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3,5 years after diagnosis

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User
Posted 21 Jun 2021 at 14:59

All,

Here is an update of my situation as I regular do. This time facing the ordeal again.

3 year and 2 months ago I had surgery to remove my prostate. PSA has been quite low since then of around 0.03, but in April 2020 PSA started increasing slowly till last week that I got 0.25.

I haven't been kept still for a year already ... I paid visits to 3 different doctors and all 3 pushed back that my levels were low and that I shouldn't do anything yet. However when it reached 0.13 I changed doctor (to an oncologist) and she started investigated and made me do a PET scan (galio68) and a MRI to rule out some doubts of the Pet scan. Both results came out clean for the whole body except for a small anyway inconclusive area around the penis bulb, but either exams were not matching on that inconclusive area.

So the doctor initially wanted to radiate the prostate bed, but changed her mind after the exams not being clear and asked me to wait some time more till PSA reaches eventually 0.25. She said a multidisciplinary team in the hospital were all united on this assessment. Anyway Bingo! I got it last week to 0.25.

I know that the odds of doing anything will be less successful as PSA increases and this is getting me nervous ... but having found a lighted area in the penis even if the the bottom of the penis makes me anxious.

In the meantime my doctor is assessing with a radiologist what to do. Apparently to do another PET will have to wait till August as I did one in February, but I have enough criteria to have the prostate bed radiated anyway. 

Any comments? Really appreciate a feedback.

Paulo

Edited by member 21 Jun 2021 at 15:34  | Reason: Not specified

User
Posted 22 Jun 2021 at 15:40
I think you’re doing the right thing Chris. You know my story inside out I guess. The only reason I started HT was basically because I was told I’d be VERY poorly in 12 months if I didn’t do it now. I’m nearly 6 months in and PSA in a couple of weeks. It ain’t all good but no way near as bad as I thought it would be. Remember my psa at start was 990 mind 😬
User
Posted 22 Jun 2021 at 18:20
Confusing isn't it Paulo, I am 6 years since RP, last test was 0.1 followed immediately by a <0.1 so I am back on 3 monthly tests 2 years after going to annual.

Previous chats to urologists have advised waiting until you can see it, but the onco I saw this time said treat it blind Inc lymph nodes as soon as it goes over 0.1.

I have a great life again I will be very reluctant to play Russian roulette with a photon generator!

I am very tempted to simply stop being tested and face the consequences.

User
Posted 22 Jun 2021 at 11:16

Hi Paulo,

I can't offer much help, I'm mainly posting to bump the post up to the top so others see it.

There is a lot of sense in the philosophy of don't treat it til we know what we are treating, so that implies wait till it shows up on a scan.

Another option is, we know it is somewhere it is most likely in the prostate bed, so last just blast it anyway. If it has already started to metastise then maybe we are too late, but we tried anyway.

I think that with the effects of RT not being too bad in my opinion I would probably go for the early RT.

But I really can not claim to have any more knowledge or insight than you already have. 

Dave

User
Posted 22 Jun 2021 at 14:00

Paulo 

I don't know where everyone has gone. I can give you my experience having been in a similar situation, but it is rather negative. Just to note I had positive margins and extraprostatic extension.

About three years post surgery my PSA went over 0.2, there was lots of talk on here about having the more sensitive scans, my oncologist refused saying the were for the future. When I asked about SRT to the prostate bed without evidence, he said it was a very educated guess based on years of experience. After SRT it my PSA dropped from 0.27 to 0.08 then to 0.04 Did that mean there was some cells outside the bed or they didn't get all of the cells in the prostate bed.

After the drop to 0.04 it has steadily risen over the last four years to around 0.63.

The salvage RT didn't do me any favours but the adverse effects I have only happen to around 5 percent of guys receiving SRT, my surgeon did have numerous excursions into my bladder. I do cope with the effects and I am still here. I didn't have HT with my SRT. I was told that if cells were found in the prostate bed and outside the prostate bed SRT would not happen.

