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Silent killer; Cancer of the penis is the last medical taboo - with most sufferers too ashamed to talk about their condition. But in this shocking report, one man breaks his silence to tell how he beat one of the rarest of diseases, and to offer hope to others.

Byline: HILARY FREEMAN

WHEN artist John D Edwards spent four weeks in the cancer ward at Barts Hospital in London, he was shunned by the other patients.

"Nobody would talk to me or even look me in the eye," he recalls. "Everybody had breakfast together at one table. There were people there with terrible cancers - breast, lung, ear - and people with horrible disfigurements. Yet, every time I came in the table went silent. As I walked through the ward I could hear people whispering about me."

John, now 50, did not have an infectious disease. His only "crime" was to suffer from a cancer considered so terrible that even other cancer sufferers dare not say its name: penile cancer - or cancer of the penis.

Penile cancer is the last taboo. It is rarely written or spoken of, even in medical circles. Although it affects one in 10,000 men in the UK, many people don't even know it exists. And many men have their penises amputated or die because of this ignorance.

It takes courage to break such a taboo. But it is the same brave, positive spirit which helped John overcome penile cancer that allows him to talk openly about it now.

"If my story makes just one man go to the doctor in time to save his life, it will be worth telling it," he says.

John is a renowned artist, whose paintings fetch up to pounds 17,000 and have been displayed in galleries worldwide.

Eric Clapton has bought John's pictures. His studio, in a converted biscuit factory in East London, is lined with his canvases, brightly-coloured oil paintings depicting symbolic birds, apples and fish.

One painting in particular reflects his battle with cancer. It shows a figure in a hospital bed, watched over by a little bird.

It was Christmas 1996 and John was settling back into single life after an unhappy divorce. One evening, in the bath, he noticed a strange lump in his groin.

"I felt a sickness in the pit of my stomach and my instinct told me something was seriously wrong," he says. "I examined myself more closely and discovered a tiny lesion on my foreskin. "It didn't hurt but it looked odd. My foreskin had felt tight for some months and was hard to draw back. I knew I had to go to my GP the very next day."

John's doctor referred him to a consultant at nearby Whitechapel Hospital. A biopsy revealed that the lump in his groin was a secondary cancer in the lymph nodes.

"They didn't know where the first cancer was," says John. "I kept pointing to the lesion on my foreskin but nobody seemed concerned.

"When the surgeon examined me and found he couldn't pull back my foreskin fully, he suggested I have a circumcision. It was during this operation that they discovered what turned out to be a cancerous tumour on the tip of my penis. It had been covered up by my foreskin. "Following the circumcision, I had two weeks of tests, biopsies, scans and examinations and even suffered the indignity and pain of having cameras inserted into my penis. I got used to being poked and prodded and having students standing around my bed examining my private parts.

"I stopped feeling any embarrassment. But what struck me was that even some of the doctors were uncomfortable talking about my penis. They'd say 'let's take a look at your 'significant member' or your 'John Thomas'."

Had John not gone straight to his doctor, it is unlikely he would be here today. Penile cancer is a silent killer, slow-growing and painless.

According to Vinod Nargund, consultant urological surgeon at Barts, London, many men die because they put off treatment.

He says: "Research shows that between 15 and 50 per cent of patients delay seeking medical attention for more than one year because they're too embarrassed to go to the doctor.

"For men who present early, before the cancer has spread, the prognosis is good - the survival rate is above 80 per cent. If cancer is in the lymph nodes and they are then removed, survival rates are between 20 and 50 per cent. But left untreated, most men die within two years."

John will never forget the moment he was told he had penile cancer.

"It was a terrible shock and I felt sick to my stomach. I went out on the balcony and wept for the rest of the afternoon until I had no tears left. I had never heard of penile cancer, but it sounded awful - the worst thing you could get. I had no idea if it was treatable."

What John didn't yet know was even more shocking - his doctors were considering cutting off his penis. Partial or total amputation of the penis is the most effective treatment for penile cancer and, once cancer has spread, is often the only hope of saving a man's life.

Nobody is certain what exactly causes penile cancer, but it is thought to be related to hygiene and is much less common in men who have been circumcised soon after birth (it's almost unheard of in Jewish men).

