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.


 

Loss of confidence

By nature, I normally combine brutal confidence with a sunny disposition and a relatively good perception of my strengths and faults. As the French say, I’m comfortable in my skin. (Though they generally say it in French)

Recently that confidence seems to have taken a hit and initially I blamed the Unwelcome Guest.

When people learn you’ve got cancer, they immediately think you’re going to die and even if you’re not headed straight to the departure lounge, they tend to assume you spend all your time thinking about your mortality or lack of it.

Cancer changes people’s perception. Someone once said we all carry three words in our head to describe people we know. Whatever those three words are when people think of me, I’m pretty sure one of them is now cancer. I suspect this leads some to think I’m diminished in some way and unlikely to perform my job as effectively or be a generally high-functioning member of society. Cancer also coshes humour, stuffs it in a burlap sack and throws it overboard.

I’ve been too blessed in my life ever to be a victim and I’ll be damned if cancer is going to make me one now, but dealing with cancer is odd for those who’ve contracted it and for those who come into contact with it who are mostly thinking, thank God it’s not me. Cancer can be like water on limestone, a slow drip-drip of confidence erosion.

Part of my job is to get on my hind legs and talk to groups of people who then benefit from my enormous wisdom. Lucky sods. Unlike Mrs Preen who hates giving talks, I quite like it. If you haven’t already guessed, I’m a bit of a show-off.

Part of my cancer treatment is getting quarterly hormone shots which gives me a small insight as to what menopausal women have to endure. In short, I get hot flushes, flashes and sweats. A week or so after my first shot I was at a meeting at the Natural History Museum when suddenly, out of nowhere, I’m in a muck sweat. High temperatures seem to trigger these events and the summer is definitely worse but whatever the ambient temperature, I start leaking at least five times a day.

This is uncomfortable, unpleasant, but as I’ve said elsewhere if this is what it takes to boot out the Unwelcome Guest then so be it. No sweat you might say, but it’s not so great when it happens when giving a presentation to clients. Suddenly I’m melting in front of their eyes and I can see it’s as uncomfortable for them as it is for me. They’re thinking Jim’s either as nervous as a first date or having a heart attack, whatever their thoughts, dripping sweat from the eyebrows is not a great look.

On a more banal level, I’m also a bit Mutt & Jeff – too much loud rock & roll from a young age is the culprit there. Being hard of hearing also tends to sap one’s confidence, as if you don’t catch what people say, you just appear thick.

Don’t get me wrong this loss of confidence is by no means terminal and most days I’m just as arrogant, self-assured and opinionated as ever, but it does tend to gnaw.

As much as I’d like to blame the Unwelcome Guest for this intermittent confidence outage it might be as much about old age as cancer. I hit 65 this year, which in a peculiar way I’m quite looking forward to. My last socially significant birthday was 21 and that’s 44 years ago. Here comes retirement age, though I have absolutely no intention of retiring as I’ve always associated retirement with death. My Dad retired at 60 and was dead in eighteen months.

I may not be able to run as fast as I could, getting up from kneeling down requires a herculean effort and my prostate is shot, but I’m taking comfort in the words of PJ O’ Rourke: ‘Age and guile beat youth, innocence, and a bad haircut.’


Unwelcome Guest in arse kicking sensation

The Brexit box-set psychodrama seems to be reaching the season finale, but let’s forget about that and concentrate on good news. I am now officially the James Bond of prostate cancer – my PSA level is 0.07.

Yesterday’s appointment with the oncologist, following two months of radiotherapy and a year on hormone therapy, revealed my PSA level to be ‘virtually undetectable’. Take that Unwelcome Guest, you now almost don’t exist.

