Slowly rising PSA after 4.5 years following treatment, Help with Centers of Excellence Please

[mikcon]

I was treated for prostate cancer in July 2013, at 64. Had robotic surgery.Due to adverse features and G 8-9 (depending on who you asked and I asked 3 different pathologists including Bostwick and Johns Hopkins) I also had adjuvant radiation to my pelvic area ( 38 treatments) Had undetectable PSA from surgery and radiation through end of 2017 when PSA started to slowly rise. First detectable reading was 0.04 six months later 0.06 another six months 0.08, 0.10 and In January of this year now 0.12. My urologist says lets watch and see what happens in May and do Bone scan and CT at that time. He says he'd like me to have an Auximum PET CT but doubts we would see anything to treat. I am more than a bit anxious about waiting until MAY and look at this slowly rising PSA as a puff of smoke that every time I look is a big larger. Seems wiser to get a closer look that wait until I see a flame.

I am looking for a list of the Centers for Excellence. I live in NW Florida and still run a business I'm trying to turn over to my children.

[Kevinski65]

Have you heard about cimetedine (tagamet)? If u have stomach problems u might not do it. You can Google this. They've known for years the tagamet blocks hydrotestoterone. You can buy a generic pack at Walmart. Just follow directions. Every 3 months I do a pack. It's not science and I'm no doctor but one pack might be worth a try. If you're the type that just follows allopathic medicine then ok. I do a number of these things to see if it helps. I don't know if I'm wasting my money or not. I'm 7 years out , stage 4, M1, bone mets. I've been on Lupron and Xtandi for years now. I've done complementary stuff for years. Good luck...

[6357axbz in reply to Kevinski65]

Kevin, did you start out with both Lupron and Xtandi or was Xtandi added later? Did your PCa ever go testosterone “insensitive” (forgot proper term)?

Thanks

[Kevinski65 in reply to 6357axbz]

I first found out when I got a PSA check at 31. I then had a 12 point biopsy. They told me stage 4, M1, Gleason 9 doubling every 5 months. I was put on Lupron (and Casodex for 2 weeks). During this period of 2.5 years I took many supplements. Then the PSA started to rise. That's when I got in a clinical trial at NIH. They had a two sided trial; one was Xtandi and prostvac ( a fowl pox vaccine) and Xtandi alone. Since I was retired and they pay for air travel, meals and lodging I went into that study. I got in the Xtandi alone group. They give me the Xtandi. Every 12 weeks they give me a cat scan, bone scan and PET scan. My PSA dropped to .02, bone mets dried up and I'm still going down there to Bethesda MD from NH. I've been going back and forth for 3.5 years.

[Tall_Allen]

The question you have to ask yourself is what would you do differently if you detect metastases or if you don't. If the answer is the same, there is no point in doing the scan. You have already had whole pelvic SRT, so you no longer have curative options. Your cancer is micrometastatic and systemic, which can be managed for hopefully a very long time. The real issue is when do you begin ADT and what kind of ADT.

Moffitt is a center of excellence in Tampa.

[mikcon in reply to Tall_Allen]

Thank you, is there a list online of Centers of Excellence? I am five hours from Winship at Emory, about eight from MD Anderson. five from UAB Birmingham, and six and a half from Mayo in Jacksonville.

[mikcon]

Thank you

[Tall_Allen]

NCI and NCCN members are all "centers of excellence."

cancer.gov/research/nci-rol...

nccn.org/members/network.aspx

More important than the institution are the doctors who work there. It is generally true that the top doctors work at the top institutions/teaching hospitals. But there are exceptions: take Oliver Sartor for example. He is on anyone's list of top medical oncologists in the US, but Tulane is neither an NCI nor an NCCN designated comprehensive cancer center. Similarly, Cedars-Sinai isn't on either list, yet has an impressive oncology staff. Here are some tips about how to find a doctor who is right for you:

pcnrv.blogspot.com/2017/12/...

[mikcon in reply to Tall_Allen]

Thank you again

[Kittenlover50]

Mayo Clinic.... Rochester, Mn... Dr. Kwon. He is very aggressive in his treatment. Been going for 4 years. We live in central Florida and still go there... ( only bad thing is the snow in the winter!!!!).... But Dr. Kwon is worth it. ( we r from northern wis so used to it).

[mikcon in reply to Kittenlover50]

Thank you. Have you considered the Jacksonville, FL Mayo facility? I know Dr. Kwon is not there. I have watched a few of Dr. Kwon's presentations and was encouraged by the cases he presented.

[Beermaker]

Mikcon, I also live in NW Florida (Pensacola) and I am a patient at Woodlands here in town. The have set up an Advanced Prostate Center in their Urology department, and have a dedicated PCa uro and an MO that seems good. And they have the F-18 scans mentioned above. If you are interested call them and see if they will talk to you about all of this. They do seem to be a good group.

[mikcon in reply to Beermaker]

Thank you, I have been treated at Woodlands both my surgery and my adjuvant radiation. My surgery was West Floride Hospital. I'm due back to see my Woodlands urologist in May but I'm doing due diligence. Hopefully my situation can be kept well in hand but I'm a proactive soul in a reactive world. I guess I'm thinking having more information and not needing it is better than the push to try to absorb it all in a rush. I can recall the excitement my original urologist (not Woodlands) caused me when he told me, "you have 90 days to figure out what you are going to do" Perhaps excitement should have been spelled P-A-N-I-C