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After RARP Gleason 9 (4+5) and urethra infiltration

User
Posted 28 May 2025 at 22:51

Hi, I am just feeling really worried. My husband went for his first post op consultation today, just over 4 weeks post RARP. Incontinence still quite heavy but starting to improve and doing well all around. 

I just read through the histology report and other report.

Based on biopsy and MRI he was classified as Gleason 7 (4+3) with perineural invasion on both sides but no extra prostatic extension; however, now it says Gleason 9 (4+5), urethral infiltration, . glands and seminal vesicles clear, cribriform growth, size of tumour was 45x40x36mm, pT3a, N0, Mx, R1.

They gave him another appointment in about a month and he has to test PSA before that (it was 67 before the op). It mentions that adjuvant vs early salvage radiotherapy was discussed. He says that said let's just and wait and see what PSA is. Which I understand of course. 

Husband is calm and confident. But this seems much more worrying to me with 9 instead of 7 and "urethral infiltration" and R1. 
Glad the lymph glands and seminal vesicles are clear of course.

I read somewhere that infiltration of the urethra was not that common. Is this true does anyone know? Did anyone here experience that? (i suppose so, as there are so many diverse stories). 

I hope I don't make others feel worse but I am really worried about this. I will take time off work to go to the next appointment with him. I just didn't expect anything worrying at this. 

He is hoping to get back to work soon, the heavy incontinence has been a problem. He has been working diligently from home, but he is a teacher so wants to get back into the school. 

How can I help him?

 

User
Posted 29 May 2025 at 06:57

Hi again Fragen.

I'm not medically trained. My prostatectomy pathology was T3a, with extraprostatic extension and Gleason 9(4+5), but fortunately had negative margins. I believe that your husband's post op report is similar to mine but unfortunately shows R1, which in his case is a positive surgical margin in the urethral area.

As for his post op histology Gleason being raised, this is quite common. Mine went from Gleason 8(3+5) to 9(4+5). Apparently having HT prior to surgery can also result in a higher Gleason score because it alters the look of the cells.

I've read a lot of peer reviewed research on what factors affect the chances of needing follow up treatment.

This research

https://pmc.ncbi.nlm.nih.gov/articles/PMC8749855/

includes:

According to the latest guidelines of the European Society of Urologists, patients that show two of the three high-grade features (positive margins, pT3 stage and grade group 4 or 5) are candidates for adjuvant radiation therapy. 

Your husband, unfortunately, fits all 3 features which is why they'll be considering further treatment. His first post op PSA will also be significant to their decision. I fitted two of the features but my first post op PSA was undetectable so I assume that why it was decided that I needed no further treatment.

I can't find any any data or research on how common 'urethral infiltration' is or whether or not it is worse or better than any other positive margin.

If it's any comfort to you, I'm now over two years post op and my PSA is still undetectable.

From the outset, I've been following your story. All through it, your husband has had a tremendous work ethic, I hope he doesn't overdo things. Perhaps focusing on his job is helping him.

I wish you both luck going forward and hope that his next PSA results are favourable.

I must emphasis that I am not medical qualified but there are others, far more knowledgeable than me on here, who will put me right if I'm wrong.

 

Edited by member 31 May 2025 at 14:21  | Reason: Additional text.

User
Posted 29 May 2025 at 08:36

Hi I am so sorry to hear that your post op pathology report has brought such unwanted news.

I know you do not live in the UK and I recall your husband was wanting to delay his treatment because of his work commitments. I think in the UK your husband would have started treatment earlier because of his high PSA. High PSA can be as a consequence of spread which thankfully  appears not to be the case for your husband and sometimes, but certainly not always as the opposite can be true, indicative of more aggressive cancers. It would appear that your husband’s high PSA is a consequence of the aggressive nature of his cancer and the localised spread to the uretha lining.

The positive news is that your husband has had his surgery and his first post op PSA test is likely to inform what will happen next. If his PSA is undetectable they may adopt  a wait and see approach. I think you should ask what is the likelihood of reoccurrence give his pre op PSA, Gleason score, positive margin and some localised spread. It is likely that will mean he is at high risk of BCR but that is not a given. If his PSA is not undetectable I expect they will want to start immediate treatment which is likely to be hormone therapy and radiotherapy. It may be worthwhile looking at the adjuvant therapy offered where you live.

I admire your husband’s work ethic and his desire to get back to work and no doubt work assists his MH but I suggest he takes his time as he starts his recovery.

i wish you both all the very best for the future.

