An unwelcome journey with prostate cancer

As Robert Burns said, 
'The best-laid schemes o' mice an 'men
Gang aft agley'. Too true. 

Mine were derailed by a diagnosis of early prostate cancer after returning from the Canadian launch of  my co-edited book The Future Control of Food in Spring 08. In summer, it became clear that the medics thought it might need treating rather than simply being kept an eye on – active surveillance (prostate cancer is generally very slow growing) - and I had a tough time deciding what treatment to have and when. I could not follow-up the various work ideas I had that involved travelling or agree to meetings far in advance, so focused my activities in the UK.

I decided to share my experience with early prostate cancer because the day after I decided to have the recommended radical prostatectomy operation, I heard I was short-listed for the BBC Radio 4 Food and Farming Awards. I thought it would be a good idea if the Food Programme did something on diet and prostate cancer, given everything I had read about it, as well as knowing in general that about one third of cancers are diet-related, and talked to them about this.

I was amazed, over 6 months later, when it finally turned into three highly-edited audio diary broadcasts on BBC Radio 4 You and Yours in mid June 09, (10-12th), with a message board for listeners to share their experiences, followed by an edition of the Food Programme on prostate cancer and diet on June 14/15th. Obviously, they focused most on the food aspects – when in fact I guess I had thought most about death initially, then sex and incontinence, as things most likely to be affected by the treatment.  Of necessity, they greatly cut what I had recorded in my audio diary anyway.

Further reflections

Having read through all the message boards comments, I would like to mention some things there was not time for the programmes to cover. This is, of course, my experience, everyone is different. 

Prostate cancer is complex, dealing with it still full of uncertainties. We each have to make up our own minds, as I discussed in a Radio Leeds interview. My hope is that sharing these thoughts and feelings will help others to deal with it if they face it, help encourage more work to get better diagnostic tools and greater certainty into whether and which treatment options are best for each person, and to get greater notice taken about, and more research done on, the role of diet in prevention and management of prostate cancer, and cancer and other non-communicable diseases in general.

It has been quite hard revisiting this as part of me wants to say done that, it was hell at the time, now let’s just get on with the rest of life and my work; and just hope it doesn’t come back and then I would have to look at the next stage. But having started it, I should try and clarify some things that did not come through on the tapes and programme.

Diagnosis

When I had the PSA test initially (Nov  07) I had no symptoms. However, as my wife reminded me, several months earlier I’d had the odd slight leak, which had passed but had concerned me at the time – but, perhaps typically, I’d not talked to the doctor and just hoped it would pass which it did. I had the test because a good friend had had prostate cancer and had, for some time, been encouraging his male friends to have the test.

The initial test was slightly high for my age (3.6) and I was retested when I’d gone to the doctor for other reasons after I got back from Canada in March 08. By then the PSA had almost doubled so there was an urgent referral to the prostate assessment clinic, which led to a biopsy and discovery of one core with cancer, Gleason 6 (3+3) in mid-April 08. 

The suggestion then was that active surveillance would be the probable treatment, that I could go away for work then a long planned holiday, and revisit the consultant in mid-June. It was after that visit, and a continued PSA rise (from 8.5 in beginning April to 14 in mid-June!),  it became clear they thought it might not be as slow growing as first thought, I was referred on to another consultant, and started to panic.

Making changes

I went off to the Penny Brohn Centre at Bristol, embarked on dietary changes, partly influenced by them and partly by reading Jane Plant’s book ‘Prostate Cancer’, as well as embarking on a variety of other complementary therapies – herbal, homeopathic (my cousin is a homeopath and despite not being a believer I accepted her help), energy healing, relaxation, did more exercise, joined a Tai Chi class and went to early morning Tibetan yoga class once or twice a week.

So it was not just diet I changed, but I tried whatever seemed to help or might have an effect – and since I was not conducting a scientific experiment in which you’d never do all those things at once, but trying both to deal with the cancer and be as fit as possible if I had the treatment (again very wise advice from my friend who had had it) I was happy to try most things. And they did help, as well as being able to talk through the thoughts and feelings I was having with a range of friends and write about them.

