Last updated: September 2022
One man in eight in the UK will develop prostate cancer. I am one of them. I’ve learned a few things since diagnosis and I’m using this page to talk about what I have learned, the help you can get, and what you can do to help yourself.
Prostate cancer is now the most common male cancer in the UK. Risk increases with age, and that risk is higher if your father or brother has had it. If you are black, the chances you will get it are one in four. Trans women and some other people can also get prostate cancer.
In December 2020 I was diagnosed with an aggressive form of advanced prostate cancer. It had spread to my bones and lymph nodes. While the cancers that have not spread can be cured, mine cannot. The oncologist told me the mean survival time for people in my situation is five years. Obviously this was not easy to hear.
To be clear, ‘mean survival time’ means the survival time of most people. This is different to average time, which is simply halfway between the lowest and highest life expectancy.
I’m writing about my life and how I feel in my blog. At the time of writing this you can read about it here, and here, and here. As an SF and Fantasy writer, I’ve also written about contemplation of the future, the sense of isolation, and the unexpected love such a diagnosis can bring in my stories.
Since diagnosis I have been taking three drugs. Two of them are hormone blocking treatments. One is called Goserelin, the other is Enzalutimide. Side effects vary. For me the two main ones have been fatigue and hot flushes. I have found ways to deal with both of these. The third one is loss of sexual function. Gents, I can no longer get it up. This is more or less universal. If you need motivating to get yourself tested when you think you may have signs of this disease, do not hesitate.
If you need motivating, think about this: Once you start on hormone therapy, you will never have sex again.
The third drug I take is Alendronic Acid. This is to counter the side effect of bone loss from the other drugs.
What You can do to Help Yourself
There is now good clinical evidence that regular exercise extends life expectancy, and good heath in cancer sufferers. I was fortunate to be enrolled in the Thrive program run by the The Exercise Clinic through the Royal Marsden hospital soon after I was diagnosed.
Hormone deprivation drugs push your body endlessly in the wrong direction: muscle loss, bone density reduction, weight gain, fatigue. Exercise, weights, and getting your daily step count in are essential to stop and reverse these trends.
In general, the best exercise for you is the one that you will do. I use weights, general strength training, a rowing machine, and swimming. And walking. 7,000 to 8,000 steps a day is a good target.
Before starting to exercise, especially if you have a diagnosis where the disease has spread to you bones, talk to your care team. I’ve been told to avoid exercise that puts great strain on my spine, or any situation where there’s risk of a hard fall, because of increased risk of fractures.
The Thrive program is excellent, but limited funding means it has limited reach at the moment. We’re hopeful that may change. If you’re unable to join you can still work through tailored exercise videos. There’s one here.
Getting Help & Reading More
Prostate cancer may be quite symptom free until it is advanced, but if you are over fifty, if you need to get up to pee at night more than you used to, or if your urine flow is less than it used to be, get yourself checked out. Never ignore blood in your urine or semen.
If you are worried, talk to your doctor.
When you do, ask for a PSA test. PSA stands for Prostate Specific Antigen, a protein produced by your prostate gland. A healthy level of PSA varies person to person. If nothing else, a test will set a baseline measurement for any future tests. Read more about getting checked here.
In the UK the NHS web site is a good place to start.
Prostate Cancer UK is a charity dedicated to researching better treatment and prevention of prostate cancer. Their web site is excellent.
Again in the UK, MacMillan Cancer Support is a charity offering information and support to all cancer sufferers. If you have cancer you can talk to specialist nurses. There are also forums where you can talk with other men being treated for prostate cancer for support and advice.
Living with the Meds
There are several different drug treatments and each has various possible side effects. You may get a few, some, or none. For me, the main ones were fatigue – leading to brain-fog, and hot flushes. I discovered both of these can be managed with acupuncture. As a result my fatigue is now much less deep and constant, though I still have weary days. The hot flushes are now mild. I no longer have to carry a towel around with me.
The Royal Marsden has its own acupuncture clinic. If you are being treated there and are suffering from hot flushes and fatigue, you can ask to be referred. If you wish, you will be taught to self-needle so you can continue to treat yourself when the course ends.
Other hospitals may have acupuncture clinics. Because you are essentially going through what many women endure when having treatment for breast cancer – essentially an induced menopause, there may well be treatments available.
While the NHS is a truly wonderful and amazing organisation, sometimes it is not very joined up. So do ask about things like exercise clinics and other treatments like acupuncture.
Although I’ve kept my facial and head hair, my body hair is much reduced. To my surprise I was profoundly affected by the total loss of my armpit hair. People, I was upset, far more than by the loss of my chest hair. I also had to learn about chafing and soreness there.
Please do remember: If you are worried, talk to your doctor.
I have had to learn to accept I am seriously ill, and that I not only need help, but it is there and waiting for me if I ask for it.
Living with Your Cancer
As with much of the above, I can only speak for myself.
Live your life.
Good luck to you all.
Personal news – September 2022
When I was first diagnosed my PSA was 268. Over the next 17 months it fell to 0.06. It then started to rise slowly. It is now 0.6. This is still quite low, and the doctors are not too worried. I am trying to do the same.
A recent MRI scan showed all sites of the disease were continuing to reduce in size. In the next few weeks I will have another MRI scan to check that is still the case.