Sexually transmitted infections such as the human papilloma virus, which causes penile warts (and contributes to cervical cancer) and the herpes virus, are also implicated.

Mr Nargund says many men diagnosed with penile cancer feel guilt and shame.

"Some men believe it's God's punishment for a past sexual indiscretion or for promiscuity," he explains. "That's on top of the usual feelings of fear and anxiety any cancer diagnosis brings. It can make it even harder for men to talk about and deal with."

John admits he was no saint in his youth, living a bohemian life, drinking, smoking and taking drugs.

"I had suffered from occasional penile warts in the past, which might have led to the cancer," he says. "I didn't feel guilty - I know cancer can affect anyone at any time - but the doctors did infer my past behaviour might have had something to do with it.

"One doctor said it wouldn't have happened if I'd been in a monogamous relationship since the age of 18. The implication was I must have been a naughty boy. It was not a helpful attitude." John's diagnosis came as a wake-up call to change his lifestyle. He gave up smoking and drinking and took up exercise and healthy eating.

"For the first time I started listening to my body. I slept a lot, taking afternoon naps if I needed them. I also looked into alternative medicine, trying herbs and lymphatic massage techniques. Most importantly, I decided to be as positive as I could. I didn't see my penis as diseased - the cancer was part of me, something I had to live with."

Telling friends and family about his diagnosis was hard. "My then partner was fantastic and we continued to be intimate.

"Even though we didn't live together, we had a strong relationship and we accepted the cancer into the relationship, rather than fearing it or denying it. She never made me feel rejected. "My family were supportive but found it difficult to tell anybody what was wrong with me. They'd just say I had 'men's problems' because people didn't want to hear the truth. I had no problem talking about it but nobody else wanted to. It seemed to be OKto have cancer, but not penile cancer. As soon as I admitted what was wrong, shock would pass across their faces and they'd visibly cringe and try to get away, as if I were infectious. They wouldn't know what to say, apart from 'how awful'.

"One afternoon, I was taken home from hospital by taxi. The driver asked what I'd been treated for and I said 'men's cancer'.

'Prostate cancer?' he asked. I said 'no'. 'Testicular cancer, then?' I said 'no'. He pushed me, so I told him it was penile cancer. He exclaimed 'Oh my God!', then remained silent for the rest of the trip. When he dropped me off he refused to take any payment.

"Even in the cancer ward, I was able to stun people into silence. How ever dreadful their own diagnosis, mine was always perceived as worse. One man had a brain tumour, could no longer walk and had been given two months to live. He told me in comparison to me he was lucky - he could never cope with penile cancer.

"Some of the doctors were just as bad. One registrar actually held on to his crotch protectively while we spoke. I think my diagnosis tapped into men's unconscious fears about losing their private parts."

It was a fear John had to confront head-on.

"As soon as my diagnosis was confirmed, the doctors started talking about amputation," he says. "I was adamant I didn't want it. I couldn't think straight when the doctors brought up the subject, I had to get out of the room and be alone. I didn't want to discuss the amputation with my friends or family - I didn't think they could cope.

"I would rather have died than losestanding naked in front of the mirror without a penis, sexless like a male doll. The image was sickening. I felt that I wanted to survive in one piece, intact. I'd never thought much about my penis before - it was just there. All of a sudden it became very important to me and for the first time I examined it closely, touching it and marvelling at it."

Believing amputation was the best chance of saving his life, John's doctors were keen to perform the operation quickly. John insisted on trying radiotherapy first.

"I thought it could work and at the very least would buy me time," he explains. He was admitted to Barts Hospital for a month. A mould was made of his penis and radioactive rays were zapped through it, twice a day, for three days.

"Surprisingly, the treatment was painless, but a few days later the skin on my penis blistered. It was agonising, as if it had been burnt. Within days the blisters peeled off, revealing new skin."

Following this, John had a combination of radiotherapy and chemotherapy to treat his cancerous lymph nodes. A month later, to his delight, it was evident the treatment had worked. He was clear of cancer.

Today, five years on from his diagnosis, John remains clear. He still has regular check-ups and will continue to do so for the rest of his life.

"Dealing with cancer has brought out qualities I never knew I had," he says. "I didn't realise how resilient I was. I now know I can cope with anything."

