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Worried about PSA rise post RARP

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User
Posted 18 Sep 2025 at 18:22

 

My husband had his RARP on 30 April this year. 

Histology report was Gleason 9 (4+5), PNI, urethral infiltration so EPE, however glands and seminal vesicles clear, there was cribriform growth, size of tumour was 45x40x36mm, pT3a, N0, Mx, R1.
His PSA pre OP was 67. 

Late June PSA post RARP was 0.1, in August it was 0.17, now in September 0.239. 
Husband was given appointment in August for radiooncology department on 30 September to talk about SRT. 
Given the just collected PSA result of 0.239, his urologist has also given him a referral, which refers to "delayed oncological aftercare check" - does this mean things should have gone faster?

Is it a bad sign that there is bcr so soon after RARP?

Edited by member 18 Sep 2025 at 22:53  | Reason: typo

User
Posted 19 Sep 2025 at 00:21

Hi Fragen,

"delayed oncological aftercare check" does seem to imply that somewhere along the line after his surgery there has been an unnecessary delay. However, I believe that  that generally salvage treatment is usually only considered when there are three consecutive PSA rises or it reaches 0.2. I can't see where there has been an erroneous delay. Unless they are saying the positive margin/urethral infiltrstion should have been treated earlier?

It's been mentioned before on here that if   post op PSA levels have never been undetectable, any rises, or levels above 0.2 aren't classed as BCR but as prostatectomy failure. Your husband first post op PSA was 0.1 was that classed as being undetectable?

It always best after RARP to have an undetectable PSA level. Your husband's high Gleason score, T3a staging, and positive margin are all factors which increased the risk of BCR/the likelihood of needing salvage treatment.

Good luck with any further treatment that they deem necessary. 👍

Edited by member 19 Sep 2025 at 00:34  | Reason: Typo

User
Posted 19 Sep 2025 at 00:34

It was not classed as undetectable, at least not expressly. He got that result from a lab, went to see doctor and the doctor apparently said that is ok, get another PSA test in 6 weeks. When that was 0.17 (August) the doctor apparently just said he needed radiation and gave him the apt for 30 September to see that department. 

Since then he went to his urologist, i think hoping his PSA might have decreased and thus negate need for treatment. Did a new test there last week and picked up the result today, where this "delay" was mentioned. He did not see the urologist though. 

I guess there was no real delay because after the 0.1, they tested again pretty quickly, which sounds like it makes sense. 

The urologist has written bcr as a diagnosis in the letter, but it does seem like it just was never gone. 

Another urologist I spoke to privately had thought he would probably be offered adjuvant radiation right away given his positive margin, so maybe his urologist had a similar view. However, i think he sees oncologists at the hospital. I will be able to join him for the next apt. 

User
Posted 19 Sep 2025 at 00:55

Hi again.

Although you are their mum, and mums always know best, I would let him make the decision. If he starts worrying about the children worrying about their dad, it may impede his treatment and recovery.

In the grand scheme of things, he's in a decent position and should be okay.

My kids were in their 30's when I was diagnosed. I told them. My grandkids were more the age of your younger children, I didn't tell them.

I feel sure that once you get over the setback of needing further treatment you'll all be fine. 👍

Edited by member 19 Sep 2025 at 01:20  | Reason: Typo

User
Posted 20 Sep 2025 at 15:50

Hi Fragen, 

I am been following your progress having become a member at more or less the same time and you’ve certainly had a very tough time, especially so not having a period of respite following RALP as your husband recovers. I’m very much scared of BCR being similarly T3a. It almost feels harder to deal with than the original diagnosis. I’m very wobbly following my second post RALP PSA indicating a “change” albeit at a very low level. It’s certainly upped my anxiety level so my heart certainly goes out to you.

I’m not a medical person, just an avid reader of prostate cancer information since diagnosis, but from your profile it looks like your clinicians already had some thoughts of the need for RT in your husband’s situation. Perhaps, they always felt that a three pronged approach of RALP, RT and ADT would ultimately give you a curative outcome?? I’ve also seen it mentioned that reducing the tumour size or removing the “mother ship” leads to better long term outcomes. 

I certainly wish you well in your continued journey/recovery. I will be following your progress accordingly.

best wishes

Stephen  

 

User
Posted 03 Oct 2025 at 08:36

Hi,

I had a spacer, it was a similar experience to the biopsy, though over quicker. It's done before the planning stage so they can see it on the scans and plan for it. 

No way of knowing what difference it made (I had three weeks of EBRT and then HDR Brachytherapy) however, I don't feel I've suffered any long term side effects bowl wise so far. I'm 10 months post radiotherapy. I didn't change what I ate during RT, though did avoid spicy food during the week days. I would say side effects kicked in towards the end and carried on for a few weeks after RT finished. Namely, I was up in the night for extra wee's and there was some clear mucus from back passage, now both gone

We have two boys 12 and 15, we chose to tell them and they were of course worried at first. We told them to ask any questions. We wrote all the RT session and HT injection dates on our kitchen blackboard so they could see when things were happening, and also cross them off

I did have a chat about treatment options with our youngest on the way to his footy training when he asked. I said I could have surgery or radiotherapy (i didn't tell him absolutely everything involved) he said, so if you have surgery you have to be off work for something like 4 weeks, take pain killers and have scars and not do running the line at my football, or you could have radiotherapy and you can carry on doing everything all the way through, why would you pick surgery?

Kids logic is brilliant ☺️

 

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User
Posted 19 Sep 2025 at 00:21

Hi Fragen,

"delayed oncological aftercare check" does seem to imply that somewhere along the line after his surgery there has been an unnecessary delay. However, I believe that  that generally salvage treatment is usually only considered when there are three consecutive PSA rises or it reaches 0.2. I can't see where there has been an erroneous delay. Unless they are saying the positive margin/urethral infiltrstion should have been treated earlier?

It's been mentioned before on here that if   post op PSA levels have never been undetectable, any rises, or levels above 0.2 aren't classed as BCR but as prostatectomy failure. Your husband first post op PSA was 0.1 was that classed as being undetectable?

It always best after RARP to have an undetectable PSA level. Your husband's high Gleason score, T3a staging, and positive margin are all factors which increased the risk of BCR/the likelihood of needing salvage treatment.

Good luck with any further treatment that they deem necessary. 👍

Edited by member 19 Sep 2025 at 00:34  | Reason: Typo

User
Posted 19 Sep 2025 at 00:34

It was not classed as undetectable, at least not expressly. He got that result from a lab, went to see doctor and the doctor apparently said that is ok, get another PSA test in 6 weeks. When that was 0.17 (August) the doctor apparently just said he needed radiation and gave him the apt for 30 September to see that department. 

Since then he went to his urologist, i think hoping his PSA might have decreased and thus negate need for treatment. Did a new test there last week and picked up the result today, where this "delay" was mentioned. He did not see the urologist though. 

I guess there was no real delay because after the 0.1, they tested again pretty quickly, which sounds like it makes sense. 

The urologist has written bcr as a diagnosis in the letter, but it does seem like it just was never gone. 

Another urologist I spoke to privately had thought he would probably be offered adjuvant radiation right away given his positive margin, so maybe his urologist had a similar view. However, i think he sees oncologists at the hospital. I will be able to join him for the next apt. 

User
Posted 19 Sep 2025 at 00:40

Also, did you tell your children about this sort of thing as it happened?

My instincts would be to tell them because to be completely honest, I am worried and I think they will sense something. He does not want to tell them anything. Of course it is far more his decision than mine as it concerns him. 

The children still living at home are 9yo, 13yo and 17yo.

I think he might even want to tell our oldest (20yo) on the other hand. 

User
Posted 19 Sep 2025 at 00:55

Hi again.

Although you are their mum, and mums always know best, I would let him make the decision. If he starts worrying about the children worrying about their dad, it may impede his treatment and recovery.

In the grand scheme of things, he's in a decent position and should be okay.

My kids were in their 30's when I was diagnosed. I told them. My grandkids were more the age of your younger children, I didn't tell them.

I feel sure that once you get over the setback of needing further treatment you'll all be fine. 👍

Edited by member 19 Sep 2025 at 01:20  | Reason: Typo

User
Posted 20 Sep 2025 at 15:50

Hi Fragen, 

I am been following your progress having become a member at more or less the same time and you’ve certainly had a very tough time, especially so not having a period of respite following RALP as your husband recovers. I’m very much scared of BCR being similarly T3a. It almost feels harder to deal with than the original diagnosis. I’m very wobbly following my second post RALP PSA indicating a “change” albeit at a very low level. It’s certainly upped my anxiety level so my heart certainly goes out to you.

I’m not a medical person, just an avid reader of prostate cancer information since diagnosis, but from your profile it looks like your clinicians already had some thoughts of the need for RT in your husband’s situation. Perhaps, they always felt that a three pronged approach of RALP, RT and ADT would ultimately give you a curative outcome?? I’ve also seen it mentioned that reducing the tumour size or removing the “mother ship” leads to better long term outcomes. 

I certainly wish you well in your continued journey/recovery. I will be following your progress accordingly.

best wishes

Stephen  

 

User
Posted 20 Sep 2025 at 16:17
Hi Fragen, I am similar to your husband. RALP in Dec 24 PSA - Jan .02, April .05, mid May .08 July .11 and end of August .13. I spoke to the CNS and she said they will do nothing until it reaches .2 and then will probably just put me on hormone therapy, I mentioned radiotherapy and she said they will wait and see if the PSA comes down first. I was first diagnosed with T2 Gleason 6 contained but it turned out post op to be T3b Gleason 4+3 with SV involvement. Not sure if I am still on a curative pathway or not.

I don’t think theirs is a delay, it is just how the different trusts/hospitals differentiate between treatment and the NHS guidelines, In my case the guidelines state further treatment at .2 or three consecutive rises, all the contact I have had say they won’t do anything until it reaches .2, also the guidelines state further lines state with a doubling time of less than three months it should be Chemo, followed by radiation and hormones if necessary, where as the CNS said they will just put me strait on hormones with no other treatment when I reach the “action” threshold as she put it. Go figure!

Good luck with the treatment.

User
Posted 20 Sep 2025 at 16:27
Hi Fragen, I am similar to your husband. RALP in Dec 24 PSA - Jan .02, April .05, mid May .08 July .11 and end of August .13. I spoke to the CNS and she said they will do nothing until it reaches .2 and then will probably just put me on hormone therapy, I mentioned radiotherapy and she said they will wait and see if the PSA comes down first. I was first diagnosed with T2 Gleason 6 contained but it turned out post op to be T3b Gleason 4+3 with SV involvement. Not sure if I am still on a curative pathway or not.

I don’t think theirs is a delay, it is just how the different trusts/hospitals differentiate between treatment and the NHS guidelines, In my case the guidelines state further treatment at .2 or three consecutive rises, all the contact I have had say they won’t do anything until it reaches .2, also the guidelines state further lines state with a doubling time of less than three months it should be Chemo, followed by radiation and hormones if necessary, where as the CNS said they will just put me strait on hormones with no other treatment when I reach the “action” threshold as she put it. Go figure!

Good luck with the treatment.

User
Posted 20 Sep 2025 at 16:51
Hi !! Not blowing my own bugle but I suggest you read my profile before making hasty decisions. Especially around SRT. And thankfully I’m still here 10 years on from the worst post-op psa my hospital had ever had. I’ve done it my own way based on maintaining a good QOL and in my case it’s done me no harm. Sometimes the ‘ throwing the kitchen sink ‘ approach isn’t that helpful. I wish you well on your journey 🙏
User
Posted 20 Sep 2025 at 21:08

@Golfnut2: Thank you so much for your kind words! I really hope everything goes as well as possible for you too! 
Yes, I felt a bit disappointed that the PSA was an issue right away after the op. I kind of thought at least at first everything would be done for now. 

Edited by member 20 Sep 2025 at 21:11  | Reason: meant to quote

User
Posted 20 Sep 2025 at 21:13

Originally Posted by: Online Community Member
Hi Fragen, I am similar to your husband. RALP in Dec 24 PSA - Jan .02, April .05, mid May .08 July .11 and end of August .13. I spoke to the CNS and she said they will do nothing until it reaches .2 and then will probably just put me on hormone therapy, I mentioned radiotherapy and she said they will wait and see if the PSA comes down first. I was first diagnosed with T2 Gleason 6 contained but it turned out post op to be T3b Gleason 4+3 with SV involvement. Not sure if I am still on a curative pathway or not.
I don’t think theirs is a delay, it is just how the different trusts/hospitals differentiate between treatment and the NHS guidelines, In my case the guidelines state further treatment at .2 or three consecutive rises, all the contact I have had say they won’t do anything until it reaches .2, also the guidelines state further lines state with a doubling time of less than three months it should be Chemo, followed by radiation and hormones if necessary, where as the CNS said they will just put me strait on hormones with no other treatment when I reach the “action” threshold as she put it. Go figure!
Good luck with the treatment.

 

Thank you! And to you too! I will take time off work and go with him to next apt as i guess we can ask more questions when we are together. I certainly hope you are still on a curative pathway. :hug:

Edited by member 20 Sep 2025 at 21:16  | Reason: Not specified

User
Posted 20 Sep 2025 at 21:30

Originally Posted by: Online Community Member
Hi !! Not blowing my own bugle but I suggest you read my profile before making hasty decisions. Especially around SRT. And thankfully I’m still here 10 years on from the worst post-op psa my hospital had ever had. I’ve done it my own way based on maintaining a good QOL and in my case it’s done me no harm. Sometimes the ‘ throwing the kitchen sink ‘ approach isn’t that helpful. I wish you well on your journey 🙏

 

Quite a read! Your post-op PSA was much worse too and then all the other developments. I am v relieved it seems you are quite stable and healthy. All the best going forward. 

Tbh we were sort of under the impression the side effects with SRT were normally not that bad. But I guess a bit afraid to research it extensively.

My husband still uses a number of pads a day due to urinary incontinence. I did read that can be an issue with SRT too. 

You mention you have 3 children, did you tell them much? 

User
Posted 02 Oct 2025 at 09:45

We had a meeting with the radiooncology team and he should start radiation next week, 4 weeks, 20 sessions. They can time it to be in the afternoon so he misses very little work. They said in the first 2 weeks no side effects to be expected and then it is 50/50 if you get any. 
I just listened to a youtube video that mentioned rectal spacers. Did people here have that? They did not mention it at the consultation but obv he could ask. 

They also asked if he was on ADT and said no doubt he will be recommended that too (next consultation with the other team is in November). Husband is more worried about side effects from that, tho tbh just getting radiation done first and then will think about ADT. 

He still does not want to tell the kids but 13yo in particular asks a lot and I end up lying. 

User
Posted 03 Oct 2025 at 00:54

Originally Posted by: Online Community Member
I just listened to a youtube video that mentioned rectal spacers. Did people here have that

There are people here who've had spacers. I asked about one when I was approaching RT but my oncologist reckoned it wasn't necessary. It might be recommended if it's considered that because of the location of cancer in the prostate, there's an increased risk of RT damage to the rectum. I've had no problem during or since my RT 4 years ago.

There are several potential downsides to spacers ... It can block some angles of attack for the RT. The spacers can  shift or occasionally break. They're also expensive now!

Unless you've been specifically advised it would be a good idea it's probably something you can cross off your list.

Telling the children? Children are usually more able to take news like this than adults. Not telling children seems more like a personal fear of disclosing than a concern for the children. 

Jules

 

Edited by member 03 Oct 2025 at 00:55  | Reason: Not specified

User
Posted 03 Oct 2025 at 08:36

Hi,

I had a spacer, it was a similar experience to the biopsy, though over quicker. It's done before the planning stage so they can see it on the scans and plan for it. 

No way of knowing what difference it made (I had three weeks of EBRT and then HDR Brachytherapy) however, I don't feel I've suffered any long term side effects bowl wise so far. I'm 10 months post radiotherapy. I didn't change what I ate during RT, though did avoid spicy food during the week days. I would say side effects kicked in towards the end and carried on for a few weeks after RT finished. Namely, I was up in the night for extra wee's and there was some clear mucus from back passage, now both gone

We have two boys 12 and 15, we chose to tell them and they were of course worried at first. We told them to ask any questions. We wrote all the RT session and HT injection dates on our kitchen blackboard so they could see when things were happening, and also cross them off

I did have a chat about treatment options with our youngest on the way to his footy training when he asked. I said I could have surgery or radiotherapy (i didn't tell him absolutely everything involved) he said, so if you have surgery you have to be off work for something like 4 weeks, take pain killers and have scars and not do running the line at my football, or you could have radiotherapy and you can carry on doing everything all the way through, why would you pick surgery?

Kids logic is brilliant ☺️

 

User
Posted 04 Oct 2025 at 08:46

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
I just listened to a youtube video that mentioned rectal spacers. Did people here have that

There are people here who've had spacers. I asked about one when I was approaching RT but my oncologist reckoned it wasn't necessary. It might be recommended if it's considered that because of the location of cancer in the prostate, there's an increased risk of RT damage to the rectum. I've had no problem during or since my RT 4 years ago.

There are several potential downsides to spacers ... It can block some angles of attack for the RT. The spacers can  shift or occasionally break. They're also expensive now!

Unless you've been specifically advised it would be a good idea it's probably something you can cross off your list.

Telling the children? Children are usually more able to take news like this than adults. Not telling children seems more like a personal fear of disclosing than a concern for the children. 

Jules

 

 

Ok, no no one mentioned it so I guess no need to "worry" about it. 

Good to hear that you had no problems. They told us lots of people have no side effects from radiation at all. 

Husband has no prostate as already RARP 5 months ago. So they are just targeting the general area. 

User
Posted 04 Oct 2025 at 08:57

Originally Posted by: Online Community Member

Hi,

I had a spacer, it was a similar experience to the biopsy, though over quicker. It's done before the planning stage so they can see it on the scans and plan for it. 

No way of knowing what difference it made (I had three weeks of EBRT and then HDR Brachytherapy) however, I don't feel I've suffered any long term side effects bowl wise so far. I'm 10 months post radiotherapy. I didn't change what I ate during RT, though did avoid spicy food during the week days. I would say side effects kicked in towards the end and carried on for a few weeks after RT finished. Namely, I was up in the night for extra wee's and there was some clear mucus from back passage, now both gone

We have two boys 12 and 15, we chose to tell them and they were of course worried at first. We told them to ask any questions. We wrote all the RT session and HT injection dates on our kitchen blackboard so they could see when things were happening, and also cross them off

I did have a chat about treatment options with our youngest on the way to his footy training when he asked. I said I could have surgery or radiotherapy (i didn't tell him absolutely everything involved) he said, so if you have surgery you have to be off work for something like 4 weeks, take pain killers and have scars and not do running the line at my football, or you could have radiotherapy and you can carry on doing everything all the way through, why would you pick surgery?

Kids logic is brilliant ☺️

 

 

Good to hear your side-effects were mild and are gone. I am pretty sure husband is just having external radiation, he already has RARP 5 months ago so this is salvage radiotherapy I guess. 

With brachytherapy you have to be careful of contact with pregnant women and pre-pubescent kids right? 

I would love to tell the kids. The 20yo is informed, but 17yo, 13yo and 9yo are not. 

In particular the 13yo asks a lot of questions because he notices a lot and i end up lying to him which i hate. I also think he is the kind of kid who would totally be able to take the infos on board and actually be much less nervous knowing the statistics and options as the doctors explained them rather than be left with the feeling something is going on and he is being shut out of it. 

Obviously I do realise this is my husband's story not mine. But it leaves me feeling very torn when 13yo asks. My father currently has terminal cancer in end stage (mesothelioma), which means cancer is very much on my son's mind and if we could talk openly (he basically worked out that the op was for PCa but is not being kept in the loop, i have to say husband does not want me to tell them anything and that everything is fine now), i think he would understand the difference in the 2 situations much better. Obviously i have assured him that they are very different but open infos would be easier. 

The ADT will also be coming up. The doctors were very clear they would recommend this too. 

 
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