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Tempted not to bother with radiotherapy

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User
Posted 10 Aug 2014 at 19:24

Due to start RT next Monday but after reading on here (probably too much) about long term side effects,in particular double incontinence.I was just wondering what would happen if I declined RT and took my chances,obviously the cancer would come back/regrow after the effects of the hormone therapy wears off but the question is how long before it will have a serious effect on me if I just wait and see?It's not that I'm scared of the treatment itself, but if two years down the line I have become incontinent,then I would find living with that totally unacceptable.I know many here say well 'at least I'm alive' and that's fine if they are happy to accept the possible serious permanent side effects that they may or may not get.I know that if I would have to use 6 to 8 pads a day,I would feel that it would be a poor quality of life that I will not put myself through.


Sorry to sound so depressing and most would say I should be grateful for the excellent service I have had from The NHS so far,I am but maybe my RT should go to someone who may appreciate it more than I do.


Regards


Chris


 


 


 


 


 


 

User
Posted 10 Aug 2014 at 22:07
Chris

I know what you are going through and I had exactly the same thoughts pre surgery. I had no pain etc and could see no reason to put myself though the side effects that "could" happen, especially as my surgeon said "if we do nothing you will still be here in 10 to 15 years time", that would take me to 77. That was probably the worst bit of info I was given. Eight months on from diagnosis life is almost back to normal and I think what an idiot. I still have the ED issue to cope with and a flow problem that hopefully will get sorted tomorrow. Like you I looked on the black side, but with me it was nothing like as bad as I expected and you could be the same.

Keep positive and make the right decision.

Thanks Chris
User
Posted 10 Aug 2014 at 23:00
Christopher,

Only you can decide on undergoing the treatment offered and you should do this in discussion with your oncologist. The oncologist would have offered RT because he thinks that it will improve your quality of life and, hopefully, survival prospects. I discussed surgery v RT with a urologist who considered that the side effect risks (in my case) would be less with RT. I then opted for RT. For what it's worth I asked several times before RT how long HT might work in my case. Each time the answer was the same: "don't know", reason being "every case is different". When I pressed the point I was told that HT might only last 9 months, but 2-3 years was common. My uncle has been on HT for 10 years after laser surgery and i'm aware of others for whom HT has worked for >10 years. Again, every case is different. It was made clear to me that HT wasn't a solution, but was an important part of the "gold standard" HT/RT combination radical treatment. When all this was explained I became keen to have RT and became more than a tad concerned when it was delayed by a few months. I finished my course mid-May and as I said in another of your threads the side effects have abated and the cancer is now in remission. I insisted on having IMRT which is offered by many NHS hospitals. IMRT enables much more accurate zapping of the tumour, thus reducing damage to healthy tissue and potential long term side effects. I'm still on HT and have been told I could be on it for many years although most are on it for 1-3 years post-RT. People I've spoken to are generally more concerned about HT than RT.

I didn't have any difficulty in choosing RT - the alternative of merely relying on HT looked much worse. This is a nasty disease and none of the treatments are easy. I was careful to follow the radiographers' advice on full bladder/empty bowel because this reduces the RT side effect risk.

HTH

Viv

User
Posted 10 Aug 2014 at 23:29
There are no details of your prognosis but I assume you have been offered RT as you are regarded as in the curable camp. It would be a big decision indeed to ignore that message. There are so many people who have had either surgery or RT and are now no longer troubled with PCa. I had RT for testicular cancer in 1982 and I am still here all those years on. Any treatment can have side effects and HT certainly has increasing side effects. I have been on HT for two and a half years and it takes its toll on my muscle and bone density and levels of fatigue but I am still here for now so will take that.

I can understand your doubts and your concerns but each person responds differently to treatment and many do not have substantial side effects. Talk to your consultant, express your fears but think again about missing out on a way out of this for some considerable time. I don't have this choice to make as I am incurable with bone mets spread but sure wish I had!
User
Posted 10 Aug 2014 at 23:40
If you decide to cancel the RT, there is no guarantee that your medics would recommend continuing with the HT. They may advise you instead to go onto active surveillance until the prostate cancer is causing you more problems. They might feel that you risk using up all the usefulness of the hormones too early.

