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Guihan

"It must have gone metastatic"

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Guihan

Nearly 3 years after my Gleason 6 diagnosis and radical prostatectomy, my PSA started to rise again. My urologist (not a cancer specialist) pronounced that “it must have gone metastatic”. (Did he really know, or was this merely a hunch?)

I have been on intermittent ADT (one nominally 3-month insert every six months) for over 9 years. My PSA remains too low to record, and I am unaware of any particular side effects.

I am delighted with this outcome, but I keep wondering about this “metastatic” label.   On the other hand, if it is not metastatic, then what is it, and where is it?

It raises the basic question: is a urologist really qualified to declare a prostate cancer as being metastatic?

Edited by Paul Edwards
This post has been moved from a discussion on statins to form a topic of its own..

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dcmit
7 hours ago, Guihan said:

Nearly 3 years after my Gleason 6 diagnosis and radical prostatectomy, my PSA started to rise again. My urologist (not a cancer specialist) pronounced that “it must have gone metastatic”. (Did he really know, or was this merely a hunch?)

I have been on intermittent ADT (one nominally 3-month insert every six months) for over 9 years. My PSA remains too low to record, and I am unaware of any particular side effects.

I am delighted with this outcome, but I keep wondering about this “metastatic” label. On the other hand, if it is not metastatic, then what is it, and where is it?

It raises the basic question: is a urologist really qualified to declare a prostate cancer as being metastatic?

 

Have you considered a PSMA PET scan to see if you have metastatic prostate cancer?  This would be the best test I can think of.

EUSAenc The benefits of PSMA PET Scans

Edited by Paul Edwards
This post has been moved from another topic

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Guihan
4 hours ago, dcmit said:

 

Have you considered a PSMA PET scan to see if you have metastatic prostate cancer?  This would be the best test I can think of.

EUSAenc The benefits of PSMA PET Scans

Yes, I did look into the possibility of PSMA PET scans. As I recall, I was advised that my cancer levels would probably be too low to register on such scans. I seem to remember being told that I would have to let my PSA rise to at least 0.1 before they would even consider running such scans on me.

Now approaching my 80th birthday, I am content to leave those wonderful machines (and the people who operate them) to patients in greater need of them than I. If my urologist was right, I have metastatic prostate cancer, but it is so well controlled by intermittent ADT that they couldn’t even find evidence of my cancer if they tried.

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Charles (Chuck) Maack

 

Hello,

 

On the one hand you remark that “my PSA started to rise again,” then further down you remark “My PSA remains too low to record.”

If it started to rise again, from what nadir to its current level?

 

You have done very well if monotherapy with one of the LHRH agonists normal dose to last three months (22mg?) has rather been left in for six months before reinjecting another 3-month dose and again waiting six months before the next repeated injection – and successful for over 9 years.

 

It would be unlikely any physician could determine metastases without rapidly escalating PSA followed by imaging that identified location then biopsy to confirm.  And if your PSA, as you mentioned above, “remains too low to record,” I don’t know of any current imaging that would identify location unless the PSA was at least 1.0ng/ml and better yet higher.  More likely than metastases external from the prostate bed could be lymph nodes acting up that were not removed with the prostate gland.  Those may be pelvic lymph nodes since it hasn’t been until more recent years that Urologists are including extracting lymph node samples from that lower, more deeper into the pelvic area location that were not extracted in the past for pathologist check for cancer cell presence.

 

Knowing your current supposedly elevated PSA level and that level above what previous level, I would likely have a better idea whether what is occurring with you is worth worrying about or what might be considered to attend to the rise.

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Charles (Chuck) Maack

Oops,  I just "took note" that you were speaking of way back when you mentioned the PSA rise at which time the Urologist apparently prescribed the ADT.  And now you are speaking of PSA too low to read.  I suspect, then, that with this monotherapy in the manner in which you describe your ADT that it has been successful but what keeps you wondering is why the word metastatic was used by your Urologist and whether the ADT has been necessary at all.  

