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

Notification

Error

PSA rising after prostate removal 5 years ago

Email this conversation Print this conversation
User
Posted 22 Nov 2024 at 10:32

Hi.

I had robotic prostate removal in 2019 with a Gleason of 4/5.

My 3 monthly, and later on 6 monthly PSA was 0.01 but last year went to 0.02. My last test a week ago, which I was hoping would be my last one, rose to 0.04. I have now been notified that I will have another PSA test in 3 months.

I am waiting to speak to my doctor about the result's, but can’t get an appointment for 2 weeks.

Has anyone else had these sort of results, and what happens next. I’ll be honest I’m already starting too worry.

User
Posted 22 Nov 2024 at 14:05
Yep check my profile. It's pretty common TBH.

Key thing is not to ignore it. Whether it needs treatment sooner, later or never depends on your post op pathology, rate of doubling and your age. Your GP won't be much help and will probably tell you a load of bollox. Make sure you stay under the Oncologist with at least 3 monthly PSA tests.

User
Posted 22 Nov 2024 at 10:32

Hi.

I had robotic prostate removal in 2019 with a Gleason of 4/5.

My 3 monthly, and later on 6 monthly PSA was 0.01 but last year went to 0.02. My last test a week ago, which I was hoping would be my last one, rose to 0.04. I have now been notified that I will have another PSA test in 3 months.

I am waiting to speak to my doctor about the result's, but can’t get an appointment for 2 weeks.

Has anyone else had these sort of results, and what happens next. I’ll be honest I’m already starting too worry.

User
Posted 22 Nov 2024 at 11:56

Hi Kev.

Thanks for the response. 

I never kept any of the results from the hospital, but all I remember is my gleason score was 4/5. My PSA was only 5 as I remember, but my father had Prostate cancer, so my GP took it quite seriously, thankfully. They said it hadn't spread outside the Prostate, but it was very close to the edge, so removing completely was the best option.

I really believed that this month I would celebrate being clear, but obviously not now.

Martin.

 

 

User
Posted 22 Nov 2024 at 12:48

Hi Martin,

Welcome to the forum mate.

I'm very sorry to hear that there has been a very slight rise in your PSA, especially as you'd been clear for 5 years.

I had a similar diagnosis to yours.

I had my prostectomy 22 months ago. I was Gleason 9 (4+5), PSA 6.6, T3a with EPE, it had just breached the capsule.

Since the op my results have been undetectable. My PSA has been tested at two different laboratories, one measures down to 0.04, the other to 0.02. Which ever, I've so far had the < less than sign in front of my readings. Have your tests all been done at the same laboratory? Did any of them have the less than sign?

I believe if you get  consecutive results that show a rising trend or your PSA reaches 0.2 salvage treatment can be considered. 

Nonograms suggest that at best I have a 50/50 chance of BCR after 5 years. Being a glass half empty sort of person, I'm dreading and fully expecting, having to have salvage treatment at sometime in the future.

I fully understand the disappointment you must be feeling. I wish you well mate.

 

 

User
Posted 22 Nov 2024 at 13:55

Hi Martin,

My psa came back on the 5th anniversary too.  The threshold was <0.05 and it came back at 0.06.  The next reading was 0,09 but then it went down to 0.07 and climbed very slowly to 0,11 in 3yrs.  So it hasn't doubled in 3yrs which is a decent enough result.

It led me to think it might have been rising for a few years before I knew about it.  So you have an earlier heads up which is good.

They transferred me to Oncology last August at 0.11 and I saw the Consultant.   She said it was probable it will slowly rise for many years and at the current rate it could be years before I needed treatment at say a psa of 10, hormones she said.  I'd be over 90.   I was also offered Radiotherapy now without a scan as a scan would likely find nothing or to wait and see how it went up to around psa 0.2 and decide then.   That is what I'm doing.

