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Still baffled......

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User
Posted 30 May 2017 at 21:12

Hi All, moving to a new stage in treatment....RP in Nov 2016....PSA still 2.9, 8 weeks after surgery.....had every scan and test known and no sign of anything going on over the last few months

My Histology showed the cancer within the capsule, with negative margins and clear seminal vessells and lymph nodes...

PSA last week was 2.8....

Urologist's team are baffled by my case and today the Oncologist has requested a meeting to discuss progressing on a worst case scenario to be on the safe side...even without any evidence of what we treating....

My Urologist said that probably a course of RT and Hormone ADT would be recommended and see where it takes us.....

I feel that I have no option other than to go ahead ......in all other respects I am totally fit and well.....including regaining my continence...

anyone else been down this road please?....

Thanks, Paul.....

 

 

 

 

 

 

 

User
Posted 31 May 2017 at 08:14

Paul, see Chris J's recent threads - he is in a very similar situation and saw a new onco last Friday who agreed that RT would probably be pointless.

PSA of 2.8 is perhaps too high to simply be cells left in the prostate bed so you could be risking all the side effects of RT for nothing. You say you have had every scan going - have you had a PSMA scan or FACBC? If not, it may be worth asking the onco to refer you to one of the hospitals trialling these?

Edited by member 31 May 2017 at 08:19  | Reason: Not specified

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

User
Posted 31 May 2017 at 18:31

Hi Paul
Sorry to hear your news. Even more baffling with negative margins and no lymph involvement. I genuinely wonder if some men excrete higher psa or something causes it. At least I have a reason for higher psa with bladder margins and lymphs involved , yet still not willing to undo all the recovery I have by undergoing RT. Saw my Onco today and he was happy with my decision totally.

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User
Posted 31 May 2017 at 08:14

Paul, see Chris J's recent threads - he is in a very similar situation and saw a new onco last Friday who agreed that RT would probably be pointless.

PSA of 2.8 is perhaps too high to simply be cells left in the prostate bed so you could be risking all the side effects of RT for nothing. You say you have had every scan going - have you had a PSMA scan or FACBC? If not, it may be worth asking the onco to refer you to one of the hospitals trialling these?

Edited by member 31 May 2017 at 08:19  | Reason: Not specified

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

User
Posted 31 May 2017 at 18:31

Hi Paul
Sorry to hear your news. Even more baffling with negative margins and no lymph involvement. I genuinely wonder if some men excrete higher psa or something causes it. At least I have a reason for higher psa with bladder margins and lymphs involved , yet still not willing to undo all the recovery I have by undergoing RT. Saw my Onco today and he was happy with my decision totally.

User
Posted 21 Jun 2017 at 06:24

I saw the Oncologist this week for the first time and he again is mystified by my case......'rare' he said.....

Options given were...
1) 33 sessions of RT to the Prostate Bed area to attack any cancer cells that may be lurking......

2) HT course

3) Do nothing

I have been booked in for another full Bone Scan, Pelvic Area MRI and PSA test.....

If the scans are clear, and my PSA is still below 3.....it was 2.8 after the surgery 7 months ago I have decided to do nothing.

RT seems foolhardy to take all the risks of damage to the bladder & bowel...and all on a gamble with no evidence...

If my PSA hasn't increased then at least whatever the reason it isn't getting worse....

If my PSA has increased then I will start the HT course and see how things go.....

I am still not totally convinced that the Resection of my Prostate wasn't incomplete......they say not but only after pushing them and they have changed their opinion over the last few months....but not on evidence...

I have found 2 cases in the USA which are just as mine.....and finally after further investigations it was discovered that the Prostate hadn't been fully removed and healthy tissue had been left in situ......generating the mystery PSA.....

However I am where I am .....I am 70 this year and if I can manage another 5 to 10 years with containment then that's pretty good....I'm fully continent now and apart from the PSA reading you wouldn't know or think there was anything wrong with me....

Cheers, Paul.......

 
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