Things have progressed in the last few years and I have seen where guys get local treatment to two or three areas if detected.

Sounds like you are in good hands, 

Hope all goes well.

Thanks Chris

 

 

 

 

Edited by member 22 Jun 2021 at 17:51  | Reason: Not specified

User
Posted 22 Jun 2021 at 14:21

Thanks Chris,

Your doctor was right, wasn't he? After all and without any exam, the RT was a success in a way and made PSA to drop and hold it low for some time. I understood that there might be always some prostate cells in our body as in a certain prostate area the gland is not really a closed organ and "mingles" with the area. 

Aren't you doing any exam now?

Take care, Paulo

User
Posted 22 Jun 2021 at 14:55

Paulo

I really do not want to have HT, I know some guys get away without any side effects. I am currently on a vaccine trial so will get blood tests and scans. If the PSA rises too much I may need to have HT. 

Thanks Chris

 

 

User
Posted 29 Jun 2021 at 20:49

31/07/2019 PSA 0.03

07/07/2020 PSA 0.06

03/12/2020 PSA 0.13

16/06/2021 PSA 0.25

Hi Paulo,

You seem to be on a good track of treatment, for what it's worth the below are my thoughts although maybe you've already considered most of it.

You've had an amazing number of psa tests and it has never been stable.  Although most of us would not know results below <0.05 or <0.1 in many cases.   So for 2yrs up to 7th July 2020 you would likely not have known there was a problem in the UK health service.

I posted the above psa results as they are the approximate doubling dates which was 12months, 6months, 6 months apart.  Although it is a bit erratic.   Doubling under 6 months has some significance for treatment I believe.

Some say wait until the psa gets to between 10 and 20 before treatment, if it kept doubling every 6 months that would be mid 2024.   You are getting quicker treatment.   That would be my thoughts too.   The Gleason of 4+4 is the same as mine was and I think it leans to being cautious.

You seem to be getting good care so all the best,  Peter

User
Posted 29 Jun 2021 at 21:13

Originally Posted by: Online Community Member
Some say wait until the psa gets to between 10 and 20 before treatment, if it kept doubling every 6 months that would be mid 2024. You are getting quicker treatment.

This relates to men who have had primary and salvage treatment and are now incurable and facing lifelong HT; it shouldn't apply to a man that hasn't yet had salvage treatment and / or is not known to have advanced prostate cancer. 

 

Paulo, your initial low PSA readings with a slow but steady rise over time are typical of cancer left in the prostate bed - the 1mm positive margin noted after your op would support this. Hopefully, the penis bulb turns out to be a red herring and you can get on with salvage RT which is successful. 

Edited by member 29 Jun 2021 at 23:22  | Reason: Not specified

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

User
Posted 29 Jun 2021 at 23:59

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Hopefully, the penis bulb turns out to be a red herring

I had to look up the term "red herring" as didn't get it :-). Hope so, this is my feeling at the same time!

Wow, if you take it literally that would be a lot more worrying than any medical condition I have read about on this forum. Lol

Edited by member 30 Jun 2021 at 00:01  | Reason: Not specified

Dave

User
Posted 30 Jun 2021 at 00:35

Originally Posted by: Online Community Member

Thanks Lyn,

I had to look up the term "red herring" as didn't get it :-). Hope so, this is my feeling at the same time!

Sorry Paulo, I forgot that English isn't your first language and you might not be familiar with our strange little sayings!

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

User
Posted 03 Jul 2021 at 06:13
TFFT! Can't think a radioactive "knob" would have been much fun!
Show Most Thanked Posts
User
Posted 22 Jun 2021 at 11:16

Hi Paulo,

I can't offer much help, I'm mainly posting to bump the post up to the top so others see it.

There is a lot of sense in the philosophy of don't treat it til we know what we are treating, so that implies wait till it shows up on a scan.

