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Seeking advice from survivors/people undergoing treatment🙏

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User
Posted 16 May 2025 at 13:22

I'm posting here as a concerned daughter seeking advice on my father's treatment.

Started in June 2024 with symptoms of intense pain while urinating and poor steam of urine. Got ultrasound done, showed increase in size. PSA was 1.22. Had to change 3 urologists before we got a diagnosis in Sept 2024 after MRI CT Biopsy. Diagnosis was acinar adenocarcinoma GS 3+4. Pet scan done it was a locally aggressive. Dr asked us to wait for a month which is the norm after biopsy for Radical prostatectomy using Robotics.

October 2024 Surgery was done.GS 4+5 Prostate along with seminal vesicals and 4 lymph nodes removed. No lymph node involvement.PNI positive bladder neck positive.

November PSA 0.024. Started Luprolide.

January 2025 PSA 0.018

By this time, incontinence was extremely bad. Almost no control was achieved but the dr kept saying your treatment is on the right path.

Feb 2025- urgency and frequency got really bad. Had the urge to urinate after every 15mins. Drs decided to do Bladder neck incision so another surgery and then catheter.

March 2025- Dr got testosterone tested which came out 300! All this while we thought treatment was underway. But testosterone wasn't at castrate levels. Started Degarelix with got the treatment down to 7 in a week. Also started enzalutamide.

Psa 0.9 now. We inquired for a pet scan. The drs kept saying it's not needed right now. BNI report for histopathology came with focal neuroendocrine patchy synaptophysin positive. Chromogranin negative. Pathologist said treat it as adeno as morphology is the same. Medical oncologist said degarelix and enzalutamide will take care of it. But now dad was passing clots in the urine

March mid- Dad again started having pelvic region pain. We got Ultrasound done. There was a growth obstruction the ureters causing kidney swelling. Again the drs said it's nothing. Wait for the medications to work.

March end- post 2nd dose of degarelix, clots in the urine increased.

Decided to consult another oncologist. He advised FDG pet scan. It was confirmed that the bladder mass was blocking the ureters and causing kidney swelling. Another single solitary lesion in the lung lit up. Extremely disheartened and furious for not getting guidance all these months.

April 2nd week- Had to do another emergency surgery. Cystoscopy with TURBT and biopsy and DG stent placement. Biopsy showed the same results as last time

April end started Chemotherapy: Docetaxel and carboplatin. One cycle divided into 3 through Cannula.

Psa 0.14

May 16th- had to decide to get Picc line because the veins used the last time started showing blue black discoloration.

If you have read through the entire thing I'm extremely grateful. 🙏

Anybody who has information about

-Gleason 9 Score diagnosis

-bladder/lung lesion

-chemotherapy

-Neuroendocrine

-Picc line 

Please advice. Anything and everything would be really appreciated 🙏

To summarize it- Prostate cancer adenocarcinoma with focal neuroendocrine involved the bladder and solitary lung lesion. Undergoing docetaxel and carboplatin Chemotherapy +degarelix HT and later plan is to get radiation. 

Thankyou to everyone who gave their time.🙏

Edited by member 16 May 2025 at 16:06  | Reason: Not specified

User
Posted 17 May 2025 at 03:46
I see that as yet you have not had a reply to your post in which you ask for advice on your father's treatment. From what you say Dad has not received the degree of care that he should have done and that it was only by going to another Oncologist that the bladder mass was found. We generally have to accept what we are told by the professionals who deal full time with patients, have sight of scans and other tests and histology. Whilst some consultants are better than others, some admitting that they made mistakes, I don't think we as unqualified forum members are in a position to give advice on your father's treatment. There are many possibilities and nuances with PCa and its treatments and patients responses which means patients should be treated and monitored as individuals. Even professionals don't always know what is best and sometimes are only permitted to give a certain drug after another has failed or if a certain drug has failed that also precludes them giving a certain other. We can see that Dad didn't get timely treatment but the way forward must be determined by his Consultants. I note consideration is being given for Dad to have RT. This is sometimes done to reduce pain or to treat a few spots of cancer to eradicate them, although Dad is being treated systemically, which will attack cancer cells anywhere (and good cells too but these recover better than the cancer cells)
Barry
User
Posted 17 May 2025 at 15:02

Hi, I wondered whether to write as there is a lot in this I don't know anything about.  I'm impressed at your persistence that appears to me to have kept his treatment within bounds.

