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Recurring PCa but scan detects nothing - we're completely lost

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User
Posted 24 May 2020 at 17:44

Hi all, I'm not from UK but was told that UK has many top Doctors and with very limited community support in my country, I hope that I can get some valuable advice here.

My dad was diagnosed with PCa and had a RP surgery back in 2008. PSA reading at that time was 19 and G score from biopsy was 6. He was 63 back then. 

In 2016, he had his first PSA check since 2012, the reading was 1.5. The Urologist (Dr A) who performed his surgery said it was alright. In about 20 months later, PSA increased to 3.2, was told that it's fine too. Then it shot up to 5.0 in another 17 months. Then he was given hormone injection and the PSA dropped to 2.8.

Due to the C-19 lockdown, we couldn't visit Dr A hence decided to visit another Urologist (Dr B). He scolded us and was so mad at Dr A for gaving the "wrong treatment and advice" after we shared some medical records with him. He advised to get a Ga68-PSMA scan immediately. We were so shocked and thought all the while that everything was fine.

I then started reading a lot, and found that after my dad's RP, there were lots of warning signals - his PSA doubling time was less than 6 months, and it keep doubling quickly from 0.1 all the way up to 0.9 in just over a year after his surgery. His PSA recurrence was also shortly after RP. Only now I knew that it called for attention and there were many things could be done to actually cure it then. But Dr A said nothing at all, and he kept telling us the readings were fine as it was still very low at that time. We knew very little on the implications of all these reading. 

We are very glad that the PSMA scan detected nothing, but here's our dilemma now. Dr B said that we can either consider a hormone therapy or radiotherapy with hormone treatment. He stongly recommended the latter. We were wondering, if the PSMA scan couldn't detect where the tumour is, how is it possible to perform a RT? Where should the RT focus to kill the cancer cells? Dr B didn't sound too sure, and he sounded like we need to take the chance to have a RT on the prostate bed. 

I've so many questions in my mind now while feeling very bad for being ignorant after the RP surgery.

1) Can we just simply have a RT without even knowing where the tumour is? If we simply have a RT, my dad probably can't do it again if it missed the target

2) If we don't perform the RT (which is supposed to be the only method to cure the cancer), will hormone therapy alone or active monitoring stop the cancer from turning advance? We want to cure it but we really don't know how

3) The likelihood of the PSMA scan not properly done, or the Dr overlooked the tumour in the scan

It's very troubling for us to know that the cancer is still out there but we don't know where it is, could it still be localised, could it have turned metastatic and how can we cure it. 

User
Posted 24 May 2020 at 23:55
It would be useful to know which country you are in and to confirm that the measurement scale is the same one used in the UK - can you confirm that the PSA readings are in nanograms per millilitre or ng/ml?

The doctors can't know that the cells are in the prostate bed so they base their recommendations on years and years of experience. Almost always, if the PSA is below 0.1 6 weeks after the RP and then rises quite slowly (as happened with your dad) it indicates that some cancer cells were left behind in the prostate bed. If the PSA is above 0.2 immediately after the RP that is a strong indicator that the cancer had spread before the op was done, usually to lymph nodes or bone. If the PSA rises quickly after the op, that is also a strong indicator of spread. Your dad's PSA has taken 12 years to get to 5 so the rise is quite slow, a solid indicator of cells in the prostate bed. So all in all, Dr B is giving you his best guess based on how PSA normally behaves; RT to the prostate bed seems sensible. The fly in the ointment is the clear PSMA scan - you would expect a cancer cluster that is big enough to generate a PSA of 5 to be easily visible. However, some prostate cancers simply don't show up on scans so the doctor has to fall back on best guess based on experience.

You have a difficult choice to make as a family. Your dad is now 75. Is he fit and with good general health? How does he feel about going to hospital for daily RT for between 4 - 7 weeks? Does he understand the potential side effects and that it may be a waste of time if the cancer cells are not in the prostate bed? On the other hand, if you decide not to go for the RT you are accepting that the cancer is now incurable and he will only have hormone treatment to control it. Hormone treatment can work for many years but it doesn't work for ever; your dad and his doctor may calculate that there is a good chance of the HT lasting long enough for dad to die of something else entirely.

It is all a balance of risk.

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

User
Posted 26 May 2020 at 16:23
My dad has chosen to do nothing for the time being - at current stats his doubling time is more than 18 months so the urologist's prediction is that it will be about 25 years before it kills him so Dad's view is why affect quality of life until it is absolutely necessary. If the doubling time drops to 6 months, we will rethink.

At present, your dad's doubling time (based on the numbers you have provided) is about 31 months. RT seems quite an extreme response so do satisfy yourself that there is no financial motive for doctors encouraging him to have treatment.

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

User
Posted 24 May 2020 at 23:36

Dr A sounds to have been grossly negligent from what you've said. Really sorry about that.

