Russell Lansbury

Cancer is a word describing something which happens to others. At least that was how I thought about the subject. And then it happened to me. When I was informed that I had prostate cancer, I told myself that this wasn't a 'real' cancer. After all, many older men have 'prostate problems' which can be fixed with a minor operation. I knew a few men who had been through the operation (including one close friend) and they had survived OK. But I had never really inquired too deeply into their experience. I was happy just to know that they had recovered.

But when the urologist told me that I would need to have an operation, the news hit home. Up to this point, I had convinced myself that whatever I had would be benign and would go away of its own accord. After all, I had never had a major illness, I was very fit and was 54 years (and this was, after all, an old man's disease). But then I had to face the reality that prostate cancer is the second most common cause of cancer-related death in Australia, even though more than half the deaths from prostate cancer occur in men aged over 75 years.

I have now survived the operation and have 'bounced back' remarkably well. However, there remain hurdles to be overcome. There is still a possibility that cancer cells have entered my blood stream and this may require hormone therapy. My sexual life has radically changed as the result of the operation. But paradoxically this has been in many ways a positive life affirming experience. It has brought me closer to my wife, family members and friends as well as causing me to reassess my direction in life. And the overwhelming feeling is one of relief and gratitude that life will go on. I feel that I have been thrown off balance but am beginning to regain my equilibrium. But I now look at life as finite. When I walk along the beach I try to enjoy each moment and appreciate that I now have a 'second chance'.

I decided to write about my experience as a form of 'therapy' for myself but I also hope that this article may provide some useful information to others. While understanding the actual treatment is, of course, very important, so too are the many intangible effects which prostate cancer has on one's relationships and attitude to life.

The Discovery

It is difficult to be precise about the time when I first realised that I could be a candidate for prostate cancer. A couple of years ago my GP suggested that, having passed the age of 50, I should take a routine blood test to check on my cholesterol and a few other items. The tests revealed a slightly above average level of PSA (prostate specific antigen). This suggested that I might have a prostate problem but it did not indicate whether it was cancer, a benign enlargement or some other prostate disease. I had no apparent symptoms although I was waking up more frequently during the night to urinate. My GP suggested that I take some further tests to see if the PSA was rising. Over the next 12 months several tests showed variable results. My PSA level rose, then fell, then plateaued and rose again. Eventually my GP recommended that I see a urologist, who would decide whether to undertake a biopsy.

It was early June when my urologist outlined the possible causes of the rising PSA and suggested that I take one further blood test before I went overseas for a month. When I returned I was told a biopsy was advisable. It was at this point that I contacted my friend David, who had an operation for prostate cancer five years previously. He had become active in the Australasian Prostate Health Council and gave me a number of pamphlets which I reluctantly scanned, still not wanting to believe that I would need an operation.

The biopsy was my 'wake up call'. A laser gun up my back passage fired six needles into the prostate to obtain samples. I had not been prepared for this rather alarming experience, thinking that it was just a routine procedure. While it was not searing pain it was quite a shock to feel the needles go in and then feel a cramp-like sensation in my abdomen. Following this procedure, my urologist explained to me in a rather off-hand manner that around 10 per cent of patients experience bladder infection following the biopsy. If I should find my temperature rising and blood in my urine, I should go to the outpatients department of the local hospital and they would administer a course of antibiotics intravenously.

Two days later, the discomfort from the biopsy had subsided I began to feel ill and decided to check into the local hospital. I then had a five hour wait while the resident doctor tried to contact my urologist for instructions. No-one seemed to be able to tell me how long I was likely to be there. Eventually I was put on an anti-biotic drip and told that I might need to remain in hospital for a several days. Suddenly I realised that things could be serious. My urologist paid a fleeting visit the next day and said that I could go home after my temperature stabilised and that he would let me know the result of the biopsy in a week's time. Within 24 hours I was feeling fine and had begun to return to normal. (Editor’s note -most urologists would not perform a biopsy until the patient has undergone a protective course of antibiotics. Patients should question their urologist about this matter before undergoing a biopsy.)

