Running the numbers

Rich J. posted a question in one of the prostate cancer Facebook groups I follow:

Curious – what was/is the average age of members when they were diagnosed/treated? I was 52.

Rich got a big response, so out of interest I totted up the replies. At the last count on the Prostate Cancer Survivors page, 241 members had contributed their age at diagnosis. The oldest was 80 and the youngest 28. Running the numbers, the mean or average was 57.67. Now I’m aware this is in no way a scientific test, the numbers can’t be validated  and the average is probably lower as old people don’t tend to use Facebook.

Still 57 seems young. I remember when I was diagnosed at 63, I told the doctor how unlucky I was to get it at such a young age! He laughed and set me straight.

By way of comparison Cancer Research UK has this to say:

Age-specific incidence rates (of prostate cancer) rise steeply from around age 50-54, peak in the 75-79 age group, and subsequently drop in the 80-84 age group, before increasing steadily again. The highest rates are in the 90+ age group.

The American Cancer Society cites these figures:

About 1 man in 9 will be diagnosed with prostate cancer during his lifetime. Prostate cancer develops mainly in older men and in African-American men. About 6 cases in 10 are diagnosed in men aged 65 or older, and it is rare before age 40. The average age at the time of diagnosis is about 66.

The response to Rich’s question signposted that Facebook can be a great resource and can provide fascinating insights. So, I posted this question on three prostate cancer groups:

What led to your diagnosis? Was it a routine check-up? Did symptoms become visible? In my case I found a small amount of blood in my urine and so went to my GP. What’s your story?

Like Rich I got a huge response from people largely in the US and the UK sharing their stories.

For me blood in my urine was the canary in the coalmine, but for so many others, there were no symptoms at all.

Ray J: Seeing my doctor for something unrelated to pc. He had to do a blood test so checked PSA at the same time because of my age 53. And that was the start of my journey. No symptoms at all.

Malcolm M: I went for a routine blood test for my cholesterol but unknown to me the GP had also ticked PSA, my cholesterol was fine, but my PSA was on the high side, caught totally by accident. I am so grateful it was tested.

The most commonly reported symptoms were difficulty peeing and blood in either semen or urine, but the symptoms can easily be misread or masked by other complaints.

Jim H:  I actually had painful urination due to some pills from a medical weight Loss clinic. They would not accept the blame and told me to get myself checked. So I did. That’s how I found out.

 Linda T: My husband had one incident while on holiday of a little blood in his urine. When we got home we were both ill with really bad infections. He thought it was all down to the infection but after I nagged him to get checked he agreed. First PSA test came back as 6.4. Second test two weeks later was 7.3. MRI and biopsy the following week confirmed PC.

Lisa S:  Dad had to get up more in the night to pass water and he had a difficult flow. After I saw Bill Turnbull speak about his diagnosis on the TV, I bullied him to go to the GP. He was diagnosed with Stage 3.

Interestingly, several people mentioned that when celebrities in the UK such as Bill Turnbull and Stephen Fry went public, it spurred them to get checked. Prostate Cancer UK has done a great job in persuading premiership football managers, including such luminaries as Pep Guardiola, Alan Pardew and Rafael Benítez, to wear Man of Men pins to show solidarity and raise awareness.

This is entirely anecdotal but from reading the posts it look like men are more likely to get checked for PC in the US than they are in the UK.

Alan W: Took me almost 9 months to convince my GP there was something wrong, put me on various tablets for an enlarged prostate (I was too young to have prostate cancer!!). Eventually I convinced another GP to refer me, operated on within 4 weeks……Phew!!

Jeff St. C: Mine was rising PSA over a period of about 2 years. A good reason for regular PSA blood tests in men over 50 (or younger with a history of prostate Ca). I understand that in the UK these tests are still not recommended. It’s about time that changed!

David R:  Might account for their less than stellar survival rates.

Those with family history tend to be much more aware of the problem as John C points out:

Father was diagnosed with prostate cancer in 2012, died from bone cancer Thanksgiving of that year (migrated from the Prostate). My PSA was always high for my age, but the Urologist wasn’t concerned. I decided to get a biopsy in 2013 just to be sure (age 53). Found out I had Prostate Cancer, Gleason 7. Had the operation Jan 2014, suffered through a few years of physical and psychological affects, but PSA is 0 and glad to be alive 🙂

I’m going to leave the final sobering story to Anthony C:

No symptoms. Ran Paris and Manchester marathons a week apart in April 2017 whilst training to take on one of the world’s toughest ultra-marathons on 4th June 2017. Was struggling with a groin strain so made an appointment to see a sports injury doc and a pre-arranged MRI scan hoping that a cortisone injection would sort me out. That was 8th May 2017. He saw the scan and sent me for blood tests and chest X-rays and the following day a CT scan before phoning me at 8.00 in the evening to tell me he was 99% certain I had Prostate Cancer. After 10 days all confirmed, Gleason 5:4, PSA 129 and incurable with widespread to the bones. The ‘groin strain’ was stress fractures of the pelvis where the cancer had weakened the bones and I’d carried on running on them. If I weren’t a runner I probably wouldn’t know to this day and I’d have been in an even shittier place.

