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Post RARP PSA level

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User
Posted 29 Mar 2024 at 01:11

Hello everyone,


im due to go back to Addenbrookes next week to see my surgeon to discuss my RARP op I had on 9/2/24 and I was told I had to to have a recent PSA blood test prior to that appointment.  I had the blood test 28/3/24 and the result came up on MyChart later the same day.  I was very upset and disappointed to se that the PSA reading was 4.06 when I was expecting it to be pretty much nonexistent.   I’m now worried that the op didn’t work… Anyone else had a similar experience? 

User
Posted 29 Mar 2024 at 06:55
My post op PSA nearly 9 years ago was 1.5 and soon after up to 2.4. I took lots of advice and decided the cancer was too much to be just left in the bed. And I had lymph nodes positive for cancer , so I thought the horse had already bolted. I was like a rabbit in headlights and already suffering the consequences of surgery. I declined SRT and HT three times as wanted a QOL. Many scans showed nothing so I was deemed oligomtastatic. My psa climbed to over 1000 before mets were spotted in distant nodes and bones. I’ve been on injectable HT for 3 years now and refused early Enza or Chemo. My mantra was enjoy my life and not spend it all in hospital or having treatment or suffering side effects. I’m 57 this year and will be 9 years on. Generally ok but indications of treatment failing. Good luck
User
Posted 29 Mar 2024 at 12:24
Sapper, double-check the result. On PATCHS, the PSA result screen shows 4.06 as the threshold for 'normal' so could it be the same on MyChart; e.g. the 4.06 is a statement and not your actual reading?

If that is your reading, worth trying to get another test before your Addenbrookes appointment just in case it is an error but your urologist should refer you straight to oncology when you see him / her next week.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Jun 2024 at 00:55

Hi Adrian.   I went for the pre RT planning scan last week as arranged but they couldn’t do the scan as I had problems getting the correct amount of urine in my bladder for the scan to be accurate so after 2 unsuccessful attempts I was sent home to return today.  This time it went ok and the scan was completed.  I will be sent an appointment in the next week or so to start RT in  3-4 weeks.  I also started the hormone jabs today so everything is moving ahead.  How are you getting on? 


UPDATE


Planning scan successfully completed 20/6/24.   RT due to start Wednesday 10/7/24.  20 sessions. I’ve had 1 x hormone jab, next one due September.


Further update.


 20 Sessions of RT completed 7/8/24 and I have an appointment to go back and see the oncology consultant in about a months time.   The 20 sessions went ok and I didn’t have any side effects till about half way through.  I felt a bit rough a couple of times and started to have tummy problems including “wet wind” which is unpleasant to say the least!  Everything I’ve been told and what I’ve read told me that the side effects get worse in the first 2 weeks after the procedures finish before they start to get better so I’m looking forward to that!. I had a PSA test when I was nearly at the end of the sessions and it came back as 1.56. Less than half of what it was before I started!!  

Edited by member 15 Aug 2024 at 01:24  | Reason: Not specified

User
Posted 29 Mar 2024 at 01:11

Hello everyone,


im due to go back to Addenbrookes next week to see my surgeon to discuss my RARP op I had on 9/2/24 and I was told I had to to have a recent PSA blood test prior to that appointment.  I had the blood test 28/3/24 and the result came up on MyChart later the same day.  I was very upset and disappointed to se that the PSA reading was 4.06 when I was expecting it to be pretty much nonexistent.   I’m now worried that the op didn’t work… Anyone else had a similar experience? 

User
Posted 29 Mar 2024 at 07:27

Sapper, what was your pre op PSA reading. I expect another test will be on the cards, hopefully there is an error. A bit unfortunate we are going into a double bank holiday weekend. Your histology report may give your surgeon an indication of any reason for the post op result. 


Thanks Chris 

User
Posted 29 Mar 2024 at 10:23
Not quite in the same situation but my PSA has risen post RARP (less than 12 months) and so just about to embark on 6 months of hormone therapy and 33 sessions of radiotherapy. My oncologist said that about a third of all RARP patients need further treatment so it wasn't something unexpected.

I'd get a second test to confirm however.
User
Posted 29 Mar 2024 at 23:54

Hi Sapper,


Sorry to hear this has happened. Hopefully another test might be better.


I guess all you can do is battle on. Man this cancer is such a life wrecker.


