In May 2018 I underwent keyhole surgery to remove my prostate gland. The surgery followed a diagnosis of early stage prostate cancer over a year before. Three identified tumours were small, and not growing rapidly – Gleason Score 6 for those of you in the know. But the location of one showed the potential to spread. Given my relatively young age – mid-fifties – treatment was recommended over ‘watchful waiting.’
The treatment and its after-effects are now behind me. Hopefully the prostate cancer too. According to a biopsy report, there was a clear margin around the removed tissue and I am unlikely to have a recurrence, or, to use medical speak, I have a 97.5% chance of a PSA less than 0.2ng/ml at 5 years. As I have discovered, doctors don’t like to use words like ‘cure.’ Or ‘death’ either, come to think of it!
So much for the medical facts. Perhaps more interesting are the lessons I have learned along the way. Lessons I’d like to share. This blog is longer than usual, so here is a list of the main points I cover, in case you want to skip ahead:
- Early diagnosis can be the difference between minor inconvenience and having your life turned upside-down.
- Being in great physical shape won’t stop you getting cancer. But it will help you bounce back from treatment.
- You don’t know how you will react to a cancer diagnosis until you get one.
- Having cancer is different for everyone.
- You are in charge of your treatment – not a medical team.
- Prostate cancer may be as much a psychological journey as a physical one.
- Meditation may not cure your cancer. But it helps you cope with it.
- Ultimately, it’s not the diagnosis, but what you do with it that counts.
I’ve explored each of these lessons more fully in the pages that follow. It is my heartfelt wish that if you or your loved ones can in some way benefit from my own experience, then I’d like to share whatever may be helpful.
The following lessons reflect my own experience. They are personal and may or may not be relevant to you. Some of them may seem like statements of the obvious. Others, perhaps, confronting. The last thing I want is make anyone unhappy – but equally, ignorance is only bliss for a short time – it’s your long-term wellbeing that matters most. I suppose I should also add that I have no medical training and none of the following should be taken as personal medical advice.
As one of my wonderful Buddhist teachers once explained, ‘a realisation is when our understanding of a subject deepens to the point that it changes our behaviour.’ Knowing the following as concepts is one thing. It’s when they change our behaviour that they really matter.
- Early diagnosis can be the difference between minor inconvenience and having your life turned upside-down
Many years ago I read a book called ‘Man to Man, Surviving Prostate Cancer’ by Michael Korda. The clear message was the importance of monitoring PSA levels, something achieved with a simple blood sample. I’d like to thank Michael for writing his book. It prompted me to get monitoring, without which it’s very possible I could be sitting here, oblivious to an escalating problem I may have only recognised once it became a very much more serious threat.
If there is one message you take away from this blog, please let it be this: get monitored! If you’re a bloke, have your PSA levels regularly checked! If you’re a woman, don’t skip your mammograms and pap smears! There is no good reason not to monitor your health. “I’m too busy,” and “I don’t like doctors/needles/the process” are excuses I’ve heard. Bluntly, no one is too busy to die. Or to suffer from serious illness. And if you don’t like doctors/needles etc – who does? – all the more reason to catch things at an early stage. This is the best way to reduce the likelihood of spending your time hanging around in hospitals. Not to mention spending your hard earned cash on medical treatment.
The specialist I first saw gave me my cancer diagnosis in an almost congratulatory way: “Of all the cancers to get, this one is the best!” he told me, as if I was a person of great discernment! What he meant was that the relatively small and slow growing tumours allowed plenty of time to consider my options, decide on a treatment plan, and schedule it into my life to cause minimum disruption and maximum likely success.
I can’t say that prostate cancer is definitely behind me. At some point before surgery, cells may have moved out of the gland to a different part of the body, where they could be silently multiplying. Hence the need for continued monitoring. But early diagnosis means that my experience to date has been one of minor inconvenience. And I’ve heard enough horror stories about late night calls from specialists, rushed surgeries and repeated interventions with radiotherapy and hormone treatment to be deeply grateful to have avoided all that.
Get monitored! Put it in your diary or on your ‘things to do’ list, this minute! Like Michael Korda, if I can persuade just one person to act in their own best interests by regular monitoring, writing this blog will have been worthwhile.
2. Being in great physical shape won’t stop you getting cancer. But it will help you bounce back from treatment.
I was feeling in great physical shape when I got the cancer diagnosis. I was hitting personal bests on the cross-trainer and pushing heavy weights – for me! – at the gym, attending regular yoga classes and meditating twice a day. I was taking anti-oxidant supplements and drinking lots of maccha tea. Despite feeling “in showroom condition” as a friend cheerfully puts it, regular blood tests showed I had a rising PSA level. This prompted a biopsy and the diagnosis that followed.
