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User
Posted 09 Aug 2017 at 06:39
Hi all....saw the Urologist yesterday...he summoned me after my appointment with the Oncologist 2 weeks ago.....basically he was concerned that I was 'dithering' on my decision to have RT on my P bed and affected Lymph Nodes......

I am one month into my HT.....Zoladex...and all is going well so far.....RT would be a few months hence...

My concerns are the side effects of RT that might be permanent.....at present everything is fine...

He said that the potential benefits far outweighed the risk of side effects....which were minimal in my case....

He reckoned that I still had a good possibility of remission from the cancer...and without RT that chance would be lost and I would be on HT and probably other treatments for life...

What to do?...

Paul...

User
Posted 09 Aug 2017 at 23:40

Hi Paul,

Well you have listened to what your consultants have said and a good idea that it may help you if they can be give odds on how RT would improve your outcome. But remember, there are no guarantees on success and side effects and only you can decide whether the risk of having or not having RT is right for you.

Barry
User
Posted 09 Aug 2017 at 20:18
Hi Paul, if you read my profile you will see that I had salvage radiotherapy March 28th to April 26th, 55 Grays over 20 sessions.

The oncologists will do a risk analysis on side effects whilst planning your radiotherapy. Your urologist is absolutely correct to say this is a chance to cure or control your cancer long term. I was told my radiotherapy had a 40% chance of success in curing me.

I was prepared to accept further side effects for that chance but you will have to decide whether that is the case for you. I coped better with the radiotherapy than I thought I would (I was able to fill my bladder well)but found I was very fatigued during treatment. Three and a bit months later I find I am going to the loo more at night again and occasionally have mild bowel urgency. I am not sleeping great but I see the oncologist on Monday 14th August and will get advice/medication to reduce these side effects. Do I regret doing this radiotherapy? No I don't. My PSA is back to undetectable, I realise it is early days. More worryingly my neutrophil count is low making me more at risk of infection but the count is coming up slowly from its low point. The alternative for me was to remain on HT until it stopped working, the oncologist was clear that he couldn't tell me how long I would have to live but having the radiotherapy would be helpful. You have to weigh up whether you want the chance of a cure with the side effects or just remain on HT knowing that won't cure it but could control it for a long time. I wish you all the best whichever way you decide, Ian.

Ido4

User
Posted 09 Aug 2017 at 21:01

I am going to sound like the Grim Reaper but your PSA went up so high post-op that it is hard to believe it is just a few stray cells that can be mopped up with some RT.

I think the surgeon is being over-optimistic but I wasn't at the appointment with you ... what did he say about the PSA being so high? Did he acknowledge that cure was unlikely or was he suggesting that it was still a realistic aim? More to the point, what chance did the onco give you a couple of weeks ago? He is the expert in this stuff, not the uro.

On the other hand, you presumably don't have to decide yet? Or you could say yes now and then dip out later? What do you have to lose? John's salvage RT seems to have failed but he doesn't regret having it because he had no problems and it has given him a 5 year respite.

Generally speaking, a low post-op PSA that climbs slowly is indicative of left overs in the prostate bed while a high post-op PSA and/or rapid climb are suggestive of mets. Did either specialist discuss patterns with you?

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

User
Posted 09 Aug 2017 at 21:40

I think you have to ask absolutely what your chances of cure are from RT, and weigh it up against QOL. My results post surgery were very poor , and so poor that the RT offered was never offered as a cure ---- less than 20%. I have refused it 3 times because I genuinely believe it will not help me , but will cause me more grief to my life. If I had been offered any less than 50% chance of cure I'd still have rejected it. I'm a bit different from most on here , and I am quite a bit younger than most on here also. I simply don't want treatments that will likely make my " life " unpleasant. I read most posts on this site and have been a member for over 2 yrs. I've decided that doing my own thing is ok ,because we are all so very different. I have recovered nigh on 100% since surgery and am enjoying life as much as I can. It's been really really tough for me and I've been told I've chosen a palliative path only now and that it's not a bad decision. I'm happy with that tbh. Get the real facts and odds. Only you can make the decision
Best of luck