Another factor is you see a lot of different success rates for RT without a scan.  The Oncologist told me it's just over 50%, I can't remember the exact number,  but she does better getting nearer 60%.  It's quite tempting to go for that.

So it depends on how it settles down.  One reading might not be significant mine went up and down a couple of times.

I also had a randmom psa test 9 months before it became detectable.  That was at a different hospital and it came back as 0.08 which worried me as it was a big increase,  I was told they use <0.06 as detectable.   I then went to my normal hospital and they gave me a test that came back undetectable so I was hoping to be set free at the next test.

You're probably with Urology now.  I kept asking to be transferred  to Oncology so they gave it me and now I'm on their books and have an open door to changing my treatment when necessary by ringing the Macmillan Nurse for a referral.  That's the impression I got anyway.

That's what happened to me.  My Gleason was 4+4 yours is a bit higher, you've family history and are younger so they should pull out the stops for you.  Deciding on a psma scan is tricky as they're better at a higher psa.  So whether to have RT without a scan is a decision.  I'm on psa tests every 4 months but I'd recommend 3 months until you see a clear trend.  The Oncologist will judge from your psa level and rate of change and other factors.   

Good luck, let us know
Peter

  

Edited by member 22 Nov 2024 at 14:14  | Reason: Not specified

Show Most Thanked Posts
User
Posted 22 Nov 2024 at 11:24

Hi Martin,

Sorry to see your PSA is rising. I think you should at least discuss the best way forward with your GP (if you can get an appointment). Will you be having a scan or will you be referred to oncology with a view to some salvage treatment? Three monthly PSA tests seem logical to me but I would want a referral to oncology as soon as possible. 

I had RALP in 2019 and then salvage radiotherapy in 2022 after my PSA started rising. My PSA is now undetectable. 

If possible, could you let us know what your staging (T2C, T3A etc) and PSA was at diagnosis? Did you have positive margins etc? This will help others give more informed and better advice.

Hope this helps, 

Kev.

User
Posted 22 Nov 2024 at 11:56

Hi Kev.

Thanks for the response. 

I never kept any of the results from the hospital, but all I remember is my gleason score was 4/5. My PSA was only 5 as I remember, but my father had Prostate cancer, so my GP took it quite seriously, thankfully. They said it hadn't spread outside the Prostate, but it was very close to the edge, so removing completely was the best option.

I really believed that this month I would celebrate being clear, but obviously not now.

Martin.

 

 

User
Posted 22 Nov 2024 at 12:48

Hi Martin,

Welcome to the forum mate.

I'm very sorry to hear that there has been a very slight rise in your PSA, especially as you'd been clear for 5 years.

I had a similar diagnosis to yours.

I had my prostectomy 22 months ago. I was Gleason 9 (4+5), PSA 6.6, T3a with EPE, it had just breached the capsule.

Since the op my results have been undetectable. My PSA has been tested at two different laboratories, one measures down to 0.04, the other to 0.02. Which ever, I've so far had the < less than sign in front of my readings. Have your tests all been done at the same laboratory? Did any of them have the less than sign?

I believe if you get  consecutive results that show a rising trend or your PSA reaches 0.2 salvage treatment can be considered. 

Nonograms suggest that at best I have a 50/50 chance of BCR after 5 years. Being a glass half empty sort of person, I'm dreading and fully expecting, having to have salvage treatment at sometime in the future.

I fully understand the disappointment you must be feeling. I wish you well mate.

 

 

User
Posted 22 Nov 2024 at 13:02

Hi Adrian 

Thanks for the reply. As far as I'm aware, they are tested at the same lab, not sure what it means, but they say gold top test.

The first ones that came back at 0.01 were all undetectable. 

I'm like you, glass half empty, so now it's the wait till February for the next test. 

 

User
Posted 22 Nov 2024 at 13:55

Hi Martin,

My psa came back on the 5th anniversary too.  The threshold was <0.05 and it came back at 0.06.  The next reading was 0,09 but then it went down to 0.07 and climbed very slowly to 0,11 in 3yrs.  So it hasn't doubled in 3yrs which is a decent enough result.

