Prostate Cancer - my diagnosis, treatment & what I've learnt so far

I published an article here on 21st?July 2022 about prostate cancer after I had been diagnosed with the disease. As this is #ProstateCancerAwarenessMonth and my situation has developed, I thought I’d publish an update on my progress and some things I have learnt along the way. (Sorry if this goes on a bit but this is so important). My article triggered a fantastic response from loads of people. Quite a few people shared their own or a relative's experiences. Most importantly, lots of people said they were going to get tested - which is the whole point of being open and honest about my situation.

Since I was first informed that my PSA score was raised, I have had 7 consultants’ meetings, an MRI scan, a PET CT scan, a transperineal biopsy and 3 GP/nurse visits. The outcome of all of that is that I now have my diagnosis and have a treatment plan.

In my last post I explained that I had a Gleason score of 9/10 (5+4) which shows the aggression and spread of the cancer within my prostate. Following the PET CT scan, we now know the cancer has spread outside of my prostate and is in my lymph nodes in my rectum which is very unusual. I also have a lesion on my sacrum (at the base of my spine just above my tailbone). They don’t know yet if that is cancerous.

The spread adds complications to my treatment. Surgery has been ruled out as I am otherwise a relatively fit and health 62 year old and from a quality of life perspective surgery would be life changing (including removal some bowel and my rectum). My oncologist was also very clear when he said that surgery with all the changes it would entail would not solve the problem - “the cancer will already be elsewhere we just can’t see it yet”.

In technical terms, I am now Stage 4 as the cancer has spread to other organs/vessels. They have been very clear with me that my cancer cannot be cured but they do aim to control it. It doesn’t take a genius to imagine the feelings going through my head with the thought of incurable Stage 4 cancer which is now out in my body.

However, prostate cancer does react well to hormone therapy and I will be having a mix of this and radiotherapy. My hormone therapy has already started. That involved taking one drug for a month first as the first bout of hormones actually spike your testosterone and cancer to start with and this drug suppresses that. The base hormone, which I started a couple of weeks ago, I have by injection monthly to start with and three monthly thereafter for the rest of my life.

I start on the next level of hormones two weeks time. This one has a bunch of side-effects and I will be on steroids to counteract some of those. All the hormones have a range of side effects which vary from person to person (including hot flushes, putting weight on, man boobs, insomnia, depression etc) – all of them weaken your bones (causing osteoporosis) and neutralise your libido and sexual function. I will be on additional drugs to try and counteract the osteoporosis and that will be factored into my diet as well. The thought of being chemically castrated is hard to get your head around but I'd rather be alive so I'll just have to get used to that.

In January, I will start my radiotherapy which will involve 5 sessions a week for 4 weeks at Worcester Royal. Radiotherapy has a different bunch of side effects (some of which can last several months after the treatment) and I will need to alter my diet again during that period.

So, what have I learnt and what are my top tips?

1.?????I still have no symptoms. I might pee a bit more frequently than I used to but nothing noticeable or out of the ordinary for a 62 year old bloke. Yet I have Stage 4 cancer and without having found that it would have killed me. I aim to die from something other than prostate cancer. So guys – just get tested! Preferably every year. I had 9 annual tests with a very low PSA score and then, thanks to no tests during COVID, got into my current state in just 2.5 years. So don’t dick around.

2.?????If you meet resistance from your GP – insist on a test (or go elsewhere if they refuse). I find it staggering that one of my besties, when going for a test on the back of my diagnosis, had push back from his GP. “Why do you want this, you had one a few years ago and you’ve got no symptoms?” The PSA test is not totally accurate but along with a simple physical examination and watching out for symptoms is the best we’ve got as a starting point.

3.?????If you have to see a consultant to receive some results, take someone with you. For my first results meeting, I was on my own (in part because I think I am Peter Pan and didn’t think there was anything wrong with me). I did not hear anything after “Your Gleason score is 9/10 – I am very sorry to tell you you have very aggressive prostate cancer”.

For subsequent meetings my wonderful sister-in-law has come with me. As she is a retired doctor that’s even better in translation and support terms.

4.?????Make sure you ask that you are copied in on all the follow up notes and letters. I had one phone call where a consultant told me “the good news is it hasn’t spread to your bones” and “we aim to cure you of this”. Reading the actual notes and letters subsequently showed that the spread to my bones is actually “indeterminate” (they don’t know what my sacral lesion is) and that the Multi Disciplinary Team in charge of my care regard me as incurable. Subsequent meetings with my oncologist allowed us to ask about this and get the true picture which was not what I was told on the phone.

