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PSA doubling time and what next

User
Posted 03 Apr 2024 at 22:28

Hi everyone,

This is my first post but I have been reading posts and advice here for around 6 months and could do with some people's thoughts on my current situation. 

Firstly, my a quick summary of my journey so far.

APRIL 2023 seen my GP as was having a weak urine stream for years but didn't think it was a problem. I'm 51 now. PSA was 3.17 and DRE was abnormal - no lumps felt but quite firm.

MAY 2023 seen urologist and DRE done again and referred for MRI

JUNE 2023 MRI done. 2cm tumour on LHS and very slight break out at edge of capsule into neurovascular bundle. Lymph nodes and seminal vessicles clear. Also there was a tiny dot on RH femur which was indeterminate. Urologist and radiographer felt not bone cancer metastasis but referred for bone scan for completeness. Also referred for biopsy.

JULY 2023 had biopsy and nuclear bone scan.

AUGUST 2023 bone scan clear.

SEPTEMBER 2023 Biopsy results were grade 2 gleason 3 + 4. Cores had 5 out of 27 with cancer. Advised possible PT3A. Offered radiotherapy or RARP. Advised with age and size of tumour probably better to have surgery and I wanted surgery to get the root of the problem out.

NOV 1st 2023 Surgery with nerve spared on one side.

Jan 2nd 2024 results of pathology on prostate and 1st post surgery PSA test. PSA was 0.1 which was 9 weeks from surgery. Pathology showed positive margins as bladder neck and also at bases of seminal vesicles. Still grade 2 and gleason 3 + 4 but upgraded to PT3B due to microscopic cells found at margins. Referred to oncologist

Feb 2nd 2024 meeting with oncologist. PSA done at 13 weeks and up to 0.15. Oncologist said too early to be sure cancer was still there. He said that would not advise doing anything until PSA reaches 0.4 or rises 4 times consecutively. He also wanted to wait until May for an MRI on the bone again as he wanted to rule that out as a cancer spot so that right treatment can be offered if required. He said the bone scan would not have picked anything up on the bone as it was so small and they seemed to believe it was a bone island and unlikely to be cancer. His advice was to wait and watch the PSA and have the scan. I was referred back to urology again

March 15th 2024. After pleading nurse not to wait 3 months for another PSA test I had one is 6 weeks on March 15th which is week 19 from surgery. PSA up again from 0.15 to 0.22. Seems to be moving 0.01 per week? Nurse is sending a letter back to oncologist to see me again.

 

I am no expert but think I should push for MRI and PSMA pet scan in April and think I should get radiotherapy to kill off any residual cells left. Any advice or thoughts would be appreciated. Its 1 yr today from My GP meeting and I don't want another 6 months of waiting and worrying as it's taking a toll on me and my family. Thanks. Phil

 

User
Posted 03 Apr 2024 at 22:28

Hi everyone,

This is my first post but I have been reading posts and advice here for around 6 months and could do with some people's thoughts on my current situation. 

Firstly, my a quick summary of my journey so far.

APRIL 2023 seen my GP as was having a weak urine stream for years but didn't think it was a problem. I'm 51 now. PSA was 3.17 and DRE was abnormal - no lumps felt but quite firm.

MAY 2023 seen urologist and DRE done again and referred for MRI

JUNE 2023 MRI done. 2cm tumour on LHS and very slight break out at edge of capsule into neurovascular bundle. Lymph nodes and seminal vessicles clear. Also there was a tiny dot on RH femur which was indeterminate. Urologist and radiographer felt not bone cancer metastasis but referred for bone scan for completeness. Also referred for biopsy.

JULY 2023 had biopsy and nuclear bone scan.

AUGUST 2023 bone scan clear.

SEPTEMBER 2023 Biopsy results were grade 2 gleason 3 + 4. Cores had 5 out of 27 with cancer. Advised possible PT3A. Offered radiotherapy or RARP. Advised with age and size of tumour probably better to have surgery and I wanted surgery to get the root of the problem out.

NOV 1st 2023 Surgery with nerve spared on one side.

Jan 2nd 2024 results of pathology on prostate and 1st post surgery PSA test. PSA was 0.1 which was 9 weeks from surgery. Pathology showed positive margins as bladder neck and also at bases of seminal vesicles. Still grade 2 and gleason 3 + 4 but upgraded to PT3B due to microscopic cells found at margins. Referred to oncologist

Feb 2nd 2024 meeting with oncologist. PSA done at 13 weeks and up to 0.15. Oncologist said too early to be sure cancer was still there. He said that would not advise doing anything until PSA reaches 0.4 or rises 4 times consecutively. He also wanted to wait until May for an MRI on the bone again as he wanted to rule that out as a cancer spot so that right treatment can be offered if required. He said the bone scan would not have picked anything up on the bone as it was so small and they seemed to believe it was a bone island and unlikely to be cancer. His advice was to wait and watch the PSA and have the scan. I was referred back to urology again

March 15th 2024. After pleading nurse not to wait 3 months for another PSA test I had one is 6 weeks on March 15th which is week 19 from surgery. PSA up again from 0.15 to 0.22. Seems to be moving 0.01 per week? Nurse is sending a letter back to oncologist to see me again.

 

I am no expert but think I should push for MRI and PSMA pet scan in April and think I should get radiotherapy to kill off any residual cells left. Any advice or thoughts would be appreciated. Its 1 yr today from My GP meeting and I don't want another 6 months of waiting and worrying as it's taking a toll on me and my family. Thanks. Phil

 

User
Posted 04 Apr 2024 at 02:46

Hi yes it looks like you still have cancer. The rises are fairly consistent. When PSA is very low calculating a doubling time is pointless. There could be some variation caused by testing at different labs. Your PSA is now high enough and consistent enough to suggest a doubling time of ten weeks is reasonably accurate. By the beginning of June your PSA will be about 0.5. doing scans before then is unlikely to pick up small tumours, hopefully your oncologist can line up some scans for you in June. I guess PSMA is the most likely one to give useful results.

Dave

User
Posted 04 Apr 2024 at 08:51
I would push back to the Oncologist and try and get him to accept that you have exceeded the 0.2 threshold. I imagine that the low PIRADS score is holding him back but I would be pushing to start HT and Salvage Radiotherapy. I was OK to get the treatment as my PIRADS was 5 but it would seem that the sooner you can get onto the treatment plan, even if it's just HT at this stage, would be worth discussing with them.

At 0.5 you should be getting a PSMA scan but worth pursuing the other treatments if you can.

Good luck

Steve

User
Posted 11 Apr 2024 at 13:18

Hi Adrian,

Sorry I should have said, he is planning 20 sessions of radiotherapy. He believes that will be possible rather than 33 sessions.

 

Cheers

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User
Posted 04 Apr 2024 at 02:46

Hi yes it looks like you still have cancer. The rises are fairly consistent. When PSA is very low calculating a doubling time is pointless. There could be some variation caused by testing at different labs. Your PSA is now high enough and consistent enough to suggest a doubling time of ten weeks is reasonably accurate. By the beginning of June your PSA will be about 0.5. doing scans before then is unlikely to pick up small tumours, hopefully your oncologist can line up some scans for you in June. I guess PSMA is the most likely one to give useful results.

Dave

User
Posted 04 Apr 2024 at 08:51
I would push back to the Oncologist and try and get him to accept that you have exceeded the 0.2 threshold. I imagine that the low PIRADS score is holding him back but I would be pushing to start HT and Salvage Radiotherapy. I was OK to get the treatment as my PIRADS was 5 but it would seem that the sooner you can get onto the treatment plan, even if it's just HT at this stage, would be worth discussing with them.

At 0.5 you should be getting a PSMA scan but worth pursuing the other treatments if you can.

Good luck

Steve

User
Posted 04 Apr 2024 at 17:29

A PSMA scan is certainly the thing to push for to ensure the RT is properly targeted. You wouldn't want HT to start until after your scan as you want to be able to see any cancer spots in all their glory before they start shrinking with the HT.

User
Posted 05 Apr 2024 at 00:09
You need to ask what they are waiting for? The operation did not get it all, your PSA rise confirms this, I would want to know why they are not recommending HT / RT right now.
User
Posted 05 Apr 2024 at 17:03

Hi Dave, thanks for the comments. I'm hoping to have any saunas etc done before June and get some form of treatment done.

I have Dr google to name ref the doubling time. I read many reports that advised that doubling time of <12 months not ideal but <3 months high risk for a more aggressive recurrence. That said there are so many differing opinions from the experts....

Cheers 

User
Posted 05 Apr 2024 at 17:07

Hi Francij1,

Thanks for the reply. My team's view is that clinical outcomes on treatment before PSA is at 0.4 and after are the same. Suggests that no danger in monitoring to be able to pinpoint the source of the PSA is better than nuking the prostate bed where they might miss it. It's a hard one to get the head around. Cheers

 

User
Posted 05 Apr 2024 at 17:09

Thanks Chris. 

The interesting thing is that HT has not been even mentioned to me as a course of action yet. Just radiotherapy. I'm going to discuss this when I have my next meeting......not that I want HT but it might be a nenefit to me now?

 

Cheers

User
Posted 05 Apr 2024 at 17:12

Hi Steve,

Thanks for the advice. Yea, it's interesting you mentioning HT. His hasn't been even mentioned to me as a treatment option yet....just Radiotherapy. I'm going to discuss this with oncologist at me next meeting to see if it's appropriate for me......I'd like to avoid it if possible as a lot of posts suggest severe side effects from it. Cheers

User
Posted 05 Apr 2024 at 17:36
I think everyone is different - I am 4 days into HT and not a single side effect although I did think that my balls are shrinking - but I think that's just psychological :)

I have read that the PCa cells thrive off of testosterone so I am thankful that I'm taking every step towards curing it. But I would probably feel different if (when??) there were side effects.

User
Posted 05 Apr 2024 at 21:29

Hi,

It sounds a bit similar to what I was told, which is PSMA at 0.5.   It seems late to me as well, although I'm hoping it's some time to making a decision.

There are nomograms on line for salvage treatment.  I did mine and it showed a better outcome with hormones.

Link here  https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

There's an element of luck with the PSMA scans as it might find something at 0.2 if it's one lesion. At 0.5 the chance of finding something is still much lower than 100%.  At your age they should be pulling out the stops. 

I think I'll be considering a private scan if they don't agree to an earlier one, they seem to cost between £2500 and £3000, although that was a year ago.

They say the chances of a cure are good at 0.25 and more than at 0.5 so having the scan at 0.4 or 0.5 is a balance between hoping they can see it at the higher level and whether it's less treatable.  I found at initial diagnosis the hospital wanted more certainty when it seemed to me they had enough information.  It's often a bit of a gamble and all you can do is try to reduce the risk in your own mind.

There is another person on here who was your age and had an early scan that found a stray lesion not where expected and he had RT that's worked so far.  Look up Ulsterman's earlier posts as he had a recent hiccup which seems to have gone away.

Keep thinking well ahead as going back to Urology means you'll need to be referred again when your next appointment could be one where you need to have a serious discussion about treatment options which if it involves psma scans might take time.

It looks like you're doing the right things anyway.  I sometimes get carried away writing.

all the best Peter

 

 

User
Posted 11 Apr 2024 at 03:04

Hi Guys,

Just a short update. Taking some advice from the community I have been in contact with hospital to try and find out how to progress and highlighting the heightined state of anxiety.

Having found out my appointment with oncologist is booked for 30th May, I managed to get a call with him yesterday. He has said that, although PSA values can jump around a bit, due to the consistent rise post surgery from 0.1 to 0.15 to 0.22 and doubling time of 10 weeks it suggests that the operation in Nov 2023 has not removed all the cancer.

2 options

1) wait until the psa gets to a point where there are symptoms or to around 10 and then do HT

2) do radiotherapy to the hormone bed now

He believes doing a psma pet scan at my psa level will likely not show anything and he would not consider doing it until psa reaches 0.5 or 1.

He also doesn't believe HT would be of benefit to me now at a low psa level of 0.22 as summarised in point 1 above recommendation 

He believes if I do radiotherapy now, I have about a 50/50 chance of it curing me now....the risk being if it has spread outside the prostate bed area.

Its such a headache (the chicken or the egg syndrome!!)but I don't want to wait to June or July, have more scans, then possible be waiting while cancer cells continue to grow and prosper without treatment.

I've informed him I'd like to proceed with radiotherapy and he is now organising same. As soon as I made the decision I felt relief but now my head is spinning have I 'shot my bolt' too early lol.

He did say that obviously there are other treatment options should radio not be effective but I think apart from the side effects of RT which im fully aware of, at 51 yrs old it's worth it.

 

Any thoughts or comments would be appreciated.

Cheers

User
Posted 11 Apr 2024 at 08:00

Hi Phil,

I'm nowhere as knowledgeable as some that have commented on here.

However, doesn't this contradict your team's initial plan to continue monitoring and trying to establish the source before zapping the prostate bed and risk the chance of missing it?

Is it your concerns alone that have led to their change of mind?

It also opens the old chestnut, which is often discussed on here, of the efficacy of salvage RT without HT. Have they decided how many times you'll be zapped? Do you have the opportunity to have the 'new' reduced number of 5 doses, or does that only apply to those having RT as a primary treatment?

Personally, I would do as you've done, and get on with the job. At least you and your family have the peace of mind that something positive is being done. 

I wish you the best of luck mate and hope that it gets sorted. 

Edited by member 11 Apr 2024 at 08:55  | Reason: Typo

User
Posted 11 Apr 2024 at 09:17

I'm not surprised your head is spinning, it must be like going through diagnosis all over again. 

You mention that your histology was PT3B with positive margin and cancer cells present, if I got that right. In my layperson's opinion I'd say your oncologist has a really good idea as to where the cancer is and where to target the radiation. As you're well over (or will be) the threshold for a scan, it would be nice to have that to confirm its location. 

I can understand how you feel about HT, I was the same, but with your histology and doubling time, can you ask for HT? Also, did you try running the nomogram from Peter's post?

I went for early SRT without HT in 2022 and so far it has paid off, but that nomogram sows seeds of doubt in my mind. 

It's a difficult decision and I wish you good luck. 

Kev.

User
Posted 11 Apr 2024 at 10:39

I had a poor histology after surgery but it took three years before my PSA breached 0.2, I started salvage RT at 0.27. My SRT was based on the educated guess approach. It did reduce my PSA so something was still in the bed , 5 years later at a PSA of 1.8 I had a PSMA scan and cancer was found in a pelvic lymph node. About ten months later another scan found cancer in another pelvic lymph node.

I believe there are different scenarios for fast and slow rising PSA after surgery, I am sure the scholars will advise.

Following my SRT my oncologist was talking of waiting for the PSA to hit 10 before additional treatment, he now says another PSMA scan at 1 or if the doubling time exceeds three months. Quite a change in the approach probably due to advances in PSMA scans. My hospital will scan at 0.3.

Always worth a chat with the brilliant nurses in this site , number at the top of the page.

Thanks Chris 

User
Posted 11 Apr 2024 at 11:59

Hi Adrian,

I think it's a bit of me pushing and the rate of change. Part of oncologists concern at my meeting on 2nd Feb was that although my PSA had risen at that time from 0.1 to 0.15, he said these readings can bounce around a little and it was not clear evidence that cance still there until consecutive rises or PSA above 0.4. He had asked urology to refer me back to him when mh PSA went above 0.2. I think with the fact it moved to 0.22 in around 6 weeks that he has said in gives clear evidence now to suggest cance still there and rate if change a little concerning.

The other thing resonating in my head was something the surgeon said to me at my post surgery review in beginning of Jan. He said there were cancer cells on the bladder neck and that he could not take any more away during surgery or would have made me incontinent. When I asked him then were there some cells possibly in the prostate bed in that area he said, no they are on the bladder neck. 

 

I think with high risk features of PT3b with ENE, neurovascular bundle invasion, seminal vesicles basesninvasion and bladder neck invasion, the RT can't do me any harm. I'm physically fit and well and if there are cells elsewhere, there will be a treatment plan for that.

Don't like an option of waiting for symptoms or high enough PSA for HT as could spread to distant locations in the interim.

I've 4 great kids and wife to look after so want to tackle this head on if I can positively.

Your advice is giving me thinking space which I that you for 😊

User
Posted 11 Apr 2024 at 12:23

Hi Kev,

Yes mate I know....see my response to Adrian there. I did fill in the nomogram from Peters link but it said the results would be invalid in my case because my PSA didn't drop to undetectable post surgery?

I'm heading you are still undetectable after your RT. I think if mine had been undetectable and then become detected over still and slow rise, I'd be less concerned on timeline to take action. 

Time will tell if I have agreed the right action plan. I hope so

 

Cheers

User
Posted 11 Apr 2024 at 12:26

Thanks Chris,

I know we have to remind ourselves that these levels of PSA are very low and very treatable. I think you are still in  good place after 5 years. Good luck with next steps....

 

Cheers

User
Posted 11 Apr 2024 at 13:18

Hi Adrian,

Sorry I should have said, he is planning 20 sessions of radiotherapy. He believes that will be possible rather than 33 sessions.

 

Cheers

 
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