Orchid is proud to help support independent penile cancer advocates who wish to raise awareness and provide information, inspiration and support for others.
Richard was diagnosed with penile cancer at the age of 53. Since his treatment Richard has spoken openly about his journey. Having spent his career in alternative theatre he even created a hard hitting theatrical show-DICK which he showcased at the 2022 Edinburgh Fringe Festival.
Richard has travelled around the UK with Orchid delivering awareness sessions to health care professionals and helping them understand the impact that treatment for penile cancer can have both physically and psychologically. In 2019 his story was the subject of a candid and brilliant documentary–Shopping For a New Penis.
As a result he was interviewed by Philip Schofield and Holly Willoughby on This Morning raising the profile of penile cancer to a whole new level.
Richard is currently helping Orchid produce two awareness videos about penile cancer. To learn more about Richard`s achievements click here
John has been a strong advocate of penile cancer and like Richard has openly discussed his experience at educational events around the UK. Along with Orchid Nurse Rob and another independent advocate he has worked eUROGEN and made a tremendous contribution from the patient perspective to the new EAU/ASCO Penile Cancer Guidelines. He is an accomplished musician and an advocate of music therapy for therapeutic health and has written a book on the subject which can be found here.
In John`s own words;
Sometimes I have to remind myself that penile cancer is a very rare disease (for it has taken up a large part of my life for the last 7 years) and that I am one of a small, but ever growing, cohort of men across the world that experience this devastating and little understood condition.
Like many other men who have penile cancer I did not know such a thing existed until I was diagnosed. Like a lot of other men I was misdiagnosed for 5 months before I finally got to see a urologist who confirmed my cancer. Despite this delay I was lucky as my cancer was caught relatively early. After three operations in 4 months I was declared cancer free but it never really feels like it with the lengthy process of observation, scans and the ever present fear that it might return.
Unlike many other men my surgery was relatively straightforward and effective. A radical circumcision meant I retained my penis, a sentinel node biopsy made sure it had not spread anywhere else in my body (though as a consequence I live with Lymphoedema, a life limiting incurable condition that impacts on everyday living).
The thing that I did not anticipate and was completely unprepared for was the psychological impact of this disease. Any cancer will question your mortality but I was not expecting the way it brought up questions for me about who I was and what it meant to be a man. I wanted to know if other men in my position felt the same way; were they experiencing this same dilemma? were they struggling to understand what was happening to them?
I sought help from a specialist oncology nurse who seemed surprised by my need to talk about my condition – “men don’t want to talk” she told me, but this one definitely did! She did suggest that I might look at the Orchid website, it might have some useful pointers.
On the website I found the number for the Orchid Helpline which I phoned immediately and it was a call that changed my life. Rob, the Specialist Nurse, listened sympathetically and offered not only reassurance but practical support and guidance that was exactly what I needed. He suggested joining an online support group (of which I am still a member) and accessed me to practical information and advice. He has subsequently become a close ally, fellow fighter in the cause and someone who has helped to mold the way penile cancer is viewed and treated in the UK.
Since that call I have been supporter and advocate for Orchid. I could not believe that there was this condition that no-one seemed to know about and that this lack of awareness extended into the medical profession. The delays diagnosis and treatment, the stigma, the often poor support following surgery and the lack of access to psychosexual counseling (or any counseling for that matter!) was mind blowing. In reality men are dying un-necessarily, being treated late and with far greater consequences than are necessary if early diagnosis had access them to treatment they urgently required.
Wayne lives in Australia and is the founder of the Australian charity Check Your Tackle He was diagnosed with penile in his 40s and has campaigned for greater awareness around the disease ever since.
My name is Wayne and I am a 49-year-old male Penile cancer survivor. I would like to share my story with you, a story that like so many others in the past, I was once ashamed to share.
In early August 2013, I was referred to a dermatologist for this lesion which had spread beyond my GP’s control as he believed it to be skin cancer. In this same period, I also developed a small lesion on the base of my penis. During my visit to the dermatologist, he reviewed both lesions and followed through with a biopsy on my arm. However, he saw no link between the two and I was told it was a genital wart, at this time it was decided by the Specialist to concentrate on the lesion on my arm first and that he would treat the genital wart at a later date.
