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Posted 7/17/2011 1:22 PM (GMT 0)
I have my two month post op follow up with my Uro tomorrow and if I'm lucky may get five minutes of his time to discuss my issues.  I am still on the fence and troubled by the level of PSA testing that I am getting. You can see my post-op pathology results in my sig below.  With these factors present, I feel like I should at least be getting ultrasensitive PSA testing. I am concerned that we may be missing out on information that would be actionable to determine BCR as early as possible to ensure that SRT would be done within the optimal timeframe.  My Uro doesn't want to consider ART due to the SE risks without ensuring treatment is really necessary (BCR determined by three consecutive rises in PSA).  So if SRT is the plan in the event of BCR and we're relying on testing in the tenths, it seems we would miss the optimal window of SRT treatment which I understand to be 0.2.  I know I need to be having this discussion with him, but I need to know if I understand this correctly and whether I am making too much of this?  Should I be content to ride along with his plan or should I be strongly advocating another direction? Any advice would be appreciated. 
Posted 7/17/2011 1:35 PM (GMT 0)
it is clear that you have a lot on your mind and I think you should insist that your doc take the time to answer all of your questions/concerns. I would go into the appt. with your list of questions (with my personal favorite - a bunch of follow-up "why's") and make him explain the rationale/data supporting his reasons. I would also bring a recorder to get his answers on tape so you can more fully digest the info on your own time and at your own pace. Once you have digested all the info, decide whether or not it makes sense to you. If not, I would seek a Uro a little higher up the food chain of Uro knowledge.

I realize this may not help too much but it's what I would do. Best of luck!
Posted 7/17/2011 2:11 PM (GMT 0)
Hey ,you are paying the guy so don't just let him walk out. I guess I'm lucky that all of My uros have spent plenty of time with me. Take your list and ask away.
Some times trying to over analyze the coarse of this disease can make your head spin!
Posted 7/17/2011 2:28 PM (GMT 0)
From what I have seen, you won't win the ultrasensitive PSA argument if your uro opposes using it. Mine believes it generates needless anxiety. I've gotten my ultrasensitive tests through my GP, and since I have now topped 0.2, they "qualify" for the uro.

All things considered, he may be right. I have been out there researching, finding medical oncologists, but in general, those my insurance covers require a referral from a uro, and that you be not reacting well to HT. So I have a lot of knowledge, but it is not reassuring. I made some changes that many here swear by, and they didn't help over a year period, so either they don't work, or I might have gotten worse faster without them. But I don't have a way to know that.

So, if you want to go the ultrasensitive route, I would find a uro who wants and uses the information, since having it without a use for it may really be needless anxiety.

Posted 7/17/2011 3:27 PM (GMT 0)
Hi, my pathology report is close to yours. The first PSA test I had was not ultra sensitive. After that, I asked my Uro to do the ultra sensitive test and he agreed. So far I have remained at .005 for 2.5 years. I'm hoping to avoid SRT but if my numbers start to go up I'll certainly start at the first sign.
Posted 7/17/2011 5:56 PM (GMT 0)
Hey RC,

I wish I had advice to give you, but like you, I'm a relative newbie at this PCa stuff.

I have an appointment with my GP on Tuesday.  Why?  I don't know.  I guess I just want to fill her in on what's transpired over the last six weeks or so and make sure she's aware, though I'm sure she probably is.  I also want to discuss the method(s) of PSA testing they do at her location.  Several weeks back, my Uro's office asked where I wanted to have future PSA testing done.  The said it didn't really matter where, as long as it was consistent (done in the same place so that the same lab is used).  I'm hoping that my GP will do the ultra-sensitive testing, which is another reason for the appointment. 

My first post-op PSA is scheduled for Jul 25th.  Here's hoping to you and I that we become members of the zero club here on out.

 

Posted 7/17/2011 6:18 PM (GMT 0)
Maybe a Dr. that deals soley in PC is in order. Urologists have many different types of expertise because they deal in many other maladys other than prostate cancer. As said earlier, the Dr. is working for you so if you are not getting his/her time then perhaps you should interview another.
Posted 7/17/2011 8:56 PM (GMT 0)
Thanks for the responses...I'll have a go at discussing my concerns and let you know how it turns out...I know my Uro deals with lots of issues and PCa isn't his only gig, but I need to know if I'm getting the best possible care and so far I'm lead to believe that I'm not. We'll see what tomorrow brings and I'll most likely make another appt with my PCP/GP...and see where it goes from there...I haven't heard anyone say that I'm wrong in my 0.2 off to SRT for optimal results thinking?
Thanka again.
-Bob R.
Posted 7/17/2011 9:17 PM (GMT 0)
rcoller:  The only study that i know of that has been done on SRT and optimum PSA at the beginning of the SRT has a .50 PSA as the cutoff point for the best response.  Here that study is:

http://jco.ascopubs.org/content/25/15/2035.full

Common sense would tell you the lower the better but just be sure its an actual reoccurence. 

