'Penile cancer a taboo? I'm just glad to be alive'

There's not a hint of a flush to his cheeks, nor any trace of a stutter in his speech. As Tim Fletcher talks about his treatment for penile cancer, he could be discussing something as routine as the weather, or a TV programme he watched last night. While thousands of men shy away from visiting the doctor about potentially dangerous ailments – whether to do with their nether regions or not – he is a man happy to talk about such a sensitive topic, so as to try to make a difference.

Having undergone a partial penectomy, Tim wants to raise awareness of penile cancer and the implications it can have. He wants to encourage self-examination and get people talking about things that might once have been considered taboo. He admits this isn't an entirely selfless act.

The 42-year-old, who says he can "talk for England", believes he wouldn't have made it through his ordeal if he hadn't been open and honest about it. As it is, Tim says his 15-year marriage to Kathryn is stronger than ever, and he's living life to the full as he begins on the long path of reconstructive surgery.

Tim's story began in mid-2005 when he noticed a lump on his penis that became painful. He initially underwent a circumcision at the Royal Hallamshire Hospital in his home city of Sheffield, but as soon as he had come round from the procedure doctors were suggesting it could be cancer. "It was certainly a shock," Tim recalls. "But I was glad it came about like that – rather than going round the houses with people saying 'It could be this' or 'It could be that'."

Over the next few weeks the lump – and the associated pain – grew, and a biopsy at St James's Hospital in Leeds confirmed the initial fears. The news made him one of the 400 or so men diagnosed with the disease each year in the UK. His was an even rarer case. Penile cancer normally strikes in men over 60, but Tim was just 38.

An excision biopsy – where the whole lesion is removed – was the next step. It took place at the same hospital, considered a centre of excellence for penile cancer. "They'd removed everything you could see externally, but they weren't sure what was underneath," Tim explains.

"Unfortunately it went from bad to worse. I've never known pain like it. I had to go into hospital for intravenous antibiotics twice, for various infections." His physical condition by the time he went back to the hospital a few weeks later, coupled with chats he'd had with his GP about the possibility of surgery, meant he wasn't surprised when the specialist broke the news that an amputation was required. "He took one look and I knew what he was going to say," Tim says. "It was devastating – that's the only word I can put on it."

The procedure – a partial penectomy – went well. Medics had got to the cancer in time for the base of the penis to be saved, meaning no internal surgery was necessary. But there were still numerous issues to deal with, not least the psychological effect of something so traumatic.

"As they removed the dressing after the procedure for me to see, I felt something beyond apprehension. I really didn't know what to expect," he says. "It was a strange feeling – there were all the emotions about the operation, but also those hopes that it meant the cancer was gone."

Now, four years on, Tim's check-ups have been reduced from every three months to once a year. He has started reconstructive surgery, with hopes of putting right the life-changing implications of the penectomy. A "normal" trip to the loo is high on the wish list, along with a return to intimate relations with Kathryn.

"I just want to be able to stand up and have a pee!" he laughs. "We have to dictate where we go out for a drink these days on whether they've got nice toilets." This is the one area where he confesses to some social discomfort. "I usually go into the toilet cubicle, because it's not like in the past, when you might have a bit of chat with someone whilst you're at the urinal. If they glance down and see there's nothing there, it does feel a bit awkward."

The other area, which unfortunately cannot be solved by simply closing a door behind him, is his sexual relations with Kathryn. "It has stripped the intimacy from our marriage," Tim admits. "We've dealt with it on a day-to-day basis. "After I'd been discharged from hospital, we went to the hotel where we were staying. I was in the shower, and Kath said she wanted to see. I showed her, and that was that. They offered us a psychosexual counsellor but we weren't interested. We've just felt our own way along.

"I do feel frustrated about it sometimes, but I don't get angry. This was just my card in life. And I think as a couple we have come out the other side stronger."

Tim may have operated a policy of honesty and openness right from the start, but with that has come the reactions of friends, relatives, colleagues and clients on sharing the news. The scrap-metal dealer says: "When you first tell people you've had penile cancer and undergone a penectomy there's always a pregnant pause while they process what you've said. With some of the lads there's the exclamations of 'Oooh!' and the crossing of legs – especially at work, in that male environment.

"But from day one, since I was diagnosed, I have talked about it – and I can talk for England. I think that has certainly helped me. If you become introverted, I think it starts to affect everyone. People who've gone down that road have ended up with their marriage in pieces, and mentally in bits.

"I can fully appreciate people would be self-conscious about it," he adds. "But by hiding things away and making excuses you're getting negative and allowing those feelings to fester. Everyone is different, but I think communication is key."