To complete the Unwelcome Guest arse-booting contest my PSA level needs to be 0.03 or lower. Then it is undetectable and, for a while at least, I join the NED club. (No evidence of disease)

Now I know the Guest might already be planning a come-back tour but right now the NHS seems to have bested the little bastard. So first a big PHEW from me and then a huge thank you to all the wonderful urologists, oncologists, radiotherapists, GPs and nurses who have nursed me through this horrible twelve months. Without exception they have been splendid, caring and often funny. Who can forget the time I told a doctor that cancer had come as a shock as both my parents had died from heart disease, only for him to reply: ‘Don’t worry Jim, you’re still way more likely to die from a heart attack’. Such comfort.

So what now? I still have two years of unlovely hormone therapy to endure. I’m aware that some find this therapy truly horrible, and while I’m not crazy about it, if this is what it takes to be rid of the Guest then I’m in. I’ll see the oncologist every four months and hopefully my PSA level will decline still further. If it were to rise above two, that would be a cause for concern and would require further treatment.

I’m aware this game isn’t over, but neither is it game over. With one bound Jim was free to fight another day. I’m seriously considering having a couple of light ales this evening.

Prostate Cancer UK

Anybody reading this blog in the UK who has prostate cancer will almost certainly know about Prostate Cancer UK. This is their mission statement:

‘Prostate Cancer UK has a simple ambition – to stop men dying from prostate cancer. Through shifting the science over the next 10 years to focus on radical improvements in diagnosis, treatment, prevention, and support, we will stop prostate cancer being a killer.’

I’ve just been doing some copy editing for their website, which is an excellent resource that answers many of the questions both sufferers and their families may have about this pernicious disease. You can get your Man of Men charity pin from them too. Check out the website, if you haven’t already, and support a worthy cause.


I’m making a list, I’m checking it twice

Technically I was tidying but really I was rummaging through a cluttered cupboard in my home office. I like to think of this as my man-cave but in a small house in central London it’s more like a man-cupboard. The rummage produced a list. Now to he clear, I like lists – a lot because:

  1. They help me keep on top of work.
  2. Stop me forgetting things.
  3. And allow me the joy of putting a little tick next to a completed job.
  4. Some people cross things out once they’ve completed a job but that carries a huge risk of not being able to see what you’ve done. No serious list maker would stand for that.

Christmas is the time of year when lists come into their own, with Santa’s Naughty & Nice list setting the Gold Standard, though to be fair to the fat, bearded chap I check my lists a great deal more than twice.

Inevitably, given the nature of this blog, the list I’m talking about is a little less full of festive fun. Prior to my prostate cancer diagnosis, I’d spotted blood in my urine which prompted me to go to the doc and set me off on my cancer capers.

What I’ve not mentioned before is that two years earlier I had also been peeing a small amount of blood and had sought medical help. On that occasion, following various tests, I was given the all clear though not surprisingly the question: ‘did they miss something?’ has popped into my mind on more than one occasion.

Which brings me to my uncovered list which were the notes I took at the time during a consult with a urologist at Guy’s Hospital.

  1. Benign cyst on left kidney.
  2. Enlarged Prostate. May cause problems in later life.
  3. No sign of tumour or cancer.
  4. Blood (in urine) probably caused by prostate.
  5. CT scan of kidney in case ultrasound had missed anything, ruled out cancer.
  6. Blood should go away, can take drugs for prostate, but these can have side effects.
  7. CT scan 3rd September at St Thomas’ Hospital.

So, what to make of that? Well I’m certainly no doctor, but it looks like they did all the analysis necessary though of course the enlarged prostate is the giveaway. I love the idea that it ‘might cause problems in later life’. I’m pretty sure I had in mind when I was 80 or 90 not just two years down the track. Unfortunately, it looks like the Unwelcome Guest had already made a booking.

I suppose if I have a criticism it is that I should have been put on what is called Active Surveillance and monitored more closely.

I’d forgotten I’d had the CT scan on 3rd September which is my birthday, but remember feeling deliriously happy when I saw the urologist for the last time and was given the good news.