A week later my urologist informed me the biopsy showed that a tumour had spread across half of the prostate and that I would need to undergo a 'radical prostatectomy' as soon as practicable. He gave me a one page information sheet and suggested that we set a date for the operation. I was stunned. I had not really prepared myself for such an eventuality. I could not think of any questions to ask and simply said that I would like to go away and think about it.

I was surprised by my family’s reaction to the news. When my daughter hugged me and burst into tears, the full impact of prostate cancer struck home. I suddenly realised that my life was about to change. All of my family were supportive and encouraging, but I felt quite numb and stupefied, entering a period of uncertainty over which I had little control

The Reckoning!

On the advice of a friend who had undergone the operation several years previously, I decided to get a second opinion from another urologist, as I began to feel resentful at the rather indifferent way I felt my case had been treated and the little information I had been given. Fortunately I was able to see the new urologist at short notice, as I was starting to panic. He spent more than an hour with my wife and me explaining the nature of the cancer and the options. His first question was about something which I had not wanted to face. "How important is your sex life to you both?" Having been married for 30 years and enjoyed an active and fulfilling sex life I was dreading that prostate cancer would spell the end of my sexual activity.

He explained that the cancer was fast growing and needed to be removed as soon as possible. Failure to act could eventually mean that the cancer would spread. However, due to the bladder infection, which had accompanied the biopsy, I would have to wait for two months. He gave me a number of research papers, which explained the nature and treatment of prostate cancer in considerable detail. I had no hesitation in asking him to take over my case.

On the bright side, he told me I had an 84% chance of full recovery from cancer and that he would seek to preserve at least one of the nerves surrounding the prostate, which governs the ability to achieve erection. Even though removal of the prostate would mean the loss of ejaculation, it would still be possible to experience orgasms and, in time, erections might return. During the operation he would also take a biopsy of the lymph glands, which are close to the prostate, to determine whether they had been affected by the cancer. If the lymph glands had been invaded by cancer he would not proceed with the operation.

My urologist requested I book into the private rather than the public hospital, to obtain a firm booking and so he would be able to work with his usual team. This was the moment of reckoning for my bank balance. My wife and I had withdrawn from private health insurance only recently on the grounds that if something really life threatening happened to us, we would receive better treatment under the public system. Now I realised how expensive 'elective' surgery was for the uninsured.

Facing Reality

Just before the operation I found a book entitled Surviving Prostate Cancer: One Man's Journey, which was co-authored by playwright, Alan Hopgood and medical writer, Dr Mark Ragg. The book deals with Alan Hopgood's personal experience of prostate cancer and also contains some useful factual material by Mark Ragg. It became something of a guidebook for me as it is written in the form of a diary, which I was able to consult on a daily basis. As it turned out, Alan Hopgood's experience was a lot more harrowing than mine and many of the problems which he encountered both in terms of the operation and his personal life did not happen to me. I also realised from his account just how many advances have been made in the treatment of prostate cancer in the few years which have elapsed since his experience.

The Operation

I arrived at the hospital around 5.00pm in order to settle in before the operation which was scheduled for the next morning. I was greeted by a nurse who complained that I was two hours late! Obviously, the specialist's office with whom I had agreed my time of arrival and the hospital admissions desk had not communicated with each other. But the nurse was reluctant to discuss who was at fault. I was late and had disrupted her schedule!

Later, my surgeon and his anaesthetist visited and I was offered a sedative which I declined, but later regretted as I lay awake thinking of what would happen during the next day.

Suddenly it was morning and there was a series of injections and preparations for the operation and suddenly I was out to it. When I eventually woke up and looked around, I found various tubes protruding from me: catheter, drip, epidural, and no sensation in the lower half of my body. Somebody said that I had done very well and that everything would be fine. For the rest of the day I fell in an out of sleep without much sense of time or place.

The third morning in hospital was probably the most difficult. I had a continuous headache and it was difficult to cough or laugh. The catheter was in place and I had no control over my bladder. It was difficult to sit up in bed without assistance. The nurse insisted that I had to drink more fluids and yet I felt that I was drowning in liquids, which then passed straight through to the catheter. But by early afternoon I was feeling a bit better and actually took a shower.

