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'I Had Let It Go Too Far ... But I Had Zero Pain': We Need To Talk About Penile Cancer
It took a knee injury while running the Dublin City Marathon in 2019 to get Cormac France to his GP about an issue with his penis.
He used the knee as a "cover up", he says, out of embarrassment when making the appointment over the phone. But once in the consultation room, "I said, 'now doctor, can I tell you the real reason I'm here, I need to show you something'…"
For many months the father of four had been aware of a "horrible smell" from his nether regions, but had put it down to his tendency after a run to change his sweat-soaked tops as soon as he returned to his home in Leixlip, Co Kildare, but to leave the lower clothes on. He thought this had caused the drying out of skin, but then it got so bad, his penis split, "like lightning hitting the tree", he says. "I had let it go too far, obviously."
However, "I had zero pain," he stresses, so he was not overly worried. In hindsight, he recalls how he was feeling the cold and fatigue for at least a year previously, but it was the knee that was the main problem, after he had taken over an injured friend's number to run in the marathon.
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When his GP, Dr Louise Boyd, examined him, he pressed her for an opinion on what the problem might be. She told him gently that she suspected it was cancer. Such a diagnosis had not entered his head because he had never heard of penile cancer. The very next morning he was called into St James's Hospital in Dublin, where a urologist referred him to penile cancer specialist Mr Ivor Cullen, a consultant urologist who was working in Waterford University Hospital at the time.
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Ivor Cullen: 'Penile cancer is, in the large part, a preventable cancer'With the cancer having spread to his lymph nodes, "I was almost at the point of no return," says France, now aged 57 and who works with Eir. He was told if he had put off that GP visit until after Christmas 2019, as he was tempted to do, he probably would not have lived to see the following March.
No part of the body is immune to cancer, but the penile kind is rare. It usually affects men over the age of 50, but can occur in younger men. Treatment may necessitate partial or total amputation and reconstruction.
Over the years in Ireland, various surgeons have treated occasional patients with penile cancer "and the results were probably not very good", says Cullen. Research has shown that by centralising the care of rare cancers in one place, expertise can be concentrated there, leading to better outcomes for patients.
Three years ago, a national penile cancer centre, led by Cullen, was established in Beaumont Hospital in Dublin, under the HSE's National Cancer Control Programme (NCCP). It has seen a high success rate in phallus preservation, according to the HSE, "demonstrating the importance of early detection and specialised care for better survival rates and quality of life".
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"When we started," says Cullen, "they thought that I was going to be doing about 30 or 40 [cases] per year, but in fact, in the last couple of years, we've had more than 60 new cases of penile cancer per year" – more than one a week. To put that in context, about 43,000 people in Ireland develop cancer of some kind each year.
Now the NCCP has produced the first patient guide to the condition, Penile Cancer: What I need to know. It offers answers to all those questions most men and their families would be afraid to ask.
"Unlike breast cancer or melanoma or things like that, people are very reluctant to discuss penis cancer; it is a very sensitive subject for men," says Cullen, who did 18 months of specialist training in London's University College Hospital, an international centre of expertise in the management of penile cancer. This booklet is really helpful for patients "because it's quite a stigmatised cancer" and not easy to disclose to friends.
"We must remember as well that penile cancer is, in the large part, a preventable cancer," he says. One of the main causes are poor penile hygiene with phimosis, ie a tight foreskin, which prevents regular retraction and cleaning of the penis. "That leads to inflammation and it's this chronic inflammatory process that can become cancerous."
Circumcision at birth removes the risk of this type of cancer, he explains, "but that does not suggest for a second that I would advocate circumcision for all males". Rather he would like to see a stronger public health message about the cleaning and proper management of the foreskin, particularly for children and adolescents so they know what good hygiene is for this part of the body going into adulthood.
If a man gets diagnosed with lung cancer, he can nearly go down to the pub and say, 'look, lads, I have lung cancer,' whereas this isn't as open. People don't want to even mention the word penis, it's such a taboo
— Penile cancer nurse specialist, Alison DornanAnother cause of at least half the cases is the human papillomavirus (HPV), which is also linked to cervical, anal, head and neck cancers. In 2019 the HPV vaccination programme for girls in first year of secondary school was extended to boys so, in time, that should have a positive impact on penile cancer rates. But, currently, the Beaumont service is seeing predominantly older men, often from lower socioeconomic backgrounds, who have not been engaged with healthcare services.
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"There's a real stigma about attending your family doctor with a lesion or growth in your penis," says Cullen. As a result, cases tend to be very advanced by the time help is sought; the cancer has often spread and survival rates are poor. Whereas early forms of penile cancer can be treated with topical creams.
