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User
Posted 11 Jan 2025 at 16:00

My husband just got the diagnosis yesterday here in Austria so nothing has been decided yet of course and he is waiting on a PET PSMA scan before another consultation with the doctors in a few weeks.

They said that presuming nothing looks different after the PET PSMA scan, the two options are RP or radiotherapy and openly tended to RP given that he is in his 50s, while assuring him it is his decision. They said both are curative, no difference there and explained side effects that can happen. 

Atm he also tends towards RP but - and I know it is his decision - but I was a bit shocked when he asked if he could postpone it until the summer due to his job as a teacher. Normally the waiting time once the option is confirmed would be about 6 weeks. They said he should think about everything in peace until the next consultation anyway but waiting up to 6 months is considered ok because PCa is so slow moving. 

However, the school holidays are slightly more than 6 months away still and he had his first PSA test in August which was a 54 so I feel like it already took quite a while to finally get biopsied after retesting PSA (67 in November) and MRI (extensive PIRADS 5 lesions in both sides). 

His biopsy results were basically Gleason 7 (4+3), tumour on both sides of the prostate, perineural invasion on one side, cribriform growth, no extension beyond the prostate. I put it in the profile in slightly more detail.

I guess a 7 (4+3) is fairly good news but of course I am really nervous for him and I hate the idea of him postponing surgery should he choose it.  Is the fact that PSA is 67 also a reason to maybe not wait around? 


Of course we are still waiting for the PET PSMA anyway. I don't want to stress him either. But how would more experienced people here see waiting because of work as opposed to just getting it done?

And maybe some could also give me an idea of how much sick leave might be needed after RP - apparently it would be with robotics and laparascopic here. There is no problem at all with him getting sick leave, only the problem that he doesn't want to take it if possible. 

User
Posted 12 Jan 2025 at 04:02

Fragen,

I know you have heard from me before when this all started but wanted to share my opinion on waiting if your husband wants too.

Don’t worry about waiting until early summer for surgery if that is your decision. My biopsy was in February, officially told about my Gleason and diagnosis in late February and PET in March. I put my surgery off until mid August to enjoy summer with our daughter before she returned to college. Three days after she returned I had my surgery. My ONC said it was fine. I was Gleason 8. He said clinical studies had clearly established that a six month wait from diagnosis was fine as it usually took that long to get through the post Diagnose process of time to get appointments, the PET scans, awaiting results, genomic analysis and surgical and radiology consultation’s and finally getting scheduled for treatment. He said the studies showed no differences in outcomes waiting as long as six months versus someone starting treatment sooner. He did say he would not recommend any further delay. As for surgery recovery, a job that involves no physical labor involving any weight lifting if surgery has gone well he could probably be back to work in three weeks if at a desk. By the time my catheter came out in 11 days I was walking two miles and immediately upon the catheter coming out I was driving. Within three weeks of surgery I was driving a two hour drive one way to visit my daughter. Everyone’s recovery will be different. My surgery was robotic single port. I even had a blood clot that formed in my calf after surgery. 

User
Posted 16 Jan 2025 at 18:52

Hello Fragen,

my diagnosis was similar to the one of your hubby:

Age 55, Gleason 7b (4+3), cribrifom patterns, PNI, staging pT2c .... but my PSA was only 4 ng/ml.

Please forgive me, but the GS 7b @ PSA 67 w/ cribriform and PNI are by no standards "fairly good news" - it is a very severe diagnosis.
Based on my own experience, your husband should start treatment as soon as possible.

Waiting 7 months would not be an option for me because of:

- High PSA
- Cribriform Patterns (the most agrresive of the Gleason 4 growth patterns, very often linked to (also very unfriendly) intraductal cancer
- PNI: The neural pathways are a highway for the prostate cancer to spread out
- PSA dynamics: If both measurements come from the same lab, an increase from 54 to 67 in three months is quite a lot. Definately there is something going on here ...
- And remember: The result of the biopsy can be considered as a minimum diagnosis, often we get an "upgrade" after RPx

Whatever the first line treatment is, in my humble opinion it should start right away!

I whish you and your partner all the best!
Most likely you will still have many years together with a decent quality of living ....

