I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Decision to be made.....

Email this conversation Print this conversation
User
Posted 08 Jul 2017 at 18:45
I had an RP ON 2/11/16....scans before the surgery showed no problems in the bones or,anywhere else.....my Prostate was very enlarged due to BPH.....about the size of a lemon...so RP was the only option offered.

After removal the Histology was good....neg margins, lymph nodes clear, seminal vessels clear....but my first PSA TEST 8 weeks later only went down to 2.8....it should have been zero...

More scans and tests over the months....PSA has stayed at 2.8 .....just had another full Bone Scan and abdomen/prostate bed MRI and another PSA test.....

Both my Urlogist & Oncologist are baffled....

I have found instances where the removal of the prostate was incomplete and healthy tissue was left attached to bladder......producing PSA....

I have been offered 3 options......33 sessions of RT ....I am reluctant to

go down this road on nothing more than a guess....potential side effects and permant damage....

Hormone therapy....

Do nothing....

If my PSA is still around 2.8 and the scans are showing clear I am inclined to do nothing and have regular PSA tests to see if anything does kick off....

Anyone else had this type of experience please?

Cheers, Paul....

User
Posted 08 Jul 2017 at 23:04

Hi Paul,
Can't really help but waiting for a change in psa before further treatment seems logical.
Regards
Peter

User
Posted 08 Jul 2017 at 23:17
Paul

I haven't a clue how to guide you. Hopefully, others will. Sending you my best wishes and hope you get some answers soon.

Ulsterman

User
Posted 09 Jul 2017 at 01:51

Hi Paul,

I can understand your consultant's being baffled as apart from looking inside during the 'op' the removed prostate would have been carefully dissected in the lab. As the PSA has not fallen as it should after a further PSA test, it does seem possible that a few cancerous cells escaped the knife as you mention. I have read that in about 70% of cases any residual cancer cells are within the bed from whence the Prostate has been removed. Should this be applicable to you, there would be a better than even chance of RT dealing with these cancer cells. Perhaps a further discussion with your consultants would help ascertain the chances of RT being successful in your case. Some doctors also say that cancer cells can in some cases spread through seeding along the needle track during biopsy or where the scalpel cuts and these cells can be drawn into the lymphatic system. But all this is speculative and does not help even if it could explain possible reasons.

Did you have a high quality MRI scan with a 3Tesla machine, although even this does not always reveal tiny micro cancer cells? Which of the options was suggested as best way forward for you?

Barry
User
Posted 09 Jul 2017 at 07:15

From assorted experiences I think Barry’s advice is very wise., and doing nothing until you’ve talked it through with the oncologist is the sensible way forward.

User
Posted 10 Jul 2017 at 17:14
Hi Paul

I don't think that there is an easy answer. I was in a similar situation but I opted to have the salvage RT without HT as we thought cells were possibly in the prostate bed. Before RT PSA was 0.5 and after RT was 0.6. This doubled to 1.2 within 3 months so we started HT and 3 months later PSA is undetectable.

On the face of it the cells were possibly elsewhere and the HT has found them or possibly the RT is still working 12 months after the final session.

I appreciate this is just what happened with me but thought that it might be helpful.

All the best

Kevan

User
Posted 10 Jul 2017 at 22:28
Not a complete answer Paul but at least HT is reversible whereas RT damage isn't. Your plan makes sense to me, good luck with it.

Devonmaid

User
Posted 10 Jul 2017 at 23:05

Lest you are not aware, HT is not in itself a curative treatment. It holds back cancer for a time ,(could be months or years) or helps make RT more effective. Somebody I know had a Prostatectomy but rising PSA thereafter. He had RT to the
prostate bed preceded by HT. It seems he was lucky as some ten years on his PSA is undetectable. It becomes a personal decision whether to risk the possibility of further/late side effects of HT/RT when there is no certainty of it making a difference long term. There are cases now where men who have Prostatectomy have HT/RT immediately after as part of their treatment rather than wait to see how their PSA changes. I feel this is partly because treating the Prostate bed early minimizes the risk of spread elsewhere from the primary site.

