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My experience - High PSA and conclusion

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User
Posted 31 Jan 2020 at 15:48

Hi everyone,  I had posted in another person's conversation, as I first found this site when I did an internet for High PSA explanation.  Thought I'd take the time to summarize my story in a new conversation.  I am 57 years old, in good health.

My Story

HIGH PSA NO EXPLANATION For 5+ years.

I think I was first referred to a a urologist back in 2013 or 2014 when my PSA results went up.    By the time I was referred to urologist,  it was around 8.    Over the next 5+ years,  my PSA pretty much went steadily up (probably up by about 3 every time).   I had biopsy, repeat biopsy,  MRI,   biopsy,  MRI, MRI, MRI,   nothing detected.   But my PSA kept gong up.   

Now all this time, everything else was ruled out.   No infection,  no enlarged prostate,  in fact my prostate is small.While I prefer MRI to biopsy.   Urologist suggested another biopsy in early 2019 (by this time PSA was 24).

GLEASON 6 FOUND WHAT NOW?

With PSA steadily increasing,  I told myself that chances are eventually they would find something, and I should be glad that if something found, that it was found early.

Sure enough,  "cancer" found in April 2019 biopsy.   5 of 7 cores (5 other cores missed tissue samples due to my small prostate).   Rated Gleason 6.  

By this time, by urologist was on medical leave himself.  So they had young urologists filling in for him.

I asked for Bond Scan and CT scan, and young urologist agreed this made sense due to PSA level and trend.   We discussed options and young urologist mentioned that AS may be more difficult as AS may involve continued biopsies, and with small prostate, hitting sample gets harder.

Bone Scan came out clean,  CT scan pretty clean, but one speck in lung area not of great concern, but may be something to look at again.   Young urologist then said out protocol is to not treat Gleason 6.

I found that a little inconsistent, as first he told me AS would be difficult, and then he pretty much says AS is only option.   Futhermore,  while AS often is the best answer for Gleason 6,  my prostate is small and my PSA has shot up steadily for six years to 24.    People in forums taking about Gleason 6 is nothing to worry about often not mention PSA level,  and Gleason 6 with very high (and always increasing PSA) would not be considered low risk.

I wasn't comfortable with the mixed messages, so I got my case transferred to the top cancer center in my country (Canada), the Princess Margaret Cancer Center.  I specifically asked for referral to the top uro-oncologist there.  This surgeon is extremely respected, and while he is a very strong advocate for active surveillance,  he said too many things about my case don't add up.   He agreed with my concerns, and suggested treatment.  

I had Robotic Surgery on Dec 11th.

POST-OP PATHOLOGY

Post-OP,  the Pathology report upgrade my score from Gleason 6 to Gleason 7 (3 + 4) with 30% of prostate showing 4.   Grade grade upgraded from T1c to T3a, as the tumor has extended outside the prostate itself,  with a limited positive margin at the apex.     Good news is lymph nodes and seminal vessels are clear.   With those results,  no doubt getting treatment before it spread was the right decision.

My first post-op PSA is down to .0.092.    <.0.05 is considered undetectable,  so this is a little above the undetectable threshold,  but pretty good considering there was a limited positive margin.  Will continue to monitor, and if PSA increases, low dose radiation should be all that's needed it it comes to that.   But looking good so far.

Incontinence is already not a problem even at 6-7 weeks post surgery.   I was pretty active before, with strength training and lots of yoga (which really helps pelvic floor).  Plus to get a head start,  pre-surgery I did see a Physiotherapist who specializes in Pelvic Floor issues for men and women to be sure I was doing kegels properly.  I use one pad per day mainly just for security.  Some dribbling at times.  But that should continue to improve.

ED will hopefully improve as well.   Going on daily Cialis now.    Area was tender for few weeks after catheter removal, but better now.   

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Edited by member 26 Feb 2020 at 20:20  | Reason: Minor corrections to spelling, dates, etc..

User
Posted 31 Jan 2020 at 20:37

It's better to have your own thread.  That's quite a story.

My first thought is whether the psa has reached its minimum.   What are the exact dates and psa levels at each test.  PSA declines by halving about every 3 days.  So if your psa was rising rapidly it might have gone up by more by the time of the op.    It would then take longer to come down.   From 30 to 0.03 would normally be about 30 days although I wouldn't say that can be taken as an absolute fact.    Clutching at straws maybe but worth checking that your psa at 0.092 has reached its lowest.

At 0.092 it would be regarded as undetectable at some hospitals in the UK as they believe it reduces errors and prevents unnecessary concern by patients.