Another option is, we know it is somewhere it is most likely in the prostate bed, so last just blast it anyway. If it has already started to metastise then maybe we are too late, but we tried anyway.

I think that with the effects of RT not being too bad in my opinion I would probably go for the early RT.

But I really can not claim to have any more knowledge or insight than you already have. 

Dave

User
Posted 22 Jun 2021 at 11:25

Thanks Dave, I am having an appointment with the radiologist. Let's see what they say.

User
Posted 22 Jun 2021 at 14:00

Paulo 

I don't know where everyone has gone. I can give you my experience having been in a similar situation, but it is rather negative. Just to note I had positive margins and extraprostatic extension.

About three years post surgery my PSA went over 0.2, there was lots of talk on here about having the more sensitive scans, my oncologist refused saying the were for the future. When I asked about SRT to the prostate bed without evidence, he said it was a very educated guess based on years of experience. After SRT it my PSA dropped from 0.27 to 0.08 then to 0.04 Did that mean there was some cells outside the bed or they didn't get all of the cells in the prostate bed.

After the drop to 0.04 it has steadily risen over the last four years to around 0.63.

The salvage RT didn't do me any favours but the adverse effects I have only happen to around 5 percent of guys receiving SRT, my surgeon did have numerous excursions into my bladder. I do cope with the effects and I am still here. I didn't have HT with my SRT. I was told that if cells were found in the prostate bed and outside the prostate bed SRT would not happen.

Things have progressed in the last few years and I have seen where guys get local treatment to two or three areas if detected.

Sounds like you are in good hands, 

Hope all goes well.

Thanks Chris

 

 

 

 

Edited by member 22 Jun 2021 at 17:51  | Reason: Not specified

User
Posted 22 Jun 2021 at 14:21

Thanks Chris,

Your doctor was right, wasn't he? After all and without any exam, the RT was a success in a way and made PSA to drop and hold it low for some time. I understood that there might be always some prostate cells in our body as in a certain prostate area the gland is not really a closed organ and "mingles" with the area. 

Aren't you doing any exam now?

Take care, Paulo

User
Posted 22 Jun 2021 at 14:55

Paulo

I really do not want to have HT, I know some guys get away without any side effects. I am currently on a vaccine trial so will get blood tests and scans. If the PSA rises too much I may need to have HT. 

Thanks Chris

 

 

User
Posted 22 Jun 2021 at 15:40
I think you’re doing the right thing Chris. You know my story inside out I guess. The only reason I started HT was basically because I was told I’d be VERY poorly in 12 months if I didn’t do it now. I’m nearly 6 months in and PSA in a couple of weeks. It ain’t all good but no way near as bad as I thought it would be. Remember my psa at start was 990 mind 😬
User
Posted 22 Jun 2021 at 18:20
Confusing isn't it Paulo, I am 6 years since RP, last test was 0.1 followed immediately by a <0.1 so I am back on 3 monthly tests 2 years after going to annual.

Previous chats to urologists have advised waiting until you can see it, but the onco I saw this time said treat it blind Inc lymph nodes as soon as it goes over 0.1.

I have a great life again I will be very reluctant to play Russian roulette with a photon generator!

I am very tempted to simply stop being tested and face the consequences.

User
Posted 22 Jun 2021 at 21:51

Hi Francij1,

Thanks for your comment. Yes very confusing. When you think exams can rule out doubts ... apparently sometimes they even create them.

I have my appointment with the radiologist next Monday. In my case with a recurrence I surely need to have a look at options, because this is not sorted out by itself.

At this stage, like you, I felt I had control of my life again, but we realize how things are so fragile. But ok, I need to move ahead and be positive. There are still options for a cure!

As for you, crossing fingers you stay at < 0.1 :-) I am not certain doing nothing would be a good choice, but you aren't even there. Enjoy.

, 

User
Posted 28 Jun 2021 at 22:10

All, I had the appointment with the radiologist as expected today. I am doing a pet scan again next Wednesday and I am targeted to have radiotherapy latest starting on July the 12th. The new PET serves to rule out the inconclusive areas highlighted in the previous one. She explained they haven’t seen too often or seldom areas as such that are highlighted in the scan, thus the check.