What you might not have considered is that late stage PCa can itself cause bowel and / or urinary incontinence either because of the tumour pressing on other organs or by spreading. So you could decline curative treatment on the remote possibility of these problems (less than 4% of men have urinary incontinence 5 years after RT, bowel incontinence hardly ever happens these days although about 10% have blood or mucus in their stools 2 years post-RT. No data as far as I know for how many men are in both groups) and then find that in the final stages of your untreated disease you get them anyway.

I think that this is just a bit of pre-match nerves; stop reading stuff and talk to your nurse specialist or someone in the RT department at the hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2014 at 06:39
This is exactly what this forum is about

Good luck Christopher. I'm a year
Post RT and no side effects

Bri



User
Posted 11 Aug 2014 at 08:59
Good for you Christopher
Don't blame you for your concerns, glad you were able to express them here.

Good luck for your RT and for a PCa free future.

Best wishes
Allison
User
Posted 11 Aug 2014 at 09:42
Go for it, Christopher and keep sharing. It is so easy to get to a dark place but there are plenty here to talk you through it all.
User
Posted 11 Aug 2014 at 09:54

Good stuff Christopher,


I'm sure you have made the right call.


I also went under a cloud pre RT, as Lyn says it was pre match nerves / fear of the unknown / feeling of being on a conveyor belt. (take your pick)


 


This is a bizarre statement, but I thoroughly enjoyed my RT time. I met with real like minded patients who were going through similar, the staff were great. Plus it didn't hurt a bit! OK, sometimes a full bladder made it uncomfortable....


I'm a month or two out the other side now, and for the most part back to normal. 


Plus it is a real chance of getting rid of the wee beastie once and for all.


 


Go for it, you know it makes sense!


 


good luck


 


Kevin

User
Posted 11 Aug 2014 at 09:57

Thank you all for your outstanding comments,because of you I have left the dark place and come into the light.


 


I cannot tell you how much you have helped me over the past 24 hours.


 


God bless you all


 


Chris

User
Posted 11 Aug 2014 at 13:37
Good Luck Christopher for next week. Will be thinking of you.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails
User
Posted 11 Aug 2014 at 22:22

Hi Chris,


Glad to see you are going for it, well done, the people on this forum had the same effect in lifting my spirit, they are brilliant.


Lyn is spot on by the way, I did too much reading and got myself a bit down and had the pre-match nerves but the people on here got me through it. As Kevin also said, their is good camaraderie at the hospital with other patients and I am also enjoying it, sounds silly doesn't it?


I started RT last Monday 04/08/2014 and had my 6th session today, so far no side effects although it is early days.


I am posting my treatment journey on the forum as I progress, so you can follow me all the way if you wish, I will post any side effects or issues I have for your and others information.


Good luck and best wishes to ALL who are fighting cancer.


Regards,


Gerry

User
Posted 12 Aug 2014 at 00:15
Excellent decision Chris. If it is any comfort, John had the 8.30am appointment each day (with a couple of exceptions) and went straight from the hospital to work. He never missed a day of work, went to the gym most evenings on his way home, danced and carried on with his rugby. He had no side effects from the RT at all, apart from occasionally needing a nap in the afternoon ... either at his desk or by coming home a little early. Having said that, the tiredness was probably a side effect of the HT which he hated being on; so much so that he came off it much sooner than originally planned.

You will be fine, I am sure.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Aug 2014 at 18:45
Well done, good decision.

I found RT quite a fun experience. I met many interesting people in the waiting room. Lots of good natured banter. At the end of my treatment j even asked the radiographers slightly tongue in cheek if they'd like to do a few more treatments. Shaking their heads, they explained I'd had a big dose so no more. The next Monday I didn't know what to do with myself: no RT!