Some years ago patients would often have had their penis amputated, but "nowadays for most patients that will not be necessary. We can get away with removing part of the penis and a lot of times there are reconstructive surgeries that will use skin grafts and skin flaps to maintain as much of the form and function of the penis as possible."
About two-thirds of new cases being seen at Beaumont are suitable for phallus preservation or reconstructive surgeries, he says, "so that peeing and voiding is satisfactorily maintained, there are no tubes involved, and sexual activity and an intimate life is absolutely possible".
Alison Dornan, who has been nurse specialist for penile cancer at Beaumont since May 2023, is a vital communication channel for patients and their families, offering both practical and psychological support from the moment they are diagnosed.
Alison Dornan: 'Any man who has any issues with their penis or any wound that hasn't healed within four weeks, they need to get it seen to'"I usually bring them into the family room just to do a debrief, explain any of the terms that they weren't too sure about, and then I usually give the patients written information as well about the diagnosis."
As time with a consultant is always limited, pre-surgery she can go through what to expect. Then after surgery she will go up on the ward to review the wounds and, if necessary, educate them and a family member on managing a urinary catheter or drain on discharge. She can organise referrals to psychology services and cancer supports. At Beaumont they are also hoping to set up a peer support group of penile cancer survivors.
"If a man gets diagnosed with lung cancer, he can nearly go down to the pub and say, 'look, lads, I have lung cancer', whereas this isn't as open," says Dornan. "People don't want to even mention the word penis, it's such a taboo."
Much greater awareness is needed, to break that silence. "Any man who has any issues with their penis or any wound that hasn't healed within four weeks, they need to get it seen to," she advises. Instead they have men coming in saying "I've had that there for two years, never got it sorted, and now I can't pee so I've come to you." That's when we run into problems, she says, recalling one patient in his 30s who could be offered only palliative care after diagnosis.
"It's just devastating that he left it so long," says Dornan, who has 183 men on her books. The need for awareness raising extends to health professionals, as GPs will see few if any cases during their careers and the first point of referral is often a dermatologist when it appears to be a skin condition.
Cormac France's daughter Nicole is running a half-marathon next February in Barcelona, where she lives, to raise awareness of penile cancer over there. Photograph: Alan BetsonCormac France is very grateful that his GP recognised it as cancer straight away and for the speed and expertise of subsequent treatment. He needed a partial amputation and then all the lymph nodes in his groin area had to be removed. Cullen, he says, did a "brilliant job" in the penile reconstruction and he often reflects on "how lucky I was in my unluckiness, with the people I met".
Having passed the five-year survival point in recent weeks, how is he now? "I'm certainly a huge amount better than what I was, but I'm not the same person I was. Psychologically [and] physically it has taken a huge toll on me. But I am very thankful to be still here.
"As Mr Cullen said to me, when you're so fit, it doesn't stop you getting sick, but it sure helps you in your recovery."
His marathon running days may be over, at least for now, but his daughter Nicole is running a half-marathon next February in Barcelona, where she lives, to raise awareness of penile cancer over there. It was lack of knowledge about the condition that led her father to delay seeking treatment and he is determined as a survivor to tell as many people as possible about it.
"I don't want anybody to go through what I went through," he adds.
Symptoms of penile cancerSource: Penile Cancer: What I need to know. Published by the National Cancer Control Programme
Penis Cancer Cases Increasing: Brazil Sees 6,500 Amputations In A Decade
In 2018, Brazilian pensioner João sought medical help after he found a wart on his penis.
"I started visiting medical clinics to find out what it was, but all the doctors told me it was due to excess skin and prescribed medication," the 63-year-old recalls.
Despite the medication, the wart continued to grow. It started to take a toll on his marriage and João and his wife's sex life declined. "We were like siblings," he admits. He was determined to find out what was going on.
For five years João, not his real name, went back and forth to specialists who prescribed more medication and ordered new biopsies. "Nothing solved it," he says.
Then, in 2023, he was given a diagnosis - João had penile cancer.
"For my family, it was a very unpleasant surprise, even more so because I had to have part of the penis amputated. I feel like I was decapitated," he says.
"It's a type of cancer that you can't talk about with people because it could turn into a joke."
Penile cancer is rare, but incidences and mortality rates are on the rise around the world.
According to the latest studies, Brazil, where João is from, has one of the highest incidence rates of 2.1 per 100,000 men.
Between 2012 and 2022, there were 21,000 reported cases, according to Brazil's Ministry of Health. This resulted in more than 4,000 deaths and, over the past decade, there have been more than 6,500 amputations - averaging two each day.
Maranhão, the poorest state in Brazil, was found to have the highest incidence rate globally at 6.1 per 100,000 men.
