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Posted 1/31/2016 8:20 PM (GMT 0)
I admit it...I'm a lurker. Shame on me, I know, I know.
<insert 40 lashes>

Just had a question... I've had a couple bumps upward in
my PSA results.
10/15 .14
01/16 .38

I've recently switched insurance, which put my urologist "out of network". I'm heading to see a new urologist (@ Mayo Clinic) but not until 03/7.


What are your thoughts regarding PSA tests in the interim, just incase I need to get in sooner? Only symptom I have is some discomfort/ache/burning sensation in the region. No urinary issues.
Original Gleason 8 score plus symptom above makes me a bit concerned.

Thinking PSA test every couple weeks?

Thanks!
Posted 1/31/2016 8:40 PM (GMT 0)
PCW, welcome to active posting mode.
I am not the most knowledgeable here, but I think PSA every few weeks is overkill. It just doesn't move that fast , even a G8 . (I think)
March 7th is just around the corner. I can understand the wait being a bit nerve wracking, depending on your temperament, but try to hang in there. It's barely more than a month away.
And Mayo is a great place to go to get treated, or decide on whether and when to treat.

Good luck and keep us posted. (And post once in a while ;-)
Posted 1/31/2016 9:33 PM (GMT 0)
Thanks! I'll relax a bit..

I'll also try to shake my forumphobia and post here and there.

You're right, March is right around the corner. Looking
forward to the Mayo. Hard to know what to expect on a
1st visit for the PC. I'll have a report when I return.

Thanks again,
PCW
Posted 1/31/2016 10:27 PM (GMT 0)
PCW,
I'm glad you poked your head out. Now if you'd come all the way out and post a signature with what your diagnoses and treatments have been, it would help us all respond better. Have you had RP? primary RT? Salvage radiation? on ADT? What do you see as your next decision?
Posted 2/1/2016 12:39 AM (GMT 0)
Dear PCWarrior,

Welcome to the posting side of the forum --- it's an important first step, going from "lurking" to POSTING --- that's where the true support starts --- and the bonds of BROTHERHOOD begin to form here ---

You mentioned that you are on your way to Mayo Clinic --- I went to Mayo Clinic for the first time last October and underwent tests and scans there --- followed by a consultation with Dr. Eugene KWON, a noted urology oncologist and leader in the field of prostate cancer.

My entire experience at Mayo Clinic was positive, from start to finish --- it is an amazing place, and my tests, scans, and consultation with Dr. KWON were all well coordinated.

While there, I met people who had flown in from all parts of the country, as well as foreign countries. It was in those moments that I realized that Mayo Clinic is playing an important part in helping people from all over the globe --- just as other medical facilities are doing across this great country of ours --- and we have important testimonials from other members of this forum who will attest to the MANY great medical facilities to be found across the United States --- and outstanding doctors.

Meanwhile, for some detailed background on my experience with Mayo Clinic, you can do a search for the thread entitled ""Advanced Prostate Cancer: Mayo Clinic" that I first posted back in October 2015 and this might give you some background to help you prepare for your first visit.

Interesting that you are heading to Mayo Clinic in March --- I am returning for some follow-up tests and scans and a further consultation with Dr. KWON in March, as well. I have other friends here who are fellow prostate cancer "battle brothers" and they also have upcoming appointments at Mayo Clinic.

Wanted to welcome you to the forum --- and wish you well on your upcoming trip to Mayo Clinic in the month of March. I believe you will have a very positive experience there. Stay in touch with all of us here !

Sent with my best,

Iowa State "Cyclone"
Posted 2/1/2016 2:45 AM (GMT 0)
Thanks all. Much appreciated information. Cyclone, I've re-read your posting and I believe you might have had an influence on my 1st trip to the Mayo Clinic, although I was there for another health issue.
(Peripheral Neuropathy etc, etc...which started shortly after my first round of treatment for PC).
I'm also a big fan of the Mayo Clinic system, I found it to be just as you described.
Maybe I'll see you there. I'm planning on a two week stay starting March 7th... or do you think
I should just get a one-way ticket and report back when I'm thoroughly treated?
Posted 2/1/2016 2:46 AM (GMT 0)
This following video may not be for you at all but I'll present it just in case. I never used to think much of Echart Tolle, especially because he speaks so slowly but I find many of his little talks mean more since I've been dealing with cancer.

/www.youtube.com/watch?v=U07k4-8AiKA
Posted 2/1/2016 5:00 AM (GMT 0)
Thanks, PCWarrior - I understand your situation a lot better now. With that combo therapy, I doubt it's a local failure and it's too soon to make that call. But your doubling time is fast. Mayo has that C-11 Choline PET, but your PSA is too low to reveal anything much - it needs to be close to 2.0. There are scans you can get in clinical trials elsewhere that may be able to reveal something more.

Did you have your pelvic lymph nodes irradiated already? I know Mayo is big on surgical ePLND. But that all depends on if you have enlarged nodes and a PET shows infiltration.

If you have some mets, chemo+ADT is a possibility. If not, just ADT.

Let us know what they say at Mayo.

- Allen
Posted 2/1/2016 5:30 AM (GMT 0)
PC Warrior,
Like Cyclone, I'm a Mayo regular as well.
I think you'll be surprised at the level of detail with the C-11 Choline scan. My experience with the scans showed lymph node and prostate involvement even at low levels of PSA (showing up as low as 0.18).