The following day, I received a positive result for SCC (squamous cell carcinoma) on my arm. The dermatologist suggested as the surgery was too large for him to deal with directly, I be referred to another specialist for the operation and ongoing treatment which included a skin graft.
Upon receiving this news, I was stressed and worried; I made another appointment to see my local GP to talk more about the cancer on my arm and to seek more advice about the “genital wart” on my penis. Again, though, I was assured it was just a wart and was prescribed ‘Wartec” cream and to use the cream on the genital wart as directed.
In late August 2013 I went to hospital to have the cancer removed from my arm. The skin graft was completed and a follow up treatment continued on for the next ten weeks or so.
Over the next 8 months I also visited the local doctor and dermatologist at least six more times regarding the wart on my penis as the cream was not working and it was getting larger.
Then in April 2014, eight months after my initial consultation with the dermatologist I was finally diagnosed with Bowens Disease, with invasive SCC. In short, it was Penile Cancer.
I was referred to a urologist who specialises in this form of cancer. I was told that I had to have penectomy due to the severity of my cancer growth.
I underwent a radical operation in June 2014 to remove the tumour from my body. A penectomy is the full amputation of the penis at the base, and I had to have a perineal urethrostomy – my urinal tract needed to be moved entirely and a small incision was done between my testicles and anus, allowing me to urinate. It’s safe to say in that moment, I felt as if every part of the being that made me a man was stripped of me. To this day, I am still embarrassed to go to the bathroom.
In August 2014, I had further complications and had to have a bilateral modified inguinal lymph node dissection – I had my groin lymph nodes removed completely. Since this, I have been diagnosed with stage 2 Lymphedema.
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 whom 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.
There is a need to have this done and it be urgent. We need to be breaking down the barriers about going to the GP and asking about our lumps and bumps. Too many men are dying from secondary cancers caused by penile cancer due to the embarrassment of being misdiagnosed with an STD.
I am just lucky that after nine months of pushing my doctors they finally listened. If I hadn’t had been persistent, I wouldn’t be here to write this.
Wayne is a also a co-founder of the largest online support group for penile cancer Penile Cancer Awareness and Support
Jon was diagnosed with stage 3, grade 3 penile cancer in 2019 at the age of 40. Following his treatment he has written openly and honestly about his journey and experience in an online blog.
Cancer is going to affect half of us..
We all know someone that’s had cancer, but we never really think it’s going to happen to us. At least, I certainly didn’t.
In 2019 I was 40. Married with 2 children, 2 cats and a comfortable life in the English Home Counties. I was quite fit, wasn’t a smoker or much of a drinker. I just didn’t fit the stereotype of a cancer patient.
By the late summer, I’d developed a bit of an itch. There’s no point in keeping you in suspense any longer, I had an itchy penis.
I didn’t think much of it initially, as uncircumcised men do just itch every now and again. Then I discovered a painful lump on the head of my penis, and the smelly, rusty brown discharge started.
If you have ever met a man, we’re quite… sensitive about our penises. It’s a bit of a thing we have. If anything goes wrong, it needs to be sorted. Immediately.
I`d always considered myself a winner in the great lottery of life…
I grew up a 6’6”, rugby playing, charming, brilliant, (and modest, naturally) force of nature. Spending my formative years in a post-industrial English port town, opportunities were plentiful and my penis had always done a sterling job for me.
I’d previously had a couple of little issues to resolve. My balls swelled up like a balloon once, with a mystery infection. The phimosis came and went too, but it never caused me any trouble. I’d actually been thinking of getting a circumcision for a while, just to tidy things up. I hadn’t done anything about it though.
Over the next few days, my foreskin thickened, and I could feel a dull ache in the right side of my groin. I was beginning to get quite concerned. So, I went to my GP.
After a cursory check, he made up his mind pretty quickly. I was misdiagnosed with balanitis and sent away with some creams that I couldn’t use. A week or so went by, and nothing changed so I went back.