PSMA doesn't work in everyone. You could get a second opinion on the scan. However, your PSA is high enough that it has a good chance of showing on a Choline PET scan, although I'm not sure the implications of having started HT already. It would be worth getting a nuclear (Technetium) bone scan, to see if it shows any spread to bone. CT scans and MRI scans might also show where it is such as enlarged lymph nodes and spread to bone.

I would suggest you try some more scans to find where it is before having radiotherapy. Having radiotherapy blind to the prostate bed might miss an area which would be treatable, but not after the RT as you say. Scans might show it's advanced, which which case RT is probably not appropriate, at least to the prostate bed.

User
Posted 25 May 2020 at 04:22
Unfortunately about 8% of men don't express sufficient PMSA for the scan to work and there is no guarantee that it will show up even for those that do, cancer cells sometimes being so finely spread. Being unable to see these cancer cells can also apply with MRI scans of any type for that matter regardless of whether a man expresses PSMA which is not required in other scans. But you don't know unless you have other scans. There is more chance of the cancer cells being seen as PSA increases although keep waiting for this means there is the possibility of spread further afield. RT obviously stands a better chance of damaging the DNA of cancer cells if it is directed on to them. This means the most likely area is the Prostate Bed although this is not certain and there is a limit to how far the RT can be extended to cover. So without the cancer being seen on scans, it's shooting in the dark. So it's a gamble as to whether Dad has RT now to the Prostate bed or save for use there or elsewhere when the location of the cancer can be found. Of course it could be spreading meanwhile. HT can restrain for a time and Chemo is another possibility among several to treat systemically.
Barry
User
Posted 25 May 2020 at 09:23
Have a look at my profile by clicking my picture. My post op psa was 1.5 sadly and then advanced very quickly also. They offered RT to the bed but said it was unlikely to cure with those numbers so I declined. I had one year of HT but hated it so we decided to find it if we could. I came off HT and let my psa rise. I had both Choline PET and PSMA PET , and neither showed anything. I decided to stay off HT and my psa is now 440. No symptoms or pains anywhere. They ‘ think’ I may have mets on my spine but the bone scan operator said she wouldn’t have noticed them had I not told her afterwards. I do have 2 lymph nodes growing in my high rear abdomen but also very slowly and quite a way off from causing me pain.
User
Posted 25 May 2020 at 10:08

Hi Chris, I read your profile after my first post yesterday. It's really troubling to not find anything from the scan while the PSA is rising high. I spent many hours trying to go through this forum as much as I could as it really gives us hope and encouragement.

You're very brave, trying to live and enjoy life to the fullest. It's quite difficult to accept this thing in you and ignore it. I do really hope that you have many great years ahead and praying that some new, more effective treatment is found in the next few years.

User
Posted 25 May 2020 at 10:12

If your dad is 75 and his doubling time is less than 12 months (from your figures I think it is) he is otherwise in good health I would seriously consider doing precisely nothing..

If you do decide on HT and it's prohibitively expensive you could consider castration, the results are just as effective as HT without the ongoing expense. It also has very few side effects (apart from the obvious!).

RT now could be seen as a shot in the dark with the potential for significant side effects.

Some tough choices and no easy answers I'm afraid but remember if your dad is enjoying his life at the mo any PC treatment may make it less so..

 

User
Posted 26 May 2020 at 22:59
If it is decided to have HT, should the side effects become severe after say a month or two, having given the body a chance to get accustomed to it, Dad could decide to discontinue it.
Barry
User
Posted 27 May 2020 at 23:19
"Dad's doubling time is slow, but it was quick 12 years ago after his surgery, so we're not sure is it safe to just consider the latest/current stats"

Doubling time can't be identified reliably by only looking at a short period; the bigger picture always overrides. So although the doubling time in year 1 was very short at somewhere around 3 months, the results for the subsequent 11 years give a doubling time of 5 years.

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

User
Posted 28 May 2020 at 11:11
My dad was diagnosed at 60 and is still here at 83 living life to the full so i can understand why he has decided to put off HT for as long as possible. My husband was diagnosed at 50, had the surgery and then a recurrence 2 years later that needed RT/HT but at this point, it is like a distant bad memory and no more. If your dad has the choice of HT or nothing, the point made above (that he can start HT and then stop if he feels the side effects are too bad) is spot on.

There are lots of reasons to remain positive.

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

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User
Posted 24 May 2020 at 23:36

Dr A sounds to have been grossly negligent from what you've said. Really sorry about that.

PSMA doesn't work in everyone. You could get a second opinion on the scan. However, your PSA is high enough that it has a good chance of showing on a Choline PET scan, although I'm not sure the implications of having started HT already. It would be worth getting a nuclear (Technetium) bone scan, to see if it shows any spread to bone. CT scans and MRI scans might also show where it is such as enlarged lymph nodes and spread to bone.

