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PSA rising to 0.4

User
Posted 07 Jul 2021 at 12:15

I am 55 years old and was diagnosed in January 2020. I had RP in September following Gleason 3+4 -=7, PSA 4.7. My first blood test came back 0.1 and I was told normal. My next test (April 21) came back at 0.3 - and again the GP surgery told me it was normal. As I checked myself as to whether it was normal or not I spoke with my urology nurse who told me to go to monthly tests as it would need to go to 0.5 for them to go to a Choline PET CT scan. My last test (May) has gone to 0.4 - and I am due the next test on 23 July.

The nurse is telling me not to worry - but I am concerned that they are not taking this seriously enough. As far as I can see the cancer is still there and needs treating. I need to know the reality of the situation so that I can deal with the consequences etc. In particular I'd like to know the likeliehood that this has spread to my bones and  a realistic idea of what treatment to expect and life expectancy.

To make matters worse the scanner that will be used (in Cheltenham) has issues which are causing 5-6 week delays...

Any advice / past experiences etc would be gladly received.

Many thanks :)

User
Posted 07 Jul 2021 at 13:42

The GP should not be saying that is normal. Less than 3.5 is normal for a man with a prostate, anything above 0.1 is not normal if you have had your prostate removed. Sadly GP software has all the test results for every test possible and a definition of the normal range, if it is within that range it flags as green and outside the range as red. The thing is you are not normal because you don't have a prostate, so normal range does not apply to you.

The first result may well have been <0.1 rather than 0.1 so that may have been a good result. 0.3 Is highly suspicious. You almost certainly have some prostate cells left, they are almost certainly cancer cells. They may be in the prostate bed, they may have metastasised. 

For the PET scan to be of use they have to wait for the tumour to be big enough to show up, I guess they are assuming a PSA of 0.5 will indicate that is likely.

If it is in the prostate bed RT and HT may be sufficient to cure you. If it has spread then sadly more systemic treatments may be required. Can't really guess life expectancy, 5 to 20 years might be possible even if it has spread.

The thing I would agree with the nurse about is don't worry, because worrying isn't going to change anything.

Dave

User
Posted 07 Jul 2021 at 17:25
Ask the urology nurse to refer you to oncology - by the time the referral has been processed you will most likely be close to or at 0.5. The onco may order a scan or the urology nurse can perhaps do it anyway but your PSA trend is fairly classic for cancer cells left behind in the prostate bed rather than metastatic disease so the onco mght recommend salvage RT without the scan.

What was your pathology like post-op? Did you have any positive margins or extra-prostatic spread?

The GP needs a rocket up their ....

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jul 2021 at 17:38

Thanks for the reply, really appreciated. As most new posters on here I am a bit of a PC Dummy so to hear from people with first hand knowledge is invaluable.

I Had R0 negative margins pN0 (0/52 nodes) - which apart from knowing the lymph nodes were clear doesn't mean a lot to me!

If the cells are in the prostate bed - I am hoping that this would be good news comparted to being metastatic?

Why do you think I should ask for a referral to Oncology? I am presuming that the PET scan will be a good idea as to locate the cells etc?

User
Posted 07 Jul 2021 at 18:49

Negative margins is good. Margins means the edge of what they cut out, and negative means no cancer cells there. A positive margin means there are cancer cells at the edge of what they cut out which implies they left some behind. I have no idea what R0 means.

Prostate bed is better than Metastasis, it implies that some cells are still lying around (maybe the margins were not as negative as they thought), but at least they are all in one place so some blasts of RT may kill them.

I think Lyn is suggesting the referral to oncology because PCa sits between two disciplines Urology and Cancer, a Urologist is thinking more in terms of the mechanics of things i.e. the pipes are blocked lets cut the blockage out, whereas an oncologist is thinking more like there is a cell problem here it needs sorting at a cellular level. So I think Lyn is suggesting get referred to the doctors who deal with cancer cells rather than the doctors who deal with blocked pipes.