Mr Nargund says John is lucky. Not only did he beat the cancer, but his penis is in full working order. Some men aren't so fortunate.

Those who leave treatment too late and need their penises amputating have to learn to cope not only with the physical trauma, but the loss of their male identity.

Depression and mental health problems are common and the suicide rate is high.

"Most men are shattered by the loss of their penis," says Mr Nargund. "One patient I treated feels so humiliated because he has to use the toilet sitting down, like a woman, that he won't visit public toilets.

"It's about more than the loss of their sex lives. In society, the penis is a sign of manhood, of prowess and strength. Think of phallic symbols. In ancient times, phalluses were a symbol of wealth and power and the taboo of penile amputation is even spoken of in the Bible.

In Deuteronomy it says 'He that is wounded in the stones or has his private member cut off shall not enter into the congregation of the Lord'.

Men with penile cancer need thorough counselling and support."

While penile cancer remains taboo, that support is hard to find. The only counselling John received was from his doctors.

"I've never met or spoken to anybody else with penile cancer," says John.

"In the radiotherapy department I saw moulds of other men's penises and I'd wonder who they belonged to and what had happened to them. I also heard stories about men who didn't make it. They were like ghostly figures to me.

"It would have been so helpful to talk to somebody else who was going through it, to speak to somebody who'd survived. That's why I'd like to set up a support group, to help other men. (see email address below). I want men to go straight to the doctor as soon as they notice anything is wrong.

"I want them to know you can survive penile cancer, that it's nothing to be ashamed of."

Who does penile cancer affect?

There are 400 new cases of penile cancer in the UK every year. Doctors believe there is a link between hygiene and penile cancer. It's more common in men aged 50-70 but can sometimes affect younger men. One study showed 22 per cent of patients were younger than 40 and seven per cent younger than 30.

In the Far East, penile cancer is far more common, affecting up to one in five men.

Symptoms: Men should check for:

-Any new, painless red or white marks on the penis.

-A hard patch on the penis or foreskin. Also look out for itchy lesions, or lesions which crust or bleed.

-Inability to retract the foreskin or tightness of the foreskin.

-Blood in the urine or a foul smell.

-Penile cancer is usually painless, which is why it often goes undiagnosed.

How to prevent penile cancer: -Examine your foreskin and penis regularly.

-Practise good hygiene. Fully retract the foreskin when washing yourself daily.

-If your foreskin becomes tight, see your doctor immediately.

-Circumcision can prevent the growth of penile cancer.

-Get penile warts or herpes infection treated immediately.

-Practise safe sex. Using a condom protects against sexually transmitted diseases such as the hpv and herpes viruses.

Treatments: Often a combination of the following treatments are offered:

-Circumcision: Performed on most men with penile cancer. Can be a 100 per cent cure for a very small tumour which has not spread.

-Radiotherapy: high energy rays shrink or destroy cancer cells.

-Brachytherapy: radioactive seeds are inserted into the penis or a radioactive mould is placed over the penis.

-Partial amputation: A small stump remains. The patient may still be able to have an erection and is able to urinate standing up. But often they are so deeply traumatised, they are unable to achieve an erection.

-Total amputation: When cancer has spread deep into the penile tissue, the entire penis must be removed. Sometimes the scrotum is also removed.

- Penile reconstruction: This is still experimental and not very successful. Skin and muscle are taken from the arm to create a new penis.

For more information call:

-CancerBACUP's Cancer Support Service on: 020 7613 2121 or freephone 0808 800 1234 to speak to a cancer specialist nurse. Lines are open Monday to Friday 9am-7pm.

-Cancer Research UK: Speak to an Information Nurse are on 020 7269 3142

-Contact John D. Edwards by writing to him at: johndedwards@hotmail.com

CAPTION(S):

ART REFLECTS LIFE: John Edwards pictured with his painting that illustrates the battle he had with penile cancer. It shows a figure in a hospital bed, watched over by a little bird; Picture: JOHN FERGUSON
COPYRIGHT 2002 MGN LTD
No portion of this article can be reproduced without the express written permission from the copyright holder.
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Title Annotation:M Health
Publication:The Mirror (London, England)
Date:Aug 8, 2002
Words:2566
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