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User
Posted 21 May 2018 at 10:34

I will try to be brief but the context will help to explain my challenge.


So I am a medical professional myself and as a very active person had a heart attack at the age of 53 and now age 57 was diagnosed with localised advanced prostate cancer. My diagnosis was due to my persistence and some good luck as I have had ED since age of 40 with an inflatable device inserted after everything else failed at age of 47. My device failed and was the reason why I went to see my Gp and he noticed my PSA has not been checked although I was suppose to be on surveillance as my dad had early aggressive prostate cancer. He was diagnosed at age 57, had an orchidectomy and before any other treatment started had another heart attack and died age 58. My PSA was only 8 and my urologist said risk is very low to have cancer but as I am in the trade they will do an MRI. MRI showed suspicion area and was referred to another urologist for potential saturation biopsy. Again was told low change and biopsy may make things worse but my choice. However I have been battling with backache, shoulder pain and severe fatigue for months so insisted on biopsy. Then result came back last week very extensive involvement with nearly each needle showing cancer cells as Gleason 3 but one area as seen on MRI shows grade  4 so treatment was suggested. Surgeon suggested robotic prostatectomy (RP) but said due to extensiveness will be hard to predict a clear margin at surgery. and may need some other treatment afterwards. Also told no need to look for metastases as very unlikely due to current scoring which is not entirely inline with international recommendations.


I asked for RT( radiotherapy) opinion as well and is due to see team later this week but this is were I would like your help as people who has lived it all.


I have researched the field and know the outcomes for RT and RP are about the same. Side effects vary but there is a lot of bias in the data as the sicker, older higher risk patients tended to get RT and younger surgical RP. So to me it looks like it is a toss of the coin as to which is the better option depending personal circumstances so here is mine. I retired from the NHS recently and started my own company helping doctors in low income countries as my lasting legacy. I work about 50 hours a week but at times I feel well enough to work and travel a lot to different countries and that is the core of my work. Ideally I would need another 3 years of this to make the company secure and can then take my foot off the gas. I can create a 8 week gap in my schedule for this year so which option is likely to fit best into a 8 week gap and allow me to fly soon and often after that.


What is quality of life to me - ability to work in low income countries with the rest of my family, see my grandchildren and help making  difference to others lives.


I would be keen to hear personal experiences from both RT and RP patients especially younger active group to add my own bias.


Thank you and some of your comments and experiences has been incredibly useful to me already.


 

User
Posted 16 Sep 2018 at 17:41

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:


 


Decision:


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. 


 


Tattoos:


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.


 


Dosing:


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.  


 


Side effects:


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. 


 


 


 


 


 

User
Posted 21 May 2018 at 17:16
Staging estimate is required to decide if RP is a good option. If it is and all goes well 8 weeks might be pushing it for a full on return to work but you would certainly be back in the fray!

I think the biggest issue with RT is the time taken recieving the treatment + the impact of any HT. Of course the real downside with RT is the possibility of delayed effects, at least with surgery you have a good idea what it has done to you a few weeks after and it should only get better from there..

Good luck in your treatment selection
User
Posted 21 May 2018 at 19:57

Age at dx 58, that was 14 years ago. PSA 6 - G8 . RT/HT. Check my profile.

luckily for me GP nor consultant didn't go down the low risk attitude route.

Ray

User
Posted 21 May 2018 at 20:04

I would have thought that the suggestion that adjuvant RT might be needed would be enough to conclude that surgery is not going to fit well with your priorities. Have you explored brachy with the oncologist?

Proton is not available in this country for PCa and trials in other countries have not been great for proton as a radical PCa treatment although its results as a salvage treatment are rather better.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 May 2018 at 23:29

Hi, It seems you've covered most bases.   I always see things a bit black and white and think you're going to have to decide between your health and your job, or seek a clever route through it all.  There is someone I thought was being very questioning who ended up with a Retzial Sparing operation.  That seemed to work well for him in that he had a fast recovery keeping his functions.  I'm not sure it's available on the NHS or if  he was lucky, even so it doesn't lower the chance of needing RT in your case.


So if it's a normal operation it will be followed by a week with a catheter, then after about 6 weeks a psa test and a doctors meeting.  Then wearing pads is likely for 3 months and psa tests every 3 months.   If you took the RT route you'd have hormones followed by 5 weeks RT followed by hormones and psa tests.  If you need RT after the op then you'd need to fit in another 5 weeks RT and perhaps hormone injections.  If you can work your job around one of those.  I think I could go back to an office job after about 6 weeks, we went to Australia for a month 7 weeks after my op.   For me, my health would come first although you might think a few days here or there might make things more workable.


