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Diet and Exercise

User
Posted 03 Apr 2018 at 23:28

HI, Gleason 4:5 locally advanced.

I am a very fit 66 year old. I am what is known a s a lifetime athlete. Road running and marathon racing from 1980 till 1992. Then switch to cycling in 1995 till now. All at high level. I still cycle 200 miles a week, compete in 60 mile events twice a month.

My question is;

I start Bicalutamide on the 9th April, as I go to Mallorca cycling on the 12th April till the 21st, this is planned so I can have my first Zoladex injection on Monday 23rd April. My Oncologist and Cancer nurse say "go for it, enjoy yourself, you need it mentally to prepare for radiotherapy in July"

 all this is good news for an athlete. Most i read on Bicalutamide refers to tiredness and dizziness etc. How does this relate to someone as fit as me? does anyone on here have any experience to help me. I will be cycling 60 plus miles a day on holiday, not a problem without the tablets, easy in fact, so as I am in the early stages of treatment, before the Zoladex, how will i feel. I am interested for advice.

this may seem strange to some prostate cancer sufferers on here, why I am worried about my fitness, but I know this can only help me through my next 6 month of hormone treatment and radiotherapy.

 

 

 

User
Posted 12 Feb 2019 at 10:20

 I know it’s been awhile since there were any posts in this thread but I thought I would update it nevertheless.

Ive been on Decapeptyl hormone therapy since April 2018 continuing through today and up to October 2019 when my oncologist has agreed I can come off hormone therapy at the 18 month point, after we discussed the pros and cons of 18 months versus 36 months hormone therapy.  I must point out she agreed this as after my radiotherapy three-month review my PSA was 0.5

As this thread is about diet and lifestyle I have a bit more to add.

 As this thread is about diet and lifestyle I have a bit more to add.

I gave up drinking alcohol  in November and this has had a profound effect on my hot flushes, they have reduced markedly in intensity and frequency. I am also on a reduced dairy diet which in my situation has also helped keep my weight down as the hormone therapy is well known for putting on weight around the waist and breast.

I have managed to keep on cycling at least five times a week and currently manage about 120 miles a week. This is in comparison to cycling seven days a week and over 200 miles a week before I found I had prostate cancer and went on hormone therapy.

 I have experienced some bad periods of breathlessness and also  dizziness when getting up after an extended period on the sofa.  I have found that keeping myself well hydrated has had a beneficial effect on the dizziness but my GP is not sure whether this dizziness is caused by the hormone therapy or orthostatic hypotension.

 As I come to the end of my first year of having been diagnosed and been treated for my  prostate cancer moving on with my life and trying to get as close back to normal as possible starts.  A positive mental attitude whatever your situation, is a massive benefit, it’s too easy to comfort eat, neglect your personal hygiene and appearance and drink alcohol as you feel sorry for yourself and “why me” sets in.

I could no longer go riding on my bike with my friends due to my loss of muscle tone and fatigue, which after many years of cycling with them was depressing, but rather than let that beat me, I have bought an electrically assisted bike which means I can now go out with them again and in fact I completed a 65 mile sportive group cycle ride last Sunday the sense of euphoria and well-being on completing this event was overpowering and emotional.

 My post radiotherapy meeting with my oncologist in November where I got my 0.5 PSA reading gave me a real boost, but I am now on quarterly PSA readings to check my progress and my next review is on the 4th of March and I know how important this will be, my PSA level needs to be below 0.5 and as I entered the last three weeks before this appointment my nerves are starting to jangle again.  I am well aware that my hormone therapy is suppressing my PSA reading and my PSA level should be 0.2 or lower if I am lucky.

I get my last Decapeptyl  injection in July which will run out in October. I then enter a nervous phase of six months whilst my testosterone recovers to somewhere near normal I nope, as I’m only 66.  Then the quarterly PSA tests after that will be crucial and I have been warned to expect a PSA bounce once I stop the hormone therapy, but then it should subside and I need to avoid having three significant PSA level rises in a row, because if I get that, It will mean my prostate cancer is coming back and I will have to go on hormone therapy for the rest of my life, a scenario I am not looking forward to.