That his initial psa was 1.22 is a long way from what most people find, mine was 9.9 which isn't high at diagnosis.  The doctors could have thought it wasn't typical for prostate cancer.   He got prostate surgery within 4 months of seeing a doctor although the bladder pain seemed to be a complicating and perhaps not directly related problem.

The initial diagnosis of Gleason 3+4 was increased to 4+5.  It isn't uncommon to increase it post surgery although to 4+5 is quite a lot.  4+5 is quite high, mine was 4+4(increased from 4+3) which is also more than you want.  But 4+5 is better than 5+4 or 5+5 and you can never be sure if the 5 is marginal.

That his psa wasn't undetectable post surgery means it's still there.  But it's not usually detectable with a scan before the psa gets to 0.2 with a very good scan and usually more.

Is the obstruction related to prostate cancer?  He's now on chemotherapy and should hopefully respond.  I'm not sure what the obstruction is related to and if it's a different matter.

I hope the bladder obstruction can be sorted and then to focus on the cancer.  It is becoming more common to treat one or two lesions with RT although above that it means there is probably more so drugs are usually used.  People react very differently so keep pushing it will be helpful, I'm sure he's very appreciative.  I'm still not sure if to post this.  All the best Peter

User
Posted 18 May 2025 at 17:11

Hi Shamz,  

 

Ref your comment "It's common in higher Gleasons like 8 and above, where cancer cells lose their psa producing ability. So psa alone is not a reliable factor for follow up during and after treatment. That's why PSMA pet scan are better. "

I've never read that before. It appears logical although how common I don't know.

My past investigating found that higher Gleason gives off more psa. You might read this link which I stored some time ago.  Perhaps there's a paper that says in some cases it might be less.

 

(edit. I was unaware the valuable resource linked below was closed last March, I'll try and find the copy I kept)

https://www.practiceupdate.com/content/contribution-of-gleason-pattern-4-prostate-tissue-to-blood-psa-levels/146431/55/3/1

I think psma scans are generally speculative below a psa of around 0.3. Although a case with lower than normal psa could benefit.

Regards Peter

P.s. I found it. This might be just a part of it.

OBJECTIVE

To evaluate how blood levels of prostate-specific antigen (PSA) relate to prostate volume of benign tissue, Gleason pattern 3 (GP3) and Gleason pattern 4 (GP4) cancer.

METHODS

The cohort included 2209 consecutive men undergoing radical prostatectomy at 2 academic institutions with pT2N0, Grade Group 1-4 prostate cancer and an undetectable postoperative PSA. Volume of benign, GP3, and GP4 were estimated. The primary analysis evaluated the association between PSA and volume of each type of tissue using multivariable linear regression. R2, a measure of explained variation, was calculated using a multivariable model.

RESULTS

Estimated contribution to PSA was 0.04/0.06 ng/mL/cc for benign, 0.08/0.14 ng/mL/cc for GP3, and 0.62/0.80 ng/ml/cc for GP4 for the 2 independent cohorts, respectively. GP4 was associated with 6 to 8-fold more PSA per cc compared to GP3 and 15-fold higher compared to benign tissue. We did not observe a difference between PSA per cc for GP3 vs. benign tissue (P = 0.2). R2 decreased only slightly when removing age (0.006/0.018), volume of benign tissue (0.051/0.054) or GP3 (0.014/0.023) from the model. When GP4 was removed, R2 decreased 0.051/0.310. PSA density (PSA divided by prostate volume) was associated with volume of GP4 but not GP3, after adjustment for benign volume.

