How does the treatment team come together?

It sure seems that you have done the right thing. Being a Gleason nine and getting a second opinion from a center of excellence like Mayo, gives you the best chance of optimal treatment.

ADT Would stop your cancer from growing and in many cases even shrink it while you decide what to do. You need to speak to your doctors about getting that.

If you’ve spent time reading in this forum, then you have gained a lot of knowledge that will be useful for decisions you must make.

When I was diagnosed with Gleason 9 T3a by a urologist/surgeon at The Fred Hutch Cancer Center at UW in Seattle, I was also referred to both a radiation and a GU oncologist to discuss treatment options, side effects and prognosis for each combination of therapies. I still feel that, along with gaining a solid understanding NCCN Guidelines (Google it) prior to meeting with each one, this approach laid a solid foundation for formulating my decisions. Best wishes to you on your journey!

I'm in Pacific NW. What's your opinion of FredHutch? Are you happy with the care you've received there? Are there any radiation oncologists, GU oncologists, or medical oncologists that you can recommend there?

I fully understand your frustration. My prostate biopsy pre surgery showed a Gleason 8 and the PSMA pet scan showed no detectable disease outside the prostate. I went back and forth at Mayo in Phoenix on my treatment options and not one really helped guide me one way or another other than indicating that the cancer was within the prostate so I opted for RP. Biopsy from the surgery showed I have a Gleason 9 Grade 5 with spread outside the prostate. I now with I had done radiation first but this whole process is frustrating and inexact to say the least. Now I have to wait to heal from my surgery before someone can tell me, I guy that does not produce high levels of PSA even in the face of Prostate Cancer pre op what to do next. I wish the doctors would be willing to be more proactive and help me plan for my future or at lease be realistic with me on my options and potential outcome but no one wants to go outside their stated protocol.

Hi Beachcomber,
My experiences with the Hutch have all been excellent. Several years prior to my diagnosis, my wife had colorectal cancer. She was diagnosed and began treatmet with a different medical group/hospital. We didn't care for the MO, neurologist (she had a chemo induced stroke) and surgeon we saw initially. I called UW Medicine South Lake Union (then called Seattle Cancer Care Alliance) and arranged for her to be seen. The care she received from her team was incredible. She just finished her 5 year scan and is considered cured.

My experience has been every bit as good. My RO is Dr. Jonathan Chen and GU Oncologist is Todd Yezefski. Both great and have incredible PAs. If you contact a PA named Jen Flannery at either South Lake Union or the Proton Center, she woulld be a good initial contact for you. You can let her know you got her name from Bill at the PCa Support Group. My suggestion is to review the RO and GU bios available at each of the UW Medicine sites: Montlake, Proton Center and South Lake Union. You can get a feel for each doctor's areas of special focus and read patient comments. I also like to look up what research they have been involved with and what additional roles they fill at the UW Medicine. Finally, request either a telehealth or in person appointment for an introductory Q and A session. Finding doctors that you feel good aboutt is essential! If you have other questions, please let me know. Best wishes to you! You've got this!
Bill

Hmish, you did the right thing, confusing as it seems. If you had an SBRT type of treatment (5sessions) because you “thought” it was confined to the gland, and now you know it isn’t, what would you have done?
Radiation would not be an option since you’d have already had it!
Similarly for EBRT, they might not have not targeted your pelvic nodes since PSMA was clear. So the surgery (horrible as it is) revealed undiagnosed cancer OUTSIDE the gland and now it CAN be treated with radiation and ADT.
From my standpoint, with your Gleason score, you had the BEST primary treatment and now the mop-up will hopefully take care of the rest.
I would think that your oncologist would keep you on ADT for longer than 6 mos but that’s just a layman’s opinion.
All this means is that treatment is going to take longer than you anticipated but I think you’re on the right path to an excellent result.
Phil

Thanks Phil.

@tmestanas91, I'm a little late to the discussion, but still want to introduce you to members who are Mayo Clinic Jax patients who can share their experiences and journey along side you, like @jc76 @sparkyconnect @mrdennyb @rxharleydude @maverick75 @themurfs @jic811

TM91, have you had your first appointment at Mayo Clinic? What is the next step for you? Got questions?

@colleenyoung yes thank you. I had my introductory meeting with Dr Matthew Hews last week. I’m working on getting Mayo all my scans so they can give me their best advice for course of action.