Prostate Cancer: It’s A Walk In The Park

In some circles, there’s a sense that prostate cancer is easily treatable and frankly a bit of a walk in the park. Carl told me: The worst thing I hear when telling people I have prostate cancer is when they say: ‘Yes if you’re going to get cancer that’s the one you would choose’. Despite the many effective treatments and survival rates improving even a cursory glance at the relevant statistics should indicate that prostate cancer, like any form of cancer, goes about its business in a brutal manner.

A time to unite and spread awareness

You may have no interest in cancer, but unfortunately, cancer may have an interest in you. All of which brings us to Prostate Cancer Awareness Month. This year the theme is to elevate the voices of those who are living with it together with the voices of partners, families, and friends who are along on the no-joy ride. As ever the driver is to encourage men to get tested so doctors can catch the cancer before it spreads. Read on…

Prostate Cancer is Top of the (Medical) Charts

Just this spring, we got the unwelcome news that prostate cancer is now the most commonly diagnosed cancer here in the UK. Men, we are top of the charts, though admittedly on one of the unlovliest hit parades in the world.

I may be clutching at straws, but there is an upside to this because it means many more men are coming forward to get tested and as we know; catch cancer early and your chances of survival look a whole lot better.

Everyone in the UK over 55 is screened for bowel cancer every two years, but there’s no such screening for prostate cancer because detecting it is so problematic. The PSA test just isn’t accurate enough for national screening.

I’m a case in point, when I was diagnosed with a sizable tumor in my prostate with a Gleason score of 4+3=7, my PSA was still only 5.03 which is barely above normal. We need better tests and right now a lot of work is being put into a pre-biopsy MRI scan. Read on…

Reasons to be cheerful

A heartfelt plea was posted on our Facebook page: Are there any cancer success stories or is it all doom and gloom? It’s a tough question but I’m going to find some reasons to be cheerful.The first reason to be cheerful is this website, this community’s Facebook page, and all the other support groups. You’ll read and hear some tough stories, but I take great comfort from the resilience I find in others. I’m going to share some stories in an effort to find light in the darkness.

John’s arms were aching, so he went to the doctor. The medic struggled with a diagnosis and started asking about his family medical history. He mentioned his father was being treated for prostate cancer. The doctor ordered tests that came back positive. John had a successful prostatectomy, but unfortunately, his PSA level started to rise. Twenty radiotherapy sessions later his PSA level is now negligible. Read on…

Preen cancer update 12.8.20

I’ve just got off the phone with my oncologist who came calling with good news. My PSA level remains at 0.03 and has done so now for almost a year meaning I’m still part of the NED Squad. (No Evidence of Disease)

My final hormone therapy jab happens at the end of the month and at that point all treatment ceases. My PSA is then monitored every six months for two years. It may start to rise, and should it reach 0.5 then further treatment will need to be considered.

Obviously, I’m hoping the unwelcome guest gives me a break for a year or so, but you never know. But make no mistake this is good news by any standards. Thanks to you all for being in my corner during this trying time. Now fuck off cancer you irritating little bastard.

The Final Countdown

It’s close on three years since I was diagnosed with prostate cancer and in a month my treatment for the ejection of my unwelcome guest should come to a close. What then?

It was in November 2017 when I got the unwelcome news. I’d had blood in my urine, a rectal exam discovered a distended prostate and then came a biopsy telling me there were lots of little unwelcome guests all over my prostate with a particularly ugly slug measuring 10mm. Dr. Gleeson had me at 4+3=7 and my PSA stood at 5.03, but my feeling scared and sorry for myself meter had the needle jammed way over into the red zone.

Sometimes I get nostalgic and miss the old days, but there are some old days I’d rather delete entirely from the memory bank. As most people reading this will know, those early weeks after diagnosis are frankly terrifying, whatever the doctors are telling you, you are telling yourself something infinitely worse. Read on…

How Does Your Partner Understand Your Prostate Cancer?

When I was diagnosed with prostate cancer my wife and I sat together when I got the bad news. Even though I kind of knew it was coming, the fact that I had an unwelcomed guest loitering with intent in my prostate was still a shock.

When I got home, I knew I had to tell my 14-year-old daughter the bad news but was at a loss as to how to begin. Finally, I said I had a problem, but it had been caught early and my prospects were good. To which she replied: ‘Well at least it’s not cancer’. This wasn’t going well.

Read on: https://prostatecancer.net/living/partner-understanding/

My number’s up

Ok calm down I’m not about to peg out, but I’ve just discovered that my PSA reading is up rather than on the smooth glide path down that I was counting on. I was at my quarterly meeting with the oncologist at Guy’s Cancer Centre when I was given the unwelcome news that the Unwelcome Guest has made a slight return.

But let’s put this into some perspective. The PSA blood test is a notoriously crude measurement but just about the only means available to check the state of prostate cancer particularly post-prostatectomy or in my case post-radiotherapy.