Good luck, Viv
User
Posted 07 Sep 2014 at 22:54

Hi Chris,

It is quite common to need to P more frequently during and for some time after ending RT. For a short time it got as bad as 8 times a night in my case but this gradually reduced until after a couple of months or so post RT it was back to my pre RT frequency of twice nightly. Rather unusually, I became a little constipated during RT, possibly due to a different and restricted diet during the period. Like many others, I subsequently experienced mucus with stools for some months post RT before this stopped. Some people also find a little blood in their stools. This may even happen years on due to veins becoming rather more fragile due to the RT a consultant told me.

Hope it goes well for you.

Barry
User
Posted 25 Sep 2014 at 07:49
Hi Chris, I've just had my prostate out and I'll admit to concerns about urinary incontinence -in my case once the post-operative catheter is removed. I'd just offer the thought that whilst incontinence isn't a bundle of laughs, it IS something which can be managed and is something that many people live with on a day to day basis. So, even if your worst fears were realised, whilst it would demand some change and some adapting to the situation, it would very probably be eminently manageable. I too have had some recent bowel problems, post opreatively, but getting back into better levels of activity and movement, a bit of tweaking the diet and a few sachets of Laxido, and I'm well on my way back to normal in that department. Good luck with your treatment.
Life is a journey. You can't move forward on a journey AND stay in the same place.
User
Posted 04 Nov 2014 at 09:43

hi Chris,

how you get on with the RT

I had to stop after 15 as fibro was getting realy bad

I assume it was radiation and the anxiety of drinking all that water

and waiting to go in wondering wether you going to pee yourself

having treatment

bob

Show Most Thanked Posts
User
Posted 10 Aug 2014 at 22:07
Chris

I know what you are going through and I had exactly the same thoughts pre surgery. I had no pain etc and could see no reason to put myself though the side effects that "could" happen, especially as my surgeon said "if we do nothing you will still be here in 10 to 15 years time", that would take me to 77. That was probably the worst bit of info I was given. Eight months on from diagnosis life is almost back to normal and I think what an idiot. I still have the ED issue to cope with and a flow problem that hopefully will get sorted tomorrow. Like you I looked on the black side, but with me it was nothing like as bad as I expected and you could be the same.

Keep positive and make the right decision.

Thanks Chris
User
Posted 10 Aug 2014 at 23:00
Christopher,

Only you can decide on undergoing the treatment offered and you should do this in discussion with your oncologist. The oncologist would have offered RT because he thinks that it will improve your quality of life and, hopefully, survival prospects. I discussed surgery v RT with a urologist who considered that the side effect risks (in my case) would be less with RT. I then opted for RT. For what it's worth I asked several times before RT how long HT might work in my case. Each time the answer was the same: "don't know", reason being "every case is different". When I pressed the point I was told that HT might only last 9 months, but 2-3 years was common. My uncle has been on HT for 10 years after laser surgery and i'm aware of others for whom HT has worked for >10 years. Again, every case is different. It was made clear to me that HT wasn't a solution, but was an important part of the "gold standard" HT/RT combination radical treatment. When all this was explained I became keen to have RT and became more than a tad concerned when it was delayed by a few months. I finished my course mid-May and as I said in another of your threads the side effects have abated and the cancer is now in remission. I insisted on having IMRT which is offered by many NHS hospitals. IMRT enables much more accurate zapping of the tumour, thus reducing damage to healthy tissue and potential long term side effects. I'm still on HT and have been told I could be on it for many years although most are on it for 1-3 years post-RT. People I've spoken to are generally more concerned about HT than RT.

I didn't have any difficulty in choosing RT - the alternative of merely relying on HT looked much worse. This is a nasty disease and none of the treatments are easy. I was careful to follow the radiographers' advice on full bladder/empty bowel because this reduces the RT side effect risk.

HTH

Viv

User
Posted 10 Aug 2014 at 23:29
There are no details of your prognosis but I assume you have been offered RT as you are regarded as in the curable camp. It would be a big decision indeed to ignore that message. There are so many people who have had either surgery or RT and are now no longer troubled with PCa. I had RT for testicular cancer in 1982 and I am still here all those years on. Any treatment can have side effects and HT certainly has increasing side effects. I have been on HT for two and a half years and it takes its toll on my muscle and bone density and levels of fatigue but I am still here for now so will take that.

