Robert Alton, 73, lives in Jersey with his wife Mary. He was diagnosed with prostate cancer in December 2016 and is currently on Androgen Deprivation Therapy.
He is a regular and much-loved contributor to the Live Better With Cancer Community Forum. In this Q&A Robert recounts his experiences with treatment and side effects, and shares some the things he learned…
What condition were you diagnosed with?
I was diagnosed with an aggressive Stage 3 prostate cancer in December 2016. The cancer had already extended beyond the prostate capsule and into the seminal vesicles and a lymph node and was (and is) inoperable.
How did you come to be diagnosed?
I did not have any symptoms at all. I had been to my doctor for a routine blood test to check my cholesterol levels. He later phoned me to tell me that the test showed that my Prostate Specific Antigen (PSA) levels were elevated and to come back for another test a couple of months later, which I did. I was pretty relaxed about it and joked that he hadn’t complained about my cholesterol levels and drinking habits for once. I did not know then, that PSA is a protein produced by cancer cells.
The new PSA test showed that my levels were even higher than before and suddenly I was having CT and MRI scans, a cystoscopy and finally a series of biopsies on my prostate.
A couple of weeks later, my wife and I met up with the Urologist who told us that I had prostate cancer. He gave me a booklet to read and sent me to the Hospital to pick up a prescription for tablets designed to reduce the size of the tumour.
How did the diagnosis itself affect you? Were there people you could talk to?
I remember asking the Urologist if he could get rid of the cancer and when he said ‘no’ I decided I had to be tough and I said ‘Well, I’ve had a good innings’ which sounds a bit silly now, of course.
After all the tests I’d had, it was no surprise to hear that I had prostate cancer, but my wife and I were taken aback by its aggressive and advanced nature. It was just before Christmas and we decided to keep the information to ourselves for a while.
Once we had a treatment programme in place, we concentrated on that and we coped pretty well during the first six months.
What treatment did you have – and what were the side effects?
I am on Androgen Deprivation Therapy. Prostate cancer thrives on testosterone which is an androgen, and so my treatment involved the removal of all of the testosterone in my body, which is effectively chemical castration. This is not a cure, but it does stop the advance of the cancer, sometimes for several years.
During the first three months, I was taking a tablet every day and I was quite simply exhausted and no amount of sleep made any difference.
After three months, I was put on a course of radiotherapy which involved 20 sessions over 4 weeks.
I now have a quarterly infusion which keeps my testosterone levels virtually at zero and I have six monthly blood tests to confirm that the treatment continues to be effective.
Androgen Deprivation has side effects which include fatigue, hot sweats, loss of muscle mass, weight gain, impotence, osteoporosis and depression.
Did you find practical things (physical or psychological) that helped with side effects and symptoms, and made life better or easier to bear?
I have managed to keep my weight under control through improved diet and walking and I use exercise bands to combat the loss of muscle and osteoporosis which has also been effective. I have also significantly reduced my alcohol intake.
I am probably fitter now than I have been for years.
My main problem was with anxiety and depression which hit me very hard, ironically at the point at which the cancer was under control and my treatment was down to just one infusion every three months.
Were there any organisations or groups that helped you?
Yes, MacMillans have been amazing. They are very helpful and supportive and they gave me access to a counsellor who gives her time free of charge to people living with cancer. They also support a prostate cancer group which meets every month and sometimes in between.
My wife is a volunteer at Hospice and they have weekly get togethers with coffee, cake and discussion groups which are very enjoyable.
I would also like to mention Live Better With who have given us this forum to chat, exchange views and support one another.
I am very fortunate as I feel well and I am enjoying life again thanks to a combination of the medical people and the wonderful cancer support groups staffed by volunteers who give their care and time to people like me.
What advice would you give to someone in a similar situation. Or what do you wish you’d known earlier that you know now?
I strongly advise men over the age of 50 to ask their doctor for a PSA test at least once a year. It is a simple blood test and prostate cancer caught early can be effectively treated. There are often no early symptoms.
There is a perception that prostate cancer is a slow moving condition and that most sufferers die of something else. Whilst this is true in many cases, at least 10% of them are very aggressive but with early treatment can often be eradicated.
Would you like to help others by sharing your story and your tips for living better with a condition or coping with side effects? Passing on the things you’ve learned could make a big difference to someone else in a similar situation.
If so, please get in touch via firstname.lastname@example.org and we’ll drop you a line (and it’s fine to be anonymous if you’d prefer).