 

User
Posted 30 May 2025 at 14:38

Fragan, I was diagnosed March 2024 with locally advanced adenocarcinoma and straightaway started Hormone Therapy. I had 20 fractions of standard high dose radiotherapy June to July. Since then PSA has been undetectable. At a meeting on 28 March the oncologist agreed that I could stop the HT. I stopped taking the Abiraterone and the 5th injection of Leuprorelin Acetate (Prostap) in March is hopefully the last. Radiotherapy is much like an X-Ray, painless. Depending on what is being targeted will dictate side effects. For me the effect on my bowel and bladder until rents have been challenging. There is ample information to be found on the side effects of HT. Although as far as I am concerned that one in March was my last I was told the side effects will continue another 6 to 8 months. I took the view that I had really no choice to take the HT and RT but I am not prepared to keep putting myself through the side effects for another 2 years which. Is what I was told gives the best chance of prolonging my life. The oncologist was satisfied the cancer’s gone -his words which is all due to RT so don’t shy away if it’s recommended.
Good luck with whatever you have done to you.

John from Scotland

User
Posted 27 Jun 2025 at 14:07

Hi Fragen,

Ideally after a prostatectomy your husband's PSA should be undetectable. Unfortunately it appears his isn't. It's low though. I believe that over here, salvage treatment is not usually considered until 0.2. Let's hope his PSA remains below this level and further treatment is not required.

I wish you both the best of luck .👍

User
Posted 30 Jun 2025 at 10:39

All the best for you too!

We are meeting the drs on Wednesday. 

User
Posted 06 Jul 2025 at 05:09
August re test seems reasonable. If it is still >= 0.1 don't let the urologist palm you off and insist on seeing an oncologist.
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User
Posted 29 May 2025 at 06:57

Hi again Fragen.

I'm not medically trained. My prostatectomy pathology was T3a, with extraprostatic extension and Gleason 9(4+5), but fortunately had negative margins. I believe that your husband's post op report is similar to mine but unfortunately shows R1, which in his case is a positive surgical margin in the urethral area.

As for his post op histology Gleason being raised, this is quite common. Mine went from Gleason 8(3+5) to 9(4+5). Apparently having HT prior to surgery can also result in a higher Gleason score because it alters the look of the cells.

I've read a lot of peer reviewed research on what factors affect the chances of needing follow up treatment.

This research

https://pmc.ncbi.nlm.nih.gov/articles/PMC8749855/

includes:

According to the latest guidelines of the European Society of Urologists, patients that show two of the three high-grade features (positive margins, pT3 stage and grade group 4 or 5) are candidates for adjuvant radiation therapy. 

Your husband, unfortunately, fits all 3 features which is why they'll be considering further treatment. His first post op PSA will also be significant to their decision. I fitted two of the features but my first post op PSA was undetectable so I assume that why it was decided that I needed no further treatment.

I can't find any any data or research on how common 'urethral infiltration' is or whether or not it is worse or better than any other positive margin.

If it's any comfort to you, I'm now over two years post op and my PSA is still undetectable.

From the outset, I've been following your story. All through it, your husband has had a tremendous work ethic, I hope he doesn't overdo things. Perhaps focusing on his job is helping him.

I wish you both luck going forward and hope that his next PSA results are favourable.

I must emphasis that I am not medical qualified but there are others, far more knowledgeable than me on here, who will put me right if I'm wrong.

 

Edited by member 31 May 2025 at 14:21  | Reason: Additional text.

User
Posted 29 May 2025 at 07:26

Thank you! It is very comforting to read you are over two years post op and still PSA undetectable. I hope it stays that way! It does sound like very similar results. 

User
Posted 29 May 2025 at 08:36

Hi I am so sorry to hear that your post op pathology report has brought such unwanted news.

I know you do not live in the UK and I recall your husband was wanting to delay his treatment because of his work commitments. I think in the UK your husband would have started treatment earlier because of his high PSA. High PSA can be as a consequence of spread which thankfully  appears not to be the case for your husband and sometimes, but certainly not always as the opposite can be true, indicative of more aggressive cancers. It would appear that your husband’s high PSA is a consequence of the aggressive nature of his cancer and the localised spread to the uretha lining.

The positive news is that your husband has had his surgery and his first post op PSA test is likely to inform what will happen next. If his PSA is undetectable they may adopt  a wait and see approach. I think you should ask what is the likelihood of reoccurrence give his pre op PSA, Gleason score, positive margin and some localised spread. It is likely that will mean he is at high risk of BCR but that is not a given. If his PSA is not undetectable I expect they will want to start immediate treatment which is likely to be hormone therapy and radiotherapy. It may be worthwhile looking at the adjuvant therapy offered where you live.