Good luck

David

 

Posted 7/17/2011 10:00 PM (GMT 0)
I think dkob131 brngs up a valid point.

Based on my own post-op pathology, I'm somewhat concerned about PCa recurrance as well. But I've read where you want to see the PSA rising for at least three consecutive PSA tests before recurrance is assumed. I guess what that means is that PSA could rise to a certain point but then level off, perhaps not rising again for some time, if at all.

At the risk of getting chastised, radiation scares the bejeezus out of me and I want to avoid it all costs. Maybe I'm wrong in my thinking, but I am petrified of the side effects that radiation can bring, even if years down the road.
Posted 7/17/2011 10:13 PM (GMT 0)
I can tell you that in my case I get the reg PSA as mandated by my insurance company. :( what a crock!

But I guess I have fared well still a big fat zero at 2 year 8 months. :)

I actually know that the statement about my insurance is true my brother works in the lab.

Point 2: Definitely walk into the Dr visit with a list of questions in hand. I have done that several times. You are the consumer demand the time. You need to know the answers to your questions. I have used the list 2 different way. You can start the appointment with I have a few questions I need you to answer and hand the questions to the Dr. Or at what appears to be the end of the Dr visit say I need a bit of your time I have some questions that I need answered. Then start firing the questions. Best of luck.

Cajun jeff

Post Edited (corvetteman3) : 7/17/2011 4:17:16 PM (GMT-6)

Posted 7/17/2011 10:42 PM (GMT 0)
HD..I'm with you...radiation is scary and isn't something I want to get, but since I do want to live and beat PCa I'm assuming it will be the next step in the treatment process...if there needs to be a next step, which can only be measured by PSA to verify recurrance with three consecutive rises. I'm also leary of the RT side effects, but would at least like the best level of testing to ensure I get the RT during the optimum window of opportunity...thanks to David for correcting me on that level...which I now understand to be 0.5. At least that provides more wiggle room for detecting BCR and still meeting that optimal level...not that sooner isn't still better...which brings me back to ultrasensitive testing. I've got this worked out in my head so I'll get it on paper...have my discussion with the Uro...and let you know how I make out tomorrow. Thanks again for the replies...they are much appreciated!
Posted 7/17/2011 11:13 PM (GMT 0)
Trepidation,

It will be unusual to find someone specializing in PCa unless you are near a very major city. I have been doing that research myself, and all the medical oncologists have said that I am expected to stay with a urologist until I arrive at the point of becoming refractory (HT has been tried and stopped working).

The only uro I've found (covered by my insurance and within reasonable travel distance) who really specializes in PCa is also a senior university professor, and has office hours only one day a week. I was told to come back when I had confirmed mets or when HT had failed on a referral.

Not to say there are not any, but they are hard to find, and very busy. Best hope is not to need them -

Posted 7/18/2011 3:55 PM (GMT 0)
Which lab to use was given some thought.

My doc is not concerned with two digits X.X.

Switching labs to get three digits X.XX  would be easy.

It is believed that two digits will give a good window to be treated.

Concerned enough, don't need to have PSA fractional move anxiety.

Radiation is a strong real concern.  I feel that all my good progress can

literally be Zapped away.  Hopefully our PSA's will never force that decision.

 

Posted 7/18/2011 5:54 PM (GMT 0)
Went to the Uro this morning and it went suprisingly well. He took his time, listened, answered all my questions, provided reassurance and even gave me three sample packs of boner pills! As far as RT goes, he's not a fan of ART but assured me we'd keep a close eye on my PSA and would refer for SRT at the first confirmed sign of BCR. He sent me for another PSA right after my appt. today...results should be in tomorrow. Then have another lab slip for three months out and every three months thereafter unless we get a bump and then will do them monthly. As far as sensitivity goes, he cited the study above on the 0.5 threshold for best RT results. He agreed with Sag and others above that the level of testing we're relying on is sufficient for timely decision making, but not so far as to cause undue concern and unnecessary anxiety. We discussed ED issues and as mentioned gave me various samples to try. If they don't work he's suggesting we move toward injections so we'll see... Anyhow, feeling much better about how things went. Will advise of the PSA results tomorrow but expecting to maintain my newly aquired Zero club membership.
Bob R.
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