 So that’s a pretty comprehensive update to where I am today with my diet and lifestyle living with prostate cancer after the treatment has finished 

User
Posted 04 Apr 2018 at 06:38
Hi, I guess I would put myself in your category as a fit person with prostate cancer. T4n1m1a Gleason 9, diagnosed Nov 2014.

I have biclutamide (first 9 months) zoladex (since diagnosis) , docetaxl early 20-5, radiotherapy mid 2016 and abiraterone since Jan 2016.

In that time I ran 2 marathons on chemo, competed in many multi day ultramarathons , have just finished the 6633 onetwenty in the Arctic and this Friday fly to the Sahara to compete in my 3rd Marathon Des Sables , all of these and much much more since I was diagnosed. Pre diagnosis I had run a few marathons and one 100k race.

My experience has been/is that I find pushing myself up hills fast almost impossible if they have any length, loss of muscle definition, hard to put muscle on, lose it easily HOWEVER....... I still do these races and finish respectably, I never worry about how fast anymore it's all about being there, my mindset has a peace to it that I never thought I had in me , I think ( well my wife says!) that the focus on the ultras keeps me sane and gives me a reason to stay fit and eat healthily, I also do every race for PCUK.

I have changed my diet at home, I am now predominantly vegan but when I am out I have what I want ( I don't seem to want steak etc now anyway) and believe (and if I believe it that's good enough for me) that the blend of sanity, exercise, diet and raising funds for PCUK give me a wonderful life and the last 3 years despite all the cancer rubbish have been the best, I feel I am generally doing good.

Not sure if that helps but I guess my message is realign your goals in terms of time but push yourself in terms of distance!

Enjoy today, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 03 Apr 2018 at 23:28

HI, Gleason 4:5 locally advanced.

I am a very fit 66 year old. I am what is known a s a lifetime athlete. Road running and marathon racing from 1980 till 1992. Then switch to cycling in 1995 till now. All at high level. I still cycle 200 miles a week, compete in 60 mile events twice a month.

My question is;

I start Bicalutamide on the 9th April, as I go to Mallorca cycling on the 12th April till the 21st, this is planned so I can have my first Zoladex injection on Monday 23rd April. My Oncologist and Cancer nurse say "go for it, enjoy yourself, you need it mentally to prepare for radiotherapy in July"

 all this is good news for an athlete. Most i read on Bicalutamide refers to tiredness and dizziness etc. How does this relate to someone as fit as me? does anyone on here have any experience to help me. I will be cycling 60 plus miles a day on holiday, not a problem without the tablets, easy in fact, so as I am in the early stages of treatment, before the Zoladex, how will i feel. I am interested for advice.

this may seem strange to some prostate cancer sufferers on here, why I am worried about my fitness, but I know this can only help me through my next 6 month of hormone treatment and radiotherapy.

 

 

 

User
Posted 06 Mar 2019 at 12:21

I'm a cyclist doing around 2000 kCals/week (more in summer, less in winter).

I've been on Bicalutamide for 6 months, and it made no large difference to my fitness, weight, or body fat level, but I've been more careful with what I eat than I was before, as an attempt to avoid putting on weight. I bought body composition scales and monitor my body weight and fat/muscle daily, and have it graphed in an Excel spreadsheet. The only change over this period is that my visceral fat has increased, although my total body fat has dropped a little, so it looks like it's moved around.

In the unseasonably good weather we've had over last few weeks, I've increased to 3000 kCals/week and put on weight, but using the body composition scales, I can see this is both muscle gain and fat loss, so I'm quite pleased.

I've just switched from Bicalutamide (wasn't lowering PSA enough) to Zoladex, so I can't yet comment on what impact that might have.

