Newbie to forum & new to PC

Hello from Idaho, wanted to introduce myself to forum after receiving results from biopsy. After reading posts, there appears to be a wealth of information available here. Understanding PC and the treatments available are somewhat confusing and deciding on a path is overwhelming.

In the last year my PSA went 3 to 5 and now it's at 8.2. Latest biopsy with 15 samples yielded 1 sample with cancer, Gleason (3+3) 6, 10% with prostate volume of 29.7. Now I am awaiting consultation for treatment options with Urologist. I'm 63 yo.

Looking for suggestions, paths to take, 2nd opinions, questions to ask, and results/treatments others have had with PC. Hopefully, not to vague here and not asking too much for a 1st post.

Well I’m no expert here but from what you’ve indicated in your post you have even less prostate cancer than I had when I had surgery. However your psa is higher than mine was. It looks like you had biopsies before since you said “latest” biopsy. If you really only have 1 core of Gleason 6 you would be a good candidate for active surveillance where they just continue to monitor your psa and do repeat biopsies. There are all kinds of 3D imaging that can tell you what your odds are for aggressiveness of cancer and size of the tumor. Those weren’t available to me 11 years ago so I don’t know much more about them. But it seems like you could do AS, or go with surgery or some form of radiation. There are multiple forms of radiation like external beam , brachytherapy, many different forms of brachytherapy. You should see a radiation oncologist that specializes in pca before deciding between AS, surgery or radiation. If you truly have small amount Gleason 6 you might not need any treatment at all...

Thanks Mumbo and others, I had recent biopsy done at CTCA in AZ. Wasn't confident with East Idaho and thought CTCA would have more treatment options. An MRI done in Idaho had identified PI-RADS 5 in one area. Rapid rise is concerning. Radiation Oncologist is at CTCA, along with Urologist to discuss options. Tried to provide more data in profile. Epstein would be a good choice to have pathologist to review slides. Again, great input-thks

mattam said...
Welcome to the forum Idaho Guy.

Well, if you have to have PCa you’ve got the one you want. G6 is the lowest risk, and only one core positive further reduces your risk. You are a prime candidate for Active Surveilance (AS), which basically means monitoring the situation with PSA testing and follow up biopsies at intervals.

The two most important things at this point are to have your biopsy slides evaluated by Epstein, and secondly don’t even consider allowing your Uro to rush you into a radical prostatectomy. You may never need treatment, or if treatment becomes necessary it could years down the road.

Epstein is the best PCa pathologist in the world, it’s easy to send your slides out to him, and it only costs about $250. There are instructions in the sticky threads.

Others will be along with their thoughts, but it tends to slow here on the weekends.

Welcome again and stay with us for support and our lived experiences.

Hello, Idaho and welcome. Mattam said it so well I'll just repeat his post! The only thing I'll add is to suggest you read the sticky threads at the top of our forum that are designed for newly diagnosed members.

Best of luck in you journey,

Jim

East Idaho Guy - Thanks for additional info, it appears that you had your MRI after your first standard 12 core biopsy which was followed by a second 15 core biopsy which sounds like a MRI guided biopsy given the extra cores, correct? Either way it seems that there is something there that may be causing the PSA rise.

Given your rapid rise in PSA to more exciting levels and an apparent identifiable PiRAD 5 lesion, it definitely would be worthwhile to have a second opinion on the latest biopsy pathology. To save you some time if you haven't got this far, the Epstein/JHopkins link is below:

http://pathology.jhu.edu/department/services/secondopinion.cfm

Make sure the people who have your pathology samples have this website info as it supplies all the necessary info. You may also want your URO to check for a possible prostate infection since that can cause PSA rise coincidental with a PCa diagnosis from what I have read in some cases, just a thought.

In my experience, the month after your PCa diagnosis is a rough time and your mind goes into hyperdrive thinking about everything imaginable and sleep is terrible. This site can help a lot with the process of landing back on earth and focusing future efforts. You do have time based on what you know already and you probably have all options available to you so just take it slow. I only know what I know about PCa from my limited experience to date but the collective wisdom of the group here is pretty remarkable and helpful. You just have to sort it all out at the end.

As a side note, I think the Huntsman Cancer Institute in Salt Lake City at the University of Utah has a decent reputation and should not be too far from you. After that, you can head to the West coast, Mayo, Houston, Cleveland or the East Coast for the well noted cancer institutions but I suspect that your PCa is simple enough at this point to be treated at any competent cancer center once all the data is in. Others may disagree and recommend only the top three centers which is hard to argue with but you have to live your life also so once you know what direction you are going to go, then search out the most appropriate location for that service. Just my thoughts on a rainy Sunday morning. Good luck

Idaho, welcome, and sorry you need to be here. Not much to add, all good thoughts above. I would focus on the fact that despite a fairly benign (not literally, but figuratively) Biopsy result, your PSA is high for 1 core G6. And there might be something more concerning lurking, that was missed. Question your docs in that. For that reason, I’d keep a really close eye on your PSA, and of course, if it’s possible, rule out infection.
AS may be a very viable plan for you, but I’m not sure it’s a slam dunk just yet

Good luck

Wow, I'm really impressed with the replies and stress levels have gone down quite a bit. 3 samples indicated a prostate infection, 2 being acute and 1 chronic. I didn't realize this could have an effect until reading some replies. The urologist here in Idaho did originally refer me to Huntsman in SLC, but it took 4 weeks to even get a call from them. By then, I decided they were too busy and made the appointment with CTCA. PCa runs in family history greatly. It's too bad that the software, according to CTCA, is not compatible to fuse the MRI results with the ultrasound to pinpoint the exact location and achieve a better understanding of lesion. He said there are 5 or 6 different programs out there and they are not all compatible.

I'll have to check out the micro-fractionalized radiation treatments, as Peter mentioned. Never knew about this before. One day everything is going fine, then the next I'm going to appointments, tests, biopsies and becoming consumed by this. There is so much advice here, I am actually starting to become informed and believe I can make better decisions now.

Also, found out that I have Low T, 250. This is probably a good thing for the PC, although a lot more tired.

Post Edited (Idaho Guy) : 5/19/2019 12:08:24 PM (GMT-6)

You've already gotten lots of good advice and I will be the latest to echo the importance of getting a second opinion from Epstein's lab at Johns Hopkins. If your G6 is confirmed then AS is an option--although even then you likely want to check out surgery and various radiation options as well.

Regarding your high PSA...on one hand that's concerning, but PCa doesn't generally give rapid increases in PSA. Typically, it's more of a a gradual, but steady rise. You can't rule out that an infection is the cause of that.

Idaho Guy,
You got some great advice already. I would just add take time to go to the top of this page, in the little search box at the right, type in "Letters to the newly Diagnosed". It will list some web pages, probably it will be the first one listed. Click that, and you will find some words of comfort and encouragement in the letters there.
By the way, I think you made an excellent choice in going to CTCA, Goodyear, I have been going there for 6 1/2 years.
Wings aka Dan in So Cal