I am considering making an appointment with Dr Mark Scholz for a 2nd opinion ($1200!!) I am currently undetectable on ADT + Zytiga after RP and SRT. My MO at Kaiser is a general oncologist and I am thinking of getting a game plan from Dr Scholz for going forward when BCR happens.
I was wondering who else has seen him for a 2nd opinion and what kind of advise you were given? (I know everyone is different.) Did he suggest things your other docs didn't. Did he add things like metformin, Adovart, etc? Kaiser won't do these things.
Just trying to figure out if I should see him now or see him later when things start to change. Thanks ahead of time for anyone's help!
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I had a second opinion from Dr. Scholz's colleague, Dr. Turner at Prostate Oncology Specialists. It was worthwhile. Nothing too different than the standard of care I get at Dana Farber, but reassuring and helpful. Feel free to call me 207-650-8983 if you want to discuss. Josh.
It sounds like you are doing just fine with the ADT and hopefully (!!) the radiation (or the radiation in conjunction with the ADT) was (are) curative. Only you can decide, but since you asked, I would hang on to your $1200 for now.
I had radiation to to the prostate bed after RP and that did not work for me. Subsequently a bone met treated with SBRT so Dr. Turner recommended Xgeva (or probably would have been okay with Zometa), which my MO said was not necessary... yet.
I am now on an ADT vacation and added Avodart at Turner's suggestion. My MO said "we do not prescribe that, but I don't think it will hurt.". I asked about Metformin. None of the doctors think that is necessary for me since I don't have any metabolic issues.
Ride this good tide for as long as possible . I did RT and I’ve been on adt almost five years undetech.. I wish you the same . I don’t know if it’s good to plan ahead what to do ,I feel that we should live healthy daily and live for today . It’s possible for you to be undetech for awhile ...some have had 8-9-10 yrs or more .. Good luck to you Sir .. we know this is either “us” or “APC”... keep striving to save yourself .. Remember to enjoy what you can daily .. For us to survive this it’s a marathon not a sprint ... You just might do better than you think ... it’s like the “little train that could”,that I read s a child . “ I think I can , I think I can , I think I can “ Stay positive about yourself .🙏
You are a born leader then .. keep up the good work . Like John Wayne said” A mans got to do what a mans got to do” our job is to stay here as long as we can . Keep keeping on !
I met with him with a patient last week. I found him well-informed, and compassionate. Perhaps he could use a little bedside manner (he criticized the patient for not tracking with him). I've met with several of the leading oncologists in the area, and found them all to be good. I particularly like Edwin Posadas at Cedars for his empathy and knowledge of genomics; Tanya Dorff at COH for her work on cutting edge immunotherapies; and Matthew Rettig at UCLA for his work on growth pathway inhibition. David Quinn at USC is doing some interesting work, although I haven't met him.
He did not suggest adding Avodart to my friend - perhaps because it adds nothing when one is already taking Lupron and Zytiga. My friend already takes metformin and statins so we didn't discuss it. He was open to exploring avenues I brought up. He is very good at "positioning" the diagnosis to get insurance approval - but if you're at Kaiser, that won't matter.
If you're looking for a thoughtful appraisal, I think he's a good choice. If you're looking for a Snuffy Myers-like approach, he's not that.
Thanks T-A. I appreciate the feedback. I will definitely keep those doctors in mind. As I said I am <.1 now and will be on ADT for another 18 mos and hopefully stay that way. I am leaning towards saving Dr Scholz and these other docs for when they may be more helpful.
I am 67, but not on Medicare yet. My wife's insurance through Kaiser is so good, all my treatments so far have not cost me a dime!
If you might be within the Northern California Kaiser system, Andrea Harzstark at the Kaiser Oakland Medical Center is a go-to Referral for advancing prostate cancer. She previously trained and worked at UCSF in Urologic Medical Oncology for 5 years with mentor Dr. Eric Small, and also worked at UCSF with the Prostate Cancer Clinical Trials Consortium. In 2015, she transferred to Kaiser's Oakland Medical Center to help create a Regional Urologic Oncology Program. If anyone cannot get a Kaiser referral to her quite yet, then maybe later as one's actual situation begins to change.
Yes I am familiar with her. My MO does consult with her. Being part of Kaiser, it is still all about SOC. Up to this point they have done what I needed. I am just thinking about down the road. Worrying too soon maybe, Thanks.
FWIW, I am a patient of his, and believe he has positioned himself as a visionary in PCa tx, so you will find him recommending aggressive treatment. If that suits you, talk to him, otherwise just read his book and PubMed. If you are stage 3 or higher, he will recommend early chemo + Zytiga per Stampede.
Ok, failed RP would mean the PCa is extracapsular, and would be stage 3 advanced PCa, provided no mets in bone and no mets in LN's above the common illiac artery, otherwise, it's stage 4.
Thanks. You are correct. I had ECE in my surgery pathology. An mri at nih found a 4 mm lesion on hip bone but was suspicious, not confirmed yet. I a sitting here struggling on what to do next. My PSADT is good so my doctor, a great one at MSK said if you want to watch it, we can watch it and repeat the mri in 4 months. It’s very frustrating and I am afraid if I am delaying the start of adt and making things worse.
Ok, you need to get a PSMA scan to determine if there are mets, before you start ADT and PSA >0.2. Another MRI in four months is useless if your PSADT is long, say over a year, surprised MSK would recommend it instead of a PSMA scan.
When I went to NIH in 3/2019, they did both the mri and 18f dcfpyl scans. The pet scan found nothing but the mri found this suspicious met. I have a longer than a year DT.
The Oncology Specialists in Marina Del Rey require your medical records on paper