It led me to think it might have been rising for a few years before I knew about it.  So you have an earlier heads up which is good.

They transferred me to Oncology last August at 0.11 and I saw the Consultant.   She said it was probable it will slowly rise for many years and at the current rate it could be years before I needed treatment at say a psa of 10, hormones she said.  I'd be over 90.   I was also offered Radiotherapy now without a scan as a scan would likely find nothing or to wait and see how it went up to around psa 0.2 and decide then.   That is what I'm doing.

Another factor is you see a lot of different success rates for RT without a scan.  The Oncologist told me it's just over 50%, I can't remember the exact number,  but she does better getting nearer 60%.  It's quite tempting to go for that.

So it depends on how it settles down.  One reading might not be significant mine went up and down a couple of times.

I also had a randmom psa test 9 months before it became detectable.  That was at a different hospital and it came back as 0.08 which worried me as it was a big increase,  I was told they use <0.06 as detectable.   I then went to my normal hospital and they gave me a test that came back undetectable so I was hoping to be set free at the next test.

You're probably with Urology now.  I kept asking to be transferred  to Oncology so they gave it me and now I'm on their books and have an open door to changing my treatment when necessary by ringing the Macmillan Nurse for a referral.  That's the impression I got anyway.

That's what happened to me.  My Gleason was 4+4 yours is a bit higher, you've family history and are younger so they should pull out the stops for you.  Deciding on a psma scan is tricky as they're better at a higher psa.  So whether to have RT without a scan is a decision.  I'm on psa tests every 4 months but I'd recommend 3 months until you see a clear trend.  The Oncologist will judge from your psa level and rate of change and other factors.   

Good luck, let us know
Peter

  

Edited by member 22 Nov 2024 at 14:14  | Reason: Not specified

User
Posted 22 Nov 2024 at 14:05
Yep check my profile. It's pretty common TBH.

Key thing is not to ignore it. Whether it needs treatment sooner, later or never depends on your post op pathology, rate of doubling and your age. Your GP won't be much help and will probably tell you a load of bollox. Make sure you stay under the Oncologist with at least 3 monthly PSA tests.

User
Posted 22 Nov 2024 at 14:42

Hi Martin,

I had RALP 3 years ago. My post op histology was T3a/N0/M0, Gleason 4+3. I too have family history of PCa. My initial post op PSA was undetectable then it rose to 0.06 and over two years to 0.2 at which point I was referred to oncology. I am now on a course of 33 fractions of radiotherapy (fraction 28 this morning!😁😁) and three monthly Decapeptyl injections for 2 years, although I think I will stop at 12 months. This is because the Decapeptyl will continue to shield my true PSA score for some time after I stop taking it and hence the true initial success or otherwise of the radiotherapy. Also, the recent HD-Radicals trial has indicated that in comparing 6 months and 24 months ADT, 24 months duration shows only a marginal benefit over 6 months in delaying any metastasis that may occur, while offering no extension to overall survival rate. So, my current thinking is to steer a middle course as I prefer to prioritise my quality of life and preserve my bone density. Both my prostate bed and lymph nodes are being treated as a belt and  braces approach to the most likely areas of spread. The onco made a point that the fact that no spread was actually seen in the nodes did not mean there was none, particularly at my low level of PSA. She said that a scan at that level would likely be inconclusive and it was best to proceed as we are doing, rather than wait for the PSA to rise to, say, 0.5, when a scan may be more feasible but at risk of micro mets travelling the lymph highway due to the delay in treatment.

Good luck with whatever path you will eventually take.