But I thought you had to wait a good 3 months for the PSA levels to be accurate? Maybe after another month or 2 and see what happens. I know I wasn't tested for 3 months. Perhaps it's different here in NZ than the UK.


Stay positive, as hard as that sounds.


Graham

User
Posted 05 May 2024 at 13:12

I'm fine thanks, I'm more concerned about you. If the scan is all clear, all I can think of is they've left some behind in the prostate bed. 


As I say I've only been on this site a few months but I've never heard of PSA 3 or 4 post prostatectomy.


Perhaps someone else here has heard of or encountered similar?

User
Posted 05 May 2024 at 18:48

Hello Sapper71,


This happened to my husband last year. PSA 9, had the op, PSA still 9.


For most people on this forum they have  no experience of this as it is quite rare I believe.


Please read my bio and I’m happy to chat and answer any questions.


Fingers crossed for you.


 

Take care,


Tulippy 🌹 x

User
Posted 09 May 2024 at 22:08

Hi Sapper71,


That result must have been a shocker. I just had my 3 month post RP PSA test and it came out at 0.31 . Which I read is BCR since it’s greater than 0.2 post op. My pathology was “very aggressive” but I was hoping for a few clean tests at least. Next week , two weeks after the above test, I am having a confirmation second test and seeing the radiation oncologist the next day. Your reading does sound high for post op, I have read infections can influence PSA readings?


All the best

Edited by member 09 May 2024 at 22:09  | Reason: Spelling

User
Posted 10 May 2024 at 07:53

Originally Posted by: Online Community Member


Hi Sapper71,


That result must have been a shocker. I just had my 3 month post RP PSA test and it came out at 0.31 . Which I read is BCR since it’s greater than 0.2 post op.


Hi Clinton,


I initially put a link to this thread on the conversation you started, but deleted it because the post op PSA levels of yours and Sapper's are so different.


There have been threads on post op PSA results very similar to yours.  I've searched for them but unfortunately couldn't find them.


On one of them, I refered to the detectable PSA level post op as being BCR but was informed it should be termed as prostatectomy failure. Apparently for it to be BCR it had to be undetectable post op then later increase to over 0.2.


I believe your result obviously indicates that a small amount of cancerous cells had not been removed and were probably left in the prostate bed. Leading to the possibility of further treatment.


There was lots of discussion on whether, in a case like yours, a scan would reveal the location of these cells or that an educated guess to zap the prostate bed was the best way forward.


Best of luck mate.

User
Posted 31 May 2024 at 11:55

Hi everyone.  I’ve has the PET CT scan and I’ve had the phone appointment with the surgeon to discuss the results.  The scan was inconclusive but showed no “hot spots” and no evidence to suggest it’s spread but it didn’t show the source of the PSA levels.   I’ve now had 3 blood tests since my op in February and the readings have been 4.06, 3.73 and the most recent from just over a week ago was 3.68. Heading in the right direction but VERY slowly especially considering that it was at 4.9 at its highest pre op.  The surgeon is puzzled and has referred me to a urologist oncologist next week to see if he can shed some light on it.   

User
Posted 07 Jun 2024 at 00:55

Hi Adrian.  I went to see the urology oncologist consultant on Wednesday 5/6 to discuss the refusal of my PSA levels to drop and the PET CT scan results.   He told he that I have some prostate tissue which couldn’t be removed in the operation which is at stage 3 which will require radiotherapy to treat.  I have a planning CT scan next week and the treatment will be every day Monday - Friday for 4 weeks starting in 2-3 weeks time as well as hormone injections every 3 months for 2 years.  He was very reassuring and told me that it’s totally curable and I will be fine.

User
Posted 07 Jun 2024 at 07:23

Thanks for the update Clinton. I'm glad that you feel much more secure now that follow up treatment has been decided. Good luck mate.

User
Posted 10 Jun 2024 at 00:30

Hi Adrian.  Yes, the PSMA scan came back to show that the cancerous cells hadn’t spread but it DID indicate cells in the margin that wasn’t able to be removed. There had been a problem in the op due to adhesion of the gland onto surrounding tissue. 
The urology oncologist is very confident that the radiotherapy will be totally successful so happy days! 
I’ll keep you posted.  πŸ‘

User
Posted 21 Jun 2024 at 07:47

Hello David.


I really feel for you mate. It's only been 4 months since your prostatectomy. It's no wonder that you were struggling to have the right amount of urine. 4 months post op I had very little bladder control. 


