Do I really know the all the facts - Suspicion

[ken12491]

The following happened to me:

2017

Had RP Feb/2017 - GS 9 ( regional )

PSA showed up within 1 month ( twice .81 and .83 )

Started ADT on May 2017 different hospital and with an RO

ADT treatment ( Lupron ) May 2018 began

PSA undetectable from late May 2017 until May 2018

T- Levels - 21s, thereabouts during the above time period.

Had 40 treatments of IMRT - started them on 9/6/17 with a CT done the day before that was clean. Plus bone scan ( my 2nd ) , that too was clean. RT ended on 10/31/17

2018

Had 1st PSA after all of the above - it was 0.19 on 12/17/18

T- Level was 421 on 12/17/2018 from the low 20s in May 2018

Dr doing another PSA ( and I agree with-i guess )

The question I asked my Dr on 12/17/18 - is it possible that since the PSA is up because my T-Levels are now close to normal - before ADT in May 2017 they were 503 - May 2018 they were 29 - now on 12/17/2018 they are 421.

He said they should be zero since I had a RP ---- really????

They even told me at the start that their goal was to treat the path report, not the PSA - although I guess they go hand and hand.

I thought all guys that went the route I took as explained above had an RP and residual levels PSA that getting to a zero PSA was not the goal - some higher BCR level would now be expected after the treatment ( and wasn't ) this treatment I had ' Salvage RT " ?

Any thoughts - I'm a bit confused.

thanks for reading

[Tall_Allen]

If your salvage RT had worked, your PSA would be undetectable when your T got back to normal.

[ken12491 in reply to Tall_Allen]

I was looking at this part of a recent study - here's the part and link.

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At five years following treatment, freedom-from-progression (FFP) rates in the interim analysis group were 71.7 percent for PBRT alone, 82.7 percent for PBRT+ADT and 89.1 percent for PLNRT+PBRT+ADT. The FFP rate was highest for the arm combining all three treatments (p<0.0001). Freedom from progression was defined as a PSA nadir of +2, clinical failure or death from any cause.

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astro.org/News-and-Publicat...

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So the question - with all u personally and so many others have been through - u have always maintained a nondetectable PSA level and that is what all men should be aiming for?

I was also told that if all 3 consecutive PSAs reading after SRT should be equal to or less then .2 - in not that was considered a BCR.

Thanks tall Allen -

[Tall_Allen in reply to ken12491]

Actually, only two PSAs above 0.2 are necessary to confirm a BCR. In the study you cited, they used a nadir+2 definition of biochemical progression because it correlated best with clinical progression (detection of metastases with bone scan/CT). They knew they were using a higher bar than customary.

[joekaty in reply to Tall_Allen]

I have really been struggling with this. My husband did not have radiation or surgery. He started with 9 or 10 rounds of docetaxel, was taken off and immediately PSA started rising- although only slightly- we were advised that because of the aggressiveness of his cancer that he should start Xtandi right away. After the 1.67 Xtandi was started. So there were three more small drops before it started bouncing around. At diagnosis before chemo he was 556. Since his nadir on Xtandi (and overall) was .78, and he’s had increases since then several times, including the two consecutive last ones...what do you think? He’s on month 7/8th of Xtandi and showing modestly increased activity in his prostate on PET. Pain is constant from bone involvement. He’s on morphine and norco 24/7. Fatigue worse. Thoughts? Thank you in advance. He says he won’t do chemo again. Feeling panicky.

3/30 1.63

4/27 1.67

5/24 1.11

6/21 1.02

7/26 .78

8/23 1.05

9/20 .93

10/18 .88

11/13 .93

12/19 1.28

[ken12491 in reply to joekaty]

So sorry for you both ----- I don't believe any one person or group has the right answer for any of us --- sometimes I wonder if they really do. I m not one to give advice, but I would him to Anderson or SMK - they are the best. My question is do I ignore all I did already ( and do nothing till PSA hit 2 ) or go with the standard protocols and or treat with ADT and deal with the QOL issues additional treatments brings with it. Treating a .19 is the question - we ll see after my next PSA - I'm included to do what my Dr tells me to do and live in the moment - hard but I have never quit before.

[joekaty in reply to ken12491]

Thank you. We have been to MDA, U of Chicago, and Mary Crowley. Working on getting into UTSW (we’re in Dallas) and am open to other suggestions! Good luck for you- as my husband never had surgery or radiation I don’t know anything about it so afraid I don’t have much to offer except support.

[Tall_Allen in reply to joekaty]

Xofigo may relieve his bone pain and extend survival with better QOL. A bone preserving agent (Zometa or Xgeva) coupled with Celebrex is probably a good idea too.

[joekaty in reply to Tall_Allen]

Thank you Tall_Allen. He has been on xgeva every 4 weeks since diagnosis August 2017. Degarelix and Casodex in hospital prior to docetaxel. Once outpatient began Lupron every 90 days since. Tried Celebrex and I can’t remember why he stopped but it was some sort of side effect issue. Pain and fatigue have been unrelenting since diagnosis no matter what treatments he has been going through, so have accepted morphine twice a day and norco PRN as a way of life. My biggest concern is that when he did get sick it was so fast. He had bloodwork done (due to fatigue) 18 days before he was admitted to the hospital and every single lab (no PSA done) was normal. Then admitted in disseminated intravascular coagulation from extensive bone marrow involvement and almost did not survive...so even labs every 4 weeks isn’t really reassuring to me. Am very worried about Xtandi effectiveness ending and what will come next. Thank you for all of the knowledge that you share on this site! Very appreciated!