When the Unwelcome Guest was first diagnosed, my PSA level stood at 5.03. I was then put on hormone therapy and the dive down started. Within a month my PSA stood at 2.61. Six months later, in June, it was 0.8. Following radiotherapy last Autumn, a test in December revealed my PSA to be virtually undetectable at 0.07.

For it to be entirely undetectable it has to fall to 0.03 or lower and that of course was what I was hoping for, but the Unwelcome Guest had other ideas. Now I’m told the little bugger has bounced back up ever so slightly to 0.1. In itself this may not be serious, and doctors recognise something called the PSA bounce, with the numbers fluctuating, following radiotherapy. Hopefully this will correct itself, but if it continues to climb and were it to reach 2.0 then other medical options would have to be explored.

I can’t deny this was something of a shock as I was pretty convinced that while still on hormone therapy and following radiotherapy to misquote Yazz and The Plastic Population ‘The only way was down.’ But that’s the Unwelcome Guest for you; full of little surprises.

Prostate cancer that comes back is called a recurrence and happens in 1 in 3 men after treatment for early prostate cancer, but we are a long way from that and anyway if those are the odds on the table I’ll take ‘em.

My next appointment at Guy’s cancer theme park is in September and as you might imagine I’ll be paying pretty close attention to the scores on the doors. In the meantime, I’ll be doing what I’ve learnt to do since Autumn 2017 when I was diagnosed and live in the moment. Nothing bad is going to happen to me in the short term, we have a wonderful holiday to look forward to and then come September we’ll take a look at the lay of the land.

The war on cancer

Last week the newspapers were back to declaring war on cancer. Let’s hope it’s more successful than the war on terror. But this was welcome news; a new cancer hub known as the Institute for Cancer Research (ICR) is set to be located in south London close to the Royal Marsden Hospital. Researchers there will look at new ways to stop cancer cells from evolving and resisting chemotherapy. One of their goals is to ‘herd’ cells together and stop them from flourishing much in the way that drugs now control HIV. They are calling it the world’s first Darwinian drug discovery programme.

Senior scientists at the ICR argue that the traditional use of ‘shock and awe’ chemotherapy against cancer has failed because too often it has helped fuel ‘survival of the nastiest’ competition and evolution among cancer cells.

Dr Olivia Rossanese, head of biology, said: “We’re especially excited by the potential of APOBEC inhibitors, to slow down evolutionary diversity and drug resistance, and ensure our existing cancer drugs work for patients for much longer.”

Inhibitors are being designed to stop the action of a molecule called APOBEC to reduce the rate of mutation in cancer cells, slow down evolution and delay resistance. These drugs should become available within the next ten years.


It all started with my balls

A reader of these blogs kindly sent me a link to an article by the novelist Colm Tóibín who was recently diagnosed with testicular cancer. A seasoned novelist, Toibin knows how to grab a reader’s attention:

It all started with my balls. I was in Southern California and my right ball was slightly sore. At the beginning I thought the pain might be caused by the heavy keys in the right-hand pocket of my trousers banging against my testicle as I walked along the street.’

It’s a stark piece which sets out in unflinching detail the pain and disorientation caused by chemotherapy or ‘the juice’ as he calls it. But what makes his experience particularly bleak is that he went through much of it on his own. Get cancer and you need back-up.

But he’s also funny and has a very Irish trope that runs through the article.

‘If anyone has been out anywhere – at Mass, a football match, downtown, in Dublin, to the pub – you asked them: ‘Was there a big crowd?’ When other friends came to visit, they could also be asked if there was a big crowd at any event they had attended. I don’t know why asking about the ‘big crowd’ gave me such satisfaction.’

This becomes his go-to small talk, but I only wish if asked whether there was a big crowd at his house he could have answered. ‘Yes, my house was full.’

He has a testicle removed, completes his chemo and contemplates having one sad lonely ball.

“They used to complete one another’s sentences, those balls, they were so close, but now the surviving testicle has to get used to the change.”

Dark, dark humour but beautifully written for all that. The same is true of much of the work of South African novelist J.M. Coetzee. He now lives in Adelaide, Australia where his novel ‘Slow Man’ is set. Coetzee also finds laughter in the darkest of places. In his book, which is largely an interior dialogue, an elderly man is out cycling, gets hit by a car and has a leg amputated.

Like Tóibín, Coetzee’s fictional character is alone in the world and has some troubling thoughts about the kind and cheery young doctors and nurses who are tending him. He senses an indifference to his fate on their part. It’s as though at some unconscious level these young people who have been assigned to his care, know he has nothing left to give the tribe.

‘Better for the old to tend the old, the dying the dying! And what folly to be so alone in the world!’

I’ve had mostly exemplary care from the doctors and nurses at the NHS and would always prefer brisk cheerfulness to hand holding sympathy which would likely make me blub uncontrollably. But what I couldn’t stand is to be alone. So thank you Mrs Preen, thank you daughter, thank you Bucket the dog and thank you family and friends. So far I can bear cancer, but I couldn’t bear that.


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).


 

 

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.’