I'm pleased that you managed to get the scan completed at the second attempt and that your RT treatment is scheduled. I hope the rest of your treatment goes well and that you make a full and speedy recovery.


I'm not so bad thanks. Much better than I was this time last year.

User
Posted 21 Jun 2024 at 08:06

Sapper, It might be worth doing a few practice runs at home to get your bladder capacity right, although it may change as treatment progresses. My appointment times were a bit all over the place. I kept hydrated though the whole process. I would drink water on the way to hospital check the appointment was on time, empty the bladder and then drink the 500/600 mls of water. 


Hope all goes well for you.


Thanks Chris.

Show Most Thanked Posts
User
Posted 29 Mar 2024 at 06:32

Morning David.


Only yesterday, I was wondering how you were doing.


I've only been on this forum for a few months but can't recall anyone reporting a similar issue. Like you I'd have expected an extremely low or preferably undetectable PSA reading.


What was you PSA, cancer staging and Gleason pre op?


Hopefully your imminent consultation will shed some light on what's occurred.


 

User
Posted 29 Mar 2024 at 06:55
My post op PSA nearly 9 years ago was 1.5 and soon after up to 2.4. I took lots of advice and decided the cancer was too much to be just left in the bed. And I had lymph nodes positive for cancer , so I thought the horse had already bolted. I was like a rabbit in headlights and already suffering the consequences of surgery. I declined SRT and HT three times as wanted a QOL. Many scans showed nothing so I was deemed oligomtastatic. My psa climbed to over 1000 before mets were spotted in distant nodes and bones. I’ve been on injectable HT for 3 years now and refused early Enza or Chemo. My mantra was enjoy my life and not spend it all in hospital or having treatment or suffering side effects. I’m 57 this year and will be 9 years on. Generally ok but indications of treatment failing. Good luck
User
Posted 29 Mar 2024 at 07:27

Sapper, what was your pre op PSA reading. I expect another test will be on the cards, hopefully there is an error. A bit unfortunate we are going into a double bank holiday weekend. Your histology report may give your surgeon an indication of any reason for the post op result. 


Thanks Chris 

User
Posted 29 Mar 2024 at 10:23
Not quite in the same situation but my PSA has risen post RARP (less than 12 months) and so just about to embark on 6 months of hormone therapy and 33 sessions of radiotherapy. My oncologist said that about a third of all RARP patients need further treatment so it wasn't something unexpected.

I'd get a second test to confirm however.
User
Posted 29 Mar 2024 at 12:24
Sapper, double-check the result. On PATCHS, the PSA result screen shows 4.06 as the threshold for 'normal' so could it be the same on MyChart; e.g. the 4.06 is a statement and not your actual reading?

If that is your reading, worth trying to get another test before your Addenbrookes appointment just in case it is an error but your urologist should refer you straight to oncology when you see him / her next week.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Mar 2024 at 23:54

Hi Sapper,


Sorry to hear this has happened. Hopefully another test might be better.


I guess all you can do is battle on. Man this cancer is such a life wrecker.


But I thought you had to wait a good 3 months for the PSA levels to be accurate? Maybe after another month or 2 and see what happens. I know I wasn't tested for 3 months. Perhaps it's different here in NZ than the UK.


Stay positive, as hard as that sounds.


Graham

User
Posted 30 Mar 2024 at 00:12

Hi Adrian ,  my first PSA test was 4.7 , the GP then ordered another which was 4.9 … everything then kicked off as a result of that second test.   I don’t know what to make of it …. I guess the consultant will shed some light on it all next week.   

User
Posted 30 Mar 2024 at 00:25

Hi David 


On MyChart how exactly was the PSA result given? I get mine on systmonline my last result was recorded as <0.02 ug/L [<4.5]


The [<4.5] part initially caused me concern but I think that refers to the threshold for normal level. Which Lyn mentions in her post.


 

Edited by member 30 Mar 2024 at 00:43  | Reason: Typo

User
Posted 05 May 2024 at 01:38

Hello all.  Update on my unusual PSA level post-op.  After I saw my surgeon he ordered another blood test which came back as 3.73.  Down a little bit from 4.06 but still not at the undetectable level we were hoping for.   I had a PSMA PET CT scan on 29/4 which is a highly accurate scan which detects the location of a PSA source.   I have since  been sent an appointment to speak to the surgeon about the results of that scan. It’s on 16/5 and will be over the phone.   The fact that in just less than 2 weeks and over the phone I see as a positive sign … I think that if there was an urgent issue about the findings from the scan I would have been summoned in person ASAP. 

