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Posted 4/2/2018 4:23 AM (GMT -5)
Results are back , 37 months post RALP, PSA IS .06. No change in assay, I checked it.

So now progression is as follows.....

1st 2 years, <.02
2 year test - .02
27 months - .033 (changed from Quest to Labcorp)
30 months - .033
34 months - .046
39 months - .06

I'm thinking it's time to go back and visit RO (Zelefsky at MSKCC, who told me back in July to come see him when a clear trend develops.

I'm also thinking I'm going to go nuclear on diet and exercise and retest in 6 weeks, just to see what happens.

I want to get on this early to give myself the best shot at cure. Or, with my low Decipher score of .37, should I be more cautious?
What fun nono
Posted 4/2/2018 4:52 AM (GMT -5)
Sorry, your trend is in the wrong direction. The good news there are treatment options. Good diet and exercise is never a bad thing. Hang in there. Denis
Posted 4/2/2018 6:43 AM (GMT -5)
The better news is the astronauts made it back and enjoyed long lives. As I see it, you have three options.

Start ADT now in anticipation of SRT; go straight to SRT; or see Zelefsky now, get another PSA in two months and consider getting a good CT scan with an erc3T-MRI. Clear your worrisome mind to make a rational choice.

If you think a nuclear diet and added exercise will make a difference, go for it. It will require added self discipline that might be better utilized to really control your excessive worry. You’ve beeen around here a lot longer than I have and have witnessed so many brothers conquer much worse. You will too, my friend.
Posted 4/2/2018 8:15 AM (GMT -5)
Your PSA velocity might indicate further treatment required at some point but don't most Docs use >=0.2 as the trigger?
Posted 4/2/2018 8:54 AM (GMT -5)
Pratoman,
I know you are a vet of this carp, but please take a deep breath brother.
When I first read the number I saw 0.6, then I read it again. Great 0.06.
I went 2 1/2 years at <0.1. Changed assay to one with two decimal places.
I am at 0.07 and holding steady.
I agree there's a trend in yours, but it's still very low so worry time can wait.
You and your docs got this!
This comes from a brother who constantly worries, but knows there is still a long road ahead.
What do long roads mean?
Well, more life to live brother, more life to live.
Posted 4/2/2018 9:03 AM (GMT -5)
In your place, I'd do the diet/retest in a couple of months. Then if there is another rise it's time to talk to the RO about the timing of SRT. Sadly, a pattern is developing that you don't want.

There are worse things than glowing in the dark...

;)

Hang in there,
Andrew
Posted 4/2/2018 9:13 AM (GMT -5)
Prato - Enjoy life for another 3 months or should I say enjoy the snow coming your way! Should have stayed in Florida for a while! LOL anyway go check in 3 months and see where your at


Larry
Posted 4/2/2018 10:04 AM (GMT -5)

John_TX said...
Your PSA velocity might indicate further treatment required at some point but don't most Docs use >=0.2 as the trigger?

John, I think the >.2 number is dated.
Posted 4/2/2018 10:07 AM (GMT -5)
Prato: Question? Your comment about diet and exercise. Are you thinking it is poor diet and lack of exercise that is driving the PSA increase or are you thinking that a better diet and more exercise will stop or slow the PCa recurrence that is driving the PSA increase?

Sorry you have to be dealing with these issues but at least you are well informed and know the routine.

Be well.

Roger
Posted 4/2/2018 10:11 AM (GMT -5)
Thanks for the responses.

I tried to use the doubling time calculator on the MSKCC website, but it won't accept numbers below .1. I assume that means that doubling time is meaningless at this low level? With that said I just dropped the zeros, so for example instead of entering .033, .046, .06, I entered .33, .46, .6. I came up with a doubling time of 9 months which is disconcerting.

With that said, my last increase was a jump of .013 in 3 months. This increase is a similar jump, of .014, but in almost 5 months. So at least velocity is not increasing.

I wonder if SRT will be recommended concomitant with radiation, not sure, if I treat below .1

Obviously lots of crap,going through my head. But I'm under control. I think. (Despite popular belief lol)
Posted 4/2/2018 10:14 AM (GMT -5)

three 5's and a jack said...
Prato: Question? Your comment about diet and exercise. Are you thinking it is poor diet and lack of exercise that is driving the PSA increase or are you thinking that a better diet and more exercise will stop or slow the PCa recurrence that is driving the PSA increase?

Sorry you have to be dealing with these issues but at least you are well informed and know the routine.

Be well.

Roger

roger, thanks for the question/comment.
I'm not sure.
What I do know is that the last few months, my diet was worse than ever, and the last 2 months, I didn't exercise much, got lazy. But my PSA velocity didn't change, in fact considering almost 5 months since the last test, it might have slowed.
So who knows.
Posted 4/2/2018 11:10 AM (GMT -5)
Yea... .2 is dated...its .4 at MSKCC...but what do they know...I could tell you...but its in the archives...'shovlen **** against the tide'... Pe'pe la pew and of coarse...Pogo...

imo if you did everything or nothing...your mortality will not change...btw there is also a thread in the archives(I love archives ever since I read about the Alexandria Library)...anyway.. a thread entitled "do you want to be healed" which could be quite instructive here.... arguably( ya know... like in a court a law}...

Damm...this a great forum...in a an extremely counter intuitive and geometric way...a veritable...microcosm of taught...learnts and whatchamacallits... smile
Posted 4/2/2018 11:40 AM (GMT -5)
My question would be "what treatment options do you have available?". Not in an "are there any" sense, just what will your insurance pay for?

Mine would not pay for any treatments until I had three PSA increases with the lowest being .2 or higher. That was a stress for me, but my docs all warned me, and tried to keep me from asking for ultra sensitive PSAs. So I worried for months, but could do nothing about it. Valuable time that could have been peaceful was lost to stress.