Two years later after I’d started again on the unlovely round of tests, I remember telling Mrs Preen I had a strong conviction there would be no free pass this time. Unfortunately, I was right.

But let’s keep the doom and gloom at bay at this time of year. I’m feeling fine and the radiotherapy side effect, needing to pee all the time, is gradually going away which means I’m sleeping more and feel less tired.

Given the nature of this post, I guess I’ve got to finish with a list, so I’d like to shower seasonal goodwill on all of the following:

  • Those who have their own Unwelcome Guest.
  • Loved ones of those who do.
  • Friends and family who worry about me.
  • And anyone else who’s along for the ride.

Happy Christmas, Happy Holidays and Happy New Year. I’ll be back at the start of our next solar orbit.


The year of living cancerously

It’s now almost exactly a year since I discovered the Unwelcome Guest had set up shop in my prostate. The presumptuous little bastard.

To celebrate, and I’m going for gold in the most inappropriate use of an English word, I thought I’d look back on my year of living cancerously; not so much at the treatment and side-effects but rather at what it does to your life. SPOILER ALERT: It’s not all depressing.

One in two people in the UK will develop cancer at some point so to some degree it’s a shadow that hangs over us all but make no mistake there is a significant difference between a potential threat and the real deal. If you become a member of the cancer club, the club that nobody wants to join, it packs a punch. When the doctor looked at my scan and I got my first glimpse of the Guest, I broke into a sweat, felt faint and thought I’d collapse but lay down and gathered myself. I cried when Mrs Preen and I parted at the tube station.

Take the following thoughts and questions, mix them in a blender, and you’ll get a sense of how it feels in the first few days: What is a PSA test? How much is the biopsy going to hurt? Will I be here next year? What do I tell my 15-year-old daughter? What’s a Gleason score? Why me you bastard? For best effect have these going around your head at three in the morning while working up a muck sweat of worry.

Catch cancer early and you have a decent chance of survival. Fortunately my cancer was mostly contained within my prostate with the Guest just nudging one lymph node. When AA Gill was diagnosed with terminal lung cancer, he described himself as having the Full English. Mine is more of a continental breakfast, but no one should ever get complacent; what was once a croissant can soon become a fry-up.

In 2008 PJ O’Rourke was diagnosed with a treatable form of cancer. He quipped: “I looked death in the face. All right, I didn’t. I glimpsed him in a crowd.” I guess the same goes for me. I once got drunk with PJ in Mogadishu when we were both there working for ABC News. We quoted Auden and Yeats at each other, pretentious little pricks, but I’m happy to say he’s still very much alive.

Pretty much at the outset I was given a 50/50 chance of my cancer being cured and if not cured, was told it had the potential to be managed successfully for a number of years. Dan, a fellow blogger, and prostate cancer patient has a warning: ‘Once you introduce the word cancer into your vocabulary, it never goes away, even if the disease does. There will always be that little cloud called “fear of recurrence” that will follow you around for the rest of your days’.

Perhaps its superstition or perhaps it’s just good sense but Dan’s wary of ever saying one is cured or cancer free. Maybe it’s like being an alcoholic, you are only ever a recovering alcoholic even if you haven’t had a drink in 30 years. He likes the acronym NED, ‘no evidence of disease.’ Saying you’re cured is dangerous; you may think you’re done with cancer, but cancer may not be done with you.

I follow a Facebook page ‘Prostate Cancer UK Support Group’ where others with their own Unwelcome Guests post their stories, conditions and questions. Many are poignant, funny and some unbelievably sad. I’ve seen posts detailing men who are diagnosed while still in their forties and early fifties, which seems so unbelievably unfair. Many also find the treatments that I’m on such as hormone therapy and radiotherapy almost unendurable. While everyone’s treatment will differ so will their reaction to the treatments and side-effects.

But of course it’s not just the patient who has to live with cancer, his family are also on the same unwelcome journey. Right from the outset I took the decision to be upbeat and to make the journey as bearable for them as I could.