I would suggest you try some more scans to find where it is before having radiotherapy. Having radiotherapy blind to the prostate bed might miss an area which would be treatable, but not after the RT as you say. Scans might show it's advanced, which which case RT is probably not appropriate, at least to the prostate bed.

User
Posted 24 May 2020 at 23:55
It would be useful to know which country you are in and to confirm that the measurement scale is the same one used in the UK - can you confirm that the PSA readings are in nanograms per millilitre or ng/ml?

The doctors can't know that the cells are in the prostate bed so they base their recommendations on years and years of experience. Almost always, if the PSA is below 0.1 6 weeks after the RP and then rises quite slowly (as happened with your dad) it indicates that some cancer cells were left behind in the prostate bed. If the PSA is above 0.2 immediately after the RP that is a strong indicator that the cancer had spread before the op was done, usually to lymph nodes or bone. If the PSA rises quickly after the op, that is also a strong indicator of spread. Your dad's PSA has taken 12 years to get to 5 so the rise is quite slow, a solid indicator of cells in the prostate bed. So all in all, Dr B is giving you his best guess based on how PSA normally behaves; RT to the prostate bed seems sensible. The fly in the ointment is the clear PSMA scan - you would expect a cancer cluster that is big enough to generate a PSA of 5 to be easily visible. However, some prostate cancers simply don't show up on scans so the doctor has to fall back on best guess based on experience.

You have a difficult choice to make as a family. Your dad is now 75. Is he fit and with good general health? How does he feel about going to hospital for daily RT for between 4 - 7 weeks? Does he understand the potential side effects and that it may be a waste of time if the cancer cells are not in the prostate bed? On the other hand, if you decide not to go for the RT you are accepting that the cancer is now incurable and he will only have hormone treatment to control it. Hormone treatment can work for many years but it doesn't work for ever; your dad and his doctor may calculate that there is a good chance of the HT lasting long enough for dad to die of something else entirely.

It is all a balance of risk.

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

User
Posted 25 May 2020 at 04:22
Unfortunately about 8% of men don't express sufficient PMSA for the scan to work and there is no guarantee that it will show up even for those that do, cancer cells sometimes being so finely spread. Being unable to see these cancer cells can also apply with MRI scans of any type for that matter regardless of whether a man expresses PSMA which is not required in other scans. But you don't know unless you have other scans. There is more chance of the cancer cells being seen as PSA increases although keep waiting for this means there is the possibility of spread further afield. RT obviously stands a better chance of damaging the DNA of cancer cells if it is directed on to them. This means the most likely area is the Prostate Bed although this is not certain and there is a limit to how far the RT can be extended to cover. So without the cancer being seen on scans, it's shooting in the dark. So it's a gamble as to whether Dad has RT now to the Prostate bed or save for use there or elsewhere when the location of the cancer can be found. Of course it could be spreading meanwhile. HT can restrain for a time and Chemo is another possibility among several to treat systemically.
Barry
User
Posted 25 May 2020 at 09:16
Thanks everyone for sharing, can't express how much I appreciate it in this very difficult time.

Hi Andy, I do hope there are ways to really detect where are the cancer cells. Probably consider seeking 2nd opinion as well as seeing an oncologist, hopefully it helps. I always find that our Dr here are not that responsive to questions and it's quite difficult to find good Dr who are kind and willing to really address all our concerns and questions.

Hi LynEyre, I'm in Malaysia and PSA measured in ng/ml. Not sure if the PSA spread is considered slow to reach 5 in 12 years, because I read a lot that the rise in initial years or months are good indicators. The doubling was quite fast from 0.1 to 0.9, it only slowed/ stagnant and recorded 1.5 in 2016, which from there on kept rising. We've also lost other important records (ie reading from the prostate removed - the cancer stage, etc, we only have the Gleason score from biopsy before RP). I'll update my profile to show the detail PSA reading.

My dad is in good health, non-smoker, no cardiovascular disease, diabetes, etc and able to move around well without aid. We really hope that we can go for a cure, but he was a little worried on RT, so do we as we're really caught in between on taking the risk of RT without knowing the exact location of the cancer. We're also unsure if we should really go for more scans in hoping that they find something.

We have this EBRT called Halcyon Radiation Therapy, not sure how good it is, but after reading the details it seems that the RT session is quick and hopefully less stressful.

Our public healthcare here is inferior compared to the UK NHS, so our only option is private hospital, which is costly as my dad doesn't have any insurance coverage. I read a lot of different types of HT in this forum which I've never heard before, my dad was only given Luclin and Eligard before. The Dr said if we opt for only HT, he will suggest Luclin but if this becomes less effective, he will need to switch to something else, and it can be very costly (about £ 1,500 per month which is a lot for Malaysia).

