Last updated: July, 2023
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 intersex people can get prostate cancer too.
In December 2020 I was diagnosed with an advanced and aggressive form of prostate cancer. It had already spread to my bones and lymph nodes. While the cancers that have not spread may 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.
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 short stories. I’m very pleased that the two most personal of these have been picked up for publication. One of them also won the 2022 BSFA Short Story competition.
Side effects vary. For me the two main ones have been fatigue and hot flushes. I found ways to deal with both of those.
The third side-effect is loss of sexual function. This is more or less universal. Gentlemen of all denominations, if you need motivating to get yourself tested think about this if you think you may have signs of this disease, do not hesitate. Don’t be scared.
To be clear: Once you start on hormone therapy, you will never have sex again.
The third drug was Alendronic Acid. This is to counter the side effect of bone loss from the other drugs.
Enzalutimide is effective at controlling the spread of the cancer, but given time the disease adapts (I hesitate to call it evolving, I don’t know enough) and the drug becomes ineffective. After just under two years of treatment, this happened to me, and the disease began to spread.
At first it looked as if there was only one new site, and the plan was to destroy it with radiotherapy. However, further scans showed it was worse than this. Radiotherapy was cancelled at short notice and I began chemotherapy with Docetaxyl, a well-established drug. I also enrolled in a Stage III trial of Capivasertib, a drug that has proved effective with breast cancer and shows good signs of being useful for prostate cancer too.
Chemotherapy consists of ten infusions, three weeks apart. That’s thirty weeks of chemotherapy, around seven months. In my case I’m heading for thirty-one weeks because around mid-point I was suffering so much treatment was paused for a week to give me time to recover a bit. At time of writing, I have six weeks to go.
Chemo has been very hard. The first week you feel exhausted, then you slowly feel better, energy returns, and towards the end you feel more human. Then it happens again.
For me each cycle was harder, each time it ground me down a little bit more, and continues to do so. That good week at the end is now a mixed bag of good and bad days.
Most of the work the doctors do for you is to help control and manage side-effects, of which there can be many, of differing severity. I lost my hair, no big deal. Then my finger and toe nails fell off. Big deal. It affected me badly emotionally, and toe and fingertips were excruciatingly sensitive. Fungal infection followed.
I have had a dozen different drugs, most of which I still take. Some are to control side-effects, others control the side-effects of the drugs that control the side-effects. Most are pills, but I also self-inject a drug to boost my white blood cell count because chemo can compromise your immune system.
Chemo is not easy and I’m looking forward to it ending.
What You can do to Help Yourself
There is 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. 5,000 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. With Enzalutimide the main ones for me 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.
With chemo, side-effects are very variable, but fatigue is a big one. While it can be hard to motivate yourself to exercise, it really helps. But roll with it, don’t force yourself. Skipping a day doesn’t matter. I’ve learned the hard way to take it easy when I have to. Do what you can when you can is all you need to do.
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.
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.