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Is HT my only option?

User
Posted 10 Apr 2020 at 09:02

I am 7 years post RP and 3 years post salvage RT following a G9/T3 diagnosis in March 2013. My PSA has been rising slowly over the years but more than doubled from 0.18 to 0.44 over the past 6 months. My oncologist has always referred to HT as the next step but has said this will be delayed until my PSA has reached 10. 

I have read that PSMA - PET/CT scans can be used to detect where small levels of cancer cells are in the body and this information can then be used for targeted surgery or RT (although I have been told that I can't have more RT to the prostate bed). I am keen to be explore options rather than wait for the inevitable HT treatment so does anyone have any knowledge or experience of alternative treatment pathways that I could discuss with my oncologist?

Thank you. 

User
Posted 11 Apr 2020 at 11:47

I agree with everything that has been said about PSMA scans and low PSA readings.  However, like most things in life, there are exceptions.  My post-prostatectomy PSA rose from 0.014 to 0.023 in the space of the first year.  My oncologist recommended a PSMA scan.  She warned me I might be wasting my money (£2600).  The scan found cancer in some lymph nodes local to the prostate bed and these were treated in my salvage radiotherapy.  I finished 18 months of bicalutimide in August 2019.  I took this before, during and after radiotherapy.  My PSA is now <0.006.  

Everyone was surprised the PSMA scan picked something up.  The area where the cancer was found was treated. It had not been included in my original radiotherapy plan.

Maybe I’m the exception to the rule, but it did make a difference for me.

Ulsterman

User
Posted 11 Apr 2020 at 10:05

Andrew

Somebody pointed me in the direction of a site called practice update, you may have to register to access articles and set preferences to prostate cancer. 

The following popped up the other day. https://www.practiceupdate.com/content/phenelzine-in-biochemical-recurrent-prostate-cancer/98071

A very small study and like many ideas may come to nothing, but at least people are trying to find treatments.

Thanks Chris

User
Posted 10 Apr 2020 at 14:41

Andrew 

Apart from being 6 years post op I am in the same place as you. My onco nurse has said they will wait until PSA gets above 1 before trying scans.

Look forward to seeing what answers you get .

Thanks Chris

 

User
Posted 10 Apr 2020 at 14:48
I doubt very much you will be offered a PSMA scan with your PSA as low as it is as it is very unlikely to show any disposition of cancer concentration. If you wanted to pay for the scan (circa £2600) in the UK you would most probably have to be referred by a consultant as PSMA scans in the UK are limited due to availability. HT is a possibility at some stage and here you will find Consultants have different views as to a starting PSA point. There are other options such as Chemo (not advisable unless essential with current virus situation due to weakening immune system) and there are other possibilities generally used further down the line. I would ask your Oncologist what he /she suggests in your individual case. You could obtain a second opinion if you have concerns about what your normal oncologist has suggested.
Barry
User
Posted 10 Apr 2020 at 15:24

I would push for a PSMA PET scan, but like Barry says, the sooner you do it, the less chance there is of finding it, and ideally you want to do it before starting on hormone therapy, as that also reduces the chances of the scan finding it. On the other hand with G9, you don't want to hang around too long without treatment, as the chance of a curative treatment (if that's available at all) will reduce over time. It's a balancing act.

If a scan shows the growth is in a small number of lymph nodes outside of the previous treatment area, then you might be able to have Cyberknife or other highly directed radiotherapy treatment, without exceeding max lifetime RT dose in any area.

In normal times, I might suggest referral to Mount Vernon if your hospital doesn't have those facilities, because Mount Vernon do PSMA PET scans and Cyberknife on the NHS. Newer PSMA scans can work down to a PSA of 0.2, but 0.5 is the usual minimum, although it's a chance thing. For a standard Choline PET scan, they'll probably want you to have a PSA nearer 2 to have a reasonable chance of finding where it is. I have no idea what's happening at Mount Vernon during COVID-19 though.

User
Posted 10 Apr 2020 at 17:35
I’m 5 yrs post op in June and have resisted any further treatment at all. After 6 monthly scans they have at last seen minor spread to bone and lymphs. And that was with a psa around 300.

I know I’m an odd case but I simply don’t want further treatment till I feel ill. I feel tip top , I’m working , sexual function 90% , bladder 100% , holidaying as much as possible etc etc. The start of HT will be a mental disaster for me and possibly the end of life in my mind anyway , so I’m avoiding it at all costs at the age of 52. I’m incurable full stop , and I’m full of fight , but I’m not having my last years wrecked by HT.

If life gives you lemons , then make lemonade

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User
Posted 10 Apr 2020 at 14:41

Andrew 

Apart from being 6 years post op I am in the same place as you. My onco nurse has said they will wait until PSA gets above 1 before trying scans.

Look forward to seeing what answers you get .

