First Thoughts

                                                  Welcome to the Dicksplorer Blog

 

So, you’ve landed here because you have penile cancer, someone close to you has penile cancer, or maybe you were just searching for cock. Sorry to disappoint, nothing sexual here, and no dick pics, but why not hang around, read on, and see what you learn.

By way of introduction, I am Stu, 50 something husband, adoptive dad, with a long career in charity leadership and now with a diagnosis of the little-known penile cancer. First discovered in July 2023 and now, several operations and a brutal chemo programme later it is February 2025 as I pull my notes together and create this blog. I’m now 4 months on from a terminal diagnosis, giving me maximum one year, if I respond well to chemo, maybe 6 months if I don't. I’m not ready to fit nicely into the statistics though, I will do my utmost to still be adding to this blog for much more than a year. I’m not going down without a fight. The gloves are off.

The doctors are very clear, the prognosis is measured in months not years and the research studies don’t offer anything better. Whilst survival rates are fairly good for early-stage disease, when it has spread as far as mine now has (para-aortic lymph nodes) then you’re looking at 0% beyond a year, not even 1%!

I am stubborn, bloody minded and like a challenge. I will do my best to buck the trend and to rewrite the narrative.

I’ll start uploading more sections over the coming weeks, fairly regularly until my story is up to date, and as I have said, hopefully for some time thereafter.

As men of a certain age, I think we are all aware of prostate cancer, we probably all know someone, or at least know of someone who has had it, and in many cases had successful treatment. And testicular cancer too, has a reasonably high profile. For many years now social media in particular has regularly reminded me to have a good old feel of my balls, it would have been rude not to.

But penile cancer, who bloody knew?

On diagnosis I was eager to find out all I could. It seems maybe about 500 cases are recorded in the UK each year, only one for every hundred or more cases of prostate cancer. I looked at the NHS website, and other reputable sites such as Macmillan and read about the various symptoms, options for treatment and the fairly high survival rates if discovered early. Maybe this wasn’t going to be that bad after all. I also worked my way around a few academic research reports which didn’t quite give the same level of hope, although of course, they often involved studies of men with later diagnosis and/or advanced disease only.

But what I wanted more than anything was to read about real life experiences, from the perspective of those with this wretched disease. What was it really like? How did you feel about it? How did it work out? What have you learnt? How did you tell people? And so on…

But there really isn’t that much out there to be found. I discovered one book and the “Knob Blog”, both very helpful in different ways, along with a few short articles and that seemed to be it.

For various reasons I will cover later, I decided early on to take a deep breath and to be up front, open and honest about having penile cancer, raising awareness within my own reach. Now, I’ve taken the decision to step that up, put my story and my experience out there, hoping it can help others following on behind me.

Although rare, the symptoms, the treatment, the prognosis and the impact on lives varies extensively. A diagnosis does not in any way give a clear picture of what will follow. Maybe I can add another perspective from my own experience.

So, this is my story of not just having cancer, but having cancer in my knob, and all that means, not just physically but mentally and emotionally. It still does feel as if there is an unspoken stigma. There are some dark times, some confusing times and some downright funny times. I write as it is, there isn't much point if I don't. If that’s OK, read on. As I say, if my story can inform, encourage or inspire anyone, then it is worth telling, or if the awareness can help someone get a diagnosis soon enough to be successfully treated then I am more than happy to have found purpose in the situation.

 Buckle up, this is rollercoaster of a ride, with highs and lows…