All the best, Peter

 

User
Posted 31 Jan 2020 at 21:10
What a good decision to look elsewhere for a more accurate diagnosis and to opt for radical treatment. It's now a 'wait and see' situation but if needed an oncologist should now have a better idea of where to direct RT.
Barry
User
Posted 01 Feb 2020 at 18:37

VERY MINOR TIP REGARDING PADS - NEWBORN DIAPERS

Not that important, but a little tip from my hospital (Princess Margaret in Toronto, who do a lot of work on Prostate Cancer).   I've not seen this tip anywhere else,  but they specifically recommend "newborn diapers" for use by men as pads after catheter removal.   Now before, going through this, I was wondering why diapers and why specifically the smallest-size (newborn) diapers and not a larger size like toddler size?

So the reasons are:  they are more absorbent, and less expensive than pads marketed for adults.  Most importantly, newborn diapers fit men perfectly!   How do they fit perfectly?   You cup your penis and scrotum with the small newborn diaper -- using the tabs in the diaper to secure around from the back of scrotum to the front -- result perfect secure fit.

CONTINUED MONITORING

As Peter mentioned,  maybe my PSA hasn't reached bottom yet.   My step-father (who is a family physician who had his prostate removed ten years ago) was also surprised that it has already dropped to .092 just 6-7 weeks post surgery.      The plan is likely quarterly PSA tests for the near future to see how the PSA levels trend.   Due to T3a grade and limited positive margin,  if it does start going up, then doctors will be a little quicker to suggest a few weeks of low dose radiation.   But also good chance that it remains low or goes lower.   

 

 

Edited by member 01 Feb 2020 at 18:42  | Reason: Not specified

User
Posted 18 Apr 2020 at 19:49

Janus

I was told my SRT to the prostate bed was a very educated guess that the cancer was there. Not easy in the current situation but a it might be worth having a discussion about one the better scans. My PSA dropped after SRT but is on the rise again.

Thanks Chris

User
Posted 18 Apr 2020 at 20:19
Sorry to see this Janus. If you were my brother or friend, I would want some evidence (aka more detailed scans) that the active cancer cells are only at the apex where the positive margin was and therefore within zapping range before agreeing to adjuvant RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Apr 2020 at 21:01
I refused all SRT having a post op psa of 1.5. They said it wouldn’t be curative. Yes , I have recurrence now in spine and abdomen but none at the prostate site nor bladder margins. Glad I didn’t undergo unnecessary further treatment , and it fails 50% of the time anyway
User
Posted 19 Apr 2020 at 10:29

I would back up what Lyn said - try and get a scan to prove it is where they think it is. If it's somewhere else, you might lose the option to have that radiated later if they don't do it now. A research project showed that a high quality PSMA scan before salvage radiotherapy resulted in a change to the previously planned treatment area in a significant number of cases.

User
Posted 14 May 2020 at 00:46
You are fortunate insofar as getting the most advanced PSMA scan, the 18F DCFPyL currently only available in Canada and the USA (where it was developed by Martin Pomper et al at John Hopkins) where it is presently part of a trial.

Let us know result.

Barry
User
Posted 21 May 2020 at 03:22
There are firms that offer mobile full body scans in the back of a truck for the worried well for £££, but as you have discovered, they may pick up all kinds of things that will never be a problem.

Conversely, we have men here who have gone in for a kidney scan which showed they have prostate cancer...

Thank you for being a pioneer guinea pig in the treatment of this disease.

Cheers, John.

User
Posted 21 May 2020 at 08:21
And my prostate MRI scan showed that I had kidney cancer 🙂 (so I'm now minus a left kidney). My surgeon told me that the scan undoubtedly saved my life.

Cheers,

Chris

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User
Posted 31 Jan 2020 at 20:37

It's better to have your own thread.  That's quite a story.

My first thought is whether the psa has reached its minimum.   What are the exact dates and psa levels at each test.  PSA declines by halving about every 3 days.  So if your psa was rising rapidly it might have gone up by more by the time of the op.    It would then take longer to come down.   From 30 to 0.03 would normally be about 30 days although I wouldn't say that can be taken as an absolute fact.    Clutching at straws maybe but worth checking that your psa at 0.092 has reached its lowest.

At 0.092 it would be regarded as undetectable at some hospitals in the UK as they believe it reduces errors and prevents unnecessary concern by patients.

