Let’s talk about cancer: Part one

Jim was diagnosed with prostate cancer in 2017 at the age of sixty-three. In his series, Let’s Talk About Cancer, he shares the challenges of talking about the disease, how it can mess with the mind, and ways it can affect family and friends.

Blitzed and confused after a diagnosis

You’ve just been diagnosed with cancer. You feel blitzed, confused, and frankly terrified. Who are you going to tell?

There’s certainly no one answer to that question, and there’s no right answer either. You’re scared and bewildered, and of course we know that if you tell someone you have cancer, then their first thought is going to be: “Oh he’s going to die soon.”

Cancer is a big bag of unwelcome knowledge that you suddenly find yourself hefting on to your shoulders. You may want to turn to family and friends, or you may not. But one thing is certain: it’s tough to turn cancer into small talk.

Read on…

Prostate Cancer Screening At A Supermarket

It sounds like science fiction, but according to Mark Emberton, Professor of Interventional Oncology at University College London, prostate cancer screening could be coming to a supermarket near you.

10-minute scans

Professor Emberton is in charge of a clinical study which he’s hoping will transform prostate cancer screening. The $6.5 million trial, which started in August of 2019, stalled in the spring because of covid, but is now back on track. His team is looking at scans that take only ten minutes, which could potentially be rolled out to the general population.

I sat down with Mark to hear about his work.

Prostate cancer screening difficulties

In the UK, there are only a few nationwide screening programs, including breast cancer for women and bowel cancer for men.1 Prostate cancer is now the most-commonly diagnosed cancer in England, but nationwide screening has proved elusive, as it has such a poor diagnostic record.2

Traditionally, tests start with a digital exam followed by a PSA blood test, neither of which are particularly accurate or trustworthy. Around 75% of men with high PSA levels don’t have cancer, but about 15% with normal PSA levels actually do.3,4 I should know: when I was diagnosed with a malignant tumor, my PSA stood at just 5.03.

Read on.

When will the side effects go away?

Three years ago I had my first hormone jab. Now I’m going cold turkey. My last shot was three months ago, and the course of treatment is complete.

All good, but I want to know if and when the side effects of this hot flashin’, erection robbin’, mood swingin’, bone thinin’ son of a gun are going to disappear.

A big needle with a job to do

As most people reading this will know, Zoladex (my preferred hormonal cocktail) prevents the production of testosterone, which is something prostate cancer loves to feast on.

Zoladex is described as being “administered subcutaneously every 28 days into the anterior abdominal wall below the navel line using an aseptic technique under the supervision of a physician.”1

What Zoladex fails to mention is that it involves a spring-loaded instrument of torture which the Spanish Inquisition would have instantly co-opted as one of their toys, if only Big Pharma had existed in the 16th century. It’s a big needle with a job to do.

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…

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.


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.’