Good luck at Mayo. We'll be looking for updates from you!
Posted 2/1/2016 4:07 PM (GMT 0)
Thanks Dreamer. I'm going to have to read Echart Tolle's work on this subject. :)

Tall Allen - Thanks, yes pelvic nodes were irradiated.
I'm kinda locked into the Mayo for March 7th.
(They could have taken me in earlier)

With PSA at .38 my concern is the speed in which it rises.
The ache concerns me as well. I might get just one more
test before I go, just to calm the nerves.

Gunner - Thanks. Glad to hear how well the C-11 Choline
scan has worked for you.
Posted 2/1/2016 6:12 PM (GMT 0)
You might want to contact Evan Yu at the Fred Hutchinson Cancer Research Center at UW to see if he has a PET scan you might qualify for. His number is 206-288-7595. He is very good and local.

- Allen
Posted 2/1/2016 9:20 PM (GMT 0)
PC Warrior,

Now that I have read the details in our sig I can tell why you are anxious. A week or two probably isn't going to make much difference, but is there any way you can get into Mayo before March 7?

Your biggest need right now is probably peace of mind, and I can certainly understand that.
Posted 2/2/2016 4:12 AM (GMT 0)
Thanks Allen. He's "out of network" but maybe that doesn't matter if it's done in the course of research?

Cigar, Well, I think I'm pretty much set on that date. My (former) urologist messaged me today saying that he thought that I'd be fine with the 3/7 appointment. He did recommend getting a new PSA before going into the Mayo to give them a little more information.
When was your last PSA? Any treatment plans in the works?
Posted 2/2/2016 5:37 AM (GMT 0)
You're right that it shouldn't matter for clinical trials.
Posted 2/2/2016 11:20 PM (GMT 0)
Allen,
I contacted them and sent over my info. Will let you know
if/when I hear back.

Thanks!
-Matt
Posted 2/4/2016 10:50 PM (GMT 0)
Well, considering I've got an uncomfortable ache/pain and warm sensation in the region in question and that I had/have an aggressive PC.

I went ahead and had another PSA test.

It was .38 about 2 1/2 weeks ago. Today .71.

Called the Mayo Clinic, waiting to hear back on possible
earlier appointment. Docs there reviewing my files etc.

Emailed Allen's contact at Fred Hutch. offered myself
for research. (I'm easy). :)
Posted 2/4/2016 11:15 PM (GMT 0)
Since you're "easy," some of the best clinical trials for PET detection are recruiting now at Stanford. Contact: Andrei Iagaru [email protected] (650) 725-4711
They are trying some really promising PET indicators and have that new PET/MRI (instead of PET/CT) there too. There are lots of other clinical trials (at NIH, Johns Hopkins, Emory, etc.) - this is a very active field of investigation, and it's nice to be able to get it on a clinical trial where it is free and one is closely observed. On clinical trials, I think they will all want to see biochemical recurrence (nadir+2) first, but at this rate, you might hit that hurdle within a month or so.
Posted 2/5/2016 12:11 AM (GMT 0)
Tall:

Speaking if imaging, as you might recall my cadillac insurance plan at work was fantastic when I went to Mayo to get the C11 scan done. My final cost was small and the inuirance plan actually paid for transportation/lodging for me and my wife.

Fast forward to know. I suspect there will be another C11 in my future. I am now on BCBS MediCare Advantage. Do you know if they cover such imaging? (I seem to recall that MediCare does cover it, but my memory is faulty).

I suspect Mayo would know!

Mel
Posted 2/5/2016 12:17 AM (GMT 0)
Allen,
You're an amazing resource....thanks!
I'll investigate further and report back.

Thanks,
Matt
Posted 2/5/2016 1:25 AM (GMT 0)
Mel,
Sorry, I have no idea if that insurance company covers C11 Choline PET. Call them for pre-authorization. C11 Acetate isn't FDA approved so I know they wouldn't cover that one outside of an NIH-approved clinical trial.

These PETs we're talking about are more specific for PC, and may have much lower detection limits. Often, they are available for free in clinical trials. Sonny and Wampuscats got in on the F18-DCFBC trial at NIH, which pays for all costs, including transportation and lodging in Bethesda. The F18-DCFPyl at Johns Hopkins is even more accurate.

- Allen
Posted 2/5/2016 2:14 AM (GMT 0)
Hello Fellows ---

In case it helps, I had the CHOLINE-PET scan, authorized by Dr. Eugene KWON at Mayo Clinic in Rochester, Minnesota, just last fall.

I have Blue Cross/Blue Shield Insurance through my employer --- the "Cadillac plan" offered to employees ---

In my particular case, the cost of the CHOLINE-PET scan was COMPLETELY covered by my insurance ---

I was at Mayo Clinic over the course of 3 days --- lab work, detailed MRI of the prostate, the CHOLINE-PET scan, and my consultation with Dr. Kwon ---

For all those services, the total bill was $14,000, which I considered very reasonable for all the services and tests that were provided for me. For all of that, I only paid about $100, out-of-pocket, for one component of one blood test that my insurance considered "experimental" in nature ---

All the rest of the scans and tests, including the CHOLINE-PET scan, were 100% covered by my insurance, for which I was thankful --- I had assumed that I would be responsible for thousands of dollars in bills, but my insurance proved to be golden --- I have a lot of gratitude for that.

Dr. Kwon took special interest in my case while I was at Mayo, spent a great deal of time visiting with me, and his consultation fee was only $350 --- again, covered by my insurance.

Just adding to the experiences shared by others,
"Cyclone" From The Land Of Iowa State
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