Symptoms of penile cancer often start with a sore on the penis that does not heal and a strong-smelling discharge. Some people get bleeding and colour changes of the penis, too.
When detected early, there is a high chance of recovery through treatments such as the surgical removal of the lesion, radiotherapy and chemotherapy.
But if left untreated, partial or total amputation of the penis, and possibly other nearby genital organs such as the testicles, may become necessary.
João underwent a partial amputation in January and says it was a difficult time.
"It's something you never imagine will happen to you, and when it does, you can't just go around telling people," he says.
"I was terrified of surgery, but there was no other alternative. The feeling in the first weeks after the surgery was one of sadness, I can't deny it. Not having part of your penis is horrible."
Some patients undergo a total amputation which is life-changing.
Thiago Camelo Mourão from the Department of Urology at AC Camargo Cancer Center in São Paulo says: "In the case of partial amputation, urine continues to exit through the penis.
"However, in total amputation, the urethral orifice can be relocated to the perineum, between the scrotum and the anus, requiring the patient to urinate while sitting on the toilet."
Mauricio Dener Cordeiro of the Brazilian Society of Urology says personal hygiene is important
Mauricio Dener Cordeiro of the Brazilian Society of Urology says the persistent infection of human papillomavirus (HPV), a name given to a common group of viruses, is "one of the main risk factors". HPV can be transmitted during sex and in some cases, it can lead to cancers including in the mouth and penis.
He says: "Mass vaccination against HPV is essential due to its high effectiveness in preventing related lesions," but he adds that vaccination rates in Brazil are below the level needed to be truly effective.
"In Brazil, despite the availability of the vaccine, the HPV vaccination rate remains low for girls - reaching only 57% - and for boys, it doesn't exceed 40%," he says. "The ideal coverage to prevent the disease is 90%."
He believes misinformation about the vaccine, unfounded doubts about its effectiveness and a lack of vaccination campaigns have contributed to the low take-up.
According to the UK's National Health Service (NHS) website, smoking can increase the risk of getting penile cancer, too. It also says you might be more likely to get penile cancer if you "have problems pulling back your foreskin (the skin covering your penis) to keep your penis clean (a condition called phimosis)".
"When a man does not expose the glans and fails to clean the foreskin properly, it produces a secretion that accumulates," Dr Cordeiro says. "This creates a highly favourable environment for bacterial infections.
"If this occurs repeatedly, it becomes a risk factor for the appearance of the tumour."
Mass vaccination against HPV is essential to prevent penile cancer, experts say
But Brazil is not the only place where penile cancer is on the rise. According to the latest research, the number of cases is increasing around the world.
In 2022, the journal JMIR Public Health and Surveillance published the results of a large-scale analysis involving the latest data from 43 countries.
It found the highest incidence of penile cancer between 2008 and 2012 was in Uganda (2.2 per 100,000), followed by Brazil (2.1 per 100,000) and Thailand (1.4 per 100,000). The lowest was in Kuwait (0.1 per 100,000).
"Although developing countries still bear the higher incidence and mortality of penile cancer, the incidence is on the rise in most European countries," the team of researchers led by Leiwen Fu and Tian Tian from Sun Yat-Sen University in China found.
They reported that England had seen an increase in penile cancer, rising from 1.1 to 1.3 per 100,000 between 1979 and 2009 and in Germany cases increased by 50% from 1.2 to 1.8 per 100,000 between 1961 and 2012.
These figures are only set to get higher, according to the Global Cancer Registries prediction tool. It estimates that by 2050, the global incidence of penile cancer will rise by more than 77%.
This change can largely be attributed to the ageing population, according to the experts, who say the highest incidence occurred in men in their 60s.
Dr Cordeiro says: "Penile cancer is a rare disease but also highly preventable".
He advised that using condoms during sex and undergoing surgery to remove the foreskin in cases of phimosis could help reduce the risk of penile cancer.
Neil Barber, Clinical Lead for Urology at Frimley Health NHS Foundation Trust, adds: "Penile cancer is almost unheard of in the circumcised population. Poor hygiene and infections beneath the foreskin, as well as conditions like phimosis that make it difficult to retract the foreskin and maintain good hygiene, are risk factors. This is linked to higher overall infection risks".
"Established risk factors also include unprotected sex, specifically not using condoms, with poor hygiene further increasing risks through this route."
João is currently waiting for his latest test results, which he will receive later this year. "I'm confident that these exams will show that I'll be cured," he says.
"Now, following the amputation, the pain has gone away, and I've been feeling much better. But I'll have to live with a partially amputated penis for the rest of my days."
According to Cancer Research UK, more than 90% of men diagnosed with penile cancer which has not spread to nearby lymph nodes survive for five years or more.
Additional reporting by Rone Carvalho, BBC Brasil
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