Tough decision

In the end, I went with the medics view and decided to have treatment since I appeared to have an aggressive form that seemed to want to grow, and that since it was early, that MRI and bone scan showed no evidence of spread, I had a good chance of cure (which as one medic said to me they never actually say until you die of something else). At the time, I found it very stressful mentally and while I could get off to sleep OK once I woke, whether 5, 6, or 7 am I could not get back to sleep again as all kinds of possibilities and worries went through my mind.

Because of where I live, I ended up passing through several consultants' hands and moving from my local NHS Trust to a neighbouring one, the local centre of excellence where the operations were now done. Each of them had a system of putting new patients in touch with others who had had treatment and I found it helpful to have a chat with them and hear different experiences. My mate and his wife were also very frank and helpful in talking me and my wife through the detail of what to expect after the radical prostatectomy operation.

In the end, though, it’s your decision, your sense of how much risk you can cope with, and how much the side effects matter. I decided on a “both and” approach – have the treatment and do whatever else I could to deal with it as best I can. The surgeon had said he had three priorities – to save my life, keep me dry, and keep me potent, in that order. He also said he’d do it key-hole if he could but reserved the right to do it open surgery if necessary and that he’d spare the nerves around the prostate if that was possible once he was doing the operation and could see if there was any spread to the edge or not.

The operation

On 21 October 2008, I was wheeled into the operating theatre at Bradford Royal Infirmary for a radical prostatectomy. I left the ward at 8.45 on Tuesday morning and woke up back in the ward at 4.05. I was a bit taken aback in the entry to the theatre to be told by the anaesthetist that they’d like to give me an epidural, with a one in 200,000 chance of paralysis after, as well as the general. By this time it was as if I was watching my body being taken over for the operation and I just let them get on with it.

Waking up back on the ward I had no memory at all of anything after lying back on the bed after having had the epidural – not even talking to the nurse in the recovery room outside the theatre after my 5 hour keyhole operation finished.

By the time my wife came to visit about 5.30, I was a little more awake but still very groggy from the general. There were up to 4 things being dripped into me through a thing in my left hand – a glucose solution, antibiotics and every few hours paracetamol. I also had a button to press to self administer morphine for the pain if I wanted. Surprisingly, the pain was not too bad and I used very little morphine over the following 16 hours that the drip was attached.

It was a bit of a shock to look down my body and see it shaved from mid chest to genitals, and see the plastic tube sticking out of my penis. Only later that evening, when a nurse came to check it, did I realise there was another tube coming out of my right side draining blood from the wound. It was a long night, being woken every hour to have my temperature, blood pressure and blood oxygenation(?) checked. I’d doze for what felt like hours and look at the clock and see only 5-10 minutes had passed.

When the consultant came round the following morning about 9 ish I was pleased to hear the operation had gone well and he’d been able to spare both nerves. He also said the drain from the wound could come out but that the catheter would have to be in for 2 weeks.

After he left I was helped to wash, a bit of a strange feeling, and took my first walk, with catheter attached, across the ward. Quite amazing considering what had happened the day before. I spent the night in hospital as I did not feel fit enough to leave, and it was a good job as the worst pain I had came when I tried to have a bowel movement – and a couple of hours after that I was sick – I didn’t believe how fast you could move to get to the toilet while carrying a catheter bag.

Recovery

On the Thursday morning a doctor came round, who was one of the operating team, and checked my wounds and said I could go home. Great. Soon after my wife and a friend came to collect me and I walked very slowly, with help from her, to the car.

The district nurse came round the next day to bring more catheter bags and check I knew how to manage the catheter. I was quite weak at first and could not do much, walking round the house for the first few days then a little in the garden and then a bit further. Some friends who came round to see me when I came out warned me that I might feel quite depressed as the general anaesthetic wore off – and I was so glad they had for at the weekend I felt awful and very negative and angry about everything but that lifted a bit on the Sunday (not that I still don’t feel angry occasionally both with the cancer and the after effects).