All the best, Peter

 

User
Posted 31 Jan 2020 at 21:10
What a good decision to look elsewhere for a more accurate diagnosis and to opt for radical treatment. It's now a 'wait and see' situation but if needed an oncologist should now have a better idea of where to direct RT.
Barry
User
Posted 01 Feb 2020 at 18:37

VERY MINOR TIP REGARDING PADS - NEWBORN DIAPERS

Not that important, but a little tip from my hospital (Princess Margaret in Toronto, who do a lot of work on Prostate Cancer).   I've not seen this tip anywhere else,  but they specifically recommend "newborn diapers" for use by men as pads after catheter removal.   Now before, going through this, I was wondering why diapers and why specifically the smallest-size (newborn) diapers and not a larger size like toddler size?

So the reasons are:  they are more absorbent, and less expensive than pads marketed for adults.  Most importantly, newborn diapers fit men perfectly!   How do they fit perfectly?   You cup your penis and scrotum with the small newborn diaper -- using the tabs in the diaper to secure around from the back of scrotum to the front -- result perfect secure fit.

CONTINUED MONITORING

As Peter mentioned,  maybe my PSA hasn't reached bottom yet.   My step-father (who is a family physician who had his prostate removed ten years ago) was also surprised that it has already dropped to .092 just 6-7 weeks post surgery.      The plan is likely quarterly PSA tests for the near future to see how the PSA levels trend.   Due to T3a grade and limited positive margin,  if it does start going up, then doctors will be a little quicker to suggest a few weeks of low dose radiation.   But also good chance that it remains low or goes lower.   

 

 

Edited by member 01 Feb 2020 at 18:42  | Reason: Not specified

User
Posted 18 Apr 2020 at 17:11

Well I guess my story has not concluded yet.

Had follow-up test on Friday, and can already see the results on-line before even speaking with Doctor.

They did a repeat CT scan to make sure the nodule that was spotted in the prior CT scan had no change.  And good news is there is no change, and nodules are not considered suspicous.

Bad news is that my PSA is now 0.33 at four months post surgery, when 6 weeks post-surgery,  PSA was 0.092.    

I expect they will suggest follow-up radiation.

 

User
Posted 18 Apr 2020 at 19:49

Janus

I was told my SRT to the prostate bed was a very educated guess that the cancer was there. Not easy in the current situation but a it might be worth having a discussion about one the better scans. My PSA dropped after SRT but is on the rise again.

Thanks Chris

User
Posted 18 Apr 2020 at 20:19
Sorry to see this Janus. If you were my brother or friend, I would want some evidence (aka more detailed scans) that the active cancer cells are only at the apex where the positive margin was and therefore within zapping range before agreeing to adjuvant RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Apr 2020 at 21:01
I refused all SRT having a post op psa of 1.5. They said it wouldn’t be curative. Yes , I have recurrence now in spine and abdomen but none at the prostate site nor bladder margins. Glad I didn’t undergo unnecessary further treatment , and it fails 50% of the time anyway
User
Posted 19 Apr 2020 at 10:29

I would back up what Lyn said - try and get a scan to prove it is where they think it is. If it's somewhere else, you might lose the option to have that radiated later if they don't do it now. A research project showed that a high quality PSMA scan before salvage radiotherapy resulted in a change to the previously planned treatment area in a significant number of cases.

User
Posted 19 Apr 2020 at 16:24
Thanks to all for advice on next steps.
User
Posted 27 Apr 2020 at 20:37
Further update. Just had my consultation. It was by telephone with all this COVID19 issues.

My uro-oncologist is ordering follow-up scans on urgent basis..

1. First bone and CT scan of pelvic area.

2. Then latest highly sensitive PSMA PET scan (currently only available as part of clinical trial in Canada).

These scans should be booked and conducted within weeks (should have some appointment dates in the system by tomorrow).

Once all scans are complete, can decide if radiation is the route, and exactly where to aim the radiation.

User
Posted 13 May 2020 at 20:28
Latest update.

Had full body bone scan and CT scan of abdominal and pelvic area already (happy with how quickly they got these tests done) and had follow-up consultation today. No evidence of metastatic disease in either bone scan or CT scan.

So now I will be put into the clinical trial for PSMA PET (18F-DCFPyL) scan. As mentioned in my last note, currently PSMA PET scan is only available in Canada as part of clinical trials (meant to prove the superiority of PSMA PET scans in making decisions of how to treat). If there was evidence of metastatic disease, I would not have been eligible (as PSMA PET scan would not change course of treatment if there was metastatic disease).

Expect it will take four weeks to get my PSMA PET scan, as more paper work to go through with clinical trials. Results of that scan will decide course of treatment.

User
Posted 14 May 2020 at 00:46
You are fortunate insofar as getting the most advanced PSMA scan, the 18F DCFPyL currently only available in Canada and the USA (where it was developed by Martin Pomper et al at John Hopkins) where it is presently part of a trial.

Let us know result.

