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User
Posted 22 January 2017 21:16:31(UTC)
I was diagnosed a few months ago, and had a biopsy which went wrong, and consequently I was hospitalised with septicaemia. Since then I have a hormone injection and am due another at the end of this week. I've had an MRI and radio scans, and there's no 'spread'.
As of this moment I feel fine, although I haven't quite the control over my bladder which I had when younger. (I'm 78)
In a few days I'm due to see the local Urologist.

I gather that I'm almost certain to be referred for radiotherapy, which will taken seven weeks out of my life, be fairly uncomfortable and result in slightly distressing side-effects.

The question I ask myself is, is it worth it? Shall I really get any benefit or am I just going through the system?
User
Posted 22 January 2017 22:51:12(UTC)

old king cole,most people tolerate rt well,as they say everyone is different,i was worried about side effects before i started my rt at st jameses,bit daunting when you first see maching but radiotherapists soon put you at ease,just a few minutes and its over,plus you make friends in the waiting room and have a laugh,hardest part for me was timing my water drinking,you will be ok.cheers.

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User
Posted 23 January 2017 00:14:19(UTC)
I have had 24 of my 39 RT treatments I have not had any major side effects just a little with the water works and some stomach upsets which are probably caused by the change in eating time because of the times of the treatment.
The biggest problem I have is drinking the water I can drink pints of beer till the cows come home but when you are told to drink water and hold it for a certain length of time then the mind takes over .
Go for the treatment you will not have any problems
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User
Posted 23 January 2017 00:42:39(UTC)

Hi Old King Cole and welcome to this forum though sorry for the reason that brings you here.

It is unfortunate that you were hospitalised with Septicaemia following your biopsy. This does happen in some cases, particularly with the TRUS biopsy and infections can sometimes be difficult to overcome. So not an easy start to your PCa journey but at least the biopsy helped establish you had cancer and along with scan(s) the perceived extent.

Most men find RT a doddle, though a long commitment of about 7 weeks if you cannot have it as a a hyperfractionated course of 19 or 20 heavier dose fractions as some hospitals offer. I found the side effects of RT subside within a couple of months of RT and this is quite usual. There are possibilities of radiation prostatitis at some stage and late effects for some and the initiation of other cancers in the very long term for a few, (20 years or so has been mentioned). The effects of HT, particularly where this is given as an accompaniment to RT and may continue for many months after RT is more likely to result in more constant and debilitating side effects in most men than the RT.

The fact that you have already been started on HT and expect to be started on RT would suggest that it is considered that HT/RT would be of benefit and help restrain your cancer and possibly cure it, Active Surveillance not having been recommended as an option.

Whether you follow the plan consultants suggest is of course only a decision that you can make. If you are a 'Merry Old Soul' and wish to maximise your remaining years you may think the RT worth the slight inconvenience, it doesn't take all day to have RT and many men work for the rest of treatment days. On the other hand, if there are other issues which lead you to think you can expect only a few years, you may feel that you want to enjoy these without suffering the effects of treatment, until the PCa causes severe side effects if it advances.

I take the view, which I have formed through reading the stories of men suffering affects of advanced PCa, is that delaying these effects for as long as possible, so I die of something else, is my choice if possible.

If you can show your PSA on diagnosis along with Gleason score, staging and scan on your profile, these details will be helpful to members in seeing where you are and to make more meaningful replies. Also, if you have not yet done so, you might find it useful to obtain the 'Tool Kit', available from the publications section of the main part of this Charity.

Barry
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User
Posted 22 January 2017 22:26:02(UTC)

Sorry that you find yourself on here.

There are other members with more relevant experience who will be able to give more insight into their experiences.

Good luck with your journey.

Chris

User
Posted 22 January 2017 22:51:12(UTC)

old king cole,most people tolerate rt well,as they say everyone is different,i was worried about side effects before i started my rt at st jameses,bit daunting when you first see maching but radiotherapists soon put you at ease,just a few minutes and its over,plus you make friends in the waiting room and have a laugh,hardest part for me was timing my water drinking,you will be ok.cheers.

Thanked 1 time
User
Posted 23 January 2017 00:14:19(UTC)
I have had 24 of my 39 RT treatments I have not had any major side effects just a little with the water works and some stomach upsets which are probably caused by the change in eating time because of the times of the treatment.
The biggest problem I have is drinking the water I can drink pints of beer till the cows come home but when you are told to drink water and hold it for a certain length of time then the mind takes over .
Go for the treatment you will not have any problems
Thanked 1 time
User
Posted 23 January 2017 00:42:39(UTC)

Hi Old King Cole and welcome to this forum though sorry for the reason that brings you here.

It is unfortunate that you were hospitalised with Septicaemia following your biopsy. This does happen in some cases, particularly with the TRUS biopsy and infections can sometimes be difficult to overcome. So not an easy start to your PCa journey but at least the biopsy helped establish you had cancer and along with scan(s) the perceived extent.

