A systematic review examining men with penile cancer reported that physical, psychological, and sexual wellbeing needs were largely unmet- beginning from the time of diagnosis through to treatment and into survivorship.
For many men diagnosed with penile cancer, surgery forms the initial part of their cancer treatment. Therefore, understanding the lived experiences of these men is foundational for how psychosocial services can best engage and provide support.
Penile cancer lived experience research
Researchers from Finland interviewed 29 men who had completed surgery for penile cancer. The stated aim of their research was to, ‘describe men’s experiences of the impact of penile cancer surgical treatment on their lives’.
The demographic and treatment details of the men in this study are,
- The mean age of these 29 men was 68 years.
- 65% were no longer in paid employment or were retired.
- 90% of men reported having a partner and children.
The type of penile surgical treatment the men had received were,
- Glansectomy/resurfacing (38%)
- Penile resection (28%)
- Minor surgery-circumcision (24%)
- Penectomy (10%)
Penile cancer study results
Following interview discussions with these men, researchers deducted four common themes which as discussed below. All quotes have been taken verbatim from the manuscript.
Theme 1: Cancer-modified me
The interviewee’s shared distressing insights and emotions regarding their ‘sense of self’ following penile surgery,
“But this is what it is so difficult to talk about when there is shame associated with this cancer and you want to cover it up…”
Some expressed feelings of ‘ineligibility’ as a partner,
“I just wonder who a woman would be happy with- a man like me? When it is said that size matters. And well, whoever says it’s not like that, that woman is probably lying. And I have not eagerly pushed myself into any relationship market”
Positive thinking was used by some men as a form of protection of self,
“I have tried with light humour to replace difficulties; things were going forward when you look from a different perspective and look for humour in different events. That is the way to make life easier”.
Theme 2: Everyday life defined by physical symptoms
The men in this study felt that activities in everyday life were determined by various symptoms. For most men, bladder dysfunction and chronic pain were common,
“I constantly have pain, so I still eat painkillers. Ten years of pulling in Oxycontin and other painkillers, and constantly all squats, and so on, they all make pain. It’s so messed up downstairs that…”
Impairments to physical function were often reported,
“I cannot work as before, but I can take care of myself, cook, go shopping. I can go in for sports, go for small walks, ride a bike”
Theme 3: Sexual life defined by cancer
Sexual fulfilment was reportedly mixed across interviews with the men involved in this study. Some men longed for sexual activity, whilst others mourned the loss of what sexual intimacy once was,
“Just the sex thing has eroded self-esteem. It’s completely gone, but yes, those desires have remained. Nothing so when there are no more sex left”.
Re-engagement in sexual activity elicited fear and apprehension in others,
“In sex, when that pain makes it that of course the erection goes down and then that thing is over, and it’s not really a nice situation that then you prefer to avoid that situation [because of fear of pain]”
For some, there was no change in their sex life,
“’Amputate it, it does not matter’. I said. I did not do anything with that for a long time”.
One man reported the proactive means he and his wife used to supplement and augment the physical changes following surgery,
“Well, you can find all kinds of sex tools like strap-ons and whatever you can find now. Those have been good and everything else and, yes, we have always been like this with my wife. We have always tried different ways of having sex and found out what works and what does not. I could say there is no problem with that”.
Theme 4: Reshaped content of life.
One man reported the struggle to adapt to not working/ being employed following cancer treatment,
“Well, of course, when you cannot work anymore, and then there’s nothing left to it [life] “
Others saw the opportunity in the change in life-course, to follow existing passion projects,
“I follow cosmology. Such amazing things are happening in the world…I have always been interested in those things. But yes, it’s now highlighted to me when some things are left out because of it [cancer]”.
The value of those closest was emphasised,
“I have met many nice and talented people in healthcare, but I will only tell you about one: my wife. Her. Wonderful actions in all situations have been crucial…”
Penile cancer study conclusion
The researchers in this study acknowledging that penile cancer surgery can have profound effects on men’s lives. They state; ‘physical, mental, sexual and social factors must be considered in the care and support of patients with prostate cancer, including providing them with sexual counselling and peer support at various treatment stages.’
Increasing awareness of rare cancers such as penile cancer, can hopefully provide increased funding opportunities to support research into this condition and provide platforms to learn from the experiences of men who have survived penile cancer.
The Australian charity checkyourtackle is a not for profit organisation providing information and support to men affected by penile cancer.
Expert Opinion: Wayne Earle, Patient, Survivor and Advocate for Penile Cancer
The most common reaction from men when they are diagnosed with penile cancer is disbelief as you never here, left alone realise there is cancer of the penis. Most people don’t know that this cancer even existed. Following the initial diagnosis men often feel a stigma having a sense of “loss” and “bewilderment”.
Unfortunately, some men have often delayed their medical appointments and are presenting with symptoms later, men are more reluctant to seek timely medical care in general. The subsequent later diagnosis means their prognosis cannot be good.
The symptoms and effects associated with penile cancer present significant management challenges to the patient and healthcare professional, across the entire cancer care area, from diagnosis, to survivorship, and palliative and end-of-life care. Urinary and sexual dysfunction, along with other psychosocial and physical issues, can significantly impact quality of life for people affected by penile cancer.
Clinical management approaches, such as organ-preserving surgery are feasible, may help improve cosmetic outcomes and sexual function. Long-term management of the psychosocial and physical symptoms associated with penile cancer often involves addressing behavioural risk factors, like depression, anxiety, body image concerns, urinary dysfunction and fatigue.
From the time I was given the diagnosis to this very day I have found very little in terms of support networks surrounding this kind of intrusive cancer. I have been limited in even hospitals, at doctors and online.
Support networks are lacking for suffers of this cancer, as well as the people it affects secondarily like family members and loved ones and partners. There is little information on how to cope, what to do and how to handle it as a sufferer or the loved one of someone who is suffering.
What we intend to do in the future is build some support around this form of cancer, and others like it. We’d like to raise much needed awareness to those who haven’t heard of penile cancer before, or to those who have but don’t have anybody to reach out to.
We want people to know they aren’t alone. I have been knocked back by large charities when I asked about their support and awareness for penile cancer; to talk about such a taboo subject in such a public way seems to be too much for them. I’ll do it myself.
The time has come for all sufferers and their families to stand up for themselves, to no longer be embarrassed and to get some help. We want to eradicate the notion of this behind a hidden subject; we want it to be dinner-table conversation, like breast cancer is and always will be.
What we want to prevent is men who are too afraid to talk about their issues to the point where it could cost them their life.