I can understand your doubts and your concerns but each person responds differently to treatment and many do not have substantial side effects. Talk to your consultant, express your fears but think again about missing out on a way out of this for some considerable time. I don't have this choice to make as I am incurable with bone mets spread but sure wish I had!
User
Posted 10 Aug 2014 at 23:40
If you decide to cancel the RT, there is no guarantee that your medics would recommend continuing with the HT. They may advise you instead to go onto active surveillance until the prostate cancer is causing you more problems. They might feel that you risk using up all the usefulness of the hormones too early.

What you might not have considered is that late stage PCa can itself cause bowel and / or urinary incontinence either because of the tumour pressing on other organs or by spreading. So you could decline curative treatment on the remote possibility of these problems (less than 4% of men have urinary incontinence 5 years after RT, bowel incontinence hardly ever happens these days although about 10% have blood or mucus in their stools 2 years post-RT. No data as far as I know for how many men are in both groups) and then find that in the final stages of your untreated disease you get them anyway.

I think that this is just a bit of pre-match nerves; stop reading stuff and talk to your nurse specialist or someone in the RT department at the hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2014 at 00:15

Thank you all so very much for your replies,each one of you have convinced me to go ahead with RT next Monday.I dunno why but I seem to have been in a dark place for the last few days,I've been ok with it since I was first diagnosed in January but these last 2 or 3 days have been a bit strange and scary.


 


Lyn,I think you have hit the nail on the head re: pre-match nerves,you are also right about reading too much stuff,I told myself I wouldn't do that and I didn't right up to about 4 weeks ago.


 


Going to go to my first RT session next Monday with a very positive attitude as I am very confident I will cope with whatever side effects that may on may not come,If they do then I will address each problem as they arise.


 


Thanks again all


 


Christopher


 


 


 


 

Edited by member 11 Aug 2014 at 00:21  | Reason: Not specified

User
Posted 11 Aug 2014 at 06:39
This is exactly what this forum is about

Good luck Christopher. I'm a year
Post RT and no side effects

Bri



User
Posted 11 Aug 2014 at 08:59
Good for you Christopher
Don't blame you for your concerns, glad you were able to express them here.

Good luck for your RT and for a PCa free future.

Best wishes
Allison
User
Posted 11 Aug 2014 at 09:42
Go for it, Christopher and keep sharing. It is so easy to get to a dark place but there are plenty here to talk you through it all.
User
Posted 11 Aug 2014 at 09:54

Good stuff Christopher,


I'm sure you have made the right call.


I also went under a cloud pre RT, as Lyn says it was pre match nerves / fear of the unknown / feeling of being on a conveyor belt. (take your pick)


 


This is a bizarre statement, but I thoroughly enjoyed my RT time. I met with real like minded patients who were going through similar, the staff were great. Plus it didn't hurt a bit! OK, sometimes a full bladder made it uncomfortable....


I'm a month or two out the other side now, and for the most part back to normal. 


Plus it is a real chance of getting rid of the wee beastie once and for all.


 


Go for it, you know it makes sense!


 


good luck


 


Kevin

User
Posted 11 Aug 2014 at 09:57

Thank you all for your outstanding comments,because of you I have left the dark place and come into the light.


 


I cannot tell you how much you have helped me over the past 24 hours.


 


God bless you all


 


Chris

User
Posted 11 Aug 2014 at 13:37
Good Luck Christopher for next week. Will be thinking of you.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails
User
Posted 11 Aug 2014 at 22:22

Hi Chris,


Glad to see you are going for it, well done, the people on this forum had the same effect in lifting my spirit, they are brilliant.


Lyn is spot on by the way, I did too much reading and got myself a bit down and had the pre-match nerves but the people on here got me through it. As Kevin also said, their is good camaraderie at the hospital with other patients and I am also enjoying it, sounds silly doesn't it?


I started RT last Monday 04/08/2014 and had my 6th session today, so far no side effects although it is early days.


I am posting my treatment journey on the forum as I progress, so you can follow me all the way if you wish, I will post any side effects or issues I have for your and others information.