It didn't / doesn't mean that treatment was not in some cases justified, just that I would have to pay retail out of pocket.
Posted 4/2/2018 11:45 AM (GMT -5)
Prat:
Yeah, there is a trend showing an almost imperceptable increase.
I would do nothing.

Mel
Posted 4/2/2018 12:05 PM (GMT -5)
I'm sorry that you had another increase. The good news is it was a small increase and the PSA is still very low, and together with your Decipher score, indicating that there is no reason to suspect metastasis.

You were right when you said that PSADT is meaningless and undefined for values below 0.1. You can't stretch the data farther than it will go.

The Koulikov study (below) defined a group they called "low detectable, unstable PSA" as having:
• PSA greater than 0.03 and less than 0.2 ng/ml
• Two subsequent increases in PSA, and/or
• PSA velocity of 0.05 ng/ml/yr or greater

They found that 63% of the men who exhibited that trend went on to have a full-blown recurrence (that is, reached 0.2) within the next 7 years. 37% did not have a recurrence.

As for adjuvant ADT, I think you can safely forgo it at your PSA level:

/pcnrv.blogspot.com/2018/01/when-can-adt-be-safely-avoided-with.html

I have a question for you -- When Tewari took a frozen section and they found cancer there, did they note the Gleason grade?
Posted 4/2/2018 12:12 PM (GMT -5)

logoslidat said...
Yea... .2 is dated...its .4 at MSKCC...but what do they know...I could tell you...but its in the archives...'shovlen **** against the tide'... Pe'pe la pew and of coarse...Pogo...

imo if you did everything or nothing...your mortality will not change...btw there is also a thread in the archives(I love archives ever since I read about the Alexandria Library)...anyway.. a thread entitled "do you want to be healed" which could be quite instructive here.... arguably( ya know... like in a court a law}...

Damm...this a great forum...in a an extremely counter intuitive and geometric way...a veritable...microcosm of taught...learnts and whatchamacallits... smile

Logos, actually, i did a consult with Zelefsky, the vice chair of Rad Onc at MSKCC in July, when PSA was .033. He told me that he does not believe in waiting for a magic number, he would be inclined to treat as soon as a clear trend was evident. Now it seems the clear trend is evident, so i am in the process of contacting his office. I may not take his advice, i may, but one step at a time. I wouldn't wait till .4.
I admire your attitude and philosophy. It aint me.
Posted 4/2/2018 12:15 PM (GMT -5)
@compiler, thanks, hope you are well. As i said, Im inclined to hold off for one more rise. Also, i know what you're thinking "boy he must be freaked out", because you know me well. I'm not. I'm just p!ssed off. ;-)
But i feel better, when i see you post. Hope things are going ok
Posted 4/2/2018 12:35 PM (GMT -5)
@alephnull, im guessing like you, that my psa was rising all this time, as the assay they were using AT THE TIME only measured down to .02.
Good advice. It'll be on my mind, but i wont let it ruin my life mentally
Posted 4/2/2018 12:36 PM (GMT -5)
142, thanks good point.

Can anyone comment on when Medicare will cover SRT? Do they make you wait until .2? I'm guessing not as i know some guys here have done SRT way lower, like Garyi. But his situation was different.

Post Edited By Moderator (142) : 4/4/2018 8:39:46 AM (GMT-6)

Posted 4/2/2018 12:52 PM (GMT -5)
@Tall Allen... the answer, regrettably, is no. Which i am very annoyed about. When Tewari's office gives you the Path report, its a summary that is printed out by his office. So about 6 months ago, i was asking myself the same question, and i called the Pathology Lab and asked them to send me the original report. It did not note anything. other than it was at the Apex.
That is in fact the one thing that scares me, what if its Grade 4 cells that are forming the tumor and producing PSA. That would be the same as if i recurred as a G8.
They also did not note on my gleason upgrade to 3+4 what % was grade 4.
So i sort of feel cheated.
I'm going to discuss it with Tewari, and see if maybe they dont send the patient all of the pathologists notes and ask him to dig into it.
Posted 4/2/2018 1:13 PM (GMT -5)
Prato,
Sorry for the increase, but PSA is still low. I'm not really up on SRT, but I personally would do whatever it takes to avoid the whole testosterone killing therapy. I would hope if .10 is the new red line that it would be unnecessary at that low level to do the hormone therapy, but that may be wishful thinking on my part. Regardless, a better diet and exercise is always a positive.
Good luck,
Tom
Posted 4/2/2018 1:19 PM (GMT -5)
If you have the whole mount sent to Epstein, including the frozen section, he might be able to provide more info. Maybe call his lab and ask if they can take a better look at the frozen section. It's probably better to let them coordinate with the pathologist at Mt Sinai so they can get exactly what they require.
Posted 4/2/2018 1:21 PM (GMT -5)
Thank you TA i will persue that avenue
Posted 4/2/2018 4:12 PM (GMT -5)

Pratoman said...


Can anyone comment on when Medicare will cover SRT? Do they make you wait until .2? I'm guessing not as i know some guys here have done SRT way lower, like Garyi. But his situation was different.

They didn't give me any push back, but my PSA was up about .5 when we got the ball rolling. It fell to .32 on Casodex, and .07 after six weeks of Eligard.

After my surgery slides went to Epstein, all he could tell me that at the positive margin the G was 3+4. I didn't have a frozen section. After surgery and SRT we sure put a lot of focus on PSA. I guess it's all we have, but sometimes I wonder....

Six down; thirty three to go cool
Posted 4/2/2018 4:23 PM (GMT -5)
Thnks Gary, yeah you were much different than .0something
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