Cancer, in its early stages, is painless and invisible. We feel just the same whether we have it, or whether we don’t. Being fit and healthy doesn’t stop you getting cancer – but it does help you bounce back. When I went to see the anaesthetist, pre-op, I spent all of five minutes in his office. He told me he had just spent an hour with his previous patient, a man with many physical complications who was taking a cocktail of drugs and presented a much more challenging case.
Surgery was four hours long, during which I was tilted, head down at 30 degrees while robotic arms, controlled by my surgeon using a computer, fiddled internally with my nether regions. Despite the invasive procedure, the very next morning I was able to walk out the hospital for my favourite flat white at a local coffee shop. Six months later, I am back at the gym, doing what I did before.
My efforts to lead an active and healthy lifestyle, rich in antioxidants and with minimised stress weren’t enough to stop me getting cancer. But I don’t regret any of them. I feel sure the quality of my life, right now, is better than it may otherwise have been.
- You don’t know how you will respond to a cancer diagnosis until you get one
By the time we get to 50+, we know plenty of people who’ve had cancer. We may have lost parents, friends, colleagues or pets. We’ve all read articles and seen documentaries about celebrities who’ve had it. Chances are, we’ve thought about how we’d feel if we received a cancer diagnosis.
I had a friend whose husband was diagnosed with cancer some years ago, and who let it be known that he didn’t want to talk about it. Whenever we met, I felt it was like the elephant in the room. If I ever got cancer, I decided, I was going to be open about it, both for my friends’ sakes as well as my own – what if someone had some useful nugget of information they could share?
When I got my own diagnosis, I told a few people initially – and was taken aback by the reaction. Tears would well up in their eyes and I’d have to spend the next ten minutes reassuring them that I was going to be okay. One family member asked my wife: how long has he got? Such is the dread associated with the word ‘cancer’, I quickly realised that a “tell anyone who may be interested” policy was going to be emotionally exhausting. I couldn’t avoid the paradox that I’d be spending all my time pumping up other people’s tyres, when it was me who was dealing with the disease! Plus, I didn’t want to spend the first ten minutes of every subsequent conversation talking about a subject that is quite frankly, tedious.
These days I completely understand why people might not want to talk about health/medical issues with their friends. It’s not that they don’t like, love, trust or respect their friends. It could be that they just don’t want to turn their lives into an extended, multi-season melodrama on the subject of cancer.
On the other hand, some people like to share their journey, and that’s perfectly okay too. I have friends who have posted regular social media updates on their treatment journey, and the response of their network is overwhelmingly supportive and positive. It’s different strokes for different folks.
There’s nothing quite like a cancer diagnosis to help us cultivate a certain equanimity. We realise, we just don’t know how we’re going to feel until we get it, nor should we judge how other people respond either. In a curious and wonderful way, diagnosis of a condition like cancer can help us let go a little. Release our expectations about ourselves and others. Realise that in this unfolding story, you can never be sure how the chips are going to fall.
- Having cancer is different for everyone
Like most people, I didn’t know much about prostate cancer, and soon turned to Dr Google. Through what I learned online, as well as from specialists, I discovered that even someone who had exactly the same size tumours as me, may have a different prognosis and treatment options depending on exactly where the tumours were located. Because one of mine was in the transition zone, and could spread to the bladder, treatment was recommended over ‘watchful waiting.’ Responses to treatment vary greatly from person to person because we have subtle, physical differences – one man’s urethra may be shorter than another, something surgeons won’t generally discover until they go in.
I have friends who have been or are going through the prostate cancer journey and it is different for each one of us. On a purely physical basis, some cancers are much more aggressive, are discovered later and require immediate treatment. Some men, going the surgery route, suffer from incontinence for many months and may be rendered impotent for as long as they have hormone treatment.
We can make no assumptions that our own experience of cancer is going to be like anyone else’s. We may support others who are having to endure awful experiences. But we shouldn’t believe it is inevitable that so will we. We may sympathise. We can certainly empathise. But we should step lightly too. Each one of us is unique, and our journey is our own making, to an extent that’s more surprising that we may realise.
- You are in charge of your treatment – not a medical team
I had always imagined that medical treatment was a bit like working through a decision tree, with medical professionals guiding you to the correct treatment. It was scientific, wasn’t it? What I found was that there is no consensus among patients who have been through the process and surprising little even among professionals.
Soon after my diagnosis I encountered someone who had spent $100,000 on proton therpy in USA. It had been utterly painless (apart from financially), non-invasive and his life had continued as if he’d never had prostate cancer. He was quite evangelical in advocating it as the only way to go.
