Gleason 9 treatments--proton therapy, surgery and or ADT

Then you should be looking at High Dose Rate brachytherapy instead of surgery. Why do you want the double side effects and risk of surgery and radiation when you can use brachytherapy and external beam for better cancer control and less side effects.

Also why Proton? It is no better than IMRT just much more expensive and most insurance will not pay for it.

You need to go see some great radiation oncologists. Do not let an urologist speak for the RO. The urologist is not expert in radiation therapy.

Positive lymph node was diagnosed by the radiologist because it "glowed" when he did the MRI of the prostate. Not sure how accurate that is but he says 100%. Still planning a biopsy of the node unless go the surgery route (then would assume they could do it at the same time). We have been told by the same radiologist that proton was much safer than traditional radiation. Not sure how accurate that is. Will be consulting two surgeons and another radiology oncologist (the guy that did the biopsy contradicts himself too much and is not an oncologist). Any recommendations guys on radiology oncologists in the south east? (BTW in case everyone has not figured this out yet -- I am posting for my husband who refuses to even read the blogs online)

Not sure what you mean by Southeast. If Nashville is a possibility, I liked my radiation oncologist at Vanderbilt.

No problem at all. I saw Dr. Eric Shinohara, whom I believe is still practicing at the Vanderbilt Cancer Center. He was very patient with my long list of questions, and had what I considered to be good answers to them.

For what it's worth, Vanderbilt is a conservative operation. They're a regional referral center for people needing help with complications from treatment elsewhere, so they seem to have a careful approach. If you want avant garde, they're not that kind of facility. For instance, when I was considering treatment options, they were not in favor of combining HDR with IGRT, just so you know that going in. They considered the side effect risks (urinary strictures) exceeded the potential increased cancer control. At this point, I have no position on that whatsoever, claim no knowledge, express no preference. It's up to you to pursue that as you see fit and as you find reasonable, or tolerable.

My experience there was 3 years ago and their position may have changed.

I'm sorry to hear of the diagnosis, but am glad you found your way here. There are many people here who have a variety of experiences. You may find some good advice. I have.

I've taken the liberty of adding you to the G9 Crew thread, a gathering place for those with this situation. It's meant to be a resource, a place to discuss the somewhat unique issues we high-risk cases face. There are a lot of people on that list, and you may find some to contact if you choose to do so. Here's a link to the thread:
www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3182504#m3182504

All the best as you decide what to do, where to go. It's quite a roller coaster ride!

If the +lymph node is verified, then surgery is a waste of time..The horse has left the barn...Today's Photon LINACS match the effectiveness and safety record of the Proton machines..There is no proven benefit..Your husband is in a fight for his life..You hit it as hard as you can with everything that's available. Gleason 9 guys are in a whole different world than Gleason 6 and 7 guys. We play this game by different rules.....Choose your Radiation Oncologist carefully...

Thanks everyone. Our local surgeon totally rejected surgery and I guess we are in agreement with that. We are seeing a radiation oncologist local to our area which kind of freaks me out. Supposedly he is very good but I guess the worried wife in me would just prefer a larger prostate cancer institute. I am for sure going to do a phone consultation with Datolli ASAP.

Besides researching local Radiation Oncologists, you should enlist the counsel of a national PCa Medical oncologist.

Rely on the MO for general approach and the RO for specifics.

In my case I live in west central rural FL but enlisted the help of Prostate Oncology Specialists in Marina del Rey CA (Dr. Jeffrey Turner is my MO but is an associate of Dr. Marl Scholz and Dr. Richard Lam and they collaborate on all their cases) and Dr. Chris King at UCLA is my RO. So you can do both consults in one trip to LAX.

My specific treatment was SBRT radiation concurrently with Provenge. Next month will mark the 24 month and I have had no adverse side effects and PSA remains <0.01.

You can read so many success stories in the thread Redwing57 provided for G9 crew

The aforementioned Prostate Oncology Specialists is Marina del Rey (near LAX) is one of the best, but if you're in the South East, that's pretty far. Any of the docs will do a phone consult, however, and I know that several folks here have interacted with them that way. You can google them for more info.

Hello Moody Blue,
One of my favorite bands. I am also the wife of a computer illiterate G 9 guy. You can read my DHs specifics in the signature. A lot of collective knowledge and support here. You are wise to do the research and consults. It is not surprising your DH is actually feeling better on ADT. That means it is doing it's job, and getting the right tx in conjunction will be crucial at this juncture to hopefully help your DH achieve a lasting remission.
Good luck and keep posting.
If you want, create a signature line in "my profile"' so you don't have to remind everyone of the specifics of your DHs dx and tx.
Beth

Duration of ADT is a rather controversial topic. I did 18 months and you'll find other G9 guys here that have done anywhere between 18 months and 3 years. But re-reading your thread above it looked like your husband had a positive lymph node. I do not know how that could/would affect the treatment. Can I presume his IMRT included his lymph nodes?

I've heard things all over the map on that one. Some go 2, 3 years and some just 18 months. It's a tough call.

Worst case is that he has to restart HT at some point in the future.

Andrew