Blog Post

The Lived Experience of Surviving Prostate Cancer

Extracts from

Facing the Tiger: A Survivorship Guide for Men
with Prostate Cancer and their Partners

Professor Suzanne Chambers AO

www.suzannechambers.com.au

Being told you have prostate cancer is for most men, and those close to them, an experience they will never forget. At that moment, the world seems changed. The things that you may have taken for granted are now at threat. While health care professionals and others around you may honestly express their concern and sympathy, this can be a singularly lonely and distressing time.

When cancer happens in a family it affects all of the family in some way. Similarly, when cancer happens to someone who is in a couple relationship, both people in the relationship are affected and how each individual reacts affects the other. This happens on several levels. First, if your partner is very distressed, then that will be distressing to you. By contrast, if your partner is upset but calm, you might find it easier to be calm as well. It is a two-way street, with each person’s reaction having some effect on the other. This does not mean that either of you should hide how you feel. In fact, the opposite is true. It is important to be honest and open about how each of you is feeling. The point is to be aware that although you are both individuals with your own unique approach to things, you are connected emotionally.

It can be a big shock when you are diagnosed with prostate cancer and find out that there are several different treatment options and that you need to be involved in the decision about what treatment to have. This might sound crazy at first. If your car is broken the mechanic usually tells you what needs to be done. That is their job after all. Similarly, you might expect one correct ‘fix’ to treat a cancer, and you probably expect the doctor to offer you this one best way. Being asked to make this decision yourself is a big call.

One of the first challenges is the medical language that doctors use. Maybe you didn’t even really know you had a prostate gland before this, much less exactly where it is (so close to the plumbing) and what it does. The words used to describe cancer and treatments are unfamiliar to most people. Who (other than health professionals) uses words like carcinoma, radical prostatectomy, and brachytherapy in normal day-to-day life? It can be hard to be sure about exactly what the doctor is telling you and what it really means. As well, much of what you will be told is expressed in numbers, percentages or chances of things happening. Even doctors don’t always understand these risk estimates, so how hard is it then for a layperson?

As a rule, we don’t think as clearly when we are stressed, and you don’t get much more stress than when you are facing cancer. If you think of the analogy of a diagnosis of prostate cancer as ‘facing a tiger’, you are getting ready from a physiological point of view to fight or run. This stress response, as it is often called, is designed to help you keep yourself safe from immediate danger. It is not designed to help you sit down and reflect clearly on all possible actions you might take, weigh up and consider the pros and cons of different approaches, and then choose a carefully laid out plan. Our thinking just does not work as well when we are stressed. If you think of your mind as your workbench, when you are stressed your ‘mental workbench’ becomes cluttered. It becomes harder to find things, to make sense of them, and to make a decision. This means that while many men and their partners would prefer a quickly achieved clear plan of action so they can move out of uncertainty and get on with it, this is often not possible.

Reading personal stories from other survivors can help you to reflect more deeply on your own experience; can give you new ideas about how to manage difficulties as they arise; inspire you about what is possible after cancer; and help you feel less alone in your experience. You might like to think about how these stories are similar or different to your personal story. Remember everyone is different and there is no one single right or wrong way to cope.

Jim, a survivor

I was diagnosed with prostate cancer in 2007 and was put straight away on hormone therapy, external beam radiation and then high dose brachytherapy. I was on the hormone treatment for over 6 months all told, and that was the worst. I suppose most blokes would say the lack of sex drive was a big concern, but I found it was all the other effects. You start to lose muscle, you don’t feel too enthusiastic, you’re moody, you end up having some memory loss. I stopped work immediately, and we had 5 acres at the time and then not long after I decided that we would sell it because Laura wouldn’t be able to deal with it. I was getting the property ready for sale so that occupied my mind a fair bit and gave me something else to think about, but it was pretty tough times. I remember, and I often talk about this, Laura was still teaching and she came home one day and I was sitting out the back on a park bench that we had and she came round the corner of the house and I was sitting there crying my eyes out and she said ‘What’s wrong with you?’ I said ‘I need a dog. I am sitting here by myself, no one to talk to, you are off at work, and I am feeling miserable.’ So we ended up going and finding a dog, which gave me something else to distract myself. When we got that little pup that was the best move we made. That was probably the worst I got, just that short period.