Barry
User
Posted 20 May 2020 at 20:34

Another quick update.

I have my PSMA PET 18F-DCFPyL scan scheduled for this coming Monday. This is much quicker than I expected, which is great news. I think the COVID19 situation actually helped, as they were still doing all the clinical trial scans during the pandemic, but the flow of new incoming patients slowed (particularly those who were eligible for the trial before treatment for prostate cancer). So I'm getting my scan extremely quickly which is good news.

Unrelated to prostate cancer, but when you get so many scans of your whole body, they do notice little things and suggest a further look. E.g. by 2019 scan showed a little something in the lung area, and they ordered a new base level chest CT scan after my surgery and that CT scan showed no change (so nothing of concern). Now latest lower body CT scan (ordered due to PSA rise) shows a subcentimeter lesion in the kidney -- urologist says this has nothing to do with prostate cancer, but I will also be getting an ultrasound to look at that area as well just to double check.

I had a chance to ask a few question about the PET 18F-DCFPyL scan. As Old Barry posted, it is available in Canada and the US as part of clinical trials. At some of the US universities, you can pay for the scan if you are not in the clinical trial. They also told me this scan is also used now in Israel, and in Germany (though the person I spoke may be thinking about the 68Ga version of the PSMA PET scan).

 

Edited by member 21 May 2020 at 00:34  | Reason: Not specified

User
Posted 21 May 2020 at 03:22
There are firms that offer mobile full body scans in the back of a truck for the worried well for £££, but as you have discovered, they may pick up all kinds of things that will never be a problem.

Conversely, we have men here who have gone in for a kidney scan which showed they have prostate cancer...

Thank you for being a pioneer guinea pig in the treatment of this disease.

Cheers, John.

User
Posted 21 May 2020 at 08:21
And my prostate MRI scan showed that I had kidney cancer 🙂 (so I'm now minus a left kidney). My surgeon told me that the scan undoubtedly saved my life.

Cheers,

Chris

User
Posted 26 May 2020 at 17:35

Thanks to all again for your support and suggestions.

Further update.

Had my PSMA PET 18F-DCFPyL scan yesterday and spoke to my uro-oncologist today. As mentioned in one of my prior notes, the COVID19 situation likely helped speed things up for me as I got Bone Scan, CT scan and clinical trial for PET 18F-DCPFPyL scan within one month of getting my 0.33 PSA test result.

So what was the result?
The super sensitive PSMA PET 18F scan found nothing, despite a very quick increase in PSA from 0.092 to 0.33 (and my long history of steadily increasing PSA prior to diagnosis -- PSA had reached 24 prior to surgery).

My uro-oncologist (who is head of department and GU lead for cancer research in Ontario) says the two possibilities are:
* Remaining cancer cells are too small for even the most advanced scan to pick up.
* There is more than one location, and each location is too small for even the most advanced scan to pick-up.

Based on my age 57 and good health, he recommends low does Radiation. I agree with his recommendation and will move on to next step.

Would have been nice if the PET scan picked up an exact spot to aim the radiation, but it's better news than if the advanced scan picked up metastasis elsewhere.

 

 

 

Edited by member 26 May 2020 at 18:18  | Reason: Not specified

User
Posted 02 Jun 2020 at 16:26

Further update (again I'm in Canada for context).

CHECKING OTHER THINGS

I had an ultrasound last week just to check the kidney as the CT scan showed a tiny lesion on one kidney that is unrelated to prostate cancer.    Ultrasound shows no concerns.   

POST-SURGERY RADIATION

Had my telephone consultation with my radiation oncologist this morning.   While he is very busy,  he spent a lot of time going over my history, and explaining the process.     I knew getting follow-up radiation made sense with my relatively young age and good health.   Some of the other things he went over with me (he was very through):

* Went over my history (5+ years of steadily increasing PSA, with lots of biopsies and MRIs before Gleason 6 found in April 2019.

* Post-surgery pathology:   Gleason 7 (3+4) with 30% grade 4; limited positive margin. Lymph nodes clear.

* One thing in the pathology report I did not focus on in my pathology report, is that I have Intraductal from of Prostate Cancer,  which can be more aggressive, and again point to additional treatment.

*  The PSMA PET 18F-DCFPyL scan found no evidence of spread.   While it would have been nice if it had spotted one exact spot to aim radiation,  with PSA of 0.33, it may be too small for even the PET 18F scan to pick-up.

I will be starting a course of daily (5x per week) low dose radiation for 6.5 weeks.    Normally takes 2-3 week to commence treatment, but it could be a lot quick than that due to COVID19 slowing inflow of new patients (as I found for all my scans).

 

 

 

 

 
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