My lump was bigger, my skin was thicker and the marble sized lump in my groin had started to show. I asked for a referral, but was sent to the sexual health clinic instead. More negative tests and another two weeks went by, and my GP was out of ideas. So I booked a private consultation.
It took the doctor about ten seconds to say “you have cancer”…
It felt as though a huge hole in the ground had opened up, and I was being dragged into the abyss. The doctor was talking, but I was somewhere else. I walked out with another referral, staggered through the hospital and sat in the car.
All my emotions arrived at once, and I broke down. An hour went by before I called my wife to tell her the news. Talking brought clarity, and my gallows humour lifted the mood.
I pulled myself together and made an appointment with Professor Nick Watkin, a leading urological surgeon, and expert in penile cancer. He quickly restored my faith in UK healthcare, walked me through the plan, and I was under the knife just two days later.
It was at this point, I knew I needed to share my story…
I wanted to take control, to stop any guessing or gossip from family and friends. I’d tell the people close to me everything I knew, whether they wanted it or not. It was just easier that way. So I started posting on Facebook to keep everyone up to speed.
By the time I went under the knife, the tumour on my penis was like a thick juicy earthworm, and the one in my groin had grown to three inches across. The surgery to remove them took around 3.5 hours and left me with a circumcision, less lymph nodes, a drain bottle and plenty of stories.
By the time I had surgery to remove more nodes on the other side of my groin and pelvis, it was confirmed that I had stage 3, grade 3 cancer. So, in the height of the COVID-19 pandemic, I was sent to The Royal Marsden for chemotherapy, and radiotherapy treatment to the groin.
Treatment hasn’t been without complications though..
I was hospitalised in January 2020 after getting a drain infected. I’ve had to manage stage 2 lymphedema in my legs. I’ve had moist skin desquamation from the radiotherapy, and my skin has changed colour. At one point my balls were the size of an outstretched hand and my penis was buried in a mass of skin, like a bashful jabba the hutt.
It’s now January 2021, and they haven’t found any new disease for a year. I’ve started running again, and I’m determined to get as fit and strong as I was in 2019. I’ve been given a second chance at life, so I’m taking on new challenges to see how far I can go.
My Facebook posts started to get really popular, even with people I hadn’t spoken to or seen since school. Everyone wanted to tune in for the latest! So I started https://knob.blog to share my experiences with whoever wanted to read them. Since then, I’ve evolved my blog into a source for all things penile cancer, getting fit again, as well as the story that got everyone hooked of course.
Oh, my cock? Yeah, that’s magic now. We all love a happy ending, after all.
Jons blog can be found here
Davids Story (U.S.A-Delaware)
On February 27, 2019, another age of 45, I received the devastating news that I had Penile Cancer. I was referred to Temple Hospital in Philadelphia Pennsylvania. In complete shock, all I could do was cry. So many thoughts raced through my head. Embarrassment Death How would my wife handle the news? Was she stick with me through all of this? After telling my wife and the family, the first of 5 surgeries would be scheduled for April 2 2019. 2 more surgeries would follow shortly after. With the love and support from family and friends I was able to keep my mind clear and get through every procedure easily. I came up with a saying that I wouid repeat over and over. One Test At A Time, One Result At A Time. One Surgery At A Time, One Recovery At A Time. This saying would remind me not ti think to far ahead and worry about what might be. If you think to far ahead you will drive yourself crazy. During my recovery I realized how rare this cancer is and I knew I had to do something to bring awareness to all men and their caregivers. With the help of a author, I wrote a book called Life Isn’t Always Beautiful. It was released on Amazon October 28 2021. As we were writing the book we realized it was not just about the patient patient but also the caregiver. Not only does the book speak about Penile cancer, It is also a love story. Life Isn’t always beautiful lets us know that no matter what we are going through, rather it’s cancer, depression or abuse, with love laughter tears and God we can get through anything
If you would like to share your experience and promote much needed advocacy or want to join a growing band of advocates who can help other people understand the effects of penile cancer please email email@example.com