User
Posted 05 May 2024 at 07:40

Hello again mate.


Obviously with your PSA levels at nearly pre op levels,  there is something wrong somewhere.


Did you get a report of the histology of the removed prostate including your Gleason score and cancer staging, was there any indication of EPE, that the cancer had breached the capsule?


It seems cruel to keep you hanging on for your latest scan results, when things aren't measuring up. It must be worrying.


How are you getting on with the general side effects of your op now? 

User
Posted 05 May 2024 at 11:22

Hi Adrian,


The surgeon went through the histology with me in my post op consultation, I can’t remember the details but he didn’t seem overly concerned with the results.   His main concern was the 4.06 PSA level which he couldn’t explain so he ordered me the PET scan.  He said in all the operations he’d done he’d never come across this before.  (Typical, nothing is ever just straightforward!). 
I’ll have another read of the letter the surgeon wrote to my GP post op ( I have a copy on MyChart) and see if he mentions anything untoward .  
I would really want the results of the scan ASAP but as there’s a bit of a wait I see that as there’s no nasty news to pass on.   If there’s a problem I would expect to be seen in person in a shorter time scale.  
Regarding side effects, I’m still urinary incontinent which is getting me down a bit as I’m doing everything I was told, pelvic floor exercises, walking, no alcohol, reduced caffeine etc etc but little improvement.   Nothing to be done apart from waiting.   A friend of mine took 3 years to get right.  Apart from that, everything else is ok thanks.  How are you getting on?

Edited by member 05 May 2024 at 11:26  | Reason: Addition to text

User
Posted 05 May 2024 at 13:12

I'm fine thanks, I'm more concerned about you. If the scan is all clear, all I can think of is they've left some behind in the prostate bed. 


As I say I've only been on this site a few months but I've never heard of PSA 3 or 4 post prostatectomy.


Perhaps someone else here has heard of or encountered similar?

User
Posted 05 May 2024 at 18:48

Hello Sapper71,


This happened to my husband last year. PSA 9, had the op, PSA still 9.


For most people on this forum they have  no experience of this as it is quite rare I believe.


Please read my bio and I’m happy to chat and answer any questions.


Fingers crossed for you.


 

Take care,


Tulippy 🌹 x

User
Posted 09 May 2024 at 22:08

Hi Sapper71,


That result must have been a shocker. I just had my 3 month post RP PSA test and it came out at 0.31 . Which I read is BCR since it’s greater than 0.2 post op. My pathology was “very aggressive” but I was hoping for a few clean tests at least. Next week , two weeks after the above test, I am having a confirmation second test and seeing the radiation oncologist the next day. Your reading does sound high for post op, I have read infections can influence PSA readings?


All the best

Edited by member 09 May 2024 at 22:09  | Reason: Spelling

User
Posted 09 May 2024 at 22:57

Thank you. I’ve recently had  PSMA PET CT scan to see if the source of the PSA level can be identified.  I’m due to discuss the results on a phone appointment with the consultant surgeon next week so I’m hoping for some answers.  

User
Posted 10 May 2024 at 07:53

Originally Posted by: Online Community Member


Hi Sapper71,


That result must have been a shocker. I just had my 3 month post RP PSA test and it came out at 0.31 . Which I read is BCR since it’s greater than 0.2 post op.


Hi Clinton,


I initially put a link to this thread on the conversation you started, but deleted it because the post op PSA levels of yours and Sapper's are so different.


There have been threads on post op PSA results very similar to yours.  I've searched for them but unfortunately couldn't find them.


On one of them, I refered to the detectable PSA level post op as being BCR but was informed it should be termed as prostatectomy failure. Apparently for it to be BCR it had to be undetectable post op then later increase to over 0.2.


I believe your result obviously indicates that a small amount of cancerous cells had not been removed and were probably left in the prostate bed. Leading to the possibility of further treatment.


There was lots of discussion on whether, in a case like yours, a scan would reveal the location of these cells or that an educated guess to zap the prostate bed was the best way forward.


Best of luck mate.