Warmest regards,
Henrik

Edited by member 16 Jan 2025 at 20:31  | Reason: spelling, as alllwayhs ...

User
Posted 11 Jan 2025 at 18:54

Hi again Fragen.

Obviously everyone's recovery after robotic surgery is different but I believe returning to clerical type work is usually about 6 to 8 weeks.

There will probably be no problem in delaying surgery. I was Gleason 8 (3+5) later up graded to Gleason 9(4+5) and T3a (capsular breach) and ended up waiting over 5 months for surgery. This was during COVID restrictions and apparently delays like this were common. However I cannot understand why your husband would put the school timetable before his own?

Edited by member 11 Jan 2025 at 19:36  | Reason: Typo

User
Posted 11 Jan 2025 at 19:12

The amount of time off varies greatly from person to person. Age, fitness plus occupation all determine advised absence from work.

I would never put work before my own health.

 

User
Posted 11 Jan 2025 at 21:03
Teaching is pretty full on, you can't work from home and take your time over it. He will be lucky to get back to that intensity in two months. It is pretty major surgery, the fact that it is robotic with small incisions, tends to disguise that.

While prostate cancer is slow moving compared with some cancers (I lost my brother this last year, shockingly fast) your husband has a significantly high PSA level and you are right to be concerned about delaying treatment. If your husband wants to delay, it may be worth enquiring about hormone treatment (androgen deprivation therapy, testosterone reduction) in the meantime.

The scan may not necessarily show anything more than you already know, but 31st January gives you both some time to discuss options. Surgery tends to be the automatic recommendation for younger men (better recovery prospects, and more life ahead of them to suffer the delayed side effects of radiotherapy) but some patients experience worse side effects from surgery than they would get from radiotherapy particularly with the most up to date machines.

User
Posted 11 Jan 2025 at 22:48

F there are some unusual aspects to your husbands cancer. He has a moderate Gleason score of 7 but his psa is high at 67, he has perineural invasion and there are cribriform cells present. [The high psa might result from his having an enlarged prostate or a UTI but I assume they would have been ruled out by now]. You await the results of a PSMA PET scan and that might well play a big part in where things go from here, given that scan can pick up mets in places like lymph glands. It could be, that the decision between a prostatectomy and RT becomes clearer. Are you receiving advice from both a urologist and an oncologist? Systems vary I know and you might be advised by a team or something similar but specialists can favour their own approach with urologists leaning towards surgery and oncologists to RT, so it's valuable to be able to compare and contrast.

For now decision making can be on hold until you get the PSMA PET scan results and until you get those results it's probably unwise to decide whether to go for a prostatectomy or RT. Please keep us informed of your progress.

Jules

 

Edited by member 12 Jan 2025 at 04:50  | Reason: Not specified

User
Posted 12 Jan 2025 at 08:51

Hi I know exactly how you feel as I am a wife and my husband has had RP. He found his PSA following a routine blood test was 11.4 and a week later 9.2 in March 24. He had surgery May 24. We did have private medical insurance. Fortunately he did not want to delay the surgery.

Ultimately of course this is your husband’s decision. However given the results he has so far acquired I would be urging him not to delay whatever radical treatment option is most appropriate to his situation. I know you have said this is your preference. His job will still be there when he has recovered sufficiently to return.

User
Posted 12 Jan 2025 at 09:49

Thanks. He is now subject to regular PSA testing. He also had a large prostate which measured 85cc. He is a little older than your husband at 65 but recovered quickly from surgery. You are at that point in time of treading water which is not fun.

User
Posted 17 Jan 2025 at 08:32

Fragen

I am sure your medical team will advise you and your husband of the best course of action. Only they know what the findings  so far mean, specifically, in your husband’s circumstances.  The PSA is very high and would not be as a result of a very large prostate but could be inflammation combined with size of prostate or UTI. I really hope you get all the answers soon. Stay positive.

User
Posted 17 Jan 2025 at 09:12

Hello Fragen,
yes my RPx was on 17 June 2024.
I'm doing quite well, incontinence is solved - I used EMS (Electrical Muscle Stimulation) extensively.
You can search the German forum for a detailled report.

ED wise - It could be better, but a Vaccum Erection Device (VED) works quite well for us. Also a detailled report is available on the German forum.