I must admit I lost a bit of track on the above but must go to bed now.  Regards Peter

User
Posted 22 May 2018 at 01:31

It has to be considered that men can differ very much in their response to treatment and side effects, even in cases where diagnosis is similar. An example is incontinence. After prostatectomy, a few men have virtually full unary control within a matter of a few weeks whereas at the other extreme a very few men are permanently incontinent notwithstanding further procedures in some cases. There are a number things that can influence this but it can't be predetermined. For some men Surgery is followed sooner or later by RT. Although most men sail through RT with minor problems, there can be more serious problems further down the line that may call for further intervention, a more important consideration for a younger man with more expected years.

Situations can arise with PCa, particularly at the time or shortly after surgery or radiation that call for immediate or early further attention but until/if the disease advances over time, there is usually a period when immediate treatment is seldom required as the disease generally develops quite slowly if it has not been completely eradicated. Men are monitored largely by regular PSA tests at increasingly longer intervals if there are no other problems or concerns.

I hope your treatment enables you to do the work you plan. Premature death from PCa and the lead up to it is a rotten end and notwithstanding downsides of treatment, where circumstances lead consultants to say a man should have it, most men would accept this in the hope that it would cure or control the disease, thereby buying more time and hoping death would be for another reason.

Barry
User
Posted 27 Jun 2019 at 08:46

Sorry I have been busy with work and just saw the comments. My treatment was at the Christie in Manchester and they explained that to target the radiation best you need to be exactly the same at each treatment. Their experience is that the image is most consistent with an empty bladder and for that reason it is delivered with empty bladder. They also insist on sitting down for a pee to get bladder completely empty and all gas out to deliver treatment precisely. I had another PSA done today and is due follow up in next week and will report back . Still feeling very well and have adapted to peeing more frequently than before but a small price to pay. Also I have to keep taking Fybogel which suggests my gut is a little lazy after the RT.  My positive experience continues as I am still working full time for my own company and traveling across the world very frequently. 

Show Most Thanked Posts
User
Posted 21 May 2018 at 12:35

Hi Christian224

Welcome to this forum though sorry you join us because of your PCa diagnosis.
Wish you well in establishing your very worthwhile business but your plans may put constraints on your treatment or vise versa. Others who have had surgery are better placed to advise on this form of treatment so i will confine myself to HT/RT. It is most usually the case nowadays for men who are to have RT to have as a precursor for at least 3 months but up to 6 months or a little beyond of HT. Depending on the situation this HT may extend up to 3 years. HT can have side effects which limit tasks particularly if these are arduous. (I am sure that being a medical professional you are aware of these and I would not wish to state what you are probably well aware of). I was quite lucky for the 8 months I had HT. The worst effect for me being premature fatigue. I was still able to manage a few games of short tennis for example but then had to sit out more frequently and generally slowed down even walking more slowly and for shorter distances. RT exacerbated this and resulted in greater urinary frequency. I planned my journeys so I was able to use a toilet en route. At one stage I was getting up up to 8 times a night for a pee and this meant I had to spend more time resting during the day. This frequency gradually declined until after about 2 months when I was back to my pre treatment twice nightly level. Immediately after treatment I did use a device that used a tube to connect a slip over sheath on my penis to a bag on my leg. This was particularly helpful on long journeys and I wish I had had the system earlier.

The standard External Beam treatment is 37 fractions each of 2 Gy but some men have 20 fractions of about 3 Gy and this might fit better in your time frame if available to you. With quite extensive PCa in your Prostate Brachytherapy may not be an option. Further treatment may be needed in due course if radiation does not completely eradicate the cancer or it regrows in the prostate. Depending on the type of HT you could probably fit in the nominal monthly or 3 monthly injections.

It's difficult to know how much to post as we don't know how well your medical knowledge covers PCa and treatments. For men with little or average knowledge of the subject we normally recommend they obtain the 'Toolkit', available from the publications section of this Charity.

Barry
User
Posted 21 May 2018 at 17:16
Staging estimate is required to decide if RP is a good option. If it is and all goes well 8 weeks might be pushing it for a full on return to work but you would certainly be back in the fray!

I think the biggest issue with RT is the time taken recieving the treatment + the impact of any HT. Of course the real downside with RT is the possibility of delayed effects, at least with surgery you have a good idea what it has done to you a few weeks after and it should only get better from there..