Good luck and best wishes to ALL who are fighting cancer.


Regards,


Gerry

User
Posted 12 Aug 2014 at 00:15
Excellent decision Chris. If it is any comfort, John had the 8.30am appointment each day (with a couple of exceptions) and went straight from the hospital to work. He never missed a day of work, went to the gym most evenings on his way home, danced and carried on with his rugby. He had no side effects from the RT at all, apart from occasionally needing a nap in the afternoon ... either at his desk or by coming home a little early. Having said that, the tiredness was probably a side effect of the HT which he hated being on; so much so that he came off it much sooner than originally planned.

You will be fine, I am sure.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Aug 2014 at 18:45
Well done, good decision.

I found RT quite a fun experience. I met many interesting people in the waiting room. Lots of good natured banter. At the end of my treatment j even asked the radiographers slightly tongue in cheek if they'd like to do a few more treatments. Shaking their heads, they explained I'd had a big dose so no more. The next Monday I didn't know what to do with myself: no RT!

Good luck, Viv
User
Posted 07 Sep 2014 at 17:02

Hi all,hope you are all well as can be expected.


Just thought I would do a quick post with a bit of an update.Got past the third of the way marker last Wednesday 3rd and I found it pretty easy so far,but the next day Thursday 4th,I'm starting to get a a niggle or two,I empty my bowels twice every morning but I am always left of this feeling of always wanting to go again but can't,best way to describe it is it's like having a torpedo in the tube but unable to fire it (what a terrible analogy eh?) the other thing is I'm up every two hours to pee,neither of these things are having too much effect on my daily life and I can and will cope with them,I just hope that they don't get any worse.


For me the worst thing is the delays,out of 14 treatments, 8 on time and 6 with half hour delay,one day was 45 minutes,it's not that I mind waiting as the R/T dept is brand spanking new and quite a nice place to be but NOT with a full bladder.I know that the staff do all they can to get you seen to on time but if there is the odd break down or a patient comes down from the ward,then it has a knock on effect, still,a small price to pay I think.


One concern I do have is that after finishing my 3rd week of R/T I have not been seen by a doctor in that time,is that normal?At the end of my 2nd week I did get seen by one of the radiologists asking me how I am and such like,is that good enough do you think?


That's it for now folks and I would be very grateful for any comments on the above.


I would also like to thank you all again for encouraging me to go ahead with the R/T as I do not have a single regret.


Kind regards


Chris


 


 


 


 


 

Edited by member 07 Sep 2014 at 17:04  | Reason: Not specified

User
Posted 07 Sep 2014 at 22:54

Hi Chris,

It is quite common to need to P more frequently during and for some time after ending RT. For a short time it got as bad as 8 times a night in my case but this gradually reduced until after a couple of months or so post RT it was back to my pre RT frequency of twice nightly. Rather unusually, I became a little constipated during RT, possibly due to a different and restricted diet during the period. Like many others, I subsequently experienced mucus with stools for some months post RT before this stopped. Some people also find a little blood in their stools. This may even happen years on due to veins becoming rather more fragile due to the RT a consultant told me.

Hope it goes well for you.

Barry
User
Posted 25 Sep 2014 at 07:49
Hi Chris, I've just had my prostate out and I'll admit to concerns about urinary incontinence -in my case once the post-operative catheter is removed. I'd just offer the thought that whilst incontinence isn't a bundle of laughs, it IS something which can be managed and is something that many people live with on a day to day basis. So, even if your worst fears were realised, whilst it would demand some change and some adapting to the situation, it would very probably be eminently manageable. I too have had some recent bowel problems, post opreatively, but getting back into better levels of activity and movement, a bit of tweaking the diet and a few sachets of Laxido, and I'm well on my way back to normal in that department. Good luck with your treatment.
Life is a journey. You can't move forward on a journey AND stay in the same place.
User
Posted 04 Nov 2014 at 09:43

hi Chris,

how you get on with the RT

I had to stop after 15 as fibro was getting realy bad

I assume it was radiation and the anxiety of drinking all that water

and waiting to go in wondering wether you going to pee yourself

having treatment

bob

 
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