Peter

User
Posted 22 Nov 2024 at 16:41

Hi Martin

I have robotic removal in August 2021. First test 1 month later was undetectable.  Unfortunately like yourself my PSA started to rise as I was told by the surgeon it was a possibility it could comeback in the prostate bed. My Gleason score was 9. By January 2023 my PSA was 0.07 so was sent to Southampton (I am in Jersey) for a PSMA pet scan. Revealed a take up in the prostate bed, lower rib and just outside the pelvis. Saw my oncologist in February and was put on bicalutimide for 2 weeks prior to taking Apalutimide 4 x 60mg daily and a 3 monthly hormone jab. After 1 month PSA went to 0.01 After 2 months it went to <0.01 where it has stayed thank goodness.

I am lucky in some way as the only side effects I had was headaches which were mainly after the jab and hot flushes every now and then, which have now considerably reduced.

Hopefully after seeing your oncologist if he recommends the same as I had it will work for you.

All the best. Keep in touch

Freddy

 

User
Posted 22 Nov 2024 at 17:05

Hi Freddy.

It’s good to hear your results are so good.

I know it’s early days for me, but the side effects of hormone treatment worry me, but you seem to be ok.

lets hope your scores stay as low as they are now.

Good luck

Martin

User
Posted 22 Nov 2024 at 17:07

Interesting, the apparent differences in opinion as to when a PSMA scan is feasible. Although both Martin's and Freddy's Gleason scores were much higher than mine.

Peter

User
Posted 22 Nov 2024 at 17:14

Hi Freddy

Im starting to realise how many options there seem to be, and at what level PSA has to be, to be treated.

Good luck to you on your journey.

Martin

User
Posted 22 Nov 2024 at 18:46

Yes Plexx09 it's a surprise to find 3 lesions being found at 0.07.  Many hospitals only declare detectable at 0.1 and only allow psma scans around 0.4, but sometimes there are mix ups with decimal places and sometimes newer methods are introduced without fanfare.   It looks like Martin hasn't seen the earlier replies as well.

User
Posted 22 Nov 2024 at 19:36

I know it might not be of much comfort to you, but at least you will have a Plan B. SRT with possibly some HT as well. This journey certainly does have its ups and downs, right now I am on cloud 9 with me being discharged from my Ocncologist, but I know full well that I could be back seeing him when my Testosterone comes back, if my PSA starts to rise. You just have to keep the faith, keep active and be a little selfless. Funnily enough, I was at Maggies today and we were discussing this…I really don’t know how I would have coped without the support of my many friends in Maggies…some think it’s all doom and gloom and about Palliative care, but it’s far from it. It’s a safe place where you can go and be yourself, unload your thoughts or just sit and listen. And we have a good laugh as well, often at my expense🤣🤣 I went yesterday to speak with 3 nice young ladies who were 3rd year medical students…(Oh I wish my testosterone was back…sorry!). They were fascinated hearing about my journey and asked some really searching questions. We both benefitted, they learned a lot about Maggies and PCa, and I learned a lot about THEIR journeys to become our next generation of first class doctors. I wished them well😊

Derek

User
Posted 22 Nov 2024 at 19:41

Hi Derek

Thanks for that. It's great to know you are in a really good place. Long may that continue. 

I guess I'm in the early stages of further treatment, but here's to plan B.

Martin

User
Posted 22 Nov 2024 at 22:38

Martin. As already said there are lots of options and I suspect none of us are exactly the same. I had the salvage RT to the prostate bed at 0.23 without a PSMA scan,it was based on the "very educated guess and years of experience".

The PSA started to creep up after SRT, so I hadn't waited for the PSA to rise but presumably it had already spread. My histology of the prostate was poor so another variable to add into the equation. My last PSMA scan at 1.4 saw nothing and my PSA has now shot up again.

We still don't have the technology to allow our doctors to give the perfect treatment. Next month is my 11 year anniversary of diagnosis, I probably had a detectable cancer 14 years ago but it was missed. If I look back I probably had the start of prostate issues 23 years ago and my father died of prostate cancer at 81. 

I am not planning on going anywhere soon and I still have HT in the toolbox.

Best wishes for which ever plan you take 

Thanks Chris 

 

 

 
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