CONCLUSION

Gleason pattern 4 cancer contributes considerably more to PSA and PSA density per unit volume compared to GP3 and benign tissue. Contributions from GP3 and benign are similar. Further research should examine the utility of determining clinical management recommendations by absolute volume of GP4 rather than the ratio of GP3 to GP4.

 

 

 

Edited by member 18 May 2025 at 17:20  | Reason: Not specified

User
Posted 18 May 2025 at 17:24

There are 2 edits to my above post adding extra info if it's useful.  I've taken an interest in psa as mine is very slowly rising.

Show Most Thanked Posts
User
Posted 17 May 2025 at 03:46
I see that as yet you have not had a reply to your post in which you ask for advice on your father's treatment. From what you say Dad has not received the degree of care that he should have done and that it was only by going to another Oncologist that the bladder mass was found. We generally have to accept what we are told by the professionals who deal full time with patients, have sight of scans and other tests and histology. Whilst some consultants are better than others, some admitting that they made mistakes, I don't think we as unqualified forum members are in a position to give advice on your father's treatment. There are many possibilities and nuances with PCa and its treatments and patients responses which means patients should be treated and monitored as individuals. Even professionals don't always know what is best and sometimes are only permitted to give a certain drug after another has failed or if a certain drug has failed that also precludes them giving a certain other. We can see that Dad didn't get timely treatment but the way forward must be determined by his Consultants. I note consideration is being given for Dad to have RT. This is sometimes done to reduce pain or to treat a few spots of cancer to eradicate them, although Dad is being treated systemically, which will attack cancer cells anywhere (and good cells too but these recover better than the cancer cells)
Barry
User
Posted 17 May 2025 at 05:27

Thankyou Barry for taking out the time to read my story. I was anxiously waiting to hear from the kind members of the forum.

Me and family were extremely disheartened and disappointed when we understood about the negligence by the treating dr who's supposed to be one of the best urologist in India with 40+ years of experience and having treated more than 10,000 patients.

We are glad to have changed drs when we did and moving forward I will always take multiple opinions before making any decision.

Thankyou again for replying. Wishing you good health 🙏

User
Posted 17 May 2025 at 15:02

Hi, I wondered whether to write as there is a lot in this I don't know anything about.  I'm impressed at your persistence that appears to me to have kept his treatment within bounds.

That his initial psa was 1.22 is a long way from what most people find, mine was 9.9 which isn't high at diagnosis.  The doctors could have thought it wasn't typical for prostate cancer.   He got prostate surgery within 4 months of seeing a doctor although the bladder pain seemed to be a complicating and perhaps not directly related problem.

The initial diagnosis of Gleason 3+4 was increased to 4+5.  It isn't uncommon to increase it post surgery although to 4+5 is quite a lot.  4+5 is quite high, mine was 4+4(increased from 4+3) which is also more than you want.  But 4+5 is better than 5+4 or 5+5 and you can never be sure if the 5 is marginal.

That his psa wasn't undetectable post surgery means it's still there.  But it's not usually detectable with a scan before the psa gets to 0.2 with a very good scan and usually more.

Is the obstruction related to prostate cancer?  He's now on chemotherapy and should hopefully respond.  I'm not sure what the obstruction is related to and if it's a different matter.

I hope the bladder obstruction can be sorted and then to focus on the cancer.  It is becoming more common to treat one or two lesions with RT although above that it means there is probably more so drugs are usually used.  People react very differently so keep pushing it will be helpful, I'm sure he's very appreciative.  I'm still not sure if to post this.  All the best Peter

User
Posted 17 May 2025 at 16:10

Hi

I did 10 rounds of docetaxel last year I responded and coped well with it,I asked my local urologist if I could continue but it landed on deaf ears.