Onwards and upwards!
Very best regards,

Henrik

 

User
Posted 18 Jan 2025 at 09:30
Hello Fragen, the German forum can be found here:

https://forum.prostatakrebs-bps.de/forum

Good luck!

User
Posted 19 Jan 2025 at 06:34

With any signs of type 4 cells I wouldn’t hang about too long. I got diagnosed sept 2019 (Gleason 6 (3+3)). My local team were fairly relaxed and said there was no urgency. I had a gut feeling and isn’t share this view. I engaged for a second opinion with a top leading professor who pioneers laparoscopic and robotic surgery. Had surgery end of November 2019 and histology came back Gleason 7 (4+3) and extremely close to breaking out of the prostate. 

I’d been tempted to wait too or go on AS but having seen quite a few do the same and end up T3 with post surgery histology. 

My surgeons words immediately after surgery were along the lines of..it was quite fortunate you acted when you did. 

Just be aware that post surgery it’s fairly common for the cancer to be upgraded ~44%

In terms of teaching etc. obviously everyone is different and you need to take it easy for 3 months post op but I was walking 2-3km, without issue, day 3 of surgery and driving after 2 weeks. 

With any cancer speed is of the essence in my view as faster it’s out the less time there is for METs to become a factor.

Btw I kept radiotherapy as a backup after surgery should the cancer return and I need salvage radiotherapy.

Edited by member 19 Jan 2025 at 06:38  | Reason: Not specified

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User
Posted 11 Jan 2025 at 18:54

Hi again Fragen.

Obviously everyone's recovery after robotic surgery is different but I believe returning to clerical type work is usually about 6 to 8 weeks.

There will probably be no problem in delaying surgery. I was Gleason 8 (3+5) later up graded to Gleason 9(4+5) and T3a (capsular breach) and ended up waiting over 5 months for surgery. This was during COVID restrictions and apparently delays like this were common. However I cannot understand why your husband would put the school timetable before his own?

Edited by member 11 Jan 2025 at 19:36  | Reason: Typo

User
Posted 11 Jan 2025 at 19:02
I think maybe it was just his initial reaction. He has time to think about what he wants to do anyway, next consultation is 31 January.
User
Posted 11 Jan 2025 at 19:12

The amount of time off varies greatly from person to person. Age, fitness plus occupation all determine advised absence from work.

I would never put work before my own health.

 

User
Posted 11 Jan 2025 at 19:47

I guess he won't really ... it was just his initial reaction. I certainly don't want him to!

User
Posted 11 Jan 2025 at 21:03
Teaching is pretty full on, you can't work from home and take your time over it. He will be lucky to get back to that intensity in two months. It is pretty major surgery, the fact that it is robotic with small incisions, tends to disguise that.

While prostate cancer is slow moving compared with some cancers (I lost my brother this last year, shockingly fast) your husband has a significantly high PSA level and you are right to be concerned about delaying treatment. If your husband wants to delay, it may be worth enquiring about hormone treatment (androgen deprivation therapy, testosterone reduction) in the meantime.

The scan may not necessarily show anything more than you already know, but 31st January gives you both some time to discuss options. Surgery tends to be the automatic recommendation for younger men (better recovery prospects, and more life ahead of them to suffer the delayed side effects of radiotherapy) but some patients experience worse side effects from surgery than they would get from radiotherapy particularly with the most up to date machines.

User
Posted 11 Jan 2025 at 21:44

Yes, it is not an easy decision: RP v radiotherapy. 

 

User
Posted 11 Jan 2025 at 22:48

F there are some unusual aspects to your husbands cancer. He has a moderate Gleason score of 7 but his psa is high at 67, he has perineural invasion and there are cribriform cells present. [The high psa might result from his having an enlarged prostate or a UTI but I assume they would have been ruled out by now]. You await the results of a PSMA PET scan and that might well play a big part in where things go from here, given that scan can pick up mets in places like lymph glands. It could be, that the decision between a prostatectomy and RT becomes clearer. Are you receiving advice from both a urologist and an oncologist? Systems vary I know and you might be advised by a team or something similar but specialists can favour their own approach with urologists leaning towards surgery and oncologists to RT, so it's valuable to be able to compare and contrast.