5.?????Find someone to look after you who you can trust and have some chemistry with. My oncologist opened our first meeting with “Now, tell me what you understand from what you have been told so far?”. What a great question – and not just for medics.

In my experience, in dealing with Lit as well as now my own experience, I have noticed there are medics who are treating a damaged brain, a cancer riddled prostate or whatever and others that are dealing with a person. My oncologist recommended that we started my radiotherapy in the New Year rather than early December “given the year you’ve had, you need that time with your family and to let your hair down at Christmas before we start this”. He is concerned about me as a whole not just my cancer.

There are lessons for professional advisers in all of this.

I hope to use any influence I have as a Governor of the University of Worcester and the Chair of the Kildare Trust that has made a seven figure bursary donation to the new Three Counties Medical School to ensure doctors trained there have this holistic, empathetic view to their patient care. I am hopeful they will given the University’s great values.

6.?????I have learnt/experienced/read a lot about grief in the last few months. The part that Lit’s death played in that, after 15 years of increasingly challenging decline and caring, is obvious.

I’ve read a bit about some people seeing retirement as a cause of grief. I kind of get that – especially when you have been in a leadership position for a very long time and are someone who built their career around relationships, internal and external. As a couple of people mentioned to me, going from being well known and relatively important (in my head at least!) to being on your own at home is a big step. As those that know me will appreciate, I’ve actually got so much going on (without the cancer!) that this is not a huge thing for me but it must play a part.

Layer on an incurable cancer diagnosis and it is no surprise that this is an enormously challenging period mentally for which I will continue to get counselling and support.

7.?????In my reading and connecting with other people going through similar challenges, I have come across a concept called “Toxic Positivity” for the first time. Whilst it doesn’t slip off the tongue, I think “Well-meaning but unhelpful positivity” would be a better descriptor. I have seen this first-hand in the aftermath of Lit’s death and my cancer diagnosis.

In struggling to know what to say, people often come out with well-meaning comments such as “it was great that she got to meet the baby” or “it was good that she died peacefully at home and her suffering is over” or “you’re strong and a fighter I know you will get through this”.

Inadvertently, this often closes off the conversation and the opportunity for the person in question to be able to say “actually I feel like shit/am falling apart” or whatever.

8.?????I have seen a particular variation of this in the case of Prostate Cancer, well meaning again but often based on a lack of knowledge of the disease. I’ve had quite a bit of “oh, my dad/uncle/brother had that and he’s fine now” or “nearly all men have prostate cancer, most just don’t know they’ve got it and it doesn’t cause them any problems.” Not with a Gleason score of 9/10 and it spreading around their body they don’t. Well-meaning but frustrating to the recipient going through seven degrees of hell.

It is of significance that most Critical Illness policies do not pay out on Prostate Cancer diagnosis where the Gleason score is less than 6.

9.?????“Fight the good fight”. You may have already seen quite a bit about the debate around someone “losing their brave fight or battle against cancer”. I am on the page that this is unhelpful and disrespectful of people who have cancer.

My mum died from breast cancer when she was 55. My sister has survived breast cancer in her early sixties. Much as I love her, my sister has not battled harder than my mum. My mum did not die through any lack of effort. Medical science has simply moved on, picked up my sister’s disease sooner and was better at dealing with it.

How long I survive will not be down to my fight or battling. It will depend on how my prostate cancer reacts to the medical treatment the specialists recommend and apply to my body. I had an early decision to make – do I want to undergo treatment or would I rather do nothing and die fairly quickly? Making the blindingly obvious decision for self-preservation was not brave and in fact was so obvious that it was not actually discussed.

There is a lot that I can do to try and get my body in the best shape it can be to deal with the symptoms and shit that is coming my way from the treatment (exercise, diet, moderating alcohol, trying to improve sleep etc) but none of that actually impacts my cancer and my body’s reaction to the treatment.

10.??Picking up on both getting tested early and the “fighting point” it is worth reflecting on two well-known people who died from Prostate Cancer. Bill Turnbull the well known TV presenter died recently and did an amazing job in raising awareness of the disease. From all accounts he was just a great bloke. But by his own admission, he ignored the warning signs for years and when he finally went to the doctor his PSA score was 583 when it should have been below 4. He did an great job campaigning and took all the treatment he could get but he didn’t lose a “battle”, what he did do was miss the opportunity to go and get tested earlier.