I admire your husband’s work ethic and his desire to get back to work and no doubt work assists his MH but I suggest he takes his time as he starts his recovery.

i wish you both all the very best for the future.

 

User
Posted 30 May 2025 at 09:14
Yes, we will ask about likelihood of recurrence at June 25 apt and he will already have his PSA result then. Obv hoping for undetectable but will still want to discuss everything.

For those who perhaps have had the kind of radiation therapy or hormone therapy they might offer, what should we expect in terms of side-effects? How did you find it?

As regards work, he plans to go into school from Monday on but if necessary he will break it off and go home. Luckily the summer holidays begin at the end of June here so then he has two full months off anyway. Which we are very happy about.

I suppose we will wait to see what has to be decided about adjuvant therapy.

User
Posted 30 May 2025 at 14:38

Fragan, I was diagnosed March 2024 with locally advanced adenocarcinoma and straightaway started Hormone Therapy. I had 20 fractions of standard high dose radiotherapy June to July. Since then PSA has been undetectable. At a meeting on 28 March the oncologist agreed that I could stop the HT. I stopped taking the Abiraterone and the 5th injection of Leuprorelin Acetate (Prostap) in March is hopefully the last. Radiotherapy is much like an X-Ray, painless. Depending on what is being targeted will dictate side effects. For me the effect on my bowel and bladder until rents have been challenging. There is ample information to be found on the side effects of HT. Although as far as I am concerned that one in March was my last I was told the side effects will continue another 6 to 8 months. I took the view that I had really no choice to take the HT and RT but I am not prepared to keep putting myself through the side effects for another 2 years which. Is what I was told gives the best chance of prolonging my life. The oncologist was satisfied the cancer’s gone -his words which is all due to RT so don’t shy away if it’s recommended.
Good luck with whatever you have done to you.

John from Scotland

User
Posted 27 Jun 2025 at 13:00

So he did his first PSA test today, about 2 months post rarp and it was 0.1 ng/ml. 

That is good news, right?

We will be seeing the doctors next week to discuss everything. 

User
Posted 27 Jun 2025 at 14:07

Hi Fragen,

Ideally after a prostatectomy your husband's PSA should be undetectable. Unfortunately it appears his isn't. It's low though. I believe that over here, salvage treatment is not usually considered until 0.2. Let's hope his PSA remains below this level and further treatment is not required.

I wish you both the best of luck .👍

User
Posted 30 Jun 2025 at 10:04

Originally Posted by: Online Community Member

So he did his first PSA test today, about 2 months post rarp and it was 0.1 ng/ml. 

That is good news, right?

We will be seeing the doctors next week to discuss everything. 

Hi Fragen,

The lab that does my PSA tests only tests down to 0.1 ng/ml. The important part of the test result is if there is a < symbol in front of the figure. This would indicate that the PSA level is undetectable as far as that lab is concerned.

Dave

User
Posted 30 Jun 2025 at 10:15

No, there is no symbol in front of it. Just 0.1. 

Hope that is still good. 

User
Posted 30 Jun 2025 at 10:34

As Adrian pointed out, at least it is below the normal level for further treatment. Long may it stay that low.

Just had my latest PSA test this morning, only 2nd since surgery so a bit nervous and stressed now waiting for the results.

Dave

User
Posted 30 Jun 2025 at 10:39

All the best for you too!

We are meeting the drs on Wednesday. 

User
Posted 30 Jun 2025 at 15:18
0.1 post prostatectomy is not good and makes salvage radio therapy highly likely to be offered. Not sure if you have had a PSMA scan? But this would be a good idea to make sure they treat all remaining cancer effectively.

When the prostate is removed they take a chunk of urethra with it I suspect that may be the bit that was infiltrated.

User
Posted 05 Jul 2025 at 13:10

We saw a doctor on Wednesday and he said 0.1 is fine because it has fallen so much (was 67). He says as long as it stays so low, my husband can consider himself cured. 

He should test again in mid August and go to hospital again with that. 

The incontinence is improving. Down to to 3-4 pads a day. 

I am glad he has to test again so soon. 

User
Posted 05 Jul 2025 at 14:56

Fragen, my consultant would organise a retest for any post op result over 0.09. My urologist said he had many patients with a PSA that stayed at 0.1.

I am inclined to agree with the comments from Franci. If you look at my profile you will see that even low PSA post op results do not guarantee that you are out of the woods.

Thanks Chris 

User
Posted 06 Jul 2025 at 05:09
August re test seems reasonable. If it is still >= 0.1 don't let the urologist palm you off and insist on seeing an oncologist.
 
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