I am presently on the treatment arm of a trial cabizitaxel (round 4 out of 10)at the royal Marsden in Sutton,my condition at the moment is "stable with no progression" in the next few months I will ask the same question.

I've had kidney problems with nephrostomy tubes fitted on diagnosis and I have a kidney Stent fitted at present because of a tuma pressing on my urthea.

I hope this helps please read my profile for a little more info.

Best wishes Phil.

User
Posted 18 May 2025 at 13:38

Originally Posted by: Online Community Member

Hi, I wondered whether to write as there is a lot in this I don't know anything about.  I'm impressed at your persistence that appears to me to have kept his treatment within bounds.

That his initial psa was 1.22 is a long way from what most people find, mine was 9.9 which isn't high at diagnosis.  The doctors could have thought it wasn't typical for prostate cancer.   He got prostate surgery within 4 months of seeing a doctor although the bladder pain seemed to be a complicating and perhaps not directly related problem.

The initial diagnosis of Gleason 3+4 was increased to 4+5.  It isn't uncommon to increase it post surgery although to 4+5 is quite a lot.  4+5 is quite high, mine was 4+4(increased from 4+3) which is also more than you want.  But 4+5 is better than 5+4 or 5+5 and you can never be sure if the 5 is marginal.

That his psa wasn't undetectable post surgery means it's still there.  But it's not usually detectable with a scan before the psa gets to 0.2 with a very good scan and usually more.

Is the obstruction related to prostate cancer?  He's now on chemotherapy and should hopefully respond.  I'm not sure what the obstruction is related to and if it's a different matter.

I hope the bladder obstruction can be sorted and then to focus on the cancer.  It is becoming more common to treat one or two lesions with RT although above that it means there is probably more so drugs are usually used.  People react very differently so keep pushing it will be helpful, I'm sure he's very appreciative.  I'm still not sure if to post this.  All the best Peter

 

Hello! Let me start by saying that I'm extremely grateful for your reply :) really.. I genuinely mean it :)

About the PSA, the reason it took us 3 months to get a diagnosis was that PSA stayed within normal limits. I spoke to the dr about it and read alot of research papers. It's common in higher Gleasons like 8 and above, where cancer cells lose their psa producing ability. So psa alone is not a reliable factor for follow up during and after treatment. That's why PSMA pet scan are better. 

I hope you too are getting you routine pet scans done to check on the progress.

Wish you good health Peter and thankyou 🙏 

User
Posted 18 May 2025 at 14:12

Originally Posted by: Online Community Member

Hi

I did 10 rounds of docetaxel last year I responded and coped well with it,I asked my local urologist if I could continue but it landed on deaf ears.

I am presently on the treatment arm of a trial cabizitaxel (round 4 out of 10)at the royal Marsden in Sutton,my condition at the moment is "stable with no progression" in the next few months I will ask the same question.

I've had kidney problems with nephrostomy tubes fitted on diagnosis and I have a kidney Stent fitted at present because of a tuma pressing on my urthea.

I hope this helps please read my profile for a little more info.

Best wishes Phil.

 

Omg! Thankyou Phil for telling about the bio. I am new to this forum and I was unaware of this feature. I am just getting used to reply and quote features here.

My dad also had to get similar stents placed to open up the ureters. The cancer growth had blocked the ureters so through a cystoscopy they removed as much growth as possible and placed stents to keep the passage open to relieve the kidney swelling.

These DG stents have been quite painful. Sitting for long is a problem and also lying on the side while sleeping. Do you face similar issues?

Also i read through your bio. Have you had genetic testing done? MSI/HRR done through a simple blood sample. That open ups treatment options for Immunotherapy. I'm not sure how much it will help but definitely worth having a discussion with your oncologist.