This claim was instantly rebutted by a specialist who had had to deal with nasty complications arising from proton therapy in a patient years after the event. Cyberknife was recommended by one radiologist I saw, being the only form of radiotherapy designed to follow a moving target – every time you breathe, the walnut-sized prostate gland shifts up and down. Another radiologist (a colleague of the first) dismissed cyberknife, advocating brachytherapy, or radioactive seeds, as the best treatment for me. A surgeon meantime, was dismissive of all radiotherapies, saying that they turn the prostate gland to mush, making it impossible to perform surgery at a later point, whereas with surgery, one can always use radiotherapy at a later date to mop up errant prostate cancer cells residing in the body, should they show up – the argument that ultimately won my vote.
If you see a surgeon, surgery will be advocated. A radiologist will recommend radiotherapy. What’s more, the man – it always was in my case – in the white coat may make his recommendation having not even looked at the available information. One radiologist admitted he hadn’t so much as opened my scans when I stepped through the door, for which he was completely unapologetic. I wondered if he would have been quite so cavalier if I had been a well known business tycoon. Another specialist recommended watchful waiting, rather than treatment, until I asked a question about the PSMA Pet scan, a detailed form of imaging I had had done at my own initiative and expense. Only then did he study it closely – and discovered the potentially troublesome location of one of the tumours. Both the scan and the question were a game changer. Both arose because I was proactive.
Specialists may be great at what they do, but they are busy. You are only one of many, many patients. They don’t have the time or interest to look at your case from every angle. We don’t live in an ideal world. Ultimately, you are in charge of your treatment, not the medical team.
- Prostate cancer may be as much a psychological journey as a physical one
I have been very fortunate through my cancer journey – the most pain I have felt during the whole experience has been that of a needle being put in my arm at various times. Chemotherapy, of the kinds used for other cancers, is not used to treat prostate cancer. There has been none of the nausea, hair loss and fatigue that characterises some of the most grim physical challenges of cancer treatment. In truth, I’ve felt physically far worse just having a bad cold.
The psychological challenges are, perhaps, greater than the physical ones. To begin with – mortality. There is no guaranteed cure for even the least aggressive prostate cancer, like the one I had. Specialists talk in terms of percentages. Who is to say I won’t be in that 3% of people who are not so lucky? It’s unlikely this disease will kill me in the next few years. But who knows what lies down the road?
Then there is the reality of having to wear incontinence pads after surgery. In my own case, I was wetting myself every time I bent down to stroke the cat, whenever I got cold, or was stressed by loud noises. When you’ve been surgically regressed to nappy-hood, and have no idea when, or how much of your continence you will recover, the experience of constant wetting yourself can leave you feeling ground down, frustrated and demoralised.
It was only when reading up on incontinence that I discovered how common it is among women – one in three of whom can be provoked by a sneeze, laughter or shock. It was a recognition that really surprised me – I guess it’s not exactly the kind of thing you talk about while out socialising!
Sex can also not rear its ugly head. The nerve-sparing surgery enabled by keyhole surgery, means that the mechanics required for an erection can be kept intact. But there are no guarantees how long it will take for bruised nerves to heal, or to what extent you may be able to stand to attention. One thing you definitely say goodbye to is geyser-like orgasms – henceforth they are dry. Does this mean that as a sexually functioning man, you are diminished? And how much does this matter to you – and to your wife or partner? For those men whose sense of identity is founded strongly on their sexuality, the psychological burden of the disease will be very much greater than the physical one.
Some men opt for different forms of radiotherapy, including Proton therapy, instead of surgery, to keep their sexual functioning intact. Others, my specialist told me, can’t wait to have surgery because they can’t stand the idea of having cancer cells multiplying in their body – even at a relatively slow rate.
We’re all different. What constitutes quality of life for one man may be very different for another. Prostate cancer is as much about charting a psychological journey as a physical one. And again, the lack of definitive, right or wrong answers means it’s a journey in which we have to investigate, to learn, to be open, and to recognise the unique nature of our personal reality.
- Meditation may not cure your cancer, but it helps you cope with it
When I first got my diagnosis I was somewhat indignant: ‘But I meditate for at least an hour a day. Often for two. I am as far away from stressed as you can get. How dare I get cancer?!’ Meditation may very well impact at an epigenetic level. But not in my case. Nor did my continued meditation have any impact at all on the multiplication of cancer cells which continued steadily over a period of time – as evidenced by my PSA scores. Much as I wished to, I wasn’t able simply to meditate the cancer away.
What meditation did do, however, was make it easier to deal with the psychological burden of the disease. At the most basic level, meditation is the one of the most effective stress management tools available, with a multiplicity of physical and psychological impacts which I’ve highlighted in my books like Why Mindfulness is Better than Chocolate.
Mindfulness also enables us to become more effective “Thought Managers”, not automatically engaging with every thought that pops into our minds, and in particular, learning to let go of negative rumination. This is such a fundamental skill I believe it should be taught to all patients with serious medical diagnoses.
