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User
Posted 16 Aug 2016 at 18:53
I got my second post-op PSA today and was really disappointed to be told it is 0.3. It was undetectable in May, two months after the operation.

This means that the bit left behind according to the pathology (disease at margin of what was removed) is growing. SCN says it won't be distant metastasis as they would not be associated with the PSA going to undetectable. I guess I will need a PET scan to check for that, never the less.

The test will be repeated and I will see the oncologist about whether to have radiotherapy, or whatever else the options are.

I am joining those who are 'living with' cancer as opposed to cured from it or who once had it. This is a shift: I had dared to hope I would have some years of not having PCa in my life. Instead it is another cycle of accepting the situation and getting on with what I have to go through. I plan to find out about the no treatment option as much as about the treatments and their effects, because I remain symptom free, apart from the ED from my surgery, and I am seriously not keen to get life-changing symptoms unless the gain is worth it. Sounds obvious, but I reckon we tend to act before thinking. We are prone to doing something rather than nothing. I want to try to chose carefully what balance of quantity vs quality of life to go for. All very unpredictable and a personal judgement/choice.

I had been very optimistic with family and friends and I don't look forward to updating them. I learnt from going through this with the original diagnosis that I need to get my head around it and then tell people when it seems right, instead of panicking and announcing it!

Henry

User
Posted 16 Aug 2016 at 18:53
I got my second post-op PSA today and was really disappointed to be told it is 0.3. It was undetectable in May, two months after the operation.

This means that the bit left behind according to the pathology (disease at margin of what was removed) is growing. SCN says it won't be distant metastasis as they would not be associated with the PSA going to undetectable. I guess I will need a PET scan to check for that, never the less.

The test will be repeated and I will see the oncologist about whether to have radiotherapy, or whatever else the options are.

I am joining those who are 'living with' cancer as opposed to cured from it or who once had it. This is a shift: I had dared to hope I would have some years of not having PCa in my life. Instead it is another cycle of accepting the situation and getting on with what I have to go through. I plan to find out about the no treatment option as much as about the treatments and their effects, because I remain symptom free, apart from the ED from my surgery, and I am seriously not keen to get life-changing symptoms unless the gain is worth it. Sounds obvious, but I reckon we tend to act before thinking. We are prone to doing something rather than nothing. I want to try to chose carefully what balance of quantity vs quality of life to go for. All very unpredictable and a personal judgement/choice.

I had been very optimistic with family and friends and I don't look forward to updating them. I learnt from going through this with the original diagnosis that I need to get my head around it and then tell people when it seems right, instead of panicking and announcing it!

Henry

User
Posted 16 Aug 2016 at 19:38

Sorry to hear this Henry but John would share your view - he has had the salvage RT/HT and is already determined that if that has indeed failed, he will not have HT until he absolutely is forced to. My dad has also decided not to have any salvage treatment so his PSA is just being monitored for the time being. The problem for both is knowing when the tipping point has been reached (if there is a tipping point where either of them would change their view) - makes me jumpy of course because everyone thought f-i-l was doing well until he died (PSA was 1.2)

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

User
Posted 16 Aug 2016 at 21:02

I too am sorry to read this Henry,

In this sad lottery it could be any one of us who are going through this.

Only you can choose between quality/quantity of life. Only you will have to deal with the consequences.

As always, thorough research is the key, before making a well informed choice.

FWIW, and Lyn will correct me if I am wrong, until we get to 10 years after involvement, we are all living with PCa.

I hope your meeting goes as well as it can.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

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User
Posted 16 Aug 2016 at 19:38

Sorry to hear this Henry but John would share your view - he has had the salvage RT/HT and is already determined that if that has indeed failed, he will not have HT until he absolutely is forced to. My dad has also decided not to have any salvage treatment so his PSA is just being monitored for the time being. The problem for both is knowing when the tipping point has been reached (if there is a tipping point where either of them would change their view) - makes me jumpy of course because everyone thought f-i-l was doing well until he died (PSA was 1.2)

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

User
Posted 16 Aug 2016 at 20:53
Sorry to hear your news Henry. I suppose that in a way I was luckier than you in that my first PSA test post op was never undetectable and so we were straight into making decisions about what,if anything, to do next. I feel sure that your situation must be more upsetting. My op was in August 2015 and we decided to continue with PSA tests until we we were sure that something needed to be done. We decided to go ahead with just RT and no HT as the onco was convinced that the cells were in the prostate bed meaning that EBRT could finish them off. I had 33 days of EBRT finishing on 23rd June. I have to say that despite my reservations of returning to possible incontinence problems as a result, this did not happen. I was able to drive myself the 94 mile round trip each day without incident and only suffered a couple of odd days of loose bowels in the evening. Once the treatment had finished I was a bit tired for about 2 weeks but I would not describe it as fatigue. I will not be seeing the onco for results until 19th September and so have no idea how successful the EBRT has been. If it has not worked then we consider our options but I want to put off HT as long as possible.

All the best with you decision

Kevan

User
Posted 16 Aug 2016 at 21:02

I too am sorry to read this Henry,

In this sad lottery it could be any one of us who are going through this.

Only you can choose between quality/quantity of life. Only you will have to deal with the consequences.

As always, thorough research is the key, before making a well informed choice.

FWIW, and Lyn will correct me if I am wrong, until we get to 10 years after involvement, we are all living with PCa.

I hope your meeting goes as well as it can.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 16 Aug 2016 at 21:04

Thanks, Kevan. That is very helpful and very positive experience of EBRT. I guess one aspect of RT is that the frying effect on the blood supply to all the organs can result in delayed side effects.
I hope your body recovers well and wish you the best for your follow-up results.

User
Posted 16 Aug 2016 at 21:14

Quite correct CB - medically cancer patients are not 'cured' - they can only hope for remission. Dad got his official 'you are in remission - continue with annual PSA tests via your GP' from the hospital exactly 10 years after his first post-op PSA. Turned out not to be quite right as the PSA started rising again at the 13 year point :-#

Henry, I was a bit too gloomy earlier and Kevan is quite right - John did go for the salvage treatment (reluctantly after about a year of navel-inpecting) and breezed through the RT with no side effects so don't discount the option out of hand. What he couldn't hack was the HT. Once they have calculated your likely projections, you may feel differently about delaying or declining treatment but at the minute they are estimating that dad's left-behind cancer cells won't cause him any side effects or discomfort for about 20 years and he is happy to gamble on that.

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

User
Posted 16 Aug 2016 at 21:49
H

Sorry to hear of news ,I am possibly heading in the same direction, after two years of slow rises but still below 0.1 I now find I am at 0.13 and waiting again for another test in 5 weeks time.

I think RT machines and techniques have improved and the previous posts are encouraging.

Thanks Chris

User
Posted 16 Aug 2016 at 23:05

Sorry to hear of your news.

My situation was similar after my RP, over four years ago.

My PCa seems to be resistant to all that has been thrown at it (although I've not had HT yet and that's likely to be some way off).

My PSA is at present 0.4 (highest was 0.7), I continue to feel absolutely fine.

My onco said a while back that if my PSA continues to rise, "..there are hundreds of things that we can throw at it" ( I think the 'hundreds' might have been an exaggeration but I guess that he is saying is that there are still plenty of weapons in the armoury)

My only suggestion to you would be that further to any salvage RT, push for the highest definition scan you can get even though this means going to another area - I had a Choline PET/MR scan. It's possible that with your low PSA, nothing may show up but still, I believe, worth going ahead.

Best wishes,

Dave

 

Not "Why Me?" but "Why Not Me"?
User
Posted 17 Aug 2016 at 00:14

It's hard when you learn your radical treatment has failed, the more so because you have lost your best chance of cure. I am in a similar if worse situation. My salvage HIFU treatment for failed RT, initially resulted in a PSA reduction. However, my PSA is rising again and I am holding back on HT until I receive confirmation from UCLH that they believe from recent scans that the increased PSA is not from cancer still in the Prostate. Should it be believed there is still some cancer in the Prostate I would be prepared to have HIFU again or further RT whichever is considered more appropriate with HT only if this fails. I do believe the longer salvage treatment is left after failed primary treatment, the greater the chance of the cancer cells mutating and also spreading. HIFU will not of course deal with cancer cells that have spread outside the Prostate and there are limits to what RT can reach in respect of how far and how many sites cancer cells have spread.

Barry
User
Posted 17 Aug 2016 at 08:52

Hi Henry
So sorry to hear this. Same boat as me I'm afraid. Read my last profile updates or my post. We chose NOT to have RT after great advice and paperwork Onco admitted they were only offering due me being 48. Just make sure you've done your homework and good luck

User
Posted 17 Aug 2016 at 09:57

I think there is enough evidence now to suggest that the younger a man is at diagnosis, the more likely he is to have an aggressive and persistent cancer, and to need more than one radical treatment. Even just in this small pool, we only have to look at the timelines for Spurspark, Candyman, Bazza, Alathays, Nimeniton and Old Al. I think I read that a few of the specialist hospitals in this field have been running a trial where younger men with T1/T2 are offered RP with adjuvant RT/HT from the start. Our hospital is doing this - well, they were last time we saw Mr P although things could have changed recently.

Edited by member 17 Aug 2016 at 10:11  | Reason: Not specified

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

User
Posted 17 Aug 2016 at 11:50
It's a tough call indeed,.

My husband opted for the RT soon after having had the RP and coped really well with that.

Five years after six monthly PSA checks via his G.P and he found that his PSA was rising .

Only then did he opt for HT and ten years of diagnosis he again copes well. It is an ongoing struggle with various side effects and he never complains he is quite stoic and only six months ago was transferred to oncology from urology, because of a rise in PSA . He has stabilised his blood test, not sure how or why but we extremely grateful for the ten years since diagnosis.

Life goes on, a different life from our choosing but we grab life by the horns and keep going.

 
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