Thanks for all your support and feedback.

User
Posted 29 Jun 2021 at 20:49

31/07/2019 PSA 0.03

07/07/2020 PSA 0.06

03/12/2020 PSA 0.13

16/06/2021 PSA 0.25

Hi Paulo,

You seem to be on a good track of treatment, for what it's worth the below are my thoughts although maybe you've already considered most of it.

You've had an amazing number of psa tests and it has never been stable.  Although most of us would not know results below <0.05 or <0.1 in many cases.   So for 2yrs up to 7th July 2020 you would likely not have known there was a problem in the UK health service.

I posted the above psa results as they are the approximate doubling dates which was 12months, 6months, 6 months apart.  Although it is a bit erratic.   Doubling under 6 months has some significance for treatment I believe.

Some say wait until the psa gets to between 10 and 20 before treatment, if it kept doubling every 6 months that would be mid 2024.   You are getting quicker treatment.   That would be my thoughts too.   The Gleason of 4+4 is the same as mine was and I think it leans to being cautious.

You seem to be getting good care so all the best,  Peter

User
Posted 29 Jun 2021 at 21:13

Originally Posted by: Online Community Member
Some say wait until the psa gets to between 10 and 20 before treatment, if it kept doubling every 6 months that would be mid 2024. You are getting quicker treatment.

This relates to men who have had primary and salvage treatment and are now incurable and facing lifelong HT; it shouldn't apply to a man that hasn't yet had salvage treatment and / or is not known to have advanced prostate cancer. 

 

Paulo, your initial low PSA readings with a slow but steady rise over time are typical of cancer left in the prostate bed - the 1mm positive margin noted after your op would support this. Hopefully, the penis bulb turns out to be a red herring and you can get on with salvage RT which is successful. 

Edited by member 29 Jun 2021 at 23:22  | Reason: Not specified

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

User
Posted 29 Jun 2021 at 23:44

Thanks Peter,

I have a G8 indeed which is aggressive and the doubling time of around 6 months as you mentioned has also been referred to the doctor. This is why I have kept vigilance on the PSAs, but for some time I had doctors wanting to wait for the following test.

As Lyn said I cannot wait as my situation is other as a non curative treatment case, I am still aiming for a "cure". So ok now :-)  I see things moving. I am doing another PET tomorrow and the radiotherapy treatments have been requested to the insurance for approval and are scheduled to start from next week Monday till July the 12th the latest. 

Paulo

 

User
Posted 29 Jun 2021 at 23:48

Thanks Lyn,

I had to look up the term "red herring" as didn't get it :-). Hope so, this is my feeling at the same time!

User
Posted 29 Jun 2021 at 23:59

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Hopefully, the penis bulb turns out to be a red herring

I had to look up the term "red herring" as didn't get it :-). Hope so, this is my feeling at the same time!

Wow, if you take it literally that would be a lot more worrying than any medical condition I have read about on this forum. Lol

Edited by member 30 Jun 2021 at 00:01  | Reason: Not specified

Dave

User
Posted 30 Jun 2021 at 00:35

Originally Posted by: Online Community Member

Thanks Lyn,

I had to look up the term "red herring" as didn't get it :-). Hope so, this is my feeling at the same time!

Sorry Paulo, I forgot that English isn't your first language and you might not be familiar with our strange little sayings!

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

User
Posted 30 Jun 2021 at 19:12

No worries Lyn, always learning :-)

User
Posted 02 Jul 2021 at 11:15

All,

Heads-up on this initial post. The new PET, there are good news regarding the bulb that is now not highlighted in the scan. Therefore this area can be omitted from the RT treatment field.

All was clean by the way.

User
Posted 03 Jul 2021 at 06:13
TFFT! Can't think a radioactive "knob" would have been much fun!
 
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