Hello, I’m Shaun.
In 2022, my life changed dramatically when I was diagnosed with an aggressive form of penile cancer, a rare and life-altering condition that I knew nothing about until my diagnosis. That Christmas season, as my symptoms worsened, I faced not only the challenges of my illness but also the isolation of navigating an unfamiliar condition without dedicated support.
The first sign that something was wrong appeared one Saturday evening while I was showering. I noticed blood and, upon closer inspection, found what looked like a small sore at the base of my penis. Over time, this developed into a persistent pain in my lower abdomen and groin, which made sitting uncomfortable. My symptoms worsened as my penis became extremely sore, with a burning sensation like severe sunburn, swelling, and a very unpleasant discharge. These changes were frightening and overwhelming, and I knew I needed medical help.
Desperate for answers, I sought medical advice immediately, but getting a clear diagnosis took months. By the time I was diagnosed, my condition had progressed, and I required a five-hour surgery that resulted in the amputation of my penis.
This experience was life-changing and isolating, as I struggled to find resources or support groups specific to penile cancer. The generic cancer information I found didn’t address the unique physical and emotional challenges I was facing. I felt alone—but I knew there must be others experiencing the same struggles.
That’s why I founded Cock-a-Hoop: The Penile Cancer Charity. Our mission is to provide a safe space for those affected by penile cancer—patients, survivors, families, partners, and friends. Through our work, we aim to raise awareness of this rare disease, share vital resources, and offer the support I wished I’d had during my own journey.
Penile cancer is a difficult topic to talk about, but breaking the silence is the first step toward understanding, support, and early intervention. Cock-a-Hoop is here to ensure that no one facing this diagnosis has to go through it alone.
Thank you for being part of this community. Together, we’re building strength, resilience, and hope.
Cock-a-Hoop is dedicated to supporting individuals and families affected by penile cancer. Founded by Shaun, a survivor of this rare condition, our charity provides the understanding, resources, and community he wished he’d had during his journey. We aim to break the silence around penile cancer by offering emotional support, practical guidance, and tailored resources.
No one should face this diagnosis alone. That’s why we work to raise awareness, promote early detection, and foster open conversations about this rarely discussed disease. Whether you’re seeking information or connection, Cock-a-Hoop is here for you. Together, we’re building a stronger, more supportive community.
As Cock-a-Hoop continues to grow and develop we are pleased that we have an increasing number of allies who support us in our work. One such ally is John Osborne who has been a patient advocate for Penile Cancer for the last 9 years. Having being diagnosed with a disease he had no idea existed in 2016 John has worked tirelessly to raise awareness of penile cancer both amongst the general public but also within the medical profession. “Anecdotally we hear of many cases of delayed diagnosis which are often the result of men seeking medical advice but being given creams rather than being referred to a urologist” he said, “its not really surprising when many GP’s may never see a case of penile cancer within their day-to-day practice due to the rarity of the disease. Our role as patient advocates is to increase awareness amongst health care professionals so that men receive the appropriate and timely treatment they need as quickly as possible.”
The lack of data about penile cancer is a major stumbling block in understanding what is happening to men with the disease and their health outcomes. With this in mind John set about creating a Penile Cancer Patient Survey to try to find out from the men involved what they experienced. The survey covers aspects of awareness, diagnosis, treatment, aftercare and survivorship and has been created by patients, for patients and will be reported on by patients.
Early findings have been quite remarkable and show that 73% of men didn’t know that the disease existed, 63% had to wait more than a month to get a diagnosis, 24% waiting more than six months. 90% of men reported a good quality of life prior to treatment this falling to 43% after treatment.
The survey has attracted the support of the European Association of Urology Patient Office, eUROGEN and Orchid, the UK male cancer charity. Also another organisation that is very prominent with regards to Penile Cancer in Western Europe is https://patients.uroweb.org/eau-patient-office/
John is hoping to get as many patients as possible to complete the survey. If you would like to do so please follow this link:-
https://penilecancersurvey.my.canva.site/dagizn6ksjk
We will be bring more updates on the progress of this really important project as it develops.
A quick chat or message can make all the difference. Whether you’re a patient or supporting a loved one, we’re here for you every step of the way.
Penile cancer is an uncommon type of malignancy. In 2020, globally, 36068 new cases were diagnosed according to the International Agency for Research on Cancer. The majority (over 95%) of penile cancers are squamous cell carcinoma.
Cancer Over Time presents international trends in cancer-specific incidence and mortality rates. The incidence data are based on high-quality cancer incidence data, as recorded by one or more subnational or national population-based cancer registries that are included in the Cancer Incidence in Five Continents (CI5) CI5plus database. National cancer mortality data were extracted from the World Health Organization (WHO) Mortality Database.
A systematic review and meta-analysis of observational studies was performed, with no limits on their language of publication. Analyses were performed using Stata 13 statistical software.
More than 95% of penile cancers are SCCs. There are several recognised subtypes of penile SCC with different clinical features and natural history (see Table 3.1). Penile SCC usually arises from the epithelium of the inner prepuce or the glans.
Curtis L. Cetrulo Jr., MD, vice chair of Research in the Department of Surgery and director of the Division of Plastic Surgery, has been selected as the General William and Willa Dean Lyon Family Chair in Reconstructive and Plastic Surgery.
A man whose penis was removed because of cancer has received the first penis transplant in the United States, at Massachusetts General Hospital in Boston.
Penis transplantation is a surgical transplant procedure in which a penis is transplanted to a patient. The penis may be an allograft from a human donor, or it may be grown artificially, though the latter has not yet been transplanted onto a human.
I would like to dedicate my charitable endeavour and this website to the memory of Mr. John Gorton. In the scheme of things John and myself were aquatinted for an all too brief & fleeting moment in life, but it was a chance meeting that would significantly change my life, a meeting which would uplift me, empower me and a meeting which ultimately would give me hope when I was desperately ill and at my lowest possible ebb. Our chance meeting and John’s support, advice and his kind words of encouragement would define me and significantly influence the future path in life that I have now chosen to tread.
Sadly John is no longer with us having endured his own penile cancer journey and it is to this end that it is my sincerest wish to follow John’s example by supporting other individuals & their families who’s lives have been greatly impacted upon by this truly horrific & abhorrent disease, in the same way that John supported me and reassured me. By sharing his experiences and ill health journey with me John gave me hope when nothing else remained and he encouraged me to maintain and draw upon my own faith and to have faith in others such as the marvellous Consultant & Nursing staff who were in charge of my care throughout the four weeks of my hospital stay.
Some would argue that at Christmas-time 2022 I was in the wrong place at the wrong time. Upon my being admitted to the ward on that very cold, dark and bitter December evening, but upon my meeting John I soon realised that I was in fact in the right place at the right time.
Thank you John for all that you did for me during the brief time that we remained in hospital together. It is now my sincerest and fervent wish that I may be able to do for others who are suffering as you did for me.
May God bless you always.
