Hello all,
Recently diagnosed (4/15/2018) Gleason 9-Stage 4 w lymph node involvement. Doing a deep dive into treatment options. Looking at EBRT/seeds/vs. RP, but also very interested in full metal jacket approaches as discussed by Snuffy Meyers and Dr. Kwan. I have a hunch that out of the box cancer Doc's that travel in this lane are far and few between. Any recommends out there for the northwest region, (and possibly California) would be greatly appreciated.
Dr Mark Scholz in marina del Rey is top notch as are the other two drs in his office. They are Prostate oncologists and do nothing but PC. They think out of the box and are up to date on all the latest. They have no horse in the game and will give you non biased options with each options positives and negatives. Can’t say enough good things about them. I highly recommend Scholz new book titled The Key to Prostate Cancer. A must read in my opinion. I also went to ucla for second opinions and they too are great. But Scholz office thinks a little more out of the box in my opinion.
Schwah
Your first decision is whether you are going to go for a cure first, or whether you are just going to try to manage the disease as long as possible. If you are going for a cure, and your mentioning of brachy boost therapy suggest you are, you should be talking to a radiation oncologist and NOT a medical oncologist.
Medical oncologists will not know very much about curative treatments and their ignorant advice may conflict with what the RO wants to do. It is not a good idea to have a "team" at this stage - you need an expert in charge of your therapy. I think brachy boost therapy is the superior choice.
Yes, agreed , definitely thinking Brachy boost, and also fishing for out of the box ad-ons up front rather than doing sequential therapies down the road. Hoping to avoid the "left behind" micro met stragglers that are the bane of this disease. Possibly the team approach leads to common denominator mediocrity, i.e. standard of care, don't want to step on any bodies professional shoes in the group think?
I agree with your assessment of teams - it's hard to avoid either collegial agreement on one end or ego-offending on the other end. I think the empowered patient is the best mediator if more than one doctor is required.
As for "add ons" with brachy boost, there is some question as to whether even adjuvant ADT adds anything:
pcnrv.blogspot.com/2017/12/...
It's hard to argue strongly against at least some short term ADT for high risk patients as some extra insurance. I know a man who had adjuvant Zytiga+Lupron who is undetectable 2 years after his radiation therapy. But that is just an anecdote - I haven't seen actual clinical trials.
There was a clinical trial (RTOG 0521) of adjuvant docetaxel that showed little improvement in 4-yr overall survival (89% -> 93%) with IMRT. But trial results that came out just last week, showed no benefit at all in 5-year biochemical recurrence-free survival:
meetinglibrary.asco.org/rec...
What I think is the most promising adjuvant therapy would be to use an immunotherapy (like Provenge) at the same time you're getting radiation to enhance the abscopal effect. But insurance won't approve Provenge unless you're already metastatic and castration-resistant.
The other thing you can do to maximize your results (to eliminate futile RT) is to get one of the newer PET scans (Axumin or PSMA-based), but insurance won't approve it for high risk patients. UCLA charges high risk patients $2650 for the Ga-68-PSMA-11 PET/CT, but most places won't let you have it unless you are recurrent. I don't know what the cost of Axumin is if you have to pay out of pocket.
"...I don't know what the cost of Axumin is if you have to pay out of pocket."
An imaging center in the Sacramento, CA area quotes a cash out of pocket prostate Axumin scan in the range of $6,000. Might be similar elsewhere.
norcalscans.org/for-patient...
Charles
Steep!
Cost of an Axumin scan here in Atlanta runs around $12K from one of the major hospital groups. Found this out the hard way when the hospital didn't do the required 2 part prerequisite and insurance didn't want to cover. Hospital later ate that cost due to their mistake.
Ed
Tall_Allen is one of the more knowledgeable voices on this site and he’s almost always spot on. But here I take issue with his advise. A Prostate oncologist like the ones on Scholz office can guide you thru the various options. The brachytherapy you suggest is exactly what he had my good friend do with a guy at ucla. Scholz office actually believes that’s a great option. However You need a quarterback to advise you. Each of these therapies has their own positives and negatives and each practioner thinks they are the best and the only solution. A knowledgeable Prostate oncologist will also advise you on the pros and cons of adjunct treatments to get those stragglers you speak about. He’s a firm believer in early lupton with ADY I know. Anyway we are all in your corner and in the end of the day you should listen to all of us and do your own research and make the decisions you deem best for you and your family.
Best of luck. You are asking all the right questions. So that’s a great start.
Schwah.
Allow me to explain why I respectfully disagree with your reasoning.
I think that Scholz, and especially Lam (I've met them both, but I haven't met Turner), are excellent medical oncologists, but they know very little about radiation oncology (nor surgery, of course). ROs in the LA area (and I know the top ones) tell me about patients he's misinformed and misdirected. He has many patients who are in my support groups and I am surprised at some of the things he told them about radiation (just as I am surprised by what urologists have to say about it). And, when you think about it, why should he know? It's not his field and he doesn't keep up with it. In our age of medical specialists and the huge increase in information, it would be unreasonable to expect any doctor to keep current outside his field. Just because he puts on a big patient extravaganza and publishes books for patients doesn't mean he knows what his guest speaker's or writer's know.
Because I am such a big advocate of patient empowerment, I reject the notion that a patient needs a "quarterback" other than himself. We are all capable of learning everything we need to know by talking to the true experts in their fields, and not to someone who claims to be a jack-of-all-trades but is a master of none. Impartiality is a myth. Everyone has biases - Scholz is biased against surgery and SBRT, for example. He has also told a patient with 50% of his cores positive for GS 3+4 that he can stay on active surveillance without a confirmatory biopsy -- I'm very shocked by that.
Even in the field of medical oncology, Scholz, while good, is an "also ran." You can see this for yourself if you use the pubmed searchbar and enter "Scholz M[author] prostate" - there are 27 studies that he was involved in, which is not too shabby. Now, do the same thing with Celestia Higano: "Higano C[author] prostate" There are 181 studies she has authored. And it's not just quantity, it's quality too. Celestia Higano (at UW Seattle) has been involved in many of the landmark clinical trials and is working at the cutting edge of prostate oncology. Of course, she doesn't publicize herself or write books for patients, so you probably never heard of her. But if I lived in the Northwest as the OP does and needed an MO, she would certainly be my top choice.
Who are the top Radiation Oncologists in Orange County, CA?
I don't know, sorry. I haven't interacted personally with patients or ROs in Orange County.
How about in the LA area.
Give me more diagnostic info: Intermediate risk? High risk? Gleason score, stage, PSA? Pelvic nodes? Metastases?. Are you looking for primary therapy, salvage or metastasis-directed?
Gleason score 8. PSA 5.2. Ductal adenocarcinoma. Surgery on 4/18. Pathology report: pT2. Focal posterior margin less than 2mm on prostate for G 8 tumor. Posterior fat negative. G 3+4=7 contained. Waiting on first post surgery 8 week PSA next week. Want to know excellent RO in case PSA high.
So it's for salvage RT. I can highly recommend my RO, Chris King, at UCLA. e and his colleague, Amar Kishan, are running a clinical trial of salvage SBRT, which is HIGHLY experimental. They might also consider a moderately hypofractionated protocol of 25 treatments. But if you're going for the conventional 35-40 salvage treatments, you will want someone closer. Especially with ductal, getting an escalated dose is an especially good idea.
Yes, UCLA is a long drive in LA traffic from Orange County. But I am considering Chris King for conventional salvage treatment. I hear he is in a class above the rest.
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