Updated: Mar 6, 2020
Rob is 56 years old, married with a grown-up daughter, a job, a house and a mortgage. Rob is not his real name but he is a very real man who had his prostate removed two and a half years ago. This is the second part of Rob's prostate story it deals with the radiation therapy which he had following the removal of his prostate.
Rob's story continues.
Several medical issues not related to my prostate delayed my radiation treatment. It was about a year and a half after my surgery that I started radiation therapy. Although I was still suffering from erectile dysfunction, my bladder control had got better, I was clear of cancer and overall my quality of life had improved.
I knew that radiation therapy could bring unwanted complications. A friend of mine who is a nurse and works with patients who have had radiation therapy commented that since my health was improving was radiation therapy something I needed to do now. I told him no I didn't want to delay. I knew there could be side effects but the thought of another cancer diagnosis frightened me. I had had no symptoms before my initial diagnosis of advanced prostate cancer, I didn't want to take any chances. There was no guarantee that I would be so lucky in the future. If any undiscovered cancerous cells were floating around then I wanted to make sure they were destroyed.
My consultant offered me proton beam therapy. He assured me that it was amongst the newest treatments available for prostate cancer. One which he hoped would have fewer side effects than the more traditional radiation therapies.
I was to have 33 treatments on 33 consecutive days.
Proton beam therapy is a variation on conventional radiation therapy for prostate cancer. Conventional radiation therapy uses X-rays (also called photons) to destroy tumours. Proton beam therapy, as its name indicates, uses protons too irradiate, or kill, cancer cells. However, protons (positively charged atoms) have certain unique qualities that set them apart from X-rays. And those features allow doctors to target proton beams with greater precision.
Think of the difference between X-rays and protons this way: Imagine that an X-ray is a bullet that enters the body, strikes a tumour, and then exits the body through the other side. Throughout this process, the X-ray releases energy, damaging healthy and malignant tissue alike.
By contrast, doctors can calculate how deep in the body they want a proton beam to fire. That means a proton beam doesn’t exit the body, so it delivers most of its energy in the tumour.
In theory, this pinpoint-targeting ability should make proton beam therapy less likely than conventional radiation treatments to damage healthy tissue in the vicinity of a tumour-damage that can result in side effects such as ED, incontinence, and serious gastrointestinal problems such as bleeding and ulcers.
Prior to your proton beam therapy beginning you are called into hospital and measurements are taken to ensure that beam is targeted at the right spot.
Diarrhoea is an unfortunate but unavoidable side effect of this type prostate cancer treatment and to ensure that this does not cause a problem during your actual therapy sessions your bowls have to be empty before any measurements are taken.
My appointment to be measured up for the proton beam was scheduled to take place 10 days before my first treatment. Therefore 2 days before that I was instructed to take enemas to clear my bowls .
Prior to each therapy session every patient is given a specific quantity of water to drink. This is done to ensure that your bladder is the same size each time you have a treatment session. The amount of water that a patient is asked to drink is based on their height and weight. On arrival at my targeting appointment, I was given one and a half glasses of water to drink. I had to drink the same amount of water before each of my 33 treatment sessions. If after I had drunk the water the medical team felt that either my bladder or my bowls weren't in quite the right place I would either have to drink more water, go to pee or open my bowels. Only once they were sure everything was right did the proton therapy take place.
The actual therapy itself was fairly straightforward. I would lay on a bed and the proton beam machine would move around me. It was painless and lasted for approximately 10-15mins per session. Although that might not sound like a lot, 33 consecutive days of treatment was draining.
At the outset, I was warned that fatigue was one of the side effects of this type of treatment. At first, I don't really notice anything but bit by bit as the sessions went on day after day it did begin to grind you down. By the end, I was exhausted.
Going to the actual radiotherapy sessions was an eye-opener. It was good for me. I met other people who were there having radiotherapy and chemotherapy. I made friends. You'd see the same faces day after day, and you'd begin to talk about what was happening to you, why you were having treatment? How were you coping? These conversations brought back a little bit of normality into my life and sometimes that's just what you need. It put things into perspective. Made me think no matter what I'm dealing with things could be worse.
The nurses and doctors at the radiation therapy centre were excellent. They took my picture on my first visit and put it on my file so when I came again, even if it was a nurse I hadn't met, they'd know who I was. Those little touches made a difference. Okay, they stood behind a screen while the radiotherapy was happening but they spoke to make you feel human.
Side effects. Once I had finished the course of therapy I hoped my life would begin to return to normal, but it didn't. The diarrhoea that started during treatment didn't stop. Its been over four months and I'm still struggling to control my bowel. It affects confidence. I don't go much anymore. It was bad enough when post-surgery I began to struggle with bladder control, bowels problems took things to a whole difficult level.
I've had a few accidents when I've been out it's been terrible. I wear incontinence pads and they do help. The mess doesn't leak through to your pants or your trousers but it's still next to your skin. It's not nice. You can't sit down. All you can do is try and get home and have a shower. When you get home it's not over. You face the embarrassment of telling your family what happened and then you have to deal with your clothes. Where do you put them? How do you wash them? I can't even put them in the bin without worrying. It's not just the mess, it's the feeling of shame that is so difficult to deal with.
Sometimes I think I'm just going to break wind, and I have an accident. If I'm out and that happens I can't even go to the men's toilets because I need a private sink to wash. Often I am forced to use the disabled toilets which itself can cause problems.
I had an accident whilst I was at the supermarket. I had to go to the disabled toilet to clean myself. When I came out the store manager was there with somebody who was disabled and wanted to use the toilet. They couldn't see what my disability was and asked why I'd used the disabled toilet. I had to explain the whole situation again it was very embarrassing. As much as I wanted to fight my corner I didn't want the manager and the people in the shop to know my business. It made me feel like I didn't want to go out anymore.
Things have improved. I am still dealing with diarrhoea daily but my coping strategies have got better. I still plan every trip I make outside the house around access to a toilet. Now I am looking for toilets with private washing facilities. With friends and family that's fine. With everybody else, it's a real challenge. I take an emergency bag with me whenever I go out. It has a change of clothes, extra pads and plenty of wet wipes. I have to be careful about what I eat. Anything too fibrous and it seems to pass right through me. I do take medication to bind me up, but you have to be careful even with that. Too much and I'm blocked up. It can be painful. Too little and I'm on course for an accident. I find it difficult to find an equilibrium.
Therapy. I haven't had any therapy to help me with the problems that I have faced since my prostate operation. I have spoken to Macmillian and they were good, but it wasn't really counselling. I tried to use my local IAPT service. This is the local free self-referring NHS funded talking therapy, but to be honest they were just to busy too help.
I haven't been back to work. If I'm being honest I'm not sure I'm going to go back to my old job. It's an hour and a half journey by public transport there and an hour and a half back (there's no parking at the office). If I make it to work and get to lunchtime do I eat or not eat ?Do I drink not drink? If I have an accident can I clean myself up? Can I cope with the embarrassment? Could anybody?
Right now I'm thinking about early retirement on medical grounds. I don't want to stop working but I'm just not sure what I'm going be able to do. Ideally I'd work from home because of all the facilities I need to take care myself. For me, it's a confidence thing. It's hard to say that I'll ever get back to where I was. I'd like to think I will but I just don't know.
Editor's note: This is one person's journey. Its not meant to frighten. It's meant to inform. Everybody has their own journey. Delay in diagnosis does not improve your prognosis so get checked, and take control. JG