User
Posted 06 Mar 2019 at 14:32

Originally Posted by: Online Community Member

Thanks for the advice Alan. 7 weeks to London. 8 weeks to radiotherapy! Sport has been a major part of my life and I've got a reputation to maintain! I think I'll make London my last event as a serious competitor. I was planning an iron man event in July but I think I'll scrub that. Looking forward to a summer on the bike. 🚴‍♂️🏁🏃‍♂️

I see you said you live in Portishead funnily enough 2 of us are cycling there from Weston to the Lido for coffee tomorrow, ill be on my new Ribble  endurance e-bike, But it depends on the weather of course, but I guess you’re working if you’re on Strava I follow you, or i can get in contact with you or send me your email address.  I don’t like putting details on here so I’ll try sending you a personal message with my details 

 Also I am a retired marathon and road runner I first did the London Marathon in 1986 when I was in the army it was a fantastic event we had to run in our Army strip,  but it was a great event I did 2:35:09.  Eventually all the road running a marathon running gave me degraded discs in my lower back so I just changed to cycling I have been to the Alps or Majorca for the last eight years but I have had to give it up this year due to the hormone therapy and the after-effects of five weeks radiotherapy which I had in August last year.  But there is no way I am giving up on my target, which is to do the Ride London on my 70th birthday in 2022 by then I will of been off Hormone therapy for two years and hopefully got some muscle tone and stamina back.  I rode every day through my five weeks radiotherapy and a lot of the tiredness you feel is mental and some days I just did 45 minutes bike ride but when I got back I felt much better for it whatever you do if you think you are tired don’t lay on the sofa but also don’t overextend yourself Do what feels right I was helped by the fact I’ve got a good turbo trainer and I knew that I could carry on cycling on Zwift and just step off when I really knew I had had enough but I was lucky to have my radiotherapy during August which made me feel better because of the sunny days

Edited by member 06 Mar 2019 at 14:46  | Reason: Not specified

User
Posted 06 Mar 2019 at 21:41

 It really breaks my heart to see posts from people like Peter W who has had prostatectomy 4 years ago and now has a recurrence of his prostate cancer.  I think I am well aware I’m correct in saying that most oncologists say that if we have five years cancer free you are well into  remission.  1+ side is that Peter lives about 25 miles from me and he is also a keen cyclist and we have made contact off this website to meet up and share our passion for cycling.

 My great interest in this and my empathy is that my latest PSA reading two weeks ago was 0.2 so I am in the position where my countdown to 5 years prostate cancer free has probably started. 

 

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User
Posted 04 Apr 2018 at 00:24

You are unlikely to experience side effects that quickly. Enjoy the holiday.

PS - were you offered anything to help prevent or minimise man boob problems?

PPS once the HT starts in earnest, your level of fitness will not determine how much you suffer from fatigue, breathlessness, moobs, etc - it isn’t as simple as ‘unfit men have problems and fit men don’t’. You will likely lose muscle tone as your body feminises, and may have some aches and pains as the ligaments loosen, but you can offset most of that by staying active. The breathlessness doesn’t seem to affect everyone. People that have experienced it often say that they had no concept of what fatigue is until it actually happened - John was probably similar to you in terms of fitness and he had a bit of tiredness but carried on his sports normally - some are not so lucky and find they are completely debilitated.

Edited by member 04 Apr 2018 at 00:34  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Apr 2018 at 06:38
Hi, I guess I would put myself in your category as a fit person with prostate cancer. T4n1m1a Gleason 9, diagnosed Nov 2014.

I have biclutamide (first 9 months) zoladex (since diagnosis) , docetaxl early 20-5, radiotherapy mid 2016 and abiraterone since Jan 2016.

In that time I ran 2 marathons on chemo, competed in many multi day ultramarathons , have just finished the 6633 onetwenty in the Arctic and this Friday fly to the Sahara to compete in my 3rd Marathon Des Sables , all of these and much much more since I was diagnosed. Pre diagnosis I had run a few marathons and one 100k race.

My experience has been/is that I find pushing myself up hills fast almost impossible if they have any length, loss of muscle definition, hard to put muscle on, lose it easily HOWEVER....... I still do these races and finish respectably, I never worry about how fast anymore it's all about being there, my mindset has a peace to it that I never thought I had in me , I think ( well my wife says!) that the focus on the ultras keeps me sane and gives me a reason to stay fit and eat healthily, I also do every race for PCUK.