Most men find RT a doddle, though a long commitment of about 7 weeks if you cannot have it as a a hyperfractionated course of 19 or 20 heavier dose fractions as some hospitals offer. I found the side effects of RT subside within a couple of months of RT and this is quite usual. There are possibilities of radiation prostatitis at some stage and late effects for some and the initiation of other cancers in the very long term for a few, (20 years or so has been mentioned). The effects of HT, particularly where this is given as an accompaniment to RT and may continue for many months after RT is more likely to result in more constant and debilitating side effects in most men than the RT.

The fact that you have already been started on HT and expect to be started on RT would suggest that it is considered that HT/RT would be of benefit and help restrain your cancer and possibly cure it, Active Surveillance not having been recommended as an option.

Whether you follow the plan consultants suggest is of course only a decision that you can make. If you are a 'Merry Old Soul' and wish to maximise your remaining years you may think the RT worth the slight inconvenience, it doesn't take all day to have RT and many men work for the rest of treatment days. On the other hand, if there are other issues which lead you to think you can expect only a few years, you may feel that you want to enjoy these without suffering the effects of treatment, until the PCa causes severe side effects if it advances.

I take the view, which I have formed through reading the stories of men suffering affects of advanced PCa, is that delaying these effects for as long as possible, so I die of something else, is my choice if possible.

If you can show your PSA on diagnosis along with Gleason score, staging and scan on your profile, these details will be helpful to members in seeing where you are and to make more meaningful replies. Also, if you have not yet done so, you might find it useful to obtain the 'Tool Kit', available from the publications section of the main part of this Charity.

Barry
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User
Posted 23 January 2017 10:24:37(UTC)

Thank you, gentlemen. I must admit I get a bit 'down' at times, particularly as I got the diagnosis of PCa about three months after a letter from elsewhere in the Oncology Unit that my bowel cancer, for which I was operated on about 6 years ago, could now be considered 'cured'!

As I said in my first letter, I'm due to see the oncologist on Tuesday, and I'll get the details of what and when then, although not, i would assume the exact time of the RT appointment. I take Barry's point very much ....... if all this works I'll be able to get on with everything again, with probably only minor inconveniences.

Again, thank you all for the reassurances; we'll see how it goes.

OKC

User
Posted 23 January 2017 23:43:01(UTC)
Hi OKC

Thanks for sharing this and all the best.
Good news scans look clear. Take advice and make decision on Grade in my humble opinion. Gleason 6 or even 7 (3 + 4) surely AS would certainly be an option. Again your overall physical and mental health. You have conquered bowel cancer.



All the best
User
Posted 24 January 2017 14:16:43(UTC)

Hi All.
Many, many thanks again for the supportive posts. Having seen the Registrar I'm now told that as I've had a partial colonectomy it is inadvisable to have RT, unless the situation deteriorates. So it's couple more hormone injections..... one on Friday, one end April, then repeat six monthly, with three monthly monitoring visits, with PSA levels. Last time they were looked at it was 8.7.

So, looks as though I can get on life and do the travelling, both in U.K. And further afield that I want to, provided I'm not away for longer than 3 months!

Thanks again for the support.

OKC

User
Posted 04 February 2017 14:48:01(UTC)

Delighted to report tatest PSA, end January, was 0.08. Feel much more cheerful about the world, although I don't seem to have the Get-up-and-Go that I did once. Maybe being nearly 79 has something to do with that!

Also I need to have a pee when I can, to avoid having to find somewhere urgently. Maybe that'll wear off in time. Getting up a couple of times a night is a nuisance.

Thanks for all the support on this board.

OKC

User
Posted 04 February 2017 18:11:30(UTC)

Good news for you OKC and long may it continue.

As for your "get up and go", well you've had a bit of trauma recently and really the time of year doesn't help does it.

Keep smiling and being positive

 

 

******

We can't control the winds - but we can adjust our sails
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User
Posted 04 February 2017 19:15:20(UTC)

I try to be positive; maybe I should try and win the Lottery!

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User
Posted 07 July 2017 06:36:53(UTC)

Well, haven’t posted for a while as I’ve found support from friends locally who have had prostate cancer, and radiotherapy, so haven’t felt so alone. And yes, the consultant has switched me onto R/t. At the moment its as well as as hormone therapy, which might, I hope, be discontinued at some point in the future. Few side effects, thopugh; hot flushes, which aren’t ‘helpful’ in hot weather, although we had a fortnight in the Canaries revently without too much discomfort, and the sunshine was worth it.

 

However, I had the first scan yesyerday, the one from which the dose of radiation is calculated, and all went very well. Much to my surprise I even managed to hiold the 350ml of water in my bladder for 90 minutes, although TBH I was glad to get rid of it. Three weeks now... 26th .... and the actual therapy starts. No-one in the unit seems to complain too much about side-effects.

 

However, roll on mid-September!

 
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