You never see it coming - Jon's story

Jon had barely heard of penile cancer before his diagnosis at 40. To help raise awareness and share his experiences, he started sharing his story across social media to keep his family and friends up-to-date. This led to the knob blog, where Jon continues to talk about his experiences of diagnosis, treatment and side effects. In today’s Community News blog, Jon reflects on his experience with penile cancer, and how humour and his blog have helped along the way.

*Early disclaimer: My blog posts might be sweary, and can be extremely graphic. I will often make light of what is an incredibly serious subject too. You have been warned!*

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, bJon and his two childrenut 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 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 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.

If you’ve been affected by penile cancer, why not join the penile cancer group on the Community and reach out to others who may be going through something similar. You can also read more about penile cancer on our information pages on the Macmillan website. Want to hear more from Jon? Why not let us know in the comments section below.

Anonymous
  • Thank you I truly mean it I have so much Cancer in my family I expected it but Breast cancer or That sort of thing , but I got thrown when my Eldest daughter said Put your bra straight I am disabled for a while unable to fit a bra on as I could not get front zip one to work having left the other half after 40 years I had no 24/7 carer looking back now he was the one who should have noticed 3 inch longer one than other , but no I went to Oncologist pretty certain what I had was Lymp gland cancer they call it Non Hodkins Lymphoma no cure Treatment at some point but so far just Watch & Wait it’s only time I wish I was American they get treatment stage 2 I can not afford private wish I could I’m permanently exhausted & sweat a river most nights & days , But I’m glad you got help sounds painful , Glad it all is back in working order Thank you for the humour I needed it tonight.

  • Thank you, it is great to read your story. You have been through a lot, it’s good to hear that although it is life changing it is possible to adapt and accommodate.
    I have had the early op to remove the top of my penis, I really had no idea that could happen you couldn’t make it up!,i’m going back to uclh for lymph biopsy next. I shall read your blog and compare notes and look for tips. Like you I have developed a dark sense of humour that reminds me of being at school, I also seem to have lost a few inhibitions and developed penile Tourette’s. Good luck with your fitness regime.