I have changed my diet at home, I am now predominantly vegan but when I am out I have what I want ( I don't seem to want steak etc now anyway) and believe (and if I believe it that's good enough for me) that the blend of sanity, exercise, diet and raising funds for PCUK give me a wonderful life and the last 3 years despite all the cancer rubbish have been the best, I feel I am generally doing good.

Not sure if that helps but I guess my message is realign your goals in terms of time but push yourself in terms of distance!

Enjoy today, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 05 Apr 2018 at 16:01
Originally Posted by: Online Community Member
Hi, I guess I would put myself in your category as a fit person with prostate cancer. T4n1m1a Gleason 9, diagnosed Nov 2014.

I have biclutamide (first 9 months) zoladex (since diagnosis) , docetaxl early 20-5, radiotherapy mid 2016 and abiraterone since Jan 2016.

In that time I ran 2 marathons on chemo, competed in many multi day ultramarathons , have just finished the 6633 onetwenty in the Arctic and this Friday fly to the Sahara to compete in my 3rd Marathon Des Sables , all of these and much much more since I was diagnosed. Pre diagnosis I had run a few marathons and one 100k race.

My experience has been/is that I find pushing myself up hills fast almost impossible if they have any length, loss of muscle definition, hard to put muscle on, lose it easily HOWEVER....... I still do these races and finish respectably, I never worry about how fast anymore it's all about being there, my mindset has a peace to it that I never thought I had in me , I think ( well my wife says!) that the focus on the ultras keeps me sane and gives me a reason to stay fit and eat healthily, I also do every race for PCUK.

I have changed my diet at home, I am now predominantly vegan but when I am out I have what I want ( I don't seem to want steak etc now anyway) and believe (and if I believe it that's good enough for me) that the blend of sanity, exercise, diet and raising funds for PCUK give me a wonderful life and the last 3 years despite all the cancer rubbish have been the best, I feel I am generally doing good.

Not sure if that helps but I guess my message is realign your goals in terms of time but push yourself in terms of distance!

Enjoy today, Kev

Brilliant irun, thanks very much. I retired from marathon and distance running in 1992 due to disc issues associated with too much road pounding! So I switched to cycling, now I compete regularly in 60 mile events and push myself hard up hills. Your view is valued.

User
Posted 05 Apr 2018 at 16:07
Originally Posted by: Online Community Member

You are unlikely to experience side effects that quickly. Enjoy the holiday.

PS - were you offered anything to help prevent or minimise man boob problems?

PPS once the HT starts in earnest, your level of fitness will not determine how much you suffer from fatigue, breathlessness, moobs, etc - it isn’t as simple as ‘unfit men have problems and fit men don’t’. You will likely lose muscle tone as your body feminises, and may have some aches and pains as the ligaments loosen, but you can offset most of that by staying active. The breathlessness doesn’t seem to affect everyone. People that have experienced it often say that they had no concept of what fatigue is until it actually happened - John was probably similar to you in terms of fitness and he had a bit of tiredness but carried on his sports normally - some are not so lucky and find they are completely debilitated.

It’s interesting your comment about loosing muscle tone as my body feminises. Fit women athletes do well. Do you mean I will loose muscle tone to a certain level then it will stabilise?

User
Posted 05 Apr 2018 at 16:34

Testosterone fuelled muscle building is different to women's - with the exception perhaps of a handful of female body builders - so it is harder to maintain strength on HT. I guess that's why women are not allowed to box against men, and world records for many sports are higher for men than for women. While on HT, many men find their bodies do pretty much as a teenage girl's does as it prepares for future child-bearing - the hips widen, some fat is laid down around the waist, breasts start to grow, hip flexors loosen, etc. But as I said, you can offset much of the muscle loss with regular exercise.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jun 2018 at 15:10

Quite a bit of time has passed since I started topic. 

7th week of HT and I’m still cycling well, although reduced distance to be fair.