The same can be said for one of my heroes, former England Number 8 Andy Ripley. I have always thought being fit, healthy and eating well would keep most things at bay. Ripley was not only an international rugby player but was an international 400 metre runner, world veteran rowing champion, and won International Superstars. He also used to ride to work in the City on a motor bike wearing a bowler hat carrying an umbrella! His first PSA score was 133 (Gleason score 7) and at one point shot up to 1,696. The disease killed him when he was 62. An earlier diagnosis might have been able to keep this remarkable man alive longer. He too campaigned for more men to get regular tests.?

Andy Ripley in full flow for England and near the end of his life. Photos from newspaper articles.

11.??Trying to be positive. I am sure that trying to have a positive mindset, having things to look forward to, trying to be a valuable member of society that makes a difference, using this as an excuse to get my body into the best shape it can be and so on will help both me from slumping into depression – and will help those that love and support me in seeing me being upbeat. But let’s be clear, it doesn’t alter whether the cocktail of hormones, drugs and radiation do sufficient to control the impact of the cancer on my body long enough so I can die from some other cause.

12.??Setting targets and keeping busy. Having being widowed and retired, feeling fatigued and at times depressed, the easy thing to do when no one else relies on you would be to stay in bed, slump in front of the TV, curl up in a ball, drink a lot and cry or whatever. And whilst it is actually important to do that sometimes, and I do (other than drink a lot), I have found setting myself a busy schedule be it social, sporting, travel, charity trustee or University Governor work helps keep me motivated and needing to do the healthy options of diet and exercise to put me right place to not let people down.

So far since my diagnosis I have been to a weekend party in Portugal, a week in Scotland with my son and I'm just about to do 7 days' walking on the next bit South West Coast Path from Clovelly to Perranporth averaging 14.5 miles a day some friends who I started it with last year. I'll need to see how I get on with the fatigue and rest when needed.

13.??Please don’t assume this can never happen to you and take out some insurance cover whilst you are as young as possible. Lit and I took out insurance on both of us with various policies when our kids were young. Lit’s policies ultimately funded a lot of her specialist care (neuro-physio, trainer 3 times a week at home for 15 years, speech therapist, loads of special kit in the house etc etc) and her critical illness policy was used to build her ceramics studio and kiln which gave her such pleasure whilst she was able to use it.

My policies were primarily aimed at the period whilst the kids and Lit depended on me. I am now using my remaining critical illness policy money as you would expect any sensible Chartered Accountant with 40 years’ experience who has retired in the face of a recession, staggering inflation, falling stock markets and rocketing fuel costs – I’ve bought what I’ve wanted for 30 years – a 1976 5.9 litre V8 Bristol 411.

14.??Friends. I have written on here before when describing my former role as Lit’s main carer of the importance of using your friends’ support – and, critically, asking for it. I have a very close knit circle of amazing people who help me along with my family. And a huge part of that is just listening when I want to sound off about the injustice of all of this.?

15. Prostate Cancer UK have a fantastic informative website and the Forum is a very supportive environment to share experiences with other sufferers. (But do beware of amateur medics).

16.??If you said "Stage 4 Incurable Cancer" to me 4 months ago, I would have assumed that means "Terminal Cancer". It does not. The hope is that the medical team can control my cancer sufficient for me to enjoy the rest of my life for as long as possible and actually die from something else (albeit we don't know how long that will be).

As I mentioned last time, it is my aim to speak at my first grandchild Milo’s 21st?birthday and he is 4.5 months old. Since then, I have been thinking of appropriate ways to leave this mortal coil and have come up with a provisional list. My stretch target (to keep the Linkedin business focus) is to survive until age 90 and then either:

A – lose control of Morag my Morgan at the bottom Esse at Shelsley Walsh trying to do a PB or

B – die from a heart attack or shock at getting up and down from a bunker (a couple of my golf chums have said this is totally unrealistic, and not because of the age)

C- fall off a table rat arsed at the Worcester Rugby Club Former Players’ lunch.

So please take your health and life seriously guys – just get tested.

#grief #prostatecancer #prostatecancerawarenessmonth #mentalhealth #ProjectMilo21