I was surprised to find I had no pain from the wound but that during the second week I started to get pain at the end of my penis from the catheter, which at times was excruciating, so I was very relieved when this came out when I went back to the ward. Even so I was walking out every day, not very far but steadily with a stick and support from my wife. I started walking along level ground (not that easy where I live), gradually extending the distance, and then adding some uphill walking.

Once the catheter was out back at the ward I had to learn to pee again. At first I did not feel anything, so had to go by the clock – the nurse said if you wait till you feel the need it will be too late. I was wearing incontinence pads that the district nurse had provided after I’d had the catheter removed but she had told me she thought I’d be dry before they were finished. I hoped she was right but did not quite believe her as it felt quite a job to get there. The incontinence was much less problematic than I feared – I had expected to leak all the time but did not, just if I left it too long to pee or moved suddenly.

I did have a urinary tract infection which needed antibiotics and which on checking after the first course was still there so had to have a second course but apart from some burning sensation when peeing this was not bad. During the next few weeks I began to know when to go. I’d been checking to see how heavy the pads where when I took them off (the science training background in me) and had been managing with just one a day. As the amount fell away to 10 ml or so I started to cut the pads in half and on Christmas day 2008 did not wear one at all – that was quite a Christmas present!

Pre-Christmas present

My pre-Christmas present was when we went back for the post operation consultation to be told the cancer had all been contained, was not near the margins and my PSA was 0.04, virtually zero, and this result was as good as it gets. So the prognosis was good but I’d be monitored every three months for the first year.

The wounds had healed well, and had given me no pain but I had been very careful not to lift stuff – and my family had been very good about reminding me and carrying things – which feels a bit odd when you are out. My wife and I had gone away to Whitby for a few nights before Christmas, my longest drive and I’d felt good and been very active without rest one day. The next day, however, I could not get out of bed, I was so shattered. As one of the nurses said, your body will let you know when you’ve done too much.

That set me back a bit and undermined my confidence but after a week or so I was back to a good level of activity – walking a mile or two a day and more and more strenuous walks. My GP had warned me to take three months off, and the friend who’d had the operation a few years back had said he’d gone back too soon, so that’s what I did, building up my activity to a more normal level as I approached going back to work again – but even then I tried to do it in a phased way (which lasted about 2 weeks).

A new reality

The worst part of the experience had been the reality of living with being impotent. I’ve found that psychologically really upsetting, especially after the first few weeks when I was simply learning how to live normally again, but as I’ve got stronger it’s been very annoying. I know I’m being very impatient and I’ve done very well with the physical recovery and incontinence and if I’m going to get spontaneous erections back it could take a long time.

I started with the rehabilitation programme within a couple of weeks of the catheter coming out – low dose Cialis and using a vacuum pump to get blood flowing in the penis again. At first I really resented having to do this and found it difficult to use the pump right but as I persisted, not without the odd burst of anger, it got easier and I could see some, very slow improvement in my penis. At first it had felt like a bit of dead, cold flesh, with no life in it at all. And it didn’t even know when I was peeing. Slowly that improved but it still feels very insensitive compared to before.

My wife had been fabulous at helping me and very patient but understands my frustration at nothing happening despite anything that we might do (or that I might do, and I have been trying everything). I’ve been warned it could take a year or even 2 before I’ll know if I’m going to be lucky and get spontaneous erections back or not, and that seems a very long time at the moment. In the meantime, I keep trying with the various aids they provide at the erectile dysfunction clinic, as well as have various massage and energy healings and there are some slow signs of improvement. Still I suppose it’s better to be worrying about sex than dying, or the result of the next PSA test, although as each one gets nearer I do get nervous about it.