Diet  is definitely going to be my next issue  information I have from radiology department where I will be treated is a high-fibre diet will be beneficial whilst undergoing 6 weeks treatment.

 Trying to find a balanced diet to give me more calcium because of the Triptorelin therapy, enough energy to keep cycling, and high fibre diet,  coupled with eating healthily is going to be quite difficult to get right. I do t want to just stuff myself with pills to get the balance right.

 I would appreciate any feedback anyone can give me 

Edited by member 08 Jun 2018 at 15:11  | Reason: Added a line

User
Posted 08 Jun 2018 at 15:38
Just be very conscious that if you start to have "loose" bowel movements/diarrhea then you'll need to switch to a low fibre diet. I had this after only 2 weeks and I'm still suffering 7 weeks later (i'm absolutely sick!).

The radiographers or specialist uro/oncology nurses will likely have a dietary advice sheet for radiotherapy treatment to the prostate or bladder.

Richard

User
Posted 12 Feb 2019 at 10:20

 I know it’s been awhile since there were any posts in this thread but I thought I would update it nevertheless.

Ive been on Decapeptyl hormone therapy since April 2018 continuing through today and up to October 2019 when my oncologist has agreed I can come off hormone therapy at the 18 month point, after we discussed the pros and cons of 18 months versus 36 months hormone therapy.  I must point out she agreed this as after my radiotherapy three-month review my PSA was 0.5

As this thread is about diet and lifestyle I have a bit more to add.

 As this thread is about diet and lifestyle I have a bit more to add.

I gave up drinking alcohol  in November and this has had a profound effect on my hot flushes, they have reduced markedly in intensity and frequency. I am also on a reduced dairy diet which in my situation has also helped keep my weight down as the hormone therapy is well known for putting on weight around the waist and breast.

I have managed to keep on cycling at least five times a week and currently manage about 120 miles a week. This is in comparison to cycling seven days a week and over 200 miles a week before I found I had prostate cancer and went on hormone therapy.

 I have experienced some bad periods of breathlessness and also  dizziness when getting up after an extended period on the sofa.  I have found that keeping myself well hydrated has had a beneficial effect on the dizziness but my GP is not sure whether this dizziness is caused by the hormone therapy or orthostatic hypotension.

 As I come to the end of my first year of having been diagnosed and been treated for my  prostate cancer moving on with my life and trying to get as close back to normal as possible starts.  A positive mental attitude whatever your situation, is a massive benefit, it’s too easy to comfort eat, neglect your personal hygiene and appearance and drink alcohol as you feel sorry for yourself and “why me” sets in.

I could no longer go riding on my bike with my friends due to my loss of muscle tone and fatigue, which after many years of cycling with them was depressing, but rather than let that beat me, I have bought an electrically assisted bike which means I can now go out with them again and in fact I completed a 65 mile sportive group cycle ride last Sunday the sense of euphoria and well-being on completing this event was overpowering and emotional.

 My post radiotherapy meeting with my oncologist in November where I got my 0.5 PSA reading gave me a real boost, but I am now on quarterly PSA readings to check my progress and my next review is on the 4th of March and I know how important this will be, my PSA level needs to be below 0.5 and as I entered the last three weeks before this appointment my nerves are starting to jangle again.  I am well aware that my hormone therapy is suppressing my PSA reading and my PSA level should be 0.2 or lower if I am lucky.

I get my last Decapeptyl  injection in July which will run out in October. I then enter a nervous phase of six months whilst my testosterone recovers to somewhere near normal I nope, as I’m only 66.  Then the quarterly PSA tests after that will be crucial and I have been warned to expect a PSA bounce once I stop the hormone therapy, but then it should subside and I need to avoid having three significant PSA level rises in a row, because if I get that, It will mean my prostate cancer is coming back and I will have to go on hormone therapy for the rest of my life, a scenario I am not looking forward to.

 So that’s a pretty comprehensive update to where I am today with my diet and lifestyle living with prostate cancer after the treatment has finished 

User
Posted 12 Feb 2019 at 14:36
Thanks for posting this, Alan. You know where I am on my journey, and this is very useful information to have.

