By Martin Wells

After my radical prostatectomy didn’t catch all the cancer, I was prescribed 25 sessions of external beam radiation therapy (EBRT) and two and a half years of Androgen Deprivation Therapy (ADT). I call ADT chemical castration because that is what it is. The radiation would target what they call the “prostatic bed” – the area in which my prostate used to reside. Here’s my experience of EBRT back in 2009.

Three months after my radical retropubic prostatectomy my PSA was still consistently high (above 2), indicating the cancer was still present and had spread. A tumour was found in my abdominal lymph system.

It was one of the most depressing times of my cancer treatment. On 25 treatment days over five weeks I was reminded I had (probably) incurable cancer. Every day this voice inside my head said “I’ve got terminal cancer. The reason I am here getting radiotherapy is because the prostate cancer has escaped my prostate. “

What it was like getting radiation therapy

There were 6 radiation therapy “suites” with machines when I went in to the hospital, a bit like a production line. The people in the treatment centre were very nice, but the truth is they had to keep us moving with split-second timing just to get through all of us in the day.

As a patient, there was quite a lot of preparation to synchronise – like filling your bladder and emptying your bowel to help them “arrange” these parts for minimum damage from the radiation.

Accelerated video of one of my radiation treatments. It’s remarkable they let me set up my camera to record the process.

I am really interested in technology. So, to get through the daily radiation sessions, I did my best to focus on the wonders of the machinery and not what was going on inside my body. I’d done a Masters degree in radiation and environmental protection back in the 1970s so I’ve got a physics background. The time-lapse video gives you an insight into the remarkable machine that rotated around me “firing” targeted radiation at my abdomen. The two green lasers are used to align my body (using four tattoos on my chest, lower abdomen and thighs. Then after alignment the nurses must leave the irradiation area. They dim the lights and the x-ray machine (10MV) delivers five fractions of radiation in just a few minutes.

Apologising to my own body

Each time I’d apologise to my body for the damage I was subjecting it to. I’d lie there and I’d be crying.

For most of the treatment period there was little or no pain, but I knew what that radiation was doing to my body. It damages all the cells – and the only reason we go ahead with it is that the cancer cells get damaged relatively more than healthy cells. If it was the other way round, none of this treatment would work.

Red hot hedgehogs

During the last 3 or 4 sessions, the pain really set in. We called it “The Red Hot Hedgehog time.” What I mean is, defecating was like passing out a red hot spiky hedgehog. I remember sitting on the loo and having to stuff a towel into my mouth and scream into that.

They weren’t trying to irradiate my rectum, it was just collateral damage. Fortunately, since my treatment in 2009, the technology has improved a lot and targeting of radiation is much more precise than in my time.

Relatively quick recovery from radiation therapy

The pain was quite intense for three or four days after my radiotherapy ended, quite raw. After that, the pain declined exponentially. I knew there was long term damage to my body, but actually I didn’t experience a lot of direct evidence of the damage. My anus and rectum have been OK ever since.

Most importantly, after the radiation therapy, my PSA went right down below 0.03 – what they call “undetectable.” I’ve had to go back for retesting every three months ever since. Sadly, I knew that with my diagnosis my PSA would be likely to start rising again within 8 to 10 years. The fact that it did is another part of my story. At that time, the great news was that my PSA was right down. I was also free of some of the other problems men can experience after radiation therapy – I had no bowel problems or incontinence. I think my overall fitness really helped.

Sexual recovery while still on ADT

After radiation therapy ended, I still had another two years of hormone suppression treatment (ADT) lined up. My oncologists had told me there are statistically better outcomes for men in my situation if they irradiate the prostatic bed and put you on two and a half years of hormone suppression treatment (ADT). Both of these treatments are designed to weaken any remaining cancer cells in the body and inhibit their growth. My treatment was radiotherapy with two and a half years of ADT. I started them both at the same time.

Once the radiation was over, I remember worrying about my own sexual needs and my then partner’s needs. “Oh my god he is going to find another man” was my fear. And for myself – “Oh my cock, it really wants men, but I can’t get it up.”

So I injected myself with Caverject a few times – I hate needles and I would have to mentally prepare myself to stick that needle into my most intimate body part. Needles freak me out. But I wanted sex enough that after nine months I did inject myself and we were able to be sexual again. Actually the injections don’t hurt that bad – it is just what’s going on in my head that makes me think it hurts.

The good news for me was that even while on ADT, and without enough erectile function for penetrative sex, my partner and I were able to be deliciously sexual and inventive. We’d go down to London together and have tons of fun. I was well into my 50s, but the momentum of my 40s seemed to still be driving my energy.

I also paid a lot of attention to my overall physical fitness. I have kept slim and fit ever since my treatment began. Even without erections, the rest of my body could still be pleasurable to me and attractive to partners.

Deep urges to give up ADT

I became quite distraught at the prospect of completing two and a half years on ADT. I remember “You’ve just got to take me off this ADT. I just can’t cope with it any more. It felt – Argh – you’re just going to have to stop right now.”

They said, “Martin, hang on in if you can. The statistics say you have a much better chance if you keep going for the whole two and a half years of ADT.” My body seemed to be saying “stop taking this poison.” But somehow I kept going back for my next dose of ADT. I heard of others who just gave up. What kept me going was my research. I asked questions and shook the tree “why do you want me to go on so long with this stuff?” And the oncologists gave me scientific information which eventually convinced me of the benefit of the treatment.

How did I hang in there through the panic and revulsion? There is something in me that just helps me get up in the morning, even when I don’t feel like it. It is the same energy that helped me persist with the horrible ADT.

Gift of life

Thirty months of ADT did eventually end, and I did start feeling better. The combination of radiotherapy and ADT did kick the cancer down the road for nearly ten good years.

I am sure one of the things that has helped me cope with all my treatments including Zoladex (that’s the basis of my ADT treatment) is committing to vigorous daily exercise, at minimum a 6 mile brisk walk every day. I always include some hills. My partner, who is younger than me, gets more tired than me!