User
Posted 10 May 2024 at 17:10

Thankyou Adrian56,


Trawling the net I haven’t encountered the distinction being drawn between “prostatectomy failure “ and BCR. It makes sense as you said some cancerous area left behind after surgery would still be transmitting PSA. Hence the short post surgery time to detection of a relatively high initial PSA rather than a smaller initial PSA that ramped up due to microscopic growth. Ironically if this is the case then it is somewhat comforting in that may be my aggressive cancer isn’t ramping up as fast as the initial 3 month reading made it look…. if that makes sense. My surgeon was surprised at my this PSA test since the pathology during surgery did not show lymph node and bladder neck spread and I had a clear surgical margin. When asked to guess he said it might be a spread through the seminal vesicle since I had seminal vesicle invasion.
My feverish mind has an additional theory…. maybe outlandish. The original PSMA scan showed PC confined to the prostate but it is a “Skull to Thigh” limited scan, what if with my Gleason 9 “very aggressive” diagnosis had already started working on my legs below the thigh but was not also picked up by a prior bone scan due to lack of scan sensitivity? I guess all of this is speculation and may not change the radiation plan. One question I will ask the radiation oncologist in our meeting this week is whether it is advisable to wait till I have a .5 PSA in order to get PSMA directed radiation.


Thanks for listening!

User
Posted 10 May 2024 at 17:50

Hi Clinton.


We've somewhat hijacked Sapper's thread, but I'm sure he'll not mind. πŸ™‚


My histology post op was Gleason 9 (4+5)


T3a, the capsule had just been breached EPE. My PSA pre op was only 6.6.


The surgeon removed some fatty tissue, seminal vesicles and 9 lymph nodes which were all clear and I had negative margins.


The op was 16 months ago and since then the PSA has been undetectable <.02


However I've been told that I still have about a 70% chance of recurrence.


What was your pre op PSA and cancer staging and were you Gleason 9 (4+5) or (5+4)?


 

Edited by member 10 May 2024 at 18:49  | Reason: Spelling

User
Posted 10 May 2024 at 17:52

Clinton, I asked about including a troublesome knee in my scans,but was told that was down to the radiographer. The radiographer did include the knees. My onco said he had only seen spread to the knee on three occasions, I did say I could be number 4, I wasn't. My second and third recurrences were in pelvic lymph nodes.


Thanks Chris 

User
Posted 10 May 2024 at 18:31

Hi Adrian56,


Great to hear you are still clear. My pre op PSA 13.8 on regular annual health check, totally asymptomatic( missed previous 2 annual health checks avoiding hospitals due to Covid….oh well…)


Staging post op pathology pT3b pNO and Gleason 4+5 ( percentage of pattern 5 was 30%).


Seminal vesicle invasion , from the pathology report:


Part A is designated "prostate and seminal vesicle and anterior bladder neck" and consists of a 75.2 gram, 6.5 cm right to left by 4.5 cm apex to base by 4.5 cm anterior to posterior prostate with attached seminal vesicles (right is 4.1 x 1.5 x 0.5 cm; left is 4.1 x 1.5 x 0.6 cm) and vasa deferentia (right is 5.5 cm in length by 0.7 cm in diameter; left is 3.7 cm in length by 0.8 cm in


Cheers Clinton


 


 

User
Posted 10 May 2024 at 18:42

Hi Chris,


Thankyou for sharing that , I am really interested in getting accurate scans to better direct radiation. What sort of scan were you having when they included your knees? What was your PSA at the time? Was this scan due to BCR after initial treatment?


Thanks Clinton

User
Posted 10 May 2024 at 19:02

Hi Clinton. I did respond to your original post but you may not have seen it. We seem to have similar journeys

User
Posted 10 May 2024 at 19:26

Originally Posted by: Online Community Member


Hi Clinton. I did respond to your original post but you may not have seen it.


Clinton has just responded to it Chris. πŸ‘


https://community.prostatecanceruk.org/posts/t30583-High-First-Post-RP-PSA-test


 

Edited by member 10 May 2024 at 19:28  | Reason: Link

User
Posted 10 May 2024 at 19:53

Originally Posted by: Online Community Member


Hi Chris,


Thankyou for sharing that , I am really interested in getting accurate scans to better direct radiation. What sort of scan were you having when they included your knees? What was your PSA at the time? Was this scan due to BCR after initial treatment?


Thanks Clinton



Clinton,click on my name and have a look at the beginning of my profile to see the journey. 