Diet and lifestyle

Now I’ve had the operation I’ve kept on with my basically vegan diet, cutting out all dairy products (on a balance of probabilities from reading Jane Plant and others I thought it the way to go) but with some fish and a bit of lamb very occasionally, upped the intake of cooked tomatoes, pomegranate juice and seeds based on the various things I’d read and been told might affect the chances of the cancer developing – and that had seemed to bring my PSA down. There is a lot of uncertainty here and I’m trying to figure out just what I can do with my lifestyle – exercise, diet etc  - to minimise any chance of recurrence of the cancer and stay fit and healthy.

The bigger picture

There is a lot of uncertainties surrounding prostate cancer, from the diagnostic tools to treatment methods and role of diet. My hope in sharing my story, as I said above, is that it may help others facing a diagnosis to deal with it and prompt more and better research and for the role of diet to be taken more seriously by the medical profession.

We are very lucky in Britain to have access to treatment and be in a country with, for whatever their shortcomings, freely accessible medical services and skilled staff. As a friend of mine who had recently returned from working in a very poor country said, a doctor there had said to him, he wished he did deal with cancer and many of the other non-communicable diseases but generally people did not live long enough there to get them.

We know, though, that following a western style diet, with its high levels of processed foods, fat, sugar, meat and dairy products, is linked to many non-communicable diseases like cancer and heart disease, as well as there being many questions about the sustainability of industrial, fossil-fuel based intensive farming systems on which it is built.

Health, environment and fairness, are linked through the food we eat and the system within which it is produced. And it is a system that illustrates why we need some fundamental changes to the way we do things – if we are to end the scandal of hunger and malnutrition now affecting a billion people, to stop the epidemic of overweight and obesity that affects another billion or so, and achieve a well-fed, balanced world able to deal with the challenges of climate destabilisation and spreading out the world’s resources more fairly. That’s what I want to focus on with the time I’ve got, however long that might be, not being someone who has cancer.

Resources

Here are just a few resources I found helpful when faced with early diagnosed prostate cancer (links checked July 2024).

WARNING I have found everything around prostate cancer is confusing. As well as the advice of my doctors, I used these various resources to help me understand the state of affairs concerning diagnosis, treatment and lifestyle change options when I was diagnosed.

In the end, as one of the doctors said, you have to decide what you are going to do. For me, that was based on a balance of probabilities of the possible outcomes from different treatments, dietary factors that might affect it and what I felt I and my family could live with. You will find differences of opinion in interpretation of the evidence and differences of emphasis in the materials.

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Organisations

Prostate Cancer UK have specialist nurses and volunteers who have all been affected by prostate cancer you can talk to over the phone. They also produce very helpful materials including an excellent tool kit to help you think through the issues.

Please DONATE to Prostate Cancer via my JustGiving page here

MacMillan Cancer Support merged with cancer backup in 2008 and they also provide useful materials and support.

Yes to life has information about all kinds of cancers and complemnetary therapies. I spoke briefly at a seminar they had on prostate cancer and diet on 9 November 2013

These are just a few of many in the UK. There are many more in the USA, some of which may also have useful information on line - see below

Books

I read various things to help me understand more and become better informed - including materials produced by the above groups.

Nice Guidelines on Prostate Cancer by the NHS National Institute of Health and Clinical Excellence (Nice). A very detailed discussion of current best practice. I only read through it about the first stage - and did not want to go beyond that unless and until I have to.

Self-help groups

Often there are local groups connected with different treatment centres as well as online support groups. Or you may make your own, through people you meet with similar problems.

This site gives a list of American ones, with the one on issues around intimacy being the one I followed for a while.

Talks

Lifestyle after prostate cancer - The Facts

Listen here to a recording of a talk with Q&A afterwards by Prof Robert Thomas of Bedford and Addenbrooke’s Cambridge University Hospitals and Biological & Exercise Science, Coventry University given near Leeds on December 12th, 2015. You can download a powerpoint of the pdf that went with his talk here and read more about his work at www.cancernet.co.uk.