Chris

User
Posted 12 Feb 2019 at 16:12

Yes thanks Alan , good info as always.

Good luck with the next PSA. 

Phil

User
Posted 06 Mar 2019 at 11:26

Hi Alan

My first time on these forums. I've found a few of your posts and they have been very helpful to me. I had RP four years ago and thought I was now cancer free. But yesterday recurrence was confirmed and I have been prescribed Bicalutamide; I have delayed radiotherapy until after the London Marathon.

I was a successful competitive cyclist until I started duathlon and triathlon when I turned 50. 

In the short term I'm really concerned about starting the HT as I guess it will have an adverse effect on my training on the lead up to the Marathon and on my performance on the day.

Once I'm over that hurdle I'm sure I will (reluctantly) come to terms with it. 

I was planning a return to more cycling after the marathon and hope to maintain as much fitness as I can whilst undergoing and after RT. 

I'd be grateful for any advice you can give me.

I tried to send you a personal message but was unable to. Want to join up for a ride sometime?

Pete, Portishead

User
Posted 06 Mar 2019 at 12:21

I'm a cyclist doing around 2000 kCals/week (more in summer, less in winter).

I've been on Bicalutamide for 6 months, and it made no large difference to my fitness, weight, or body fat level, but I've been more careful with what I eat than I was before, as an attempt to avoid putting on weight. I bought body composition scales and monitor my body weight and fat/muscle daily, and have it graphed in an Excel spreadsheet. The only change over this period is that my visceral fat has increased, although my total body fat has dropped a little, so it looks like it's moved around.

In the unseasonably good weather we've had over last few weeks, I've increased to 3000 kCals/week and put on weight, but using the body composition scales, I can see this is both muscle gain and fat loss, so I'm quite pleased.

I've just switched from Bicalutamide (wasn't lowering PSA enough) to Zoladex, so I can't yet comment on what impact that might have.

User
Posted 06 Mar 2019 at 14:04

Originally Posted by: Online Community Member

Hi Alan

My first time on these forums. I've found a few of your posts and they have been very helpful to me. I had RP four years ago and thought I was now cancer free. But yesterday recurrence was confirmed and I have been prescribed Bicalutamide; I have delayed radiotherapy until after the London Marathon.

I was a successful competitive cyclist until I started duathlon and triathlon when I turned 50. 

In the short term I'm really concerned about starting the HT as I guess it will have an adverse effect on my training on the lead up to the Marathon and on my performance on the day.

Once I'm over that hurdle I'm sure I will (reluctantly) come to terms with it. 

I was planning a return to more cycling after the marathon and hope to maintain as much fitness as I can whilst undergoing and after RT. 

I'd be grateful for any advice you can give me.

I tried to send you a personal message but was unable to. Want to join up for a ride sometime?

Pete, Portishead

Pete,

Sorry to hear of your PC’s recurrance, i do know how you must feel. Its not long to the London Marathon, about 5 weeks?  In fact I delayed my hormone therapy first injection for about 4veeeks until after I had got back from a cycling holiday in Majorca.  It is unlikely that starting Bicalutamide hormone therapy now would affect your time in London, but mentally it might have an affect on how you approach the event on the day,  but I’m also sure a five week delay would not have a catastrophic affect on your situation,  all I can say is as a sportsman is, I know what I would do. My oncologist encouraged me to get out and do my event and start my treatment on return.  I’m at a crossroads now where one week ago my PSA was At its Nadir of 0.2.  This means I will have my last hormone therapy injection in July which will last three months  until October.  Then by the time I reach my 68th birthday in April 2020 I should be back to normal testosterone.  In terms of the effect of hormone therapy Pete, as I’ve said in another post I was leathaly effective on hills before I started the hormone therapy and now although I have flashes of how are used to be when I’m on the bike it doesn’t last more than 30 seconds and although I can still do a 65 mile bike ride it takes me 48 hours to get over it where as in the past especially last April I was in Majorca with friends doing 60 to 70 miles a day without any problems.  I do really have empathy with you as I know most oncologists say if you can reach the five-year point you are effectively in remission all I can say is keeping as fit as I could  manage has helped me through everything. If there’s anything else I can help you with please keep in touch 

