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The saga continues....

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User
Posted 25 Mar 2017 at 16:57

Hi Everyone.....I've commented on my journey before but have fresh news about the latest position...

to recap...

RP on 2/11/16

PSA after surgery at 6 weeks.......2.9 !!

PSA after surgery at 9 weeks.......2.5

PSA after surgery at 15 weeks still 2.5 ...

Histology showed all cancer within the Prostate with negative margins....

2 Removed Lymph nodes were clear..

Removed Seminal Vessels were clear....

All MRI, CT scans and Bone X rays show nothing....

Seeing the Urologist again next Tuesday when wee will discuss.....he is a bit baffled...

Arranging a PET scan next...

My analysis is that for there to be PSA so high straight after surgery then I must have a significant presence of cancer cells somewhere in my

body or......

(and I found this out a couple of days ago from 2 case histories in the USA.....)

The surgery didn't remove 100% of my prostate .....it left some of it still in situ....possibly/probably healthy tissue and that is generating the PSA....

any other experiences out there like mine please?....

I feel 100% well, incontinence has stopped...ED of course but otherwise all ok in all respects....

Cheers, Paul....

 

 

User
Posted 25 Mar 2017 at 18:34

Paul, you had negative margins so the entire prostate gland was in the pathology lab and even if a small bit of the gland had been left behind it would have to be a pretty big bit to generate the same amount of PSA as a healthy man your age with all bits intact!

If the next PET scan is clear I would want them to check your adrenal & pituitary gland and also for breast cancer?

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

User
Posted 25 Mar 2017 at 19:15

Not surprised your urologist is a bit baffled. I would ask if you could have the very best scan, if this is not what has been planned though even this may not show a suspicious area. I am not suggesting this is the reason but you could also ask if some cancer cells might have escaped elsewhere in your blood.. Sometimes these can conveniently be dealt with by RT but if spread more widely a whole body treatment might be suggested such as HT or Chemo. But let's hope it has not come to that. and that your urologist can find and deal individually with any suspicious area should this be deemed necessary.

Barry
User
Posted 25 Mar 2017 at 20:43

Hi Paul
Your scenario is very similar to mine. I'm due a second PET scan in 3 weeks. My post op result was 2.4 after twelve weeks. In my case they are baffled too , even though I had 5 cancerous lymphs and positive margins on my bladder. They feel I have further spread than that.
Interesting what Lyn said --- during CT scans they found an adrenal tumor but said it was clear after tests. Also I have had pituitary problems and a scan that showed a tiny tiny lump , but they said that was clear too. I honestly don't know anymore if notes get looked at or tied up , but I do feel there may be some link here.
I wish you all the best

Edited by member 25 Mar 2017 at 20:46  | Reason: Not specified

User
Posted 26 Mar 2017 at 08:51

I have had 3 sets of bloods and 3 sets of 24hr urine tests done and they insist that the 2cm lump is benign and non functioning. I asked if it could be creating the psa and it was a very clear no. They were only concerned about excess cortisone and adrenaline etc. Where does the pituitary tie in with psa ?
Thanks

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User
Posted 25 Mar 2017 at 18:34

Paul, you had negative margins so the entire prostate gland was in the pathology lab and even if a small bit of the gland had been left behind it would have to be a pretty big bit to generate the same amount of PSA as a healthy man your age with all bits intact!

If the next PET scan is clear I would want them to check your adrenal & pituitary gland and also for breast cancer?

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

User
Posted 25 Mar 2017 at 19:15

Not surprised your urologist is a bit baffled. I would ask if you could have the very best scan, if this is not what has been planned though even this may not show a suspicious area. I am not suggesting this is the reason but you could also ask if some cancer cells might have escaped elsewhere in your blood.. Sometimes these can conveniently be dealt with by RT but if spread more widely a whole body treatment might be suggested such as HT or Chemo. But let's hope it has not come to that. and that your urologist can find and deal individually with any suspicious area should this be deemed necessary.

Barry
User
Posted 25 Mar 2017 at 20:43

Hi Paul
Your scenario is very similar to mine. I'm due a second PET scan in 3 weeks. My post op result was 2.4 after twelve weeks. In my case they are baffled too , even though I had 5 cancerous lymphs and positive margins on my bladder. They feel I have further spread than that.
Interesting what Lyn said --- during CT scans they found an adrenal tumor but said it was clear after tests. Also I have had pituitary problems and a scan that showed a tiny tiny lump , but they said that was clear too. I honestly don't know anymore if notes get looked at or tied up , but I do feel there may be some link here.
I wish you all the best

Edited by member 25 Mar 2017 at 20:46  | Reason: Not specified

User
Posted 26 Mar 2017 at 02:25

My worry is always that they might say they are 'baffled' because they can't face up to the possibility that their surgery failed :-(

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

User
Posted 26 Mar 2017 at 02:26

That's really interesting CJ ... perhaps you don't have mets after all?

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

User
Posted 26 Mar 2017 at 08:50

Originally Posted by: Online Community Member
Paul, you had negative margins so the entire prostate gland was in the pathology lab and even if a small bit of the gland had been left behind it would have to be a pretty big bit to generate the same amount of PSA as a healthy man your age with all bits intact! If the next PET scan is clear I would want them to check your adrenal & pituitary gland and also for breast cancer?

 

Hi Lyn...will have to see what he says...my prostate was pretty big....4 times the normal size and virtually cancer free on the right side....

so if he left a chunk from that area it might be big enough...maybe not....got to be a reason somewhere...

I'm fairly calm about it all as getting worked up or anxious won't achieve anything and sometimes I wonder whether it's best to carry on

regardless and ignore the whole thing completely.....

 

 

User
Posted 26 Mar 2017 at 08:51

I have had 3 sets of bloods and 3 sets of 24hr urine tests done and they insist that the 2cm lump is benign and non functioning. I asked if it could be creating the psa and it was a very clear no. They were only concerned about excess cortisone and adrenaline etc. Where does the pituitary tie in with psa ?
Thanks

User
Posted 26 Mar 2017 at 16:15

Hi
Did you have robotic surgery?
Please excuse my ignorance but I'd of thought they'd know they've got it all out!!
All the best to you'll get great support here

 
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