Very positive experience of Radiation beam therapy.
It has now been 4 months since I posted last and I am hoping my experience and progress may be helpful to others. So, what happened since I posted last:
I considered all my options and after talking all options through I decided to consent to radiation beam therapy without hormone replacement. Hormone therapy was not deemed as appropriate for me by my oncologist due to relative early diagnosis and my other risk factors i.e. previous heart disease and family history.
Tests before the treatment:
I did go for a bone scan and no significant abnormalities were found as predicted. I then had my planning scan and although I was sent some information to change my diet before the scan I opted not to due to my other medical problems and also know my bowel habits are very well controlled on my current diet. So, I stayed on my restricted carbohydrate and lactose diet with probiotics every morning knowing after the planning scan I have two weeks to change if needed. At the planning scan I was informed that it was the right decision at that point as it was easy to locate the prostate and my bowels were empty which would be ideal if I can keep it that way. That is also the reason why some patients are given laxatives or enemas if needed to clear the bowel to keep the prostate in the same position and minimal exposure to the bowel and bladder for side effects. I needed none of this and that was how I started radiation beam therapy 2 weeks later.
I also had my 3 small tattoos placed so it would be easier to align me on the scanner each time. These were three small black ink dots one on each side of my hips and one centre just above my centre hip connection in my pubic area. They became my best friends to get in and out of radiotherapy suite quickly as it made aligning the beam correctly each time.
I had a total of 20 treatments of 3Gy or 60Gy in total of fractional radiation beam therapy (RT)starting on a Wednesday and finishing on a Tuesday weeks later. I had weekends off or if I missed a treatment it would have been time to catch up but again this was not needed.
Treatment routine and setup:
We setup a very constant routine for weekdays getting up the same time every day, eating breakfast the same time, I had my single cup of caffeine free coffee in the morning and either water with a dash of cordial or decaf tea the rest of the time. My RT was more or less the same time each day with about 2 hours variation at most. My wife drove me to the Christie each day and we listened to our favourite music playlist as the journey was about 40 minutes depending on the traffic. I checked in each day and then waited to be called to the RT suite. I waited about 20 minutes on average and then had to go to the loo before entering the suite. This is again to ensure the bladder is as empty as possible and out of the way. I also learned that sitting down to go to the loo allowed me to empty my bladder the best and also get rid of any gas that may interfere with my treatment. There was a suite to undress and then walked in my underpants with my clothes in my changing basket to the beam table. Once a week they would do a scan to check position of prostate and surrounding organs again and on those occasions the scanner would move around me twice taking about 5 minutes after I have been positioned. On the days there was no scan the RT would take about 3 minutes after the positioning.
Positioning is all about aligning you perfectly and the same each time and once I got the hang of it, it took about 10-15 minutes. The routine would start with put a cover over, drop your underpants and lift your shirt above nipple line.The radiotherapists would align the tattoo dots, take 4 measurements to ensure the beam travels the same route each time before the RT starts. As soon as the position is perfect you are required to stay as still as possible while the leave the room and then deliver treatment. My team were fantastic and towards the end we could do it all in about 10 minutes. In the beginning I closed my eyes and did some mindfulness exercises but after a few times I watched the machines and they became my friends on a daily basis. RT is pain free and some sensation of little muscle twitched but it could even have been from lying still so nothing to be concerned of at all. So, from leaving home till back again took about 3 hours out of my day on treatment days.
This is very individual and can vary a lot I have been told but here is my personal experience and not everyone has the same. I have been incredible blessed with very limited side effects but did not escape completely.
Firstly, I developed some flu like muscle ages and pains about 5 days in and was not sure if this was due to positioning or the treatment as I do have a dodgy back and shoulder from many years of sport. Later on, I developed neck pain but the realised it was positional as due to all the journeys and time spent on the loo I spent too much time looking down at my mobile phone and once I changed that it improved quickly.
I developed some diarrhoea about 10 days in but once I started Fybogel as suggested by my team it settled and I was never troubled again and stayed fairly regular. I few day later I developed constant feeling of pressure like wanting to go to the loo for a stool, but nothing happens. I took my 4 days to figure out that distraction worked the best as I would pass a stool twice in the morning and then decided to ignore the sensation by either playing games on my phone or doing some work. After the 4 days which was fairly rough I developed this plan and it was no longer upsetting me although it was there in the background.
Going for a pee became a whole new experience and sitting down and not getting impatient worked for me. I took me about 20 minutes to empty my bladder and the urge to go was there every hour, but I worked on distraction and could last about 2 hours. This continued through the night, but I managed to sleep fairly well but in defence I was a 4-6-hour sleeper before and getting up twice every night. I tried cranberry tablets and drank them daily but was never convinced they made any difference, but I did become aware that as long as things stayed constant the side effects were manageable, so my daily routines became quite rigid.
After about 10 treatments I developed some fatigue but learned that even just resting about 40 minutes each afternoon was enough to contain this. However again in my favour I am working for myself and could control the hours I worked and didn’t have to travel as work was at home.
Then side effects not related to me, but my side effects did upset my wife and children and emotionally it was harder on them to see me struggle, adapt and then tackle the next thing but we all stayed positive.
Work and staying “normal “:
I am lucky as I am employed by my own company so could alter my hours and workload, but I didn’t miss a single day of work although it was reduced hours. I managed to work an average of three hours per day ranging from 1 hour some days to 5 hours at best on other days.
My wife was concerned about me driving but I reassured her, put on some continence pants and travelled as needed but no longer than 1 hour. I also managed to drive to go fly fishing on weekends driving about an hour to the venue. I was always concerned I would wet myself so wearing continence pants reassured me although it never happened as I managed to always get to a loo on time. I learned about the Bowel and Bladder community app which shows you were are loos close to you and help from owners to allow use of their personal loos. Great app to download from the app stores and RunPee app was great for going to the movies as it tells you where in the movie to go for a pee. I did manage to go to two movies during my treatment.
Traveling was one of my main concerns, but I developed some strategies and flew to the USA two weeks after my therapy was completed. Again, I am fortunate as all my flights were in business class, but it allowed me to continue to work and get new contracts in place. I packed spare clothes in hand luggage as well as selection of continence pants and pads. I wore pads to get through security and then changed into pants for the flights as I was concerned if I am unable to reach the loo during take-off or landing or turbulence but managed to always get there on time.
I worked for two weeks in the USA without major problems bar the constant hourly peeing which eased off after 3 weeks. Since then I have been on a business trip to Greece and South Africa without any problems.
I am now 6 weeks post RT and is back to completely normal activity.
Personal perspective and what helped:
I think my positive experience was helped by a few things as firstly I have a strong faith and belief in my God that makes all things work for my good in spite of my circumstances and a fantastic family supporting me. We took everything in our stride and laughed a lot about many things that would have been upsetting to others. We all prepared for the journey and tried to keep everything as constant as possible. Did the diet and all the other measures really make a difference I am not convinced but the positive attitude and having a constant routine and being pragmatic is what made my experience good.
I was physically fairly fit and active throughout and working for myself made life a lot easier and also the funds to pay for business flights to continue my work.
Having a medical background helped me to navigate through problems easier and that is why I have recorded my journey hoping this will help others along the way.
I can only thank all those who so kindly supported me, said a kind word or laugh together to make this experience just another bump in the road.
I hope those reading this will find this useful and know there a light in front.