Newly diagnosed and new to board!

gene62 said...

Wilderness said...
Hi gene62 -

What I find myself thinking about are the guys that can't or don't get online for resources like this and those who can't avail themselves of best care due to being uninsured or fiscally challenged. Then there are those who just blindly trust in whatever system they are in without questioning things.

Exactly. I'm sure most of us have had similar thoughts during our tenure here. What's cool to me is that there are great, and near-great, places all over to get treated--that aren't all in New York or California. When I was diagnosed and searching, I lived in rural southern Illinois, and the "go-to" center of excellence in those parts is the Barnes-Jewish group in St. Louis. We've had guys check in here from Spain, Britain, Hong Kong, Singapore, Australia, and other places....and who have found success in their treatment. You're right--we represent a minority of patients. All any of us can do is keep trying to spread the word, man to man, to our friends, family members and colleagues.

I don't see where it asks that. You want a 2nd opinion on your biopsy slides (not surgical, and I don't think it's referred to as cytopathology...I think you are looking at the wrong page.

Go here: pathology.jhu.edu/department/services/secondopinion.cfm

Then select "To Send Slides Through Your Doctor" (don't attempt to handle the slides yourself...your urologist's office should be accustom to accommodating this request.

Try again...



Also, don't be afraid to call the friendly folks at the other end of the phone number and also ask their help...they are used to handling calls from patients just like you.

Tall Allen said...
It probably does not make a difference that the PSA was soon after a DRE. The biopsy would have an effect.

www.jurology.com/article/S0022-5347(01)65321-7/abstract
onlinelibrary.wiley.com/doi/10.1111/j.1442-2042.2006.01445.x/abstract
/www.ncbi.nlm.nih.gov/pmc/articles/PMC4524270/
onlinelibrary.wiley.com/doi/10.1046/j.1464-410x.2000.00709.x/abstract

And can it matter if the PSA was done by different labs? Can there be differences in results of same sample between labs? I guess this could just be a theoretical question - perhaps you know if this experiment has been done. Just curious as to how much variance is possible.

And thank you for the links! That's good stuff.

Lab variances can occur, but with pre-treatment PSA, the diurnal variations are likely to be greater than the lab variances. Which of your readings were from different labs?

Fl Drifter said...
Hello Gene62.....great info here for you from "the guys who know".....I had a 6.8 PSA ....and just after a DRE I got it checked (same day) and it was 10.3.....so, I expect the DRE does elevate the PSA. I went the Rads route and I hope you do too. Just my 2 cents worth.....also, everyone says to stick to the same lab.......some say Quest is a no no.....I think I`ll try Lab Corp in April for my 1st post test. Good luck Gene ....~David

Thanks for the info David! I'm leaning towards rads at this point for sure. I agree this forum is a super resource and the guys here help one to keep the chin up. Wishing you much success in your fight also.

And what does my Gleason Pattern 4 mean in terms of choosing something like SBRT? SBRT is definitely the route I'd go if I was certain it was intermediate risk.

halbert said...
Gene, the bottom line is with 3+4, you're favorable intermediate risk. Which means, that yes there are many options, and pretty much any of them have a high probability of cure. Your urologist recommends open RP because that's what he specializes in. Your RO recommends what he recommends because that's what he specializes in.

It's tough. The answer, like it or not, is that you get to decide based on your own internal risk profile. What are you ok with? Do you want to know beyond a doubt what your pathology is? If so, surgery is the only way to know. Do you want immediate PSA drop to zero? Again, advantage surgery. Do you want to risk the immediate surgical side effects that may or may not happen? How do you feel about having radioactive pellets inside you? How much time can you take off work for treatment? etc. These are the questions to be answered. Then, pick the best specialist you can find and get to, and relax.

You are right! Sure wish this could have been a slam dunk decision. Probably I've also been swaying in the wind with these different doc opinions.

For Tall Allen - just found my MRI without contrast and with contrast using a phased array surface coil.

Among other things..."there is loss of the normal high T2 signal in the peripheral zone suggesting chronic prostatitis". Also "prostate is slightly asymmetric with atrophy or scarring in the right anterior prostate gland. There is mild nodular hypertrophy of the transition zone.""There is decreased signal on ADC map involving the left mid and left ape perhpheral zone."

No evidence of extracapsular extension or neurovascular bundle involvement. No evidence of osseous metastasis in the visualized bony structures of the pelvis. No pathologic lymphadenopathy is identified in the pelvis.

I mention the MRI due to a question of whether prostatitis is elevating PSA. My PSA hasn't yet been lower than 19.9 so the RO has me 'high risk'.

Post Edited (gene62) : 3/6/2017 4:23:23 PM (GMT-7)

Gene62-

That is very good news! That confirms or at least creates a high suspicion that your elevated PSA is a result of chronic prostatitis rather than high risk PC. I suspected as much because your PSA was so out of line with your biopsy results. The chronic prostatitis has caused glandular atrophy and scarring. The nodular hypertrophy in the TZ is causing blockage that is probably.further increasing your PSA.

Did you send Epstein any slides from the area suspected by the MRI as having prostatitis? He should be able to see the cellular changes due to that. That would confirm it.

The reason that is great news (in spite of meaning that you probably have prostatitis), is because, it probably also means that you do not have high risk PC, but only favorable intermediate risk PC. That means that any therapy, including CyberKnife, should work just fine for you. It also means that adjuvant treatments like adjuvant ADT with radiation or adjuvant radiation after surgery are useless.

The advantage of surgery would be that all sources of PSA will be removed (prostatitis, PC and TZ blockage). With any luck, that would give you undetectable PSAs and the confidence that comes with that. Conversely, with radiation you may always have the chronic prostatitis as well. That means that your PSA might continue to be elevated, and you would have no way of using PSA as a tool to assure that the radiation was successful.

Of course, this is all up to you. If you want to be treated as a high risk patient (which your PSA taken as is indicates), you can be. You may also be able to convince your doctors to treat you as a favorable intermediate risk patients, which may increase your therapeutic options and decrease the risk of side effects from treatment. I think you should point that MRI finding (and if possible Epstein's finding on the slides from the chronically inflamed area) to your doctors and open up this discussion with them.

Just wanted to say I'm glad you didn't get any upgrades from Epstein. That's very good news. I do think you're set for a cure, but figuring out how to proceed is the difficult part. I think you're best served by meeting with as different docs to hear the pros/cons of different treatments, although I think the surgery/radiation differences are summed up well by Allen and Tudpock.

Gene, ok, that's your decision...and it's the right one for you. Now for the next question: where are you located? You want to find someone who has thousands...yes thousands in his/her record book. Ask specifically what his personal record of cures, side effects, etc. is. They'll be glad to share.

If we know where you are, we can point you to the best near you.