Edited by member 06 Mar 2019 at 14:10  | Reason: Not specified

User
Posted 06 Mar 2019 at 14:28

Thanks for the advice Alan. 7 weeks to London. 8 weeks to radiotherapy! Sport has been a major part of my life and I've got a reputation to maintain! I think I'll make London my last event as a serious competitor. I was planning an iron man event in July but I think I'll scrub that. Looking forward to a summer on the bike. 🚴‍♂️🏁🏃‍♂️

User
Posted 06 Mar 2019 at 14:32

Originally Posted by: Online Community Member

Thanks for the advice Alan. 7 weeks to London. 8 weeks to radiotherapy! Sport has been a major part of my life and I've got a reputation to maintain! I think I'll make London my last event as a serious competitor. I was planning an iron man event in July but I think I'll scrub that. Looking forward to a summer on the bike. 🚴‍♂️🏁🏃‍♂️

I see you said you live in Portishead funnily enough 2 of us are cycling there from Weston to the Lido for coffee tomorrow, ill be on my new Ribble  endurance e-bike, But it depends on the weather of course, but I guess you’re working if you’re on Strava I follow you, or i can get in contact with you or send me your email address.  I don’t like putting details on here so I’ll try sending you a personal message with my details 

 Also I am a retired marathon and road runner I first did the London Marathon in 1986 when I was in the army it was a fantastic event we had to run in our Army strip,  but it was a great event I did 2:35:09.  Eventually all the road running a marathon running gave me degraded discs in my lower back so I just changed to cycling I have been to the Alps or Majorca for the last eight years but I have had to give it up this year due to the hormone therapy and the after-effects of five weeks radiotherapy which I had in August last year.  But there is no way I am giving up on my target, which is to do the Ride London on my 70th birthday in 2022 by then I will of been off Hormone therapy for two years and hopefully got some muscle tone and stamina back.  I rode every day through my five weeks radiotherapy and a lot of the tiredness you feel is mental and some days I just did 45 minutes bike ride but when I got back I felt much better for it whatever you do if you think you are tired don’t lay on the sofa but also don’t overextend yourself Do what feels right I was helped by the fact I’ve got a good turbo trainer and I knew that I could carry on cycling on Zwift and just step off when I really knew I had had enough but I was lucky to have my radiotherapy during August which made me feel better because of the sunny days

Edited by member 06 Mar 2019 at 14:46  | Reason: Not specified

User
Posted 06 Mar 2019 at 17:25
John is doing Ride London this year for PCUK
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2019 at 17:32

Im doing Great Weston Ride for PC UK in July. its 57 miles from Bristol To Weston Super Mare.

2018 in my diagnosis year i raised £1200 but im finding raising sponsors hard thís year. As im retired and new in my area im left with asking Facebook friends, who backed me well last year. saying that im on £145 with 3 months to go

not sure i could do 100 miles now even on the ebike

Edited by member 06 Mar 2019 at 17:34  | Reason: Not specified

User
Posted 06 Mar 2019 at 19:56
You are doing amazingly - remember that John is much younger and he is now coming up to 7 years post-RT or something like that. Plus he was always very determined - he climbed Kilimanjaro for Marie Curie in between the RP and the RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2019 at 21:41

 It really breaks my heart to see posts from people like Peter W who has had prostatectomy 4 years ago and now has a recurrence of his prostate cancer.  I think I am well aware I’m correct in saying that most oncologists say that if we have five years cancer free you are well into  remission.  1+ side is that Peter lives about 25 miles from me and he is also a keen cyclist and we have made contact off this website to meet up and share our passion for cycling.

 My great interest in this and my empathy is that my latest PSA reading two weeks ago was 0.2 so I am in the position where my countdown to 5 years prostate cancer free has probably started. 