 

Graham, a survivor

I knew of absolutely nobody else who had had their prostate out, so I was totally alone, I didn’t know where I could go to for support.

My major problem after surgery was urinary incontinence. I was told that some men suffer from some form of incontinence after a radical prostatectomy, but mine was just terrible. A few days after the operation and prior to leaving the hospital a physiotherapist told me about pelvic floor exercises, which I didn’t even know existed until then. Then as I left hospital, I was handed some pads and that was it. I had very little knowledge about incontinence, and now I look back I don’t know that I researched it enough. I guess I expected the doctor to sort it all out for me. For two years I struggled with the incontinence, saw three physiotherapists but the best I got down to was five pads a day. Everywhere I went I had to take pads, even on a trip to Turkey! My wife was fabulous about it. She would say: ‘It’s only wee.’ But it’s not the fact that it’s only wee, it’s the fact that you are wet all the time and your skin is wrinkly and you can’t get dry, it’s just so demoralising. In retrospect, I think that it made me a bit aggressive. I would get really angry at other people for complaining about things they should be grateful for. I was thinking: ‘Why was it me that had this?’ I have never been a person that was a ‘why me’ type, but it certainly made me one at the time. Then through a support group I learnt about a surgical treatment for this problem — a sling, and it worked! It is absolutely amazing — in hospital overnight and now completely dry!

 

Gary, a survivor

I remember I was at Woolworths buying my vegetables when my doctor called me. I went straight into shock and walked out without paying and so had to go back later. That weekend I just went into hibernation and spoke to no one. I spent the whole weekend with ‘Dr.Google’ finding everything I could online about prostate cancer, looking for options and trying to make sense of it all. That weekend I came to see I had a choice. I could spiral into depression, or I could fight it. So, I came to accept the situation and decided to take control. I had a lot to live for both from a career perspective and personally. I was single and so had to rely on myself. But I did have friends, so I contacted all my friends and workmates to share the news about what had happened and what I was going to do about it. This helped me feel more in control.

 

Tristan, a son

I couldn’t believe it when Dad was diagnosed with prostate cancer. It didn’t seem fair. Mum and Dad approached Dad’s diagnosis as a team, and Dad initially approached the whole situation with calm confidence. He seemed confident in the treatment and in his medical team, and he even laughed off some of the more unpleasant aspects of the Brachytherapy treatment — including what we referred to as the porcupine stage! It all changed when Dad started hormone therapy and radiotherapy. The confidence vanished and was replaced with fatigue, doubt and increasing despair. At first, I thought it was a side effect of the hormone treatment. He was depressed and was obsessing about his treatment. Then Dad refused to attend radiotherapy treatment one day. He could not face it anymore. It was a difficult time for all of the family. While I was shocked and upset by the situation, and the stark realisation of mortality — I also experienced it as a time of transition. To this point, my parents had been the strong ones — the carers. It felt very much like it was now my turn to assume the role of the strong one, the carer, while Dad was ill.

 

Jan, a wife

I found out about mindfulness from a counsellor I was seeing. She mentioned that this course was coming up and asked would I be interested. It was an eight-week group course, I mentioned it to Gordon and asked if he wanted to come to, and he said why not, so that is how we got in. For the first few weeks it was difficult. I guess I was concerned that Gordon was the only bloke in the room, in fact I was quite concerned and distressed for his sake. I could only imagine how I would have felt if I had been the only woman in a room full of men, so there was that to it. But he settled in about halfway through the course. By that stage it was almost genderless; there was only the odd occasion when we would roll our eyes at each other! The other thing we did was to make sure that after every mindfulness course we would go to dinner somewhere in town to some bohemian restaurant, so we always had something to look forward to afterwards. As it turned out, while we always enjoyed our dinners, we didn’t really need to go to dinner afterwards because the sessions became more and more enjoyable. We began to really look forward to them. They were difficult in the first instance because the actual act of mindfulness is really hard at the start. All of us in the group were struggling. I guess what I am saying is that mindfulness is not an easy practice to learn after many, many years of letting your brain do whatever it wants to do, whenever it wants to do it. Probably up to week five it was a real struggle, after that, I stopped judging myself, and then it became a more enjoyable process.

Extracts from Facing the Tiger: A Survivorship Guide for Men with Prostate Cancer and their Partners

Professor Suzanne Chambers AO