Penile Cancer: the need for increased awareness and an improvement in support for those affected

There are around 700 cases of penile cancer in the UK each year, and 36,000 worldwide. Chances of survival are around 70% with early diagnosis and treatment but unfortunately, delays in men seeking medical advice and the inexperience of healthcare professionals in recognising potential symptoms often leads to delayed diagnosis and treatment. 

What are the symptoms of penile cancer? 

Cancer can develop anywhere in the penis, but the most usual places are under the foreskin and on the head. The most common symptoms to look out for include: 

• A growth or ulcer on the penis 
• Colour changes 
• Skin thickening 
• Persistent discharge with a foul odour underneath the foreskin
• Blood coming from the tip of the penis or under the foreskin 
• Unexplained pain in the shaft or tip of the penis 
• Irregular or growing bluish-brown flat lesions or marks, either beneath the foreskin or on the body of the penis 
• Reddish, velvety rash beneath the foreskin 
• Small, crusty bumps beneath the foreskin 
• Irregular swelling at the end of the penis 

It can be difficult for healthcare professionals to diagnose penile cancer due to its rarity and the fact that there are many non-cancerous conditions that can affect the penis. However, these common conditions usually improve after an initial course of treatment so if symptoms have not improved after this time, an urgent referral to a urologist should be made. 

What causes penile cancer, and can it be prevented? 

Although penile cancer is rare under the age of 50, it can affect younger men. Whilst studies into the causes and development of penile cancer are ongoing, there are several factors which appear to increase your risk of developing the disease. 

These factors include: 

• Human papillomavirus (HPV) – around 50% of patients with penile cancer show evidence of infection with the high-risk strains of HPV. Practicing safe sex using a condom can help reduce the risk of HPV. Boys aged 12-13 (school year 8) are now offered the HPV vaccine and it is also available for men who have sex with other men. 

• Presence of the foreskin – penile cancer is virtually unknown in men who were circumcised as a child. However, circumcision in later life does not reduce the risk of penile cancer. The risk of uncircumcised men developing penile cancer is greater if they also have phimosis (see below). 

• Phimosis – this is a condition in which men are unable to fully retract the foreskin and research suggests that men with phimosis are around 10 times more at risk of developing penile cancer. It can make it more difficult to maintain a good level of hygiene or to notice abnormal changes. It can also lead to a build-up of substances under the foreskin that could later contribute to the development of penile cancer. 

• Smoking – some studies have suggested that smoking may increase the chance of developing penile cancer. 

• Psoralen-UV-A Photochemotherapy (PUVA) – has been linked in some cases to the development of penile cancer. 

• Melanoma – can also develop on the penis and can be difficult to diagnosis. Melanoma can develop in areas untouched by the sun. 

How is penile cancer treated? 

The recommended treatment depends on how early the cancer is caught. Penile cancer is more treatable if it is found early and has not spread. 

Although pre-cancerous and some early penile cancers can be treated using chemotherapy and immunotherapy creams, laser or minor surgery such as excision or circumcision, resulting in a minor change to the appearance and function of the penis, most cancer is treated by more invasive surgery. This will involve removing part of the penis in early stages or in late-stage disease a total amputation. Chemotherapy and radiotherapy may sometimes be used but surgery is the preferred option with the aim to remove all the cancer while preserving as much as the penis as possible.

Problems faced by those with penile cancer 

In collaboration with the world’s largest online penile cancer support group, a recent survey of 40 men has highlighted some of the current problems experienced globally by men who have been diagnosed and treated for penile cancer in the last 5-10 years. 

The key findings from those who responded were as follows: 

• Over 90% had never heard of penile cancer prior to their diagnosis. The lack of awareness of penile cancer in the general population is concerning because men may not be aware of the symptoms to look out for and the importance of seeking early medical advice. 

• It took more than a month for around 66% of men to be diagnosed. This is concerning as we know that delays in diagnosis often lead to a worse prognosis and more invasive treatment being required. 

• Over 50% experienced a delay in diagnosis due to an inappropriate referral being made (to skin or sexual health specialists for example). This is very worrying and suggests that many healthcare professionals are not recognising the potential symptoms of penile cancer and making appropriate referrals. 

• The vast majority reported that there was a moderate or severe impact on their mental wellbeing and regardless of the prognosis and treatment required, there is an inevitable impact on mental wellbeing. Despite the majority reporting that they would have found it helpful to speak to professional cancer and psycho-sexual counsellors, over 60% were not offered counselling as a routine intervention. 

• Over 90% felt that peer support was important but sadly, due to the rarity of the disease and limited resources such as support groups, men diagnosed with penile cancer are unlikely to encounter their peers. 

These statistics are very concerning and reinforce the need to raise awareness and improve the support available for those affected by penile cancer. The data suggests that many of those affected by penile cancer experience a delay in receiving a diagnosis and treatment, which may cause the cancer to progress meaning that more invasive treatment is required. 

In response to this data, Orchid are leading the way in improving patient outcomes by commissioning a 2 year project across the 4 nations aimed at educating and supporting both healthcare professionals and patients in diagnosing and managing the impact of this devastating cancer.

As a medical negligence lawyer, I’ve supported many clients who have experienced a delay in receiving a cancer diagnosis and too often see the devastating impact that this has on their prognosis and treatment options. 

It is also worrying that those affected by penile cancer do not appear to be getting the support they need as a routine intervention. It is hoped that a collaborative approach from healthcare professionals and third-sector organisations will help improve the psychological and peer support for patients with penile cancer. 

The work of charities such as Orchid, one of our key charity partners, is so important to raise awareness of penile cancer and encourage those with symptoms to seek early medical advice. Orchid offers a range of support services for those affected by penile cancer. 

Find out more about Irwin Mitchell’s expertise in supporting those affected by a delay in receiving a cancer diagnosis at our dedicated medical negligence section.

More information on Orchid and the vital work they do can be found on their website.