Wish you good health and hope you keep smiling as in your picture :)

User
Posted 18 May 2025 at 15:35

Hi 

Yes i had generic testing for olaparib but unfortunately I wasn't eligible,in a nutshell the stent is sometimes uncomfortable but managble,I drink plenty to keep the pipe flushed but on the flip side of that the sensation to pee is always there,so planning journeys I need to bare in mind toilet stops.

Regards Phil 

User
Posted 18 May 2025 at 17:08

Oh, i see. stents are like that for mist. Uncomfortable but manageable.

Thankyou for the reply Phil!

User
Posted 18 May 2025 at 17:11

Hi Shamz,  

 

Ref your comment "It's common in higher Gleasons like 8 and above, where cancer cells lose their psa producing ability. So psa alone is not a reliable factor for follow up during and after treatment. That's why PSMA pet scan are better. "

I've never read that before. It appears logical although how common I don't know.

My past investigating found that higher Gleason gives off more psa. You might read this link which I stored some time ago.  Perhaps there's a paper that says in some cases it might be less.

 

(edit. I was unaware the valuable resource linked below was closed last March, I'll try and find the copy I kept)

https://www.practiceupdate.com/content/contribution-of-gleason-pattern-4-prostate-tissue-to-blood-psa-levels/146431/55/3/1

I think psma scans are generally speculative below a psa of around 0.3. Although a case with lower than normal psa could benefit.

Regards Peter

P.s. I found it. This might be just a part of it.

OBJECTIVE

To evaluate how blood levels of prostate-specific antigen (PSA) relate to prostate volume of benign tissue, Gleason pattern 3 (GP3) and Gleason pattern 4 (GP4) cancer.

METHODS

The cohort included 2209 consecutive men undergoing radical prostatectomy at 2 academic institutions with pT2N0, Grade Group 1-4 prostate cancer and an undetectable postoperative PSA. Volume of benign, GP3, and GP4 were estimated. The primary analysis evaluated the association between PSA and volume of each type of tissue using multivariable linear regression. R2, a measure of explained variation, was calculated using a multivariable model.

RESULTS

Estimated contribution to PSA was 0.04/0.06 ng/mL/cc for benign, 0.08/0.14 ng/mL/cc for GP3, and 0.62/0.80 ng/ml/cc for GP4 for the 2 independent cohorts, respectively. GP4 was associated with 6 to 8-fold more PSA per cc compared to GP3 and 15-fold higher compared to benign tissue. We did not observe a difference between PSA per cc for GP3 vs. benign tissue (P = 0.2). R2 decreased only slightly when removing age (0.006/0.018), volume of benign tissue (0.051/0.054) or GP3 (0.014/0.023) from the model. When GP4 was removed, R2 decreased 0.051/0.310. PSA density (PSA divided by prostate volume) was associated with volume of GP4 but not GP3, after adjustment for benign volume.

CONCLUSION

Gleason pattern 4 cancer contributes considerably more to PSA and PSA density per unit volume compared to GP3 and benign tissue. Contributions from GP3 and benign are similar. Further research should examine the utility of determining clinical management recommendations by absolute volume of GP4 rather than the ratio of GP3 to GP4.

 

 

 

Edited by member 18 May 2025 at 17:20  | Reason: Not specified

User
Posted 18 May 2025 at 17:24

There are 2 edits to my above post adding extra info if it's useful.  I've taken an interest in psa as mine is very slowly rising.

User
Posted 18 May 2025 at 18:00

Hi

Regarding PSA my oncology team who do check it and factor it in are more concerned with scan & x-ray results which being on a trial i have every 6/8 weeks.

My PSA on diagnosis was 2100 and my last PSA was approx 190....don't get hooked on numbers....everybodys different,my oncologist knows of somebody who's PSA is around 2 which you think would be great news but his QOL is not so great..he spends most of the day in bed.

Phil 

User
Posted 19 May 2025 at 17:18
Yes, I suppose the way to go about is keep checking PSA levels but focus more on the scans
 
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