For now decision making can be on hold until you get the PSMA PET scan results and until you get those results it's probably unwise to decide whether to go for a prostatectomy or RT. Please keep us informed of your progress.

Jules

 

Edited by member 12 Jan 2025 at 04:50  | Reason: Not specified

User
Posted 12 Jan 2025 at 04:02

Fragen,

I know you have heard from me before when this all started but wanted to share my opinion on waiting if your husband wants too.

Don’t worry about waiting until early summer for surgery if that is your decision. My biopsy was in February, officially told about my Gleason and diagnosis in late February and PET in March. I put my surgery off until mid August to enjoy summer with our daughter before she returned to college. Three days after she returned I had my surgery. My ONC said it was fine. I was Gleason 8. He said clinical studies had clearly established that a six month wait from diagnosis was fine as it usually took that long to get through the post Diagnose process of time to get appointments, the PET scans, awaiting results, genomic analysis and surgical and radiology consultation’s and finally getting scheduled for treatment. He said the studies showed no differences in outcomes waiting as long as six months versus someone starting treatment sooner. He did say he would not recommend any further delay. As for surgery recovery, a job that involves no physical labor involving any weight lifting if surgery has gone well he could probably be back to work in three weeks if at a desk. By the time my catheter came out in 11 days I was walking two miles and immediately upon the catheter coming out I was driving. Within three weeks of surgery I was driving a two hour drive one way to visit my daughter. Everyone’s recovery will be different. My surgery was robotic single port. I even had a blood clot that formed in my calf after surgery. 

User
Posted 12 Jan 2025 at 08:14

Thanks so much for the reassuring words. 

I know it is his decision, not mine but it makes me nervous that his test with the first PSA result of 54 (his prostate IS enlarged, i don't really understand the measurements but it is very big) was in August so waiting till the school holidays in July would be nearly a year out from that. 
And even the biopsy was early December so it would be 7 months from that. 

But of course there is plenty of time to decide, we are waiting for the PET PSMA and then have a consult 31 January. 

As for recovery time, presuming he has the OP and does not wait until the summer holidays, I guess he will just see when he is ready to go back to teaching. No doubt that depends on lots of things. 

 

Sorry to hear about the blood clot but it seems you must have made a good recovery as you were so active soon afterwards. Hope everything continues to go well and great that you can get out to see your daughter. Our oldest is also at college but she lives nearby. 

User
Posted 12 Jan 2025 at 08:51

Hi I know exactly how you feel as I am a wife and my husband has had RP. He found his PSA following a routine blood test was 11.4 and a week later 9.2 in March 24. He had surgery May 24. We did have private medical insurance. Fortunately he did not want to delay the surgery.

Ultimately of course this is your husband’s decision. However given the results he has so far acquired I would be urging him not to delay whatever radical treatment option is most appropriate to his situation. I know you have said this is your preference. His job will still be there when he has recovered sufficiently to return.

User
Posted 12 Jan 2025 at 08:53

Yes, he is lucky to have no job insecurity at all. That would be awful but is absolutely not the case. 

User
Posted 12 Jan 2025 at 08:54

I hope your husband is doing fine now. 

User
Posted 12 Jan 2025 at 09:03

Originally Posted by: Online Community Member
I know it is his decision, not mine but it makes me nervous that his test with the first PSA result of 54 (his prostate IS enlarged, i don't really understand the measurements but it is very big)

As far as I'm aware, a very big prostate is not a big problem. In fact it could account for his higher PSA.

User
Posted 12 Jan 2025 at 09:14

Originally Posted by: Online Community Member
]

As far as I'm aware, a very big prostate is not a big problem. In fact it could account for his higher PSA.

 

I know. That is why i mentioned it. Tho psa is now 67, dk how much big prostate accounts for.

Edited by member 12 Jan 2025 at 13:27  | Reason: typos

User
Posted 12 Jan 2025 at 09:49

Thanks. He is now subject to regular PSA testing. He also had a large prostate which measured 85cc. He is a little older than your husband at 65 but recovered quickly from surgery. You are at that point in time of treading water which is not fun.

User
Posted 12 Jan 2025 at 19:28

Thank you for your kind words. 