Tim is also keen to talk about his ongoing journey through reconstructive surgery. He has opted for a three-stage process which, although longer than the alternative, should bring more realistic results. The first phase involves preparing a chunk of flesh from his forearm for transplantation. There is also the option of taking it from the thigh, but Hamish Laing, from the British Association of Plastic, Reconstructive and Aesthetic Surgeons, says the arm is "far superior" for making the reconstruction as life-like as possible.

The idea is to create a new urethra that can be connected to the original to allow the patient to go to the toilet as normal. A strip of skin down the length of the arm is "sewn to itself" to form a tube. The surrounding skin is then sewn over the tube to bury it in the arm. Over the next three months the patient keeps the area open and clean by irrigating the tube through a catheter twice a day.

Tim is nearing the end of this process. The main operation will involve transplanting the tube and surrounding flesh onto the remaining base of the penis. Most of the forearm skin is taken – Tim has been told the area will be left looking like he has been "bitten by a shark" – and shaped around the tube to form the new penis. The transplanted flesh includes the underlying blood vessels and nerves, which are then connected to the stump – or onto the groin for patients who have had a full penectomy – so that circulation can continue. The original urethra is attached to the skin tube, creating a waterproof passage which allows the patient to go to the toilet. And a simple skin graft is taken from the thigh to cover the exposed wound on the forearm.

Then there will be yet more waiting – this time to see whether the nerves will grow into the new penis. Care must be taken not to lie on it, as crushing can cause this to fail. The aim is for sensation in the area, though Mr Laing warns that may take several months. If and when it is achieved, the patient is referred back to the urology department for the insertion of a penile implant. This is placed within the tube, along with a fluid reservoir in the scrotum. The patient can then effect an erection using a pump in the scrotum, which has to be deflated after intercourse.

Such reconstructive surgery is not a common procedure. Only Tim and perhaps one other patient will go through it in Leeds this year, and it is generally only offered to younger patients, whether victims of penile cancer like Tim, or those with skin cancer, or men who have been forced to undergo a penectomy because of trauma inflicted in a car crash, for example.

Mr Laing, a consultant plastic surgeon, says a wide, multi-disciplinary team, also involving urologists, oncologists, pathologists and radiologists, is capable of bringing life-changing results. The aim is "to ensure that, as much as possible, the form and function for the patient is restored," he says. "The ambition is to provide a functional reconstruction that allows the patient to pass urine normally and have sexual intercourse, albeit after inflating the implant. This surgery is an integral part of the patient's recovery and is similar to the psychological improvement seen in women after breast reconstruction surgery."

Tim says he is excited about the possibilities the surgery holds, although the decision to go forward with it had not been straightforward. "I feel more emotional about the reconstruction side of things than I did about the amputation," he says. "The realisations and implications of it have been quite a lot to get my head around. I declined surgery at first, then agreed, then decided against it again. I was worried about the invasiveness, and the impact it might have on Kath. But after a really in-depth chat with one of the nurses, where we went through a lot of different issues, my fears were allayed and I decided to go ahead with it."

The whole process is likely to take about another three years, and Tim said he is indebted to his wife, family and friends, as well as the Macmillan Cancer Support charity, which has provided financial help. He received a real boost from what he calls "the kindness of strangers" – in particular colleagues from Kath's work who have rallied round to support them through the ordeal.

"Life is for living," he says. "And I've just tried to carry on as much like normal as I can. Some people will read this and think I am unlucky, but I don't feel like that. I'm currently in the clear from cancer, I've not had to go through chemotherapy or radiotherapy, and I'm looking forward to a new chapter in my life. I haven't let cancer win."

For more information about Penile and other male cancers go to orchid-cancer.org.uk

PENILE CANCER SIGNS AND SYMPTOMS

Around 400 men are diagnosed with penile cancer each year in the UK, compared with the 35,000 cases of prostate cancer. It is more common among men who live in Asia, Africa or South America.

It is rare for men below the age of 40 to get penile cancer, and most cases are in men aged over 60.

Risk factors include: carrying the Human papilloma virus (HPV); smoking; a weakened immune system; circumcision; priapism (painful erections lasting several hours); men who have undergone treatment for psoriasis; and family history.

Symptoms include: a growth or sore on the penis that doesn't heal within four weeks; bleeding; discharge; a rash on the penis; and a change in the colour of the skin on the penis.

Treatment can include radiotherapy, chemotherapy or surgery. Surgery is the main treatment for this type of cancer. Operations can include circumcision; laser surgery and cryotherapy (using liquid nitrogen to freeze and kill the cancer cells); wide local excision (when the cancer is removed along with a border of healthy tissue around it); a glansectomy (removing the head of the penis); partial or total penectomy; and the removal of lymph nodes.