User
Posted 10 Aug 2017 at 06:52
As Lyn has said an early rapidly rising PSA post surgery is suggestive of mets, which is where I am (my doubling time was 1.2 months last autumn). My oncologist has repeatedly told me he is convinced I have mets but scans aren't picking them up yet. I found that desperately hard to deal with. I think there is some evidence that in this scenario early salvage radiotherapy can help hold things back a little longer. Given all the above my oncologist still thought the radiotherapy had a 40%chance of a cure. I'll stand to be corrected if my take on this is wrong. He did initially only offer me palliative HT but after further discussions with colleagues and research agreed the RT could be beneficial. The STAMPEDE trial showed early RT and chemo improved survival times for people with mets. I really wanted a final go at a curative option too. Like others have said you have to weigh up what is best for you on the evidence available. It's not an easy or straightforward decision hence the variety of views here. Best wishes, Ian.

Ido4

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User
Posted 09 Aug 2017 at 20:18
Hi Paul, if you read my profile you will see that I had salvage radiotherapy March 28th to April 26th, 55 Grays over 20 sessions.

The oncologists will do a risk analysis on side effects whilst planning your radiotherapy. Your urologist is absolutely correct to say this is a chance to cure or control your cancer long term. I was told my radiotherapy had a 40% chance of success in curing me.

I was prepared to accept further side effects for that chance but you will have to decide whether that is the case for you. I coped better with the radiotherapy than I thought I would (I was able to fill my bladder well)but found I was very fatigued during treatment. Three and a bit months later I find I am going to the loo more at night again and occasionally have mild bowel urgency. I am not sleeping great but I see the oncologist on Monday 14th August and will get advice/medication to reduce these side effects. Do I regret doing this radiotherapy? No I don't. My PSA is back to undetectable, I realise it is early days. More worryingly my neutrophil count is low making me more at risk of infection but the count is coming up slowly from its low point. The alternative for me was to remain on HT until it stopped working, the oncologist was clear that he couldn't tell me how long I would have to live but having the radiotherapy would be helpful. You have to weigh up whether you want the chance of a cure with the side effects or just remain on HT knowing that won't cure it but could control it for a long time. I wish you all the best whichever way you decide, Ian.

Ido4

User
Posted 09 Aug 2017 at 21:01

I am going to sound like the Grim Reaper but your PSA went up so high post-op that it is hard to believe it is just a few stray cells that can be mopped up with some RT.

I think the surgeon is being over-optimistic but I wasn't at the appointment with you ... what did he say about the PSA being so high? Did he acknowledge that cure was unlikely or was he suggesting that it was still a realistic aim? More to the point, what chance did the onco give you a couple of weeks ago? He is the expert in this stuff, not the uro.

On the other hand, you presumably don't have to decide yet? Or you could say yes now and then dip out later? What do you have to lose? John's salvage RT seems to have failed but he doesn't regret having it because he had no problems and it has given him a 5 year respite.

Generally speaking, a low post-op PSA that climbs slowly is indicative of left overs in the prostate bed while a high post-op PSA and/or rapid climb are suggestive of mets. Did either specialist discuss patterns with you?