 

You never had a chance to find out with the move to ADT.  I guess the only way to find out is to stop the ADT altogether if you haven't done so yet.  My remarks regarding whether your Urologist could even know if metastatic are still valid.  Your Urologist at the time obviously had no idea and took the easy way for him to move you straight to ADT.  I would be interested if over the 9 years on LHRH agonist monotherapy you ever had your testosterone level determined and if the manner in which you practiced your ADT kept the testosterone level down to or below 20ng/dl, and consequently also lack of sexual interest, inability for natural erectile function.  Of course I would also be interested that with stopping ADT you have a testosterone rise into near normal level for your age (400ng/dl and higher) and if with a testosterone level rise your PSA experiences any significant rise.  If the PSA does show significant rise due to testosterone return you can return to your LHRH agonist monotherapy which we would hope continues to be effective of if very slow but continuing PSA rise, see if being prescribed the 5AR inhibitor dutasteride/Avodart at 0.5mg daily - and maybe accompanied by Metformin at one 500mg in the morning and one at night stop the rise in its tracks.  If trying Metformin, important to purchase some Vitamin B12 taking one tablet daily.  Avodart explained here:  http://tinyurl.com/74bkzam and Metformin explained here.

 

Sorry I misread your post.

Edited by Paul Edwards
Material re metformin has been placed in a separate linked post

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Bruce Kynaston

Guihan,

It saddens me that so many are going straight to ADT when PSA rises after an attempt at cure by surgery. In the absence of symptoms, I feel there is no hurry. 

Personally, I am 20 years after radiotherapy for my Gleason 5 PCa with Gleason 9 cancer found at TURP for flow problems. I opted for watchful waiting as I have no symptoms to ease and my oncologists (urologist, medical and radiation ) agree.

i have heard of too many complaining of symptoms of hormone suppression.

in the event of a symptom that can be attributed to cancer, I shall change my mind.

I realise this hardly answers your question, but a raised PSA usually means cancer is lurking somewhere new.

best wishes,

Bruce.

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Guihan
On ‎01‎/‎11‎/‎2016 at 3:06 AM, Charles (Chuck) Maack said:

 

 

Hello,

 

 

 

On the one hand you remark that “my PSA started to rise again,” then further down you remark “My PSA remains too low to record.”

 

If it started to rise again, from what nadir to its current level?

 

 

 

You have done very well if monotherapy with one of the LHRH agonists normal dose to last three months (22mg?) has rather been left in for six months before reinjecting another 3-month dose and again waiting six months before the next repeated injection – and successful for over 9 years.

 

 

 

It would be unlikely any physician could determine metastases without rapidly escalating PSA followed by imaging that identified location then biopsy to confirm.  And if your PSA, as you mentioned above, “remains too low to record,” I don’t know of any current imaging that would identify location unless the PSA was at least 1.0ng/ml and better yet higher.  More likely than metastases external from the prostate bed could be lymph nodes acting up that were not removed with the prostate gland.  Those may be pelvic lymph nodes since it hasn’t been until more recent years that Urologists are including extracting lymph node samples from that lower, more deeper into the pelvic area location that were not extracted in the past for pathologist check for cancer cell presence.

 

 

 

Knowing your current supposedly elevated PSA level and that level above what previous level, I would likely have a better idea whether what is occurring with you is worth worrying about or what might be considered to attend to the rise.

 

Actually, my post-op. PSA history was more complex. It was nearly three years before the PSA began to rise. It then took over three more years to climb from 0.2 to 0.8. I was then given a 3-month ADT (Zoladex) implant, then a second implant three months later. My PSA then fell quite rapidly to <0.01.

The urologist’s strategy was to then to wait to see what happened. The cycle of rising PSA, followed by two 3-month ADT implants in tandem, was repeated a further three times.

By April 2010, my careful records had enabled me to calculate the doubling time of my cancer and the halving time of the ADT implants. I also had information to the effect that metastasis was strongly linked to PSA levels. I had, by then, discontinued seeing my urologist, largely because he had told me “I will look after you until you are 75. After that, you are on your own”.

I calculated that my PSA would be better contained by changing my treatment cycle. My graphs and calculations told me that, if I had just a single 3-month Zoladex implant every 24 weeks (roughly six months), my PSA would continue to fall slowly. I also felt that I would benefit by those 3-month breaks from ADT therapy. A cancer specialist was consulted, and he endorsed my treatment plan, provided I kept working with my GP.

My PSA has not risen to a recordable level for over four years. Maybe I am just lucky, but I think that patients can sometimes benefit from playing a greater part in deciding their treatment strategy.

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