Good luck in your treatment selection
User
Posted 21 May 2018 at 18:22
Dear Barry
Thank you and it was exactly the type of information I was looking for. It was very insightful and would be great to hear other views. Anyone had Proton bean therapy experience?
For the record I work in the ultra rare disease field and as our first patients are just surviving into adulthood my experience is very biased toward Pediatrics although I am trained to deal with adults as well.
User
Posted 21 May 2018 at 19:57

Age at dx 58, that was 14 years ago. PSA 6 - G8 . RT/HT. Check my profile.

luckily for me GP nor consultant didn't go down the low risk attitude route.

Ray

User
Posted 21 May 2018 at 20:04

I would have thought that the suggestion that adjuvant RT might be needed would be enough to conclude that surgery is not going to fit well with your priorities. Have you explored brachy with the oncologist?

Proton is not available in this country for PCa and trials in other countries have not been great for proton as a radical PCa treatment although its results as a salvage treatment are rather better.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 May 2018 at 23:29

Hi, It seems you've covered most bases.   I always see things a bit black and white and think you're going to have to decide between your health and your job, or seek a clever route through it all.  There is someone I thought was being very questioning who ended up with a Retzial Sparing operation.  That seemed to work well for him in that he had a fast recovery keeping his functions.  I'm not sure it's available on the NHS or if  he was lucky, even so it doesn't lower the chance of needing RT in your case.


So if it's a normal operation it will be followed by a week with a catheter, then after about 6 weeks a psa test and a doctors meeting.  Then wearing pads is likely for 3 months and psa tests every 3 months.   If you took the RT route you'd have hormones followed by 5 weeks RT followed by hormones and psa tests.  If you need RT after the op then you'd need to fit in another 5 weeks RT and perhaps hormone injections.  If you can work your job around one of those.  I think I could go back to an office job after about 6 weeks, we went to Australia for a month 7 weeks after my op.   For me, my health would come first although you might think a few days here or there might make things more workable.


I must admit I lost a bit of track on the above but must go to bed now.  Regards Peter

User
Posted 22 May 2018 at 01:31

It has to be considered that men can differ very much in their response to treatment and side effects, even in cases where diagnosis is similar. An example is incontinence. After prostatectomy, a few men have virtually full unary control within a matter of a few weeks whereas at the other extreme a very few men are permanently incontinent notwithstanding further procedures in some cases. There are a number things that can influence this but it can't be predetermined. For some men Surgery is followed sooner or later by RT. Although most men sail through RT with minor problems, there can be more serious problems further down the line that may call for further intervention, a more important consideration for a younger man with more expected years.

Situations can arise with PCa, particularly at the time or shortly after surgery or radiation that call for immediate or early further attention but until/if the disease advances over time, there is usually a period when immediate treatment is seldom required as the disease generally develops quite slowly if it has not been completely eradicated. Men are monitored largely by regular PSA tests at increasingly longer intervals if there are no other problems or concerns.

I hope your treatment enables you to do the work you plan. Premature death from PCa and the lead up to it is a rotten end and notwithstanding downsides of treatment, where circumstances lead consultants to say a man should have it, most men would accept this in the hope that it would cure or control the disease, thereby buying more time and hoping death would be for another reason.

Barry
User
Posted 24 May 2018 at 14:22

Quote:
PeteOct16;184191 There is someone I thought was being very questioning who ended up with a Retzial Sparing operation.  That seemed to work well for him in that he had a fast recovery keeping his functions.  I'm not sure it's available on the NHS or if  he was lucky, even so it doesn't lower the chance of needing RT in your case.


Regards Peter



Retzius-sparing prostatectomy surgery is available on the NHS, through a very limited number of hospitals. The reason is that the skill level required of the surgeon is such that the technique will never be mastered by “low volume surgeons”.


I believe the cost at a private clinic is £18,000-20,000.

Edited by member 24 May 2018 at 16:16  | Reason: Not specified

User
Posted 16 Sep 2018 at 17:41

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:


 


Decision:


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. 


 


Tattoos:


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.


 


Dosing:


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.  


 


Side effects:


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. 


 


 


 


 


 

User
Posted 16 Sep 2018 at 22:12
Firstly, very pleased that you learned strategies to cope and that your side effects were not severe. Also, it was good that you were able to work and make your visits abroad and that your family were very supportive.

Secondly, thank you for posting your experience.

If you you are able to, perhaps in due course you could let us know how your RT has (is) working on your cancer.
Barry
User
Posted 17 Sep 2018 at 09:51

Thank you Barry and I will post my journey as it continues. I have my follow up visit and PSA due in February. As I was informed PSA may rise directly after RT but treatment effect will be measurable after 6 months. I am also aware some RT side effects can develop much later and again will post if they develop. 