User
Posted 16 Jan 2025 at 18:52

Hello Fragen,

my diagnosis was similar to the one of your hubby:

Age 55, Gleason 7b (4+3), cribrifom patterns, PNI, staging pT2c .... but my PSA was only 4 ng/ml.

Please forgive me, but the GS 7b @ PSA 67 w/ cribriform and PNI are by no standards "fairly good news" - it is a very severe diagnosis.
Based on my own experience, your husband should start treatment as soon as possible.

Waiting 7 months would not be an option for me because of:

- High PSA
- Cribriform Patterns (the most agrresive of the Gleason 4 growth patterns, very often linked to (also very unfriendly) intraductal cancer
- PNI: The neural pathways are a highway for the prostate cancer to spread out
- PSA dynamics: If both measurements come from the same lab, an increase from 54 to 67 in three months is quite a lot. Definately there is something going on here ...
- And remember: The result of the biopsy can be considered as a minimum diagnosis, often we get an "upgrade" after RPx

Whatever the first line treatment is, in my humble opinion it should start right away!

I whish you and your partner all the best!
Most likely you will still have many years together with a decent quality of living ....

Warmest regards,
Henrik

Edited by member 16 Jan 2025 at 20:31  | Reason: spelling, as alllwayhs ...

User
Posted 17 Jan 2025 at 05:19
Thank you so much Henrik. I hope you are doing ok? I guess you must have had the RP fairly recently?

Yes, these are all things that make me very nervous.

He has his PET PSMA today and we have the apt to talk about everything on 31 January.

User
Posted 17 Jan 2025 at 08:32

Fragen

I am sure your medical team will advise you and your husband of the best course of action. Only they know what the findings  so far mean, specifically, in your husband’s circumstances.  The PSA is very high and would not be as a result of a very large prostate but could be inflammation combined with size of prostate or UTI. I really hope you get all the answers soon. Stay positive.

User
Posted 17 Jan 2025 at 09:12

Hello Fragen,
yes my RPx was on 17 June 2024.
I'm doing quite well, incontinence is solved - I used EMS (Electrical Muscle Stimulation) extensively.
You can search the German forum for a detailled report.

ED wise - It could be better, but a Vaccum Erection Device (VED) works quite well for us. Also a detailled report is available on the German forum.

Onwards and upwards!
Very best regards,

Henrik

 

User
Posted 18 Jan 2025 at 01:02
Glad to hear it is going quite well. All the very best for a continued recovery!

Which German forum?

I guess the medical team can tell us the most but so far we only had one meeting and getting the news - even though we had been expecting it since August - was a lot to take in.

I did ask what some of the terms used meant, largely because I had already read about them here in this forum.

He had his scan today and I suppose we should prepare for the meeting on January 31, ask all our questions then.

User
Posted 18 Jan 2025 at 09:30
Hello Fragen, the German forum can be found here:

https://forum.prostatakrebs-bps.de/forum

Good luck!

User
Posted 19 Jan 2025 at 06:34

With any signs of type 4 cells I wouldn’t hang about too long. I got diagnosed sept 2019 (Gleason 6 (3+3)). My local team were fairly relaxed and said there was no urgency. I had a gut feeling and isn’t share this view. I engaged for a second opinion with a top leading professor who pioneers laparoscopic and robotic surgery. Had surgery end of November 2019 and histology came back Gleason 7 (4+3) and extremely close to breaking out of the prostate. 

I’d been tempted to wait too or go on AS but having seen quite a few do the same and end up T3 with post surgery histology. 

My surgeons words immediately after surgery were along the lines of..it was quite fortunate you acted when you did. 

Just be aware that post surgery it’s fairly common for the cancer to be upgraded ~44%

In terms of teaching etc. obviously everyone is different and you need to take it easy for 3 months post op but I was walking 2-3km, without issue, day 3 of surgery and driving after 2 weeks. 

With any cancer speed is of the essence in my view as faster it’s out the less time there is for METs to become a factor.

Btw I kept radiotherapy as a backup after surgery should the cancer return and I need salvage radiotherapy.

Edited by member 19 Jan 2025 at 06:38  | Reason: Not specified

 
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