Thanks Chris

 

User
Posted 10 Apr 2020 at 14:48
I doubt very much you will be offered a PSMA scan with your PSA as low as it is as it is very unlikely to show any disposition of cancer concentration. If you wanted to pay for the scan (circa £2600) in the UK you would most probably have to be referred by a consultant as PSMA scans in the UK are limited due to availability. HT is a possibility at some stage and here you will find Consultants have different views as to a starting PSA point. There are other options such as Chemo (not advisable unless essential with current virus situation due to weakening immune system) and there are other possibilities generally used further down the line. I would ask your Oncologist what he /she suggests in your individual case. You could obtain a second opinion if you have concerns about what your normal oncologist has suggested.
Barry
User
Posted 10 Apr 2020 at 15:17
With a PSA of 0.44, it's extremely unlikely that any scan would be able to detect mets; they'll still be microscopic and hence too small to see.

Best wishes,

Chris

User
Posted 10 Apr 2020 at 15:24

I would push for a PSMA PET scan, but like Barry says, the sooner you do it, the less chance there is of finding it, and ideally you want to do it before starting on hormone therapy, as that also reduces the chances of the scan finding it. On the other hand with G9, you don't want to hang around too long without treatment, as the chance of a curative treatment (if that's available at all) will reduce over time. It's a balancing act.

If a scan shows the growth is in a small number of lymph nodes outside of the previous treatment area, then you might be able to have Cyberknife or other highly directed radiotherapy treatment, without exceeding max lifetime RT dose in any area.

In normal times, I might suggest referral to Mount Vernon if your hospital doesn't have those facilities, because Mount Vernon do PSMA PET scans and Cyberknife on the NHS. Newer PSMA scans can work down to a PSA of 0.2, but 0.5 is the usual minimum, although it's a chance thing. For a standard Choline PET scan, they'll probably want you to have a PSA nearer 2 to have a reasonable chance of finding where it is. I have no idea what's happening at Mount Vernon during COVID-19 though.

User
Posted 10 Apr 2020 at 17:35
I’m 5 yrs post op in June and have resisted any further treatment at all. After 6 monthly scans they have at last seen minor spread to bone and lymphs. And that was with a psa around 300.

I know I’m an odd case but I simply don’t want further treatment till I feel ill. I feel tip top , I’m working , sexual function 90% , bladder 100% , holidaying as much as possible etc etc. The start of HT will be a mental disaster for me and possibly the end of life in my mind anyway , so I’m avoiding it at all costs at the age of 52. I’m incurable full stop , and I’m full of fight , but I’m not having my last years wrecked by HT.

If life gives you lemons , then make lemonade

User
Posted 10 Apr 2020 at 18:07
I know that HT is something you REALLY don’t want, Chris, but it is worth noting that many of us here (me included) have had HT with few side-effects. One shouldn’t assume it’s always going to be awful; for many men it simply isn’t!

Very best wishes,

Chris

User
Posted 10 Apr 2020 at 18:23

Hormone therapy isn't a big deal for me either - I've been on it for 20 months so far.

I know it is for some people, but you could try it, and bail out if you find it's a significant issue.

One thing that may have reduced its impact for me is that I do keep up a good level of exercise (and one very nice side effect of HT is I have no body odor and don't need to use any deodorants, which is certainly not the case when I'm not on HT).

User
Posted 11 Apr 2020 at 10:05

Andrew

Somebody pointed me in the direction of a site called practice update, you may have to register to access articles and set preferences to prostate cancer. 

The following popped up the other day. https://www.practiceupdate.com/content/phenelzine-in-biochemical-recurrent-prostate-cancer/98071

A very small study and like many ideas may come to nothing, but at least people are trying to find treatments.

Thanks Chris

User
Posted 11 Apr 2020 at 11:47

I agree with everything that has been said about PSMA scans and low PSA readings.  However, like most things in life, there are exceptions.  My post-prostatectomy PSA rose from 0.014 to 0.023 in the space of the first year.  My oncologist recommended a PSMA scan.  She warned me I might be wasting my money (£2600).  The scan found cancer in some lymph nodes local to the prostate bed and these were treated in my salvage radiotherapy.  I finished 18 months of bicalutimide in August 2019.  I took this before, during and after radiotherapy.  My PSA is now <0.006.  

Everyone was surprised the PSMA scan picked something up.  The area where the cancer was found was treated. It had not been included in my original radiotherapy plan.

Maybe I’m the exception to the rule, but it did make a difference for me.

Ulsterman

User
Posted 11 Apr 2020 at 14:18

There was a trial where people about to undergo salvage radiotherapy were given a PSMA PET scan. If I recall correctly, 40% of them had their radiotherapy plans changed as a result of the PSMA PET scans. It should become the norm to have PET scans done before salvage radiotherapy, not the exception.

 
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