User
Posted 27 Feb 2019 at 14:04

Just a quick update as i saw my team now 7 months past RT. My PSA is 0.9 and my team is very happy with my progress. i also appreciate that i respresent the younger end of the spectrum which will support my good outcome.  i am feeling much better than before my treatment especially around fatigue. I have more stamina and all the aches and pains i had have gone. i have stopped my cranberry tablets for a few weeks but then my frequecy and blaoting increased. since restarting them it has settled down again so may be a placebo effect but it works so i will keep it going.


So overall my good experince continues and i am one of the lucky ones as i seemed to have flown through. 

User
Posted 27 Feb 2019 at 14:26
Great news!

Time to start focusing on life and getting fit etc.

PP
User
Posted 27 Feb 2019 at 15:41

Very positive update. Best wishes.

Ido4

User
Posted 27 Feb 2019 at 17:30
Christian, I'm undergoing RT myself at the moment at Clatterbridge on the Wirral (12 out of 32 fractions completed as of today). I'm intrigued that you said that you went to the loo immediately before having your treatment. The standard routine is to drink about a pint of water 20 minutes before treatment so your bladder is partially full, not empty, during treatment! I wonder why your advice was different?

Chris
User
Posted 27 Feb 2019 at 22:24
I had my rt treatment at Clatterbridge and when they asked you to drink your 3 cups of water I went to the loo to empty my bladder and then drank the water, which is what they advised me to do. This was Nov/Dec 2016. Perhaps if you start with a practically empty bladder then after 3 cups the bladder is the same each day.
Peter
User
Posted 28 Feb 2019 at 08:08

Originally Posted by: Online Community Member
I had my rt treatment at Clatterbridge and when they asked you to drink your 3 cups of water I went to the loo to empty my bladder and then drank the water, which is what they advised me to do. This was Nov/Dec 2016. Perhaps if you start with a practically empty bladder then after 3 cups the bladder is the same each day.
Peter


That's exactly the procedure I follow, Peter, but if I understand Christian correctly he had his treatment every day with an empty bladder, which surprises me.


Chris


 

User
Posted 28 Feb 2019 at 09:08
He night have meant bowel rather than bladder or it could simply be that his internal layout meant that the prostate was sitting clear of the bladder anyway. Or they may have wanted to include oart of the bladder in the zapping zone as they did with John.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Jun 2019 at 08:46

Sorry I have been busy with work and just saw the comments. My treatment was at the Christie in Manchester and they explained that to target the radiation best you need to be exactly the same at each treatment. Their experience is that the image is most consistent with an empty bladder and for that reason it is delivered with empty bladder. They also insist on sitting down for a pee to get bladder completely empty and all gas out to deliver treatment precisely. I had another PSA done today and is due follow up in next week and will report back . Still feeling very well and have adapted to peeing more frequently than before but a small price to pay. Also I have to keep taking Fybogel which suggests my gut is a little lazy after the RT.  My positive experience continues as I am still working full time for my own company and traveling across the world very frequently. 

User
Posted 17 Jul 2019 at 13:57

Quick update and saw my team again. PSA shows little bounce to 1.6 which is very normal and I was warned about at the start of RT. Consecutive raising values are the concern and now due back in a few months for another check. 

User
Posted 22 Dec 2019 at 08:22

Just a quick update. My PSA is 0.67 and I am still very well.  Wishing you all a very Happy Christmas and all the best for the New Year. 

User
Posted 29 Dec 2021 at 22:41
Just quick update as it is the end of another year. I am now 3 years post RT and still in remission. I have taken on work in Switzerland which was enforced by Covid and we have temporarily moved to Switzerland. I life a full and healthy life and one lesson learned was that I love cycling and I had I raised PSA when I cycled to my appointment and my urologist confirmed that staying off bicycle for 48 hours before test is good idea especially for those of us spending hours on a bike every week. Life can be good even after prostate cancer diagnosis so all the best for 2022.
User
Posted 29 Dec 2021 at 23:07
Great update and what a beautiful place to be - live your best life!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2021 at 23:31
Thank you for your update and very pleased you continue to do well and enjoy life. It's encouraging to others so look forward to hearing from you next year, if not before.
Barry
User
Posted 30 Dec 2021 at 09:07

Thanks for the update. You and I are on roughly the same time line. Glad we are both ok.

Dave

User
Posted 31 Dec 2021 at 16:52

Good news. All the best for 2022.

Ido4

 
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