White Logo

Robert

Prostate Cancer - stage 3
Story published: 15 May 2023

How I live better... with prostate cancer!

Update 8 September 2024

Sadly today we became aware that the lovely Robert passed away at Jersey Hospice back in April, but we are glad that he received fantastic care there and passed away peacefully.

Message from Lorna:


I count myself very lucky to have met Rob and to have been on Macmillan's HOPE course with him. He was one of only two men in a group of younger women. He brought the fun and the laughs to our course evenings and, especially given he also had a huge passion for music, I could have talked to him for hours and hours (and did over pizza one evening).

We had some social events since the course and Rob joined us when he could, bringing along his lovely wife to one event as well. In the past 18 months we messaged occasionally over WhatsApp but, having not had a response for nearly 6 months I did worry that things were not going well for him. Today his wife checked his phone, found my last message and very kindly took the time to phone me and share the sad news.

We still socialise as a HOPE group and will undoubtedly raise a toast to Rob at our next catch-up. We are so grateful that he shared with us his kindness, humour and zest for life.

Rest in peace friend.


About Me
Now 75 and retired I came to Jersey from my native North East in 1972 to work in the finance industry. I met my wife Mary in 1981 and we have lived here happily ever since.

What condition were you diagnosed with?
In December 2016 I was diagnosed with Stage 3 prostate cancer. The cancer was already extending beyond the prostate capsule. It extended into the seminal vesicles and a lymph node. Surgery was not an option. In addition to this, my Gleason Score was 9.
What does the Gleason Score mean?
The Gleason Score indicates the speed at which the cancer is likely to grow. The higher the score, the more likely it is to grow quickly. Typical Gleason Scores range from 6-10. A score of 6 is low grade. 7 is intermediate grade. A score of 8 to 10 is high grade cancer.
What led to your diagnosis?
I did not have any symptoms at all. I had been to my doctor for a routine blood test, ostensibly to check my cholesterol levels. He later phoned me. He told me the test showed I had elevated Prostate Specific Antigen (PSA) levels.
Was there to be follow-up then?
Yes. I was to go back for another test a couple of months later. I did. I was pretty relaxed about it. I joked that he hadn’t complained about my cholesterol levels and drinking habits for once. I did not know that PSA is a protein produced by cancer cells.
What happened at your next appointment?
The new test showed that my levels were even higher than before. Suddenly I was having CT and MRI scans. Then a cystoscopy. And finally a series of biopsies on my prostate.
How did you receive your diagnosis?
A couple of weeks later, my wife and I met up with the Urologist. They told us I had prostate cancer.
How did the diagnosis affect you?
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 relatively 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. We coped pretty well during the first six months.

What treatment did you have?
I was immediately started on ADT (Androgen Deprivation Therapy). In tablet form at first. Followed by quarterly injections. Prostate cancer thrives on testosterone which is an androgen. So my treatment involved the removal of all the testosterone in my body. Effectively chemical castration.

This treatment is not considered a cure. It starves the cancer of testosterone. In doing this it can reduce the size of the tumour and stop the cancer from advancing.
What happened next?
After the initial three months, I went to Addenbrooke's Hospital in Cambridge. There I had a course of radiotherapy consisting of 20 sessions spread over 4 weeks.

Prior to the radiotherapy, I received three small tattoos on my abdomen. They were lined up with three green laser lights on the radiotherapy machine. This was prior to the 20 sessions, each 10 minutes in duration.

Each radiotherapy session required me to have empty bowels and a full bladder. This ensured the radiotherapy beam did not damage non-cancerous areas.

What came after radiotherapy?
After radiotherapy, I had another 3 years of quarterly ADT injections. During these my testosterone levels remained virtually at zero.
What side effects did you have?
Androgen Deprivation Therapy causes hormonal changes. And so it has side effects. These can include fatigue, hot sweats, loss of muscle mass, weight gain. As well as impotence, osteoporosis and depression.
Did you find anything helped with side effects and symptoms?
I have managed to keep my weight under control through improved diet and walking. I use exercise bands to combat the loss of muscle and osteoporosis. And I have significantly reduced my alcohol intake.

The main problem was with anxiety and depression which hit me very hard. Ironically this happened at the point when the cancer was under control. When my treatment was just one injection every three months.
Were there any organisations or groups that helped you?
Yes. Macmillan Cancer Support (Jersey) have been amazing. They are so caring and supportive. They help with social, emotional and practical issues a cancer diagnosis can bring. They also introduced me to a counsellor who gives her time free of charge to people living with cancer.

Macmillan also support a prostate cancer group which meets at least every month. And I attended a Macmillan HOPE (Help to Overcome Problems Effectively) course. There I met other people coping with cancer and its side effects. It was a six week course of two hours per session and it was incredibly rewarding and helpful.

Where are you at now?
My last injection was in October 2019. Since then my PSA levels have continued to remain low which is very encouraging.

I am very fortunate as I feel well and I am enjoying life again. This is thanks to a combination of people. My amazing wife Mary who has been by my side and supported and encouraged me throughout. Our families and friends. The medical people. And the wonderful cancer support groups who give their care and time to people like me.

What advice would you give to someone in a similar situation?
There are often no obvious early symptoms of prostate cancer. I strongly advise men over the age of 50 to ask their doctor for a simple PSA blood test at least once a year.

The perception is that prostate cancer is a slow moving condition. That most sufferers die of something else. This is true in many cases. Others are very aggressive but early treatment can sometimes eradicate them.