The scan that included the knees was the Gallium 68 PSMA scan and the PSA was 4.6, that was my third recurrence.


Surgery 2024.


Salvage RT to prostate bed not HT due to stricture issue ,the PSA did drop for a while so something was presumably in the bed .2017


5 SABR treatments to pelvic lymph nodes August 2022.


At this point we took advantage of private medical insurance, the NHS does have restrictions of the number of tumors they will trea.


5 SABR treatments to second pelvic lymph node plus bicalutamide May 2023.


There is research on the different tracers used in PSMA scans, my 1007 tracer didn't pick up the second tumor,but it was described as very small. Hope this helps


Thanks Chris 

User
Posted 10 May 2024 at 20:42
Thankyou Chris for your sharing your chronology detail, it certainly underlines the "journey" concept for me. All the best. Clinton
User
Posted 17 May 2024 at 06:21

Originally Posted by: Online Community Member


Thank you. I’ve recently had  PSMA PET CT scan to see if the source of the PSA level can be identified.  I’m due to discuss the results on a phone appointment with the consultant surgeon next week so I’m hoping for some answers.  



Any news yet mate?

User
Posted 31 May 2024 at 11:55

Hi everyone.  I’ve has the PET CT scan and I’ve had the phone appointment with the surgeon to discuss the results.  The scan was inconclusive but showed no “hot spots” and no evidence to suggest it’s spread but it didn’t show the source of the PSA levels.   I’ve now had 3 blood tests since my op in February and the readings have been 4.06, 3.73 and the most recent from just over a week ago was 3.68. Heading in the right direction but VERY slowly especially considering that it was at 4.9 at its highest pre op.  The surgeon is puzzled and has referred me to a urologist oncologist next week to see if he can shed some light on it.   

User
Posted 31 May 2024 at 12:01

Great news regarding no hot spots! Its certainly a mystery, but at least the readings are heading in the right direction.


I hope that they solve the mystery and that you make a full and speedy recovery.


Please keep us updated.

Edited by member 01 Jun 2024 at 20:02  | Reason: Typo

User
Posted 07 Jun 2024 at 00:55

Hi Adrian.  I went to see the urology oncologist consultant on Wednesday 5/6 to discuss the refusal of my PSA levels to drop and the PET CT scan results.   He told he that I have some prostate tissue which couldn’t be removed in the operation which is at stage 3 which will require radiotherapy to treat.  I have a planning CT scan next week and the treatment will be every day Monday - Friday for 4 weeks starting in 2-3 weeks time as well as hormone injections every 3 months for 2 years.  He was very reassuring and told me that it’s totally curable and I will be fine.

User
Posted 07 Jun 2024 at 07:09

Hello mate. Thank you very much for the update.


Presumably he confirmed that your PSMA scan was clear? ( PS: I keep getting PSMA (Prostate Specific Membrane Anti-gen) and PMAS (Police Mutual Assurance Society) mixed up. One helps save your life, the other just helps you save.😊)


Its a shame that your operation wasn't completely successful  in removing all the cancerous cells. It seems quite a common problem that cells are left behind in the prostate bed. What's not so common is for your PSA to be almost as high post op as it was pre op, and that still mystifies me. 


However, I'm so pleased that you've quickly been give a follow up treatment plan and hope wish you have a speedy and full recovery. 


Please, continue to keep us updated.


 

Edited by member 07 Jun 2024 at 08:33  | Reason: Additional text

User
Posted 07 Jun 2024 at 07:16

Hi Everyone, 


To recap:


3 months post RP PSA: 0.31


2 weeks later : 0.42


2 weeks later : 0.35


2 days later : 0.39 ( confirmation test)


I had been hoping to get 0.5 to get PSMA scan and more accurate radiation. But feel I have been playing roulette with high risk factors ( Gleason 9/ extracapsular extension / seminal vesicle invasion) and today told my radiation oncologist I wanted to start hormone therapy and radiation now. I feel calmer now there is a plan.


Clinton

User
Posted 07 Jun 2024 at 07:23

Thanks for the update Clinton. I'm glad that you feel much more secure now that follow up treatment has been decided. Good luck mate.