For women Ovarian cancer is known as the silent killer because it’s so difficult to detect; only 19% of ovarian cancer is found early. The numbers are better for Prostate cancer and improving, but if you’re reaching fifty and the proud owner of a prostate, go get a check.

The other day Mrs Preen reminded me of a story that I’d entirely forgotten. I was forty and my employer had just gifted me health insurance which included a full health check-up. This involved a DRE, obviously I didn’t have a clue what that was all about. When I got home my wife asked me, with a slight smirk on her face, how the tests had gone. I told her that I’d given blood but before I knew it some itinerant Australian doctor was ramming his finger up my arse. Bloody cheek.

Right guys now it’s your turn. Don’t fear the finger.

The Facebook groups mentioned in this blog are:  Prostate Cancer UK Support Group, Prostate Cancer Support Group (US) and Prostate Cancer Survivors (US).



A fool’s tale, told by an idiot

This fool’s tale told by an idiot (they’re both me in case you hadn’t guessed) begins with a small lump on my neck and given the nature of this blog you can probably guess where we’re headed.

It is six years ago, we are living in Asia, and I’m sitting in the lobby of our apartment block waiting for Mrs Preen to come down from our flat on the twentieth floor. We are to have dinner together at a new restaurant. The lobby, a pleasant space, is kitted out with plush furnishings, wall hangings and huge statues of fat men balancing on their heads. Adjoining the lobby, the new Starbucks is doing a roaring trade in sweet iced coffee. Scratching the back of my head I feel a small lump on my neck, Mrs Preen arrives, we have a pleasant dinner and I think no more about it.

But of course, that’s not true, I did start to think about it, but the lump was so small and if rubbed almost seemed to disappear, so although I knew I should see a doctor, I decided the best policy was to ignore it. Anyhow, lumpy sat there not doing much and when we relocated back to the UK, the lump came with me. It was on the back of my neck and stayed in the back of my mind.

Occasionally, the lump would cause me to fret and then just as quickly I’d forget all about it for months at a time. Fortunately, when the Unwelcome Guest started to make his presence felt I did act, I did see a doctor. If I hadn’t, my health would likely be in serious jeopardy now. It does make me wonder why I responded to the Guest’s small symptoms but left the lump in limbo.

During my prostate cancer diagnosis, I went through a plethora of tests and scans all of which are documented in loving detail elsewhere on this blog. On one occasion just prior to both an MRI and PET scan a nurse asked me if there were any lumps or bumps, they should know about. For reasons I can’t begin to explain I said no, there’s nothing.

Secretly, I was terrified the lump might be some other form of cancer and the PET scan would reveal cancer had spread throughout my body. When the test showed the big C was restricted to my prostate it was both alarming and a relief, if that makes any kind of sense.

After that I would once again forget or fret about lumpy depending on my mood. Things changed a couple of weeks ago when it became obvious that the lump had got a lot bigger and was protruding from the back of my neck. I had something of a sleepless night and finally made an appointment to see my GP. I told Mrs Preen who took one look at it and said it’s fine, it’s just a cyst.  Avid readers of this blog will know that Mrs. Preen has a positive nature and always looks on the bright side. I was not so sure.

Let’s be clear where we stand. I’ve had a lump on my neck for six years, it’s made me scared, it’s grown relatively large and only now am I going to see a doctor about it.

And who does the doctor turn out to be? Well of course it had to be the Slasher himself. He’s the medic who administers my hormone injections like it was bayonet practise.

The Slasher takes one look at the lump and says oh yes that’s a subcutaneous lipoma, it’s a build-up of fat in the wrong place. Normally this occurs on your stomach or thighs, it’s nothing to worry about and will probably go away of its own accord and may reduce if you lose weight. You could have it removed but unless it’s really bothering you, I’d just leave it. The Slasher had spoken.

So, there I am with something I’ve been secretly scared about for six years only to be told it’s a bit of fat in the wrong place. All of which left me relieved, but feeling like a complete fool. There, my tale is told.