By day four I felt I was really on the fast track to recovery. All tubes except the catheter were removed and I was moving around the room with ease. I spent most of the morning sitting in a chair reading the newspaper with the sun shining through the window. I even managed to walk the length of the corridor outside my room. The nurse said that I would probably start solids later that day.

A Set Back

Then came the blow! My surgeon dropped in during the afternoon and told me that he had just received the results from the pathology test. The good news was that the surgery had left a 'negative margin' around the prostate area. This meant that no cancerous cells had been left in the region where the prostate had been. The bad news was that cancer cells had been found in the 'seminal vesicles' (which are two small storage deposits for sperm that sit at the back of the prostate) and there was a chance that some cells may have escaped into the bloodstream. Because of this he recommended that I undertake a year's hormone therapy as a preventative measure.

While hormone therapy may not cure prostate cancer, it slows the cancer's growth by reducing the production of testerone by the testicles (which fuels the cancer cells). The aim of hormone therapy is to limit the prostate cancer's access to testosterone and thereby 'starve' it into remission. The side effects of the treatment, however, can be similar to those experienced by women in menopause such as loss of sexual desire, hot flushes, breast tenderness, lethargy and weight gain. However, we could wait until the results of the first blood test, in a month's time, which would indicate the level of PSA which remained in the blood stream.

Later that day I spoke with a friend who had experienced the same treatment. He told me that he had abandoned hormone therapy after a couple of months because he could not take the side-effects: 'it felt like someone else had taken control over my body_ some kind of evil spirit-it was very weird and frightening'. He had sought a second opinion from another specialist who was sceptical about the value of hormone therapy as a preventive measure. So David decided to live with the consequences of having some cancer cells in his body rather than continue the trauma of the treatment.

On day five I had my first 'solid' meal and realised how delicious food tasted again. The next day my surgeon said hormone therapy may not be necessary if my PSA level remained at zero over the next few months. He said that my friend’s reaction to the treatment was very extreme and unusual. Most people did not experience such difficulties.

The Recovery

On day Six a good bowel movement precipitated my release! We celebrated with a vegetarian lunch at a caf? in Glebe. It felt great to be surrounded by 'healthy' people By the time I climbed into the car to set off for home, however, I could hardly stay awake. After an afternoon nap, I joined the rest of the family for a celebratory meal and was amazed at how hungry I was. Back in my own bed after a long week, I had a wonderful sleep.

But this was just the beginning of a new phase. I was in charge of my own catheter and leg bag, which needed to be emptied and cleaned regularly. Over the next two days I did some gentle walks with the dog, answered correspondence and talked on the phone, taking things at a more leisurely pace. By Wednesday the catheter was starting to really irritate me. Every time I needed to urinate, I had a spasm and it felt like the catheter was about to explode (due the volume which was trying to escape). I began to become anxious about what would happen when the catheter came out (on Thursday) and I tried to regain control over my bladder movements.

The catheter came out without any difficulties and there was no great drama. Miraculously I was not incontinent after all. The credit was entirely due to my surgeon’s expertise, although I liked to think that the pelvic floor exercises which I had done before the operation (to increase my bladder control) might have played a small role! On Friday afternoon I took a very tentative swim and that evening My wife and I went to a movie (and I held on for two hours!) I did try to test out my luck in the sexual area but I knew that miracles have their limits! Nevertheless, it was good to be making the transition back to a 'normal' life

The Future

It is now three months since the operation. Within one week of the catheter being removed, I had abandoned sanitary napkins and had no incontinence. Five weeks after the operation I received the results of my first blood test. To my great relief the PSA count was negligible and I was told that I did not need hormone therapy at this stage. As an additional reward, my urologist gave me some samples of Viagra and suggested that I try them. Alas! This was not a success. Then I began some continuing experiments with penile injections. On the second occasion it was successful but with some uncomfortable side-effects. I am assured that with persistence things should turn out OK. But I have found that gentle sexual stimulation can produce an orgasm and this unexpected result has been a delightful discovery. The blood tests will continue and my PSA levels will be monitored in the hope that they do not rise. So life is certainly better than I had expected when I first received the news of prostate cancer, but the journey is still at an early stage. There is still some way to go before I reach the mountain top, but the outlook is certainly improving!

March 2000