User
Posted 07 Jun 2024 at 07:32
Thankyou Adrian
User
Posted 07 Jun 2024 at 07:36

Hi Clinton,


It’s a pity you’ve got to go through SRT having already had an RP,but that’s always a risk with surgery on borderline cases and at least you have a Plan B. You always feel better once a treatment plan is in place and I wish you all the best that they manage to zap anything that’s left.


Good luck,


Derek

User
Posted 07 Jun 2024 at 07:37

Thanks Derek

User
Posted 07 Jun 2024 at 08:53

Hi Everyone ,


Clinton was my username when I started on this forum . My name is Des and I actually live in Clinton. I will being using Des from here on!


Cheers Des

User
Posted 07 Jun 2024 at 10:01

Originally Posted by: Online Community Member
Clinton was my username when I started on this forum . My name is Des and I actually live in Clinton.


Hi Des.


I thought you'd picked Clinton after 'naughty Bill'😁

Edited by member 07 Jun 2024 at 19:03  | Reason: Typo

User
Posted 07 Jun 2024 at 21:04

Welcome Des from Clinton😊

User
Posted 10 Jun 2024 at 00:30

Hi Adrian.  Yes, the PSMA scan came back to show that the cancerous cells hadn’t spread but it DID indicate cells in the margin that wasn’t able to be removed. There had been a problem in the op due to adhesion of the gland onto surrounding tissue. 
The urology oncologist is very confident that the radiotherapy will be totally successful so happy days! 
I’ll keep you posted.  πŸ‘

User
Posted 10 Jun 2024 at 10:19

Originally Posted by: Online Community Member
Hi Adrian.  Yes, the PSMA scan came back to show that the cancerous cells hadn’t spread but it DID indicate cells in the margin that wasn’t able to be removed. There had been a problem in the op due to adhesion of the gland onto surrounding tissue. 


Thanks for the update mate. Great news about the scan and it looks like you were unlucky with the op. I'm pleased that they think your new treatment will sort the job. You seem to be coping very well. πŸ‘


 

User
Posted 21 Jun 2024 at 00:55

Hi Adrian.   I went for the pre RT planning scan last week as arranged but they couldn’t do the scan as I had problems getting the correct amount of urine in my bladder for the scan to be accurate so after 2 unsuccessful attempts I was sent home to return today.  This time it went ok and the scan was completed.  I will be sent an appointment in the next week or so to start RT in  3-4 weeks.  I also started the hormone jabs today so everything is moving ahead.  How are you getting on? 


UPDATE


Planning scan successfully completed 20/6/24.   RT due to start Wednesday 10/7/24.  20 sessions. I’ve had 1 x hormone jab, next one due September.


Further update.


 20 Sessions of RT completed 7/8/24 and I have an appointment to go back and see the oncology consultant in about a months time.   The 20 sessions went ok and I didn’t have any side effects till about half way through.  I felt a bit rough a couple of times and started to have tummy problems including “wet wind” which is unpleasant to say the least!  Everything I’ve been told and what I’ve read told me that the side effects get worse in the first 2 weeks after the procedures finish before they start to get better so I’m looking forward to that!. I had a PSA test when I was nearly at the end of the sessions and it came back as 1.56. Less than half of what it was before I started!!  

Edited by member 15 Aug 2024 at 01:24  | Reason: Not specified

User
Posted 21 Jun 2024 at 07:47

Hello David.


I really feel for you mate. It's only been 4 months since your prostatectomy. It's no wonder that you were struggling to have the right amount of urine. 4 months post op I had very little bladder control. 


I'm pleased that you managed to get the scan completed at the second attempt and that your RT treatment is scheduled. I hope the rest of your treatment goes well and that you make a full and speedy recovery.


I'm not so bad thanks. Much better than I was this time last year.

User
Posted 21 Jun 2024 at 08:06

Sapper, It might be worth doing a few practice runs at home to get your bladder capacity right, although it may change as treatment progresses. My appointment times were a bit all over the place. I kept hydrated though the whole process. I would drink water on the way to hospital check the appointment was on time, empty the bladder and then drink the 500/600 mls of water. 


Hope all goes well for you.


Thanks Chris.

User
Posted 27 Aug 2024 at 08:13

Hi Sapper.


I was going to pm you to see how your salvage treatment was doing but realised that you have put some late edits in your last post (21/06) to update us.


I'm bumping the thread so others, who missed your updates, can view your progress.


I wish you well mate.

Edited by member 27 Aug 2024 at 08:18  | Reason: Additional text

 
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