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).


 

 

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.


Injecting a note of caution

Those reading this blog who have prostate cancer and are on hormone therapy will know that the spring-loaded needle that drives the hormone implant into the luckless victim’s abdomen can sting a little. My last injection was administered by a doctor with the skill set of a porcupine in a hurry. In our house he’s now known as the South Lambeth Road Slasher (SLRS). For him it’s not so much an injection; more a drive-by shooting.

With my next injection due, I called the GP’s surgery to book an appointment with the nurse rather than a doctor and told them to make sure the Zoladex implant needle was in stock. Turning up two days later I tapped my details into the computer on the reception desk and guess who I was down to see? Yes of course, the Slasher himself.

I gently suggested to the lady on the desk that I didn’t want to waste the doctor’s time and would be very happy to see a nurse; only to be told that there was no nurse on duty. Finally, I had to admit that I didn’t have full confidence in the SLRS and asked if I could have an appointment with someone else on Monday or Tuesday. This didn’t prove possible at which point the lady on the desk volunteered to come in and hold my hand.

After agonising over the potential agony, I agreed to let the Slasher do his dirty work and waited for him to come and call me through. When he appeared, I gave a big wink to the ladies on the desk, all three were now in on it, and they burst into laughter. Hearing this the doctor said ‘I guess everyone’s so happy because it’s Friday’ which made everyone laugh some more.

This is where the story doesn’t build to a jabbing climax as It soon became apparent the pharmacy hadn’t delivered the hormone bazooka and I was able to escape unharmed from the clutches of the evil genius.

Unfortunately, I’ve just checked my voicemail and I’m now booked to see the Slasher on Tuesday. Will I escape unharmed, will I bottle out, will some kindly nurse come to my rescue and will this story ever get to the point? Stay tuned.

Slasher update

Pitching up at my GP’s surgery on Tuesday at 10.30, I tap my details into the reception desk computer and am rewarded with great news. The Slasher has been left on the bench and I’m seeing Nurse Angela for my hormone injection.

A shout of joy (mine) wakes up a couple of the older patients who are asleep in the waiting room’s heat. They look vaguely irritated, wonder what’s going on, but are soon back catching flies. So, it’s big news, the Slasher is side-lined.

Nurse Angela has been at the surgery for years and while she’s never skewered me with a Zoladex shot before, I’m mightily relieved it’s her doing the skewering and not you-know-who.

Because it’s a fairly serious procedure and being the professional she is, Angela wants a doctor in the room. A young medic enters, and I suppose out of professional courtesy she asks the doctor if he wants to give the injection. As you can imagine I’m having none of it and make it very clear if anyone’s going to ram a needle into Jim’s abdomen on the 15th January 2019 then that rammer is Angela.

The doctor steps back and Angela asks me how long I think she’s been giving injections. I hazard a guess and say two weeks. She laughs and says actually it’s 45 years.

The needle is unleashed, explodes into my belly with almost no pain whatsoever. My next shot is 9th April. I’ll be booking Angela early to avoid disappointment.

Practise Nurse

Having read the original article, Marnie, a practise nurse, got in touch. She has some interesting insights:

‘Although this injection (Zoladex) is fairly standard, originally nurses were not allowed to do it, only a doctor and back then they used to use a local anaesthetic. Over time nurses became deemed competent to do it, so that job is generally handed down. Research also shows that the local anaesthetic causes more problems than it solves so we stopped using it quite some time ago.

As with any task we do, we get better the more we do it, even in a very large surgery there may only be 2-3 patients on it at any one time so our skills can get a little ‘rusty’.

Because of this it is often left to one person only for these appointments, so they can keep their skills polished up. The drawback is, this treatment should not be delayed and if a (member of) staff is off sick, or (has) left, someone else should take over to make sure it is given on time. A new nurse or locum may not yet be trained to do it, so it is down to ‘slasher’ as a temporary solution.

I give my patients the choice of standing/sitting/laying down when they have it, sometimes a different position may help reduce the pain. I have even over the years had the odd patient who learned to do it themselves, rare but if you are brave enough!!’

This reminded me that the very first hormone injection I had was at Guy’s Cancer Centre where the nurse gave me a pain free shot standing up. I’ve suggested this to other nurses and doctors who’ve looked at me like I was mad.

Unfortunately, Marnie is also a cancer patient and is waiting on scans to see if her treatment has worked. Thanks for getting in touch Marnie and I sure hope it has.