 

User
Posted 06 Mar 2019 at 21:53

Thanks Lynn, Although reading your profile I had missed any comment on Jon’s age. We all get so swept up in our own case and the situation that we sometimes forget other peoples problems.

When I spoke to my assigned cancer nurse  at my recent review when she told me about my 0.2 reading  I asked her about where I go from here in relation to my opening reading of 38 to my current 0.2 PSA reading.

 She told me she had been a nurse for 30 years and even though I stop HT this October she said with my progress and post RT  prognosis it was extremely unlikely that my cancer would come back.

 But I am under no illusion as to where I am going from here especially looking at Pete W’s post.

I am not refuting an oncologists prognosis on my situation, but with the reality of what could happen, I might be 0.2 now but I’m still on hormone therapy until October and nobody knows what will happen once I stop the therapy.

I am totally realistic about where I am going from now until after I stop formal HT and where I go on from there I will keep everybody on here updated to aid them in looking at their own situation

 

Edited by member 06 Mar 2019 at 21:57  | Reason: spelling

User
Posted 06 Mar 2019 at 22:29

My membership and posting on this site have changed so much in the last year.

I got my diagnosis of Gleason 4:5 T2c exactly 1 year ago.

 I joined this site in an extremely distressed state from knowing nothing at all about my situation and I have progressed to where I am today mainly due to the support and advice I have received  here.

 I have received a lot of information to assist me on my journey and much of it has been Given in a balanced and informative manner for that I am extremely grateful.

Of course there are too many to mention But I would like to mention Lynn, advice always given in a straightforward manner, for always giving a balanced and informative reply to all my questions.

I find myself moving on from when I really needed mainstream help on this site to come to terms with my cancer, to the situation where I can now offer help to people newly diagnosed.

  I suppose it is typical that now I have completed a year of hormone therapy and five weeks of radiotherapy and move towards remission I find myself perhaps needing less help from this site.

 But I would always keep up-to-date with the site to see if there is anything at all that I have experienced in my journey that may help others who are newly diagnosed 

 

 

Edited by member 06 Mar 2019 at 22:34  | Reason: Not specified

User
Posted 06 Mar 2019 at 22:38

Originally Posted by: Online Community Member

 I think I am well aware I’m correct in saying that most oncologists say that if we have five years cancer free you are well into remission.  

That seems to be a bit of a misunderstanding - NHS position is that remission is 10 years progression free, not 5 years. Anyone getting to 5 years should celebrate but never take their eye off the ball - my dad was undetectable for 13 years but it still came back. 

Your PSA is holding low and steady on HT and your team will be looking for your nadir around 18 months post-RT - if you are no longer on HT at that point then it will be your true nadir which will be fine as long as it is under 2.0

I have good vibes for you, my friend 

 

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2019 at 22:39
Only a year! It seems like we have been together so much longer 😉
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2019 at 22:42

Originally Posted by: Online Community Member
Thanks Lynn, Although reading your profile I had missed any comment on Jon’s age. We all get so swept up in our own case and the situation that we sometimes forget other peoples problems.

 

Ah no, I meant it the other way - that he is younger AND 7 years post-treatment so the Ride London 100 is not as challenging as you doing the 57 miler 🚴‍♂️👍

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Mar 2019 at 08:12

Just caught up on all your posts Lynn and Alan. My PSA count is still very low (from zero steadily rising to 0.3 in 12 months). I was surprised how enthusiastic the oncologist was to get treatment started straight away. I had anticipated him to say to watch it steadily rising and start RT and HT later. Or worse start long term HT: I've always had a dread of HT due to the side effects I have read about. 

I had hoped to remain fit and "healthy" until my planned retirement autumn next year when my daughter finishes her midwife training.

But I guess it's best to get this thing dealt with and get back to a good state of fitness next year. I've still not done an Ironman or ultra run. And I was keen to get back to time trialling! 

I'm going through a difficult time but it's been really helpful chatting in this forum. Hope to meet you soon Alan. 🚴‍♂️🚴‍♂️

 
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