapy, and radiotherapy treatment to the groin.
Treatment hasn’t been without complications though..
I was hospitalised in January 2020 after getting a drain infected. I’ve had to manage stage 2 lymphedema in my legs. I’ve had moist skin desquamation from the radiotherapy, and my skin has changed colour. At one point my balls 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 really popular, even with people I hadn’t spoken to or seen since school. Everyone wanted to tune in for the latest! So I started https://knob.blog 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.
Oh, my cock? Yeah, that’s magic now. We all love a happy ending, after all.
Jons blog can be found here
Wayne lives in Australia and is the founder of the Australian charity Check Your Tackle He was diagnosed with penile in his 40s and has campaigned for greater awareness around the disease ever since. His story can be found here
Wayne is also the co-founder of the largest online support group for penile cancer which is a closed Facebook group. Please click the image below.
If you have a story to tell please contact firstname.lastname@example.org