Around 700 men each year in the UK are diagnosed with penile cancer, and undergo a partial or total penectomy, where their penis is removed. Craig Mycock, 54, a former bus driver and inspector, who lives with his partner Colette, 55, in Stockport, tells his story.
At the start of 2020, I went to see my GP about trouble emptying my bladder, and she referred me to hospital for more checks.
A specialist nurse who examined my bladder [using a thin tube with a camera attached] commented on a pea-sized ‘freckle’ on the head of my penis.
I told her that it had been there for about six months and wasn’t painful or causing any issues, but she seemed concerned and called in a doctor to get a second opinion.
She was concerned too, and referred me for further investigations. (My bladder problem was unrelated.)
Craig, a former bus driver and inspector, is telling his story to warn other men about the signs of penile cancer
Two weeks later I was at The Christie hospital in Manchester, where a consultant urologist explained that it could be a sign of penile cancer. Just hearing this was very mortifying and worrying.
I had a biopsy — they injected local anaesthetic into the tip of my penis and took a small sample of tissue for analysis. The procedure took about 20 minutes and was as awful as it sounds.
Two weeks later I went back for the results. I was told it was an aggressive, fast-growing cancer and they’d need to remove part of my penis — leaving enough so it could be rebuilt using tissue from my thigh.
I was absolutely stunned by this awful news. I remember sitting in my car on my own after the appointment trying to take it all in. I cried; it seemed so overwhelming.
When I went back to hospital to have the surgery in March, a month after the biopsy, the cancer seemed to have spread — the whole tip of my penis had become scabby and slightly misshapen. Deep down I had worried it had spread.
Because the cancer was so aggressive, it was decided that Craig’s whole penis would need to be removed. Radiotherapy or chemotherapy would not be effective against it
It meant the planned operation was cancelled and I had a second biopsy instead — this showed the cancer had spread inside the shaft but luckily it had not affected the lymph nodes in my groin.
Because the cancer was so aggressive, it was decided that my whole penis would need to be removed. Radiotherapy or chemotherapy would not be effective against it.
I was devastated: it’s every man’s worst nightmare; just the thought of a surgeon cutting into my penis made me want to squirm, and I felt queasy even thinking about it.
I felt ashamed; I blamed myself, although I’d done nothing to cause it, my consultant said, sadly it was one of those things in life that can happen to anyone.
But I was in a dark place, asking myself a million and one questions about why it had happened to me.
Craig says if his story can help one other man to avoid what he has gone through, he’d be absolutely delighted
I was terrified about having the operation as it would change everything, from peeing like most men, to ending a sexual relationship with Colette, my partner of 33 years.
I felt it would make me less masculine. But Colette would always reassure me; she told me she still loved me whatever.
On the day of my operation in May 2020, mid-lockdown, I had to go to hospital on my own. I was dreading what it would be like ‘down there’ when I woke up. All of my penis was going to be removed, but my testicles would remain intact [these produce testosterone, and if they’re removed, the patient has to go on hormone replacement therapy: they are only removed if the cancer has spread].
Afterwards, I woke up with a flexible tube inserted into the area where my penis had been, with a tap on the end, which I could open to pee. It was humiliating and I hated using it, as it was a constant reminder of what had happened to me.
Otherwise, the area just felt numb. But I felt incomplete, as if they had removed my masculinity. In fact, from that moment, I don’t interact with that part of my body.
I keep the area clean and wash it, but I don’t look at it or feel around that area; I really can’t bear to look at it, even in a mirror. I’m just scared.
Thankfully they managed to remove the tumour and there were no signs it had spread.
I was able to go home after two days and, about two weeks later, the tube was removed [he now passes urine by sitting down on the loo to urinate via an opening between the anus and testicles], but I suffered a bad urinary infection and needed intravenous antibiotics in hospital.
While back in hospital recovering from this infection, my doctor asked if she could bring student doctors in to see me, as a penectomy is so rare. It made me feel a bit like a circus freak, but I understood why it was useful for them to see.
Covid was still affecting everything, so I self-isolated: I became very depressed — by that August, I was in a really bad place and tried to end my life with an overdose.
Luckily, Colette came home in time and called an ambulance.
A lot of my feelings at the time were mixed with pain, but also a sense of shame in having this particular cancer. I was later diagnosed with post-traumatic stress disorder (PTSD).
I had one-to-one sessions with a mental health nurse and later group sessions with other cancer patients at The Christie, where we all shared our different experiences of the disease.
Although I have never met another person with penile cancer, we could share common ways which helped us to cope.
Though in some ways I wish I’d had lung cancer as people always know someone who’s had that: penile cancer is so isolating as it’s so rare.
While I have learnt to adapt, I am no longer like a normal man any more.
Four years on, I still go to the bathroom to undress so Colette doesn’t see me naked — even though she says she’s not bothered by it and she loves me for who I am.
We can no longer have intimate relations at all, which is hard, but I just have had to accept that it’s not part of my life any more.
I have six monthly checks where my testicles and lymph nodes are scanned to check the cancer hasn’t come back.
I still suffer with frequent urinary infections, which require antibiotics, and also have ongoing nerve pain around where my penis was, so I need to take pain relief day and night (paracetamol or co-codamol and other medication to dampen the nerve messages being sent to my brain).
I have good and bad days — I try to see the funny side: I was told my penis was flown somewhere for medical research and my joke is that’s clocked up more air miles than I have!
Sadly it’s still the case that men are embarrassed to ask a doctor to look at a spot or mark, especially when it’s ‘down there’ – I’d love to see men talk more openly about this and not feel ashamed to see their doctor if they are worried about their penis. Even if my story can help one other man to avoid what I have gone through, I’d be absolutely delighted.