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

User
Posted 09 Aug 2017 at 21:40

I think you have to ask absolutely what your chances of cure are from RT, and weigh it up against QOL. My results post surgery were very poor , and so poor that the RT offered was never offered as a cure ---- less than 20%. I have refused it 3 times because I genuinely believe it will not help me , but will cause me more grief to my life. If I had been offered any less than 50% chance of cure I'd still have rejected it. I'm a bit different from most on here , and I am quite a bit younger than most on here also. I simply don't want treatments that will likely make my " life " unpleasant. I read most posts on this site and have been a member for over 2 yrs. I've decided that doing my own thing is ok ,because we are all so very different. I have recovered nigh on 100% since surgery and am enjoying life as much as I can. It's been really really tough for me and I've been told I've chosen a palliative path only now and that it's not a bad decision. I'm happy with that tbh. Get the real facts and odds. Only you can make the decision
Best of luck

User
Posted 09 Aug 2017 at 23:40

Hi Paul,

Well you have listened to what your consultants have said and a good idea that it may help you if they can be give odds on how RT would improve your outcome. But remember, there are no guarantees on success and side effects and only you can decide whether the risk of having or not having RT is right for you.

Barry
User
Posted 10 Aug 2017 at 06:52
As Lyn has said an early rapidly rising PSA post surgery is suggestive of mets, which is where I am (my doubling time was 1.2 months last autumn). My oncologist has repeatedly told me he is convinced I have mets but scans aren't picking them up yet. I found that desperately hard to deal with. I think there is some evidence that in this scenario early salvage radiotherapy can help hold things back a little longer. Given all the above my oncologist still thought the radiotherapy had a 40%chance of a cure. I'll stand to be corrected if my take on this is wrong. He did initially only offer me palliative HT but after further discussions with colleagues and research agreed the RT could be beneficial. The STAMPEDE trial showed early RT and chemo improved survival times for people with mets. I really wanted a final go at a curative option too. Like others have said you have to weigh up what is best for you on the evidence available. It's not an easy or straightforward decision hence the variety of views here. Best wishes, Ian.

Ido4

User
Posted 10 Aug 2017 at 07:18
Originally Posted by: Online Community Member

I am going to sound like the Grim Reaper but your PSA went up so high post-op that it is hard to believe it is just a few stray cells that can be mopped up with some RT.

I think the surgeon is being over-optimistic but I wasn't at the appointment with you ... what did he say about the PSA being so high? Did he acknowledge that cure was unlikely or was he suggesting that it was still a realistic aim? More to the point, what chance did the onco give you a couple of weeks ago? He is the expert in this stuff, not the uro.

On the other hand, you presumably don't have to decide yet? Or you could say yes now and then dip out later? What do you have to lose? John's salvage RT seems to have failed but he doesn't regret having it because he had no problems and it has given him a 5 year respite.

Generally speaking, a low post-op PSA that climbs slowly is indicative of left overs in the prostate bed while a high post-op PSA and/or rapid climb are suggestive of mets. Did either specialist discuss patterns with you?

Hi Lyn....

My PSA went down up & down between 2.5 and 2.9 immediately after surgery and for the next 7 months....the last test showed an increase to 3.8......All scans and X rays didn't show any spread except for the most recent MRI scan on my pelvis which showed slightly enlarged lymph nodes....

Both the Onc and Uro are convinced that there is a good chance of remission with RT......

I don't have to make the decision now...I have got some breathing space.....I suppose it's all a bit of a gamble really.....no one can tell me for certain just what stage/state I am at.....if the risk of permanent damage from RT is low then maybe it's worth it.....if it fails I'll just be back to where I would have been had I decided against it in the first place?.......hope the HT does the job and keeps me up & running......

Paul

User
Posted 10 Aug 2017 at 07:35

If they are both saying good chance of remission then maybe worth it , and the scan shows node activity in the area. I came off HT and allowed the psa to rise. I've had 2 PET scans and neither have even shown the cancer they KNOW they left on my bladder , nor any further node activity ( 5 of 18 removed were cancerous ). So my case is different to yours. I didn't want to sound negative. My Onco is even allowing me zero treatment at all until we can find what it is that needs treating. That's our mutual decision because I'm enjoying life as a " full" man again and not prepared to risk bowel and bladder complications , return of erectile dysfunction , and the real chance of the dreaded lymphdoema , as that's what they were going to shoot at.
Only you can make the choice based on their honest information and your trust in them

 
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