Yesterday Mrs Preen and I took the dog for a longish walk in the countryside and I asked what it was like to be married to a husband who was foolish enough to develop prostate cancer. Her answer came in two equally surprising parts. First, she said she was worried she didn’t worry enough about me! Not, she was quick to reassure me, because she didn’t care but because she was convinced all would be well. She said that if on balance I’d like her to worry more she would get right down to it.

I’ve mentioned this before elsewhere, but she said she continues to be astonished at how remarkably upbeat I am most days and actually less grumpy than prior to my diagnosis. I guess all wives can use a less grumpy husband, but why this should happen after contracting cancer seems to defy logic. But you know what? I’m not going to dig too deeply into the whys and wherefores and just be happy that’s the case. There’s plenty of time to be miserable should the Unwelcome Guest decide to go medieval on me.

And what of my teenage daughter, what are her thoughts? She knows I have cancer, but I rarely mention my condition or treatments. I’ve done this to protect her, but it occurred to me that my cancer might be seen as off limits; something that shouldn’t be mentioned. What could be worse than fretting about something you can’t talk about? So, we had a chat about it and apparently her mother had told her that dad wasn’t going to die anytime soon and that had offered enough reassurance. At 15 there’s lots of other stuff going on and heaven knows I don’t want to be a worry when the spectre of GCSEs is causing enough terror all by itself.

When you tell people you have cancer, they don’t say it, but their first thought is, he’s going to die soon. That’s a reasonable assumption because that’s exactly what I thought when I was first diagnosed. I’ve got a pretty good shot at traveling on a few more years but I don’t know for sure where I’m headed and at some point, it might not be in a very desirable direction. Then I reserve the right to be less cheerful. But right now what cancer gives me is all the encouragement I need to live in the moment. When I was young the future was like a huge jigsaw puzzle that I’d construct when I finally got around to it. At almost 65 and living with cancer, the future is now.


Radio Days (12): Light at the end of the doughnut

With thirty-six rides on the doughnut of doom complete, there are only three more to go. By 10am next Wednesday my radiotherapy treatment will be complete; there’s light at the end of the doughnut.

Today Mrs Preen and I attended my final treatment review session with Maggie who seemed pleased with my progress. Not much has changed as far as side-effects go, though at night I’m wearing out the carpet on the way to the loo slightly more frequently. About three weeks ago this was getting to be quite a drag and lack of sleep was making me feel as tired as a teddy bear. It’s amazing how the body can adjust, because now, even though bog attendance has increased, once back in bed I generally go straight back to sleep. Feeling more rested, I managed to stay up until 10.30 last night; so rock & roll.

Maggie warned that for a week to ten days after treatment the side-effects may get a little worse but by strength of will and force of character, I’ve decided that’s not going to happen to me. Let’s see who wins, me or the doughnut.

For anyone reading this who’s about to start RT all I can say is that it wasn’t so bad though of course everyone’s experience differs. Alan, one of the early morning cancer crew, has found sleeping very difficult as he’s trudging to the loo on the hour every hour. The poor guy looks tuckered out.

I’ll be glad not to have to slog to hospital every morning, but the bicycling has kept me fit and I’ve continued to work throughout, though perhaps not quite at full speed. (Don’t tell the boss)

On our way out the door Maggie handed me a sheet detailing support group meetings for prostate cancer patients. At the end of every month there’s an event called Prostate Life! (their exclamation mark, not mine) where guest speakers are invited to talk on subjects ranging from ‘Prostate Cancer – what is it?’ to ‘Psychological issues and managing stress’. Interesting stuff and no doubt you’ll want me to put your name on the door, but the one I’ve got my eye on is The Festive Meeting on 28th December. Obviously, I’ll be wearing my Christmas jumper, but what does one take to a festive prostate cancer meeting? Frankly the mind boggles.