Hi Barry, yeah doing RT now is really shooting in the dark, and we're unsure if we do it now, we will waste the chance for RT in future as we understand that we cannot have too many RT especially in the same area. Not sure though if we can have subsequent RT on different areas.

User
Posted 25 May 2020 at 09:23
Have a look at my profile by clicking my picture. My post op psa was 1.5 sadly and then advanced very quickly also. They offered RT to the bed but said it was unlikely to cure with those numbers so I declined. I had one year of HT but hated it so we decided to find it if we could. I came off HT and let my psa rise. I had both Choline PET and PSMA PET , and neither showed anything. I decided to stay off HT and my psa is now 440. No symptoms or pains anywhere. They ‘ think’ I may have mets on my spine but the bone scan operator said she wouldn’t have noticed them had I not told her afterwards. I do have 2 lymph nodes growing in my high rear abdomen but also very slowly and quite a way off from causing me pain.
User
Posted 25 May 2020 at 10:08

Hi Chris, I read your profile after my first post yesterday. It's really troubling to not find anything from the scan while the PSA is rising high. I spent many hours trying to go through this forum as much as I could as it really gives us hope and encouragement.

You're very brave, trying to live and enjoy life to the fullest. It's quite difficult to accept this thing in you and ignore it. I do really hope that you have many great years ahead and praying that some new, more effective treatment is found in the next few years.

User
Posted 25 May 2020 at 10:12

If your dad is 75 and his doubling time is less than 12 months (from your figures I think it is) he is otherwise in good health I would seriously consider doing precisely nothing..

If you do decide on HT and it's prohibitively expensive you could consider castration, the results are just as effective as HT without the ongoing expense. It also has very few side effects (apart from the obvious!).

RT now could be seen as a shot in the dark with the potential for significant side effects.

Some tough choices and no easy answers I'm afraid but remember if your dad is enjoying his life at the mo any PC treatment may make it less so..

 

User
Posted 25 May 2020 at 10:20

Hi francij, thanks for your advice. We also hope that he continues with qualify life and do nothing but the fear of this thing growing is unbearable. Great to know that you're doing very well reading your profile. 

User
Posted 26 May 2020 at 15:21

Hi Heenan, thanks for your suggestion. We're still unsure of RT, but thinking that HT will be the minimum, as it's scary to do nothing. Is HT really that bad? We read lots of potential side effects, but also read some do better than others. We will try to seek 2nd opinion and also see some oncologists, hopefully with more feedback and info, we can make more informed decision.

User
Posted 26 May 2020 at 16:23
My dad has chosen to do nothing for the time being - at current stats his doubling time is more than 18 months so the urologist's prediction is that it will be about 25 years before it kills him so Dad's view is why affect quality of life until it is absolutely necessary. If the doubling time drops to 6 months, we will rethink.

At present, your dad's doubling time (based on the numbers you have provided) is about 31 months. RT seems quite an extreme response so do satisfy yourself that there is no financial motive for doctors encouraging him to have treatment.

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

User
Posted 26 May 2020 at 22:59
If it is decided to have HT, should the side effects become severe after say a month or two, having given the body a chance to get accustomed to it, Dad could decide to discontinue it.
Barry
User
Posted 27 May 2020 at 15:18
Lyn, if the Dr can tell us with some confidence that it takes a long time (don't have to be 25 years, I think 15 years is really good enough) before it gets serious, I think we definitely will do nothing but I think few Dr dare to give such prediction.

Dad's doubling time is slow, but it was quick 12 years ago after his surgery, so we're not sure is it safe to just consider the latest/current stats.

Barry, yeah I think if he's really doing fine with HT with little or no side effects probably it's a good option, unless it's affecting him then I think we'll have to relook at it

User
Posted 27 May 2020 at 23:19
"Dad's doubling time is slow, but it was quick 12 years ago after his surgery, so we're not sure is it safe to just consider the latest/current stats"

Doubling time can't be identified reliably by only looking at a short period; the bigger picture always overrides. So although the doubling time in year 1 was very short at somewhere around 3 months, the results for the subsequent 11 years give a doubling time of 5 years.

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

User
Posted 28 May 2020 at 05:00
Got it Lyn, hoping to stay positive and hopefully the PSA doesn't keeps doubling quickly
User
Posted 28 May 2020 at 11:11
My dad was diagnosed at 60 and is still here at 83 living life to the full so i can understand why he has decided to put off HT for as long as possible. My husband was diagnosed at 50, had the surgery and then a recurrence 2 years later that needed RT/HT but at this point, it is like a distant bad memory and no more. If your dad has the choice of HT or nothing, the point made above (that he can start HT and then stop if he feels the side effects are too bad) is spot on.

There are lots of reasons to remain positive.

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

User
Posted 28 May 2020 at 16:42

Lyn, thanks for all the encouragement. Trying our best to ensure everyone stay positive and go through this together.

 
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