 

Dave

User
Posted 07 Jul 2021 at 21:29
The reason that I said to ask for a referral to oncology is because sometimes a urologist can hang about a bit & delay making the referral themselves. A recurrence is a failure as far as the urologist's stats go and some - those with big egos perhaps - delay involving the oncologist. Now you have a recurrence, the urologist is pretty irrelevant to you as RT / hormone treatment / scanning will (should) all be handled by oncology. The only exception to this would be for the very small number or uro-oncologists around the country but from what your nurse said, that doesn't seem to apply to you.

With a PSA of 0.5 there is a reasonable chance that the PET scan might not find anything. A 5 or 6 week wait for a scan isn't a major issue but not starting HT because you are waiting many months for a scan would not be ideal.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jul 2021 at 21:33

Originally Posted by: Online Community Member

If the cells are in the prostate bed - I am hoping that this would be good news comparted to being metastatic?

 

If the cells are only in the prostate bed, salvage RT has a very good chance of getting rid of them. My husband had the op 11 years ago and a recurrence 2 years later which led to RT / HT. Nine years later his PSA is still low and stable.  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jul 2021 at 01:32
As I have said here before, most GPs know very little about prostate cancer, and for you to be told, post prostatectomy, that an increasing PSA score of 0.3 was ‘normal’, is verging on medical negligence!

I and three friends had cancer surgery at the same time three years ago, three with the ‘best’ surgeons money can buy, and the other with his local urologist.

All three of them had what’s called biochemical recurrence, like you, and had to have adjuvant hormone therapy and or radiotherapy. We are all doing fine now.

If I were you, I would ask for a PET-PSMA scan, even if you have to travel to get one. This should tell Dan Dare where the remaining cancer cells are, so he can target his ray-gun at a specific area, rather than using a shotgun approach and irradiating your whole pelvic area.

I’m sure you’ll be OK.

Best of luck.

Cheers, John.

User
Posted 08 Jul 2021 at 10:35
Actually I think this is medical negligence by the GP AND the urology nurse.

You have met the level where you have a recurrence at 0.2 by any standard.

You should have been referred back to oncology immediately.

Record a formal complaint with your GP and call the urology nurse and make sure you get a refferal ASAP

User
Posted 08 Jul 2021 at 12:29

Originally Posted by: Online Community Member
Actually I think this is medical negligence by the GP AND the urology nurse.

You have met the level where you have a recurrence at 0.2 by any standard.

You should have been referred back to oncology immediately.

Record a formal complaint with your GP and call the urology nurse and make sure you get a refferal ASAP

We don't know that the urology nurse is saying this isn't a recurrence Francij - all we know is that she has said in their hospital or NHS Trust, the PET scan isn't arranged until the PSA reaches 0.5

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jul 2021 at 12:31

Originally Posted by: Online Community Member

How long was your husband on HT? I was on it for nearly a year prior to surgery - and it was far from pleasant.

6 months - 3 months before & 2 months after. It was supposed to be for longer but he hated how it made him feel so stopped early. Some oncos decide that HT isn't always necessary with salvage RT - you won't know that until you see the oncologist.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jul 2021 at 12:45
Update: Just had a call from the Urology Nurse to tell me that they have requested the Choline PET CT Scan - without waiting for PSA to reach 0.5 - which is good news!
User
Posted 13 Jul 2021 at 15:46
So Simon,

The Gallium-68 isotope PET-PSMA scan is markedly superior to a choline scan, (and rarer and more expensive - £2600 privately), so as I said above, see if you can get one. If you don’t ask you don’t get.

It will involve travel as there are very few centres with the capability to manufacture this radioactive isotope with a short half-life, and others have reported last minute cancellations due to failures in the production of the tracing agent.

Best of luck, as ever.

Cheers, John.

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User
Posted 07 Jul 2021 at 13:42

The GP should not be saying that is normal. Less than 3.5 is normal for a man with a prostate, anything above 0.1 is not normal if you have had your prostate removed. Sadly GP software has all the test results for every test possible and a definition of the normal range, if it is within that range it flags as green and outside the range as red. The thing is you are not normal because you don't have a prostate, so normal range does not apply to you.