At a different level again, when we cease to identify with ourselves as a bag of bones, and instead as boundless and peaceful consciousness, that can be a game-changer, completely shifting our perspective of what’s happening to ‘me.’
We can’t ever know what’s going on in other peoples’ minds, but from what they say we may be able to hazard a guess. And for some people with cancer, their illness becomes the dominant theme of their life – and not in a good way. There is no need to allow our condition to intrude into our every waking moment, to dominate our every conversation and certainly not allow it to make us depressed. As the Dalai Lama puts it: “There is something about the dynamics of self-absorption, or worrying about ourselves too much, which tends to magnify our suffering. Conversely, when we come to see it in relation to others’ suffering, we begin to recognise that, relatively speaking, it is not all that unbearable. This enables us to maintain our peace of mind much more easily than if we concentrate on our problems to the exclusion of all else.”
Meditation offers a whole tool box of practices to manage our thoughts and feelings about cancer. More than that, it empowers us to use the experience as an impetus for personal growth.
- Ultimately, it’s not the diagnosis but what you do with it that counts
I am guessing that what prevents some people from monitoring their own health as we age, is the desire to keep one’s head firmly in the sand. If we aren’t aware of something, we don’t have to deal with it. In particular, the suggestion we may have a life-threatening disease is hardly a prospect to relish.
Although it has never been suggested by a specialist that my own condition is life-threatening, the simple fact is that for men in Australia prostate cancer is the leading cause of death after heart disease – a trend replicated elsewhere in the developed world (https://prostate-cancer.canceraustralia.gov.au/statistics) When you’re told you have prostate cancer, no matter how early the stage, it is natural to wonder if this is it. Am I facing the beginning of the end? Have I discovered that I’m on a track which will ultimately lead to my death?
As it happens, it’s a Buddhist teaching that contemplating one’s own death, as a near term reality rather than some distant prospect, is one of the most profoundly useful things we can do. Buddha himself said that death is the greatest of all meditations.
Why? Because, at the very least, it awakens us to the truth, from which we generally avert our attention, that life is precious and not to be taken for granted. Lama Surya Das sums this up beautifully: “A keen sense of life’s tenuous, evanescent nature helps us to let go a little; prioritize things in light of the fact that we won’t be here forever; experience gratitude, reverence and awe; and realize that we can ill afford to procrastinate regarding the most important matters and people. Such awareness helps us to cherish life and value time, energy and the inconceivable magic of aliveness itself, rather than squandering it.”
It may seem strange, but it’s not uncommon for people who’ve had a brush with cancer to emerge from the experience with the sense that it was the best thing that happened to them. A gift! It can be a wake-up call about how we spend our time, and who we spend it with. How much emphasis we place on extrinsic things – material possessions, status, achievements out there in the world – versus intrinsic things – time spent with those we truly care about, or on matters of the deepest personal importance.
Beyond this, contemplating our physical death may invite us to ask questions about our own consciousness. Where does it come from? Where does it go? What is its nature? If it continues, in some shape or form, could the choices we make and mental habits we cultivate in this lifetime have an impact on our future experience of reality? If these are questions we have never asked, cancer may deliver an ultimately helpful incentive for us to explore a deeper purpose to life. Perhaps even find an ultimate meaning which has eluded us so far.
One of the most instantly identifiable symbols of Buddhism is the lotus flower. Often growing in muddy or swampy conditions among rotting detritus, lotuses rise to the surface as the most exquisite blooms. The lotus is a metaphor for the fact that from suffering can arise beauty. We can use the mud of our diagnosis to propel us towards transcendence. If we choose.
Of course, we can also become fearful, or rail at our misfortune, we can adopt the psychology of victimhood, or demand “Why me?” We wouldn’t be human if we didn’t sometimes have such feelings.
Victor Frankl, one of the most inspiring figures of the past century, who survived the Holocaust at several camps including Auschwitz and went on to become a ground-breaking psychologist, observed the difference between those who survived and those who didn’t. He concluded that survivors all had one thing in common – a compelling sense of meaning. They weren’t over with life. They still had things to do.
If a cancer diagnosis is what it takes for us to uncover our meaning, or to re-commit ourselves to a sense of purpose already there, then perhaps the whole thing isn’t so bad after all. In the famous words of Ralph Waldo Emmerson, ‘It’s not the length of life but the depth.’
If you’d like to respond or share your own insights, please do so in the comments box below. I promise I’ll read any comments posted.
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More than anything – please get monitored!
(I gratefully acknowledge the lotus photographs used from the following photographers on unsplash.com. From the top: Jay Castor, Kumiko Shimizu, Yash Raut, David Clode, Lisheng Chang, Ryan Baker, Megan Kahue, Marina Logvin, Saffu).
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