You may get some thoughts/guidance from your consultants but I would not be surprised if the decision on if /when to start HT/RT is left to you.

Barry
User
Posted 11 Jul 2017 at 06:57

Paul, in a way you’ve answered your own question; wait for the scan results. 

Don’t cross bridges before you get to them!

I’ll readily confess, as my wife will tell you, that I often have to be reminded take my own advice, but seriously, we have the technology to investigate much, much more thoroughly than Once Upon a Time, and it’s quite possiblle, indeed probable, that a scan will show exactly where the problems are.

It’s now the 11th; you say you’ll be told the scan results on 26th; so get involved in something else for a fortnight. If ypou’re retired, there’s a lot of sport now, if you are that way inclined. Or do some garden planning. Brush up a language if that applies. Go to the gym. Whatever. 

If you’re at still at work get involved in something new if you can. Identify a new skill you need.

Anything to keep your mind away from your prostate for a couple of weeks.

And all the best.

OKC

User
Posted 11 Jul 2017 at 07:24

Hi Paul
Read my profile. I'm very similar to you but my psa is actually rising. However all the scans show clear. My Onco is not going to RT me at my request , and is even keeping me off HT until we see something on a scan. I want QOL not endless intervention.

Show Most Thanked Posts
User
Posted 08 Jul 2017 at 23:04

Hi Paul,
Can't really help but waiting for a change in psa before further treatment seems logical.
Regards
Peter

User
Posted 08 Jul 2017 at 23:17
Paul

I haven't a clue how to guide you. Hopefully, others will. Sending you my best wishes and hope you get some answers soon.

Ulsterman

User
Posted 09 Jul 2017 at 01:51

Hi Paul,

I can understand your consultant's being baffled as apart from looking inside during the 'op' the removed prostate would have been carefully dissected in the lab. As the PSA has not fallen as it should after a further PSA test, it does seem possible that a few cancerous cells escaped the knife as you mention. I have read that in about 70% of cases any residual cancer cells are within the bed from whence the Prostate has been removed. Should this be applicable to you, there would be a better than even chance of RT dealing with these cancer cells. Perhaps a further discussion with your consultants would help ascertain the chances of RT being successful in your case. Some doctors also say that cancer cells can in some cases spread through seeding along the needle track during biopsy or where the scalpel cuts and these cells can be drawn into the lymphatic system. But all this is speculative and does not help even if it could explain possible reasons.

Did you have a high quality MRI scan with a 3Tesla machine, although even this does not always reveal tiny micro cancer cells? Which of the options was suggested as best way forward for you?

Barry
User
Posted 09 Jul 2017 at 06:36
Hi Barry...it was a high grade/sensitivity MRI SCAN.....I see the Onc on 26/7.....I should get the PSA result tomorrow....if it's gone up I've decided to start the tablets for HT and discuss the position at the meeting....if my PSA is still 2.8ish I am inclined to do nothing as whatever is causing it doesn't seem to be getting worse....it will have stayed the same since last December.......Cheers, Paul....
User
Posted 09 Jul 2017 at 07:15

From assorted experiences I think Barry’s advice is very wise., and doing nothing until you’ve talked it through with the oncologist is the sensible way forward.

User
Posted 10 Jul 2017 at 14:22

..just got the PSA result and this time it has gone up to 3.7....so there is something going on....start HT on Weds and get the scan results on 26/7....
If the scan results are still not showing any definite....what to do?.....stay on HT and see how it goes or risk RT on the P Bed with all the possible long term effects
If I knew for certain that the PC was in the P Bed then that would make a difference to the decision, but if the Onc can only say he doesn't know where it is then is it worth the risk and would staying on HT be the best option?...
Cheers, Paul...