The first result may well have been <0.1 rather than 0.1 so that may have been a good result. 0.3 Is highly suspicious. You almost certainly have some prostate cells left, they are almost certainly cancer cells. They may be in the prostate bed, they may have metastasised. 

For the PET scan to be of use they have to wait for the tumour to be big enough to show up, I guess they are assuming a PSA of 0.5 will indicate that is likely.

If it is in the prostate bed RT and HT may be sufficient to cure you. If it has spread then sadly more systemic treatments may be required. Can't really guess life expectancy, 5 to 20 years might be possible even if it has spread.

The thing I would agree with the nurse about is don't worry, because worrying isn't going to change anything.

Dave

User
Posted 07 Jul 2021 at 17:25
Ask the urology nurse to refer you to oncology - by the time the referral has been processed you will most likely be close to or at 0.5. The onco may order a scan or the urology nurse can perhaps do it anyway but your PSA trend is fairly classic for cancer cells left behind in the prostate bed rather than metastatic disease so the onco mght recommend salvage RT without the scan.

What was your pathology like post-op? Did you have any positive margins or extra-prostatic spread?

The GP needs a rocket up their ....

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jul 2021 at 17:38

Thanks for the reply, really appreciated. As most new posters on here I am a bit of a PC Dummy so to hear from people with first hand knowledge is invaluable.

I Had R0 negative margins pN0 (0/52 nodes) - which apart from knowing the lymph nodes were clear doesn't mean a lot to me!

If the cells are in the prostate bed - I am hoping that this would be good news comparted to being metastatic?

Why do you think I should ask for a referral to Oncology? I am presuming that the PET scan will be a good idea as to locate the cells etc?

User
Posted 07 Jul 2021 at 18:49

Negative margins is good. Margins means the edge of what they cut out, and negative means no cancer cells there. A positive margin means there are cancer cells at the edge of what they cut out which implies they left some behind. I have no idea what R0 means.

Prostate bed is better than Metastasis, it implies that some cells are still lying around (maybe the margins were not as negative as they thought), but at least they are all in one place so some blasts of RT may kill them.

I think Lyn is suggesting the referral to oncology because PCa sits between two disciplines Urology and Cancer, a Urologist is thinking more in terms of the mechanics of things i.e. the pipes are blocked lets cut the blockage out, whereas an oncologist is thinking more like there is a cell problem here it needs sorting at a cellular level. So I think Lyn is suggesting get referred to the doctors who deal with cancer cells rather than the doctors who deal with blocked pipes.

 

Dave

User
Posted 07 Jul 2021 at 20:58
Thanks Dave.

That makes sense. The Urology nurse did say that I would probably be passed to the RT consultant after the scan - and that as I am "young" they would throw everything at me.

I just want to know what I am dealing with - good or bad! Until it's confirmed prostate bed or metastasis etc I'll be on tenterhooks. Strange really as when I was first diagnosed I didn't get too worried - and was confident that everything would be ok; I was not ready for this, especially after the surgeon told me that I was as good as cured!

User
Posted 07 Jul 2021 at 21:29
The reason that I said to ask for a referral to oncology is because sometimes a urologist can hang about a bit & delay making the referral themselves. A recurrence is a failure as far as the urologist's stats go and some - those with big egos perhaps - delay involving the oncologist. Now you have a recurrence, the urologist is pretty irrelevant to you as RT / hormone treatment / scanning will (should) all be handled by oncology. The only exception to this would be for the very small number or uro-oncologists around the country but from what your nurse said, that doesn't seem to apply to you.

With a PSA of 0.5 there is a reasonable chance that the PET scan might not find anything. A 5 or 6 week wait for a scan isn't a major issue but not starting HT because you are waiting many months for a scan would not be ideal.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jul 2021 at 21:33

Originally Posted by: Online Community Member

If the cells are in the prostate bed - I am hoping that this would be good news comparted to being metastatic?

 

If the cells are only in the prostate bed, salvage RT has a very good chance of getting rid of them. My husband had the op 11 years ago and a recurrence 2 years later which led to RT / HT. Nine years later his PSA is still low and stable.  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jul 2021 at 01:32
As I have said here before, most GPs know very little about prostate cancer, and for you to be told, post prostatectomy, that an increasing PSA score of 0.3 was ‘normal’, is verging on medical negligence!

I and three friends had cancer surgery at the same time three years ago, three with the ‘best’ surgeons money can buy, and the other with his local urologist.

All three of them had what’s called biochemical recurrence, like you, and had to have adjuvant hormone therapy and or radiotherapy. We are all doing fine now.

If I were you, I would ask for a PET-PSMA scan, even if you have to travel to get one. This should tell Dan Dare where the remaining cancer cells are, so he can target his ray-gun at a specific area, rather than using a shotgun approach and irradiating your whole pelvic area.

I’m sure you’ll be OK.

Best of luck.

Cheers, John.

User
Posted 08 Jul 2021 at 10:35
Actually I think this is medical negligence by the GP AND the urology nurse.

You have met the level where you have a recurrence at 0.2 by any standard.

You should have been referred back to oncology immediately.

Record a formal complaint with your GP and call the urology nurse and make sure you get a refferal ASAP

User
Posted 08 Jul 2021 at 10:45

How long was your husband on HT? I was on it for nearly a year prior to surgery - and it was far from pleasant.

User
Posted 08 Jul 2021 at 12:29

Originally Posted by: Online Community Member
Actually I think this is medical negligence by the GP AND the urology nurse.

You have met the level where you have a recurrence at 0.2 by any standard.

You should have been referred back to oncology immediately.

Record a formal complaint with your GP and call the urology nurse and make sure you get a refferal ASAP

We don't know that the urology nurse is saying this isn't a recurrence Francij - all we know is that she has said in their hospital or NHS Trust, the PET scan isn't arranged until the PSA reaches 0.5

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jul 2021 at 12:31

Originally Posted by: Online Community Member

How long was your husband on HT? I was on it for nearly a year prior to surgery - and it was far from pleasant.

6 months - 3 months before & 2 months after. It was supposed to be for longer but he hated how it made him feel so stopped early. Some oncos decide that HT isn't always necessary with salvage RT - you won't know that until you see the oncologist.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jul 2021 at 12:57

I know how he felt about the HT! Hopefully I won't have to be on it for too long - if at all. Glad he's doing well now.

User
Posted 13 Jul 2021 at 12:45
Update: Just had a call from the Urology Nurse to tell me that they have requested the Choline PET CT Scan - without waiting for PSA to reach 0.5 - which is good news!
User
Posted 13 Jul 2021 at 13:49

A 68 Gal PSMA scan is generally preferable to the Choline one. In Australia a Professor said in his lecture that they quickly abandoned the Choline scan when the PSMA showed it was superior. I was given the Choline scan by UCLH from which they deduced that the uptake of the Choline in an Iliac lymph node signified there was cancer in it. Three other hospitals disagreed, but UCLH would not sanction a PSMA scan, so I paid for one privately. This scan did not show cancer in the Iliac node. This was important because the cancer found in my Prostate could be treated specifically but had it been in the Iliac node it would have only been treated systemically.

Edited by member 13 Jul 2021 at 13:59  | Reason: spelling

Barry
User
Posted 13 Jul 2021 at 15:46
So Simon,

The Gallium-68 isotope PET-PSMA scan is markedly superior to a choline scan, (and rarer and more expensive - £2600 privately), so as I said above, see if you can get one. If you don’t ask you don’t get.

It will involve travel as there are very few centres with the capability to manufacture this radioactive isotope with a short half-life, and others have reported last minute cancellations due to failures in the production of the tracing agent.

Best of luck, as ever.

Cheers, John.

User
Posted 26 Jul 2021 at 18:07

Latest blood test (3 week interval) came back as 0.4 again - don't know if this is good or bad! But in advance of this result Specialist has already referred me to "Cobalt" in Cheltenham for CT scan. Looks like minimum 6 week wait for this due to dye supply issues. Similar issues as with PSMA scan isotype - ie short shelf life and failures in production causing last minute cancellations...

Edited by member 26 Jul 2021 at 18:10  | Reason: correction

 
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