User
Posted 10 Jul 2017 at 17:14
Hi Paul

I don't think that there is an easy answer. I was in a similar situation but I opted to have the salvage RT without HT as we thought cells were possibly in the prostate bed. Before RT PSA was 0.5 and after RT was 0.6. This doubled to 1.2 within 3 months so we started HT and 3 months later PSA is undetectable.

On the face of it the cells were possibly elsewhere and the HT has found them or possibly the RT is still working 12 months after the final session.

I appreciate this is just what happened with me but thought that it might be helpful.

All the best

Kevan

User
Posted 10 Jul 2017 at 17:29

Thanks Kevan.....RT on the P Bed is a hope of a 'cure'....but if this monster has settled down elsewhere then RT would be a waste of time I feel....and HT a better route for containment....my problem is that the experts can't tell me what or where it is.....they are baffled.....but as the PSA is rising I feel I must do something ......I'll start the HT on Weds and see what the Onc says at the end of the month....maybe the scans will show something this time......Cheers, Paul....

User
Posted 10 Jul 2017 at 22:28
Not a complete answer Paul but at least HT is reversible whereas RT damage isn't. Your plan makes sense to me, good luck with it.

Devonmaid

User
Posted 10 Jul 2017 at 23:05

Lest you are not aware, HT is not in itself a curative treatment. It holds back cancer for a time ,(could be months or years) or helps make RT more effective. Somebody I know had a Prostatectomy but rising PSA thereafter. He had RT to the
prostate bed preceded by HT. It seems he was lucky as some ten years on his PSA is undetectable. It becomes a personal decision whether to risk the possibility of further/late side effects of HT/RT when there is no certainty of it making a difference long term. There are cases now where men who have Prostatectomy have HT/RT immediately after as part of their treatment rather than wait to see how their PSA changes. I feel this is partly because treating the Prostate bed early minimizes the risk of spread elsewhere from the primary site.

You may get some thoughts/guidance from your consultants but I would not be surprised if the decision on if /when to start HT/RT is left to you.

Barry
User
Posted 11 Jul 2017 at 06:33

Hi Barry....I realise that HT isn't a cure but just a method of containment.....I'll wait and see what my latest scans show, if anything, so far as RT is concerned......I'm starting the HT tomorrow because it's clear that something untoward is happening and if the cancer has moved on to new areas then there is no cure really.....if the scans do show it only in the prostae bed then with RT and HT maybe I have a chance of stopping it....but if the scans are like all the others and don't show anything then it could be anywhere but at this stage not visible to imaging procedures.....if this is the case my big decision is to have 33 sessions of RT on the P Bed, with all the risks to continence and bowel damage, on nothing more than a 'poke & hope' basis....
Difficult one for me......Cheers, Paul....

User
Posted 11 Jul 2017 at 06:57

Paul, in a way you’ve answered your own question; wait for the scan results. 

Don’t cross bridges before you get to them!

I’ll readily confess, as my wife will tell you, that I often have to be reminded take my own advice, but seriously, we have the technology to investigate much, much more thoroughly than Once Upon a Time, and it’s quite possiblle, indeed probable, that a scan will show exactly where the problems are.

It’s now the 11th; you say you’ll be told the scan results on 26th; so get involved in something else for a fortnight. If ypou’re retired, there’s a lot of sport now, if you are that way inclined. Or do some garden planning. Brush up a language if that applies. Go to the gym. Whatever. 

If you’re at still at work get involved in something new if you can. Identify a new skill you need.

Anything to keep your mind away from your prostate for a couple of weeks.

And all the best.

OKC

User
Posted 11 Jul 2017 at 07:24

Hi Paul
Read my profile. I'm very similar to you but my psa is actually rising. However all the scans show clear. My Onco is not going to RT me at my request , and is even keeping me off HT until we see something on a scan. I want QOL not endless intervention.

User
Posted 11 Jul 2017 at 07:32

Hi Chris.....we've liased before on this long journey.....my PSA has now started to rise.....2.8 for 8 months since surgery but up to 3.7 from the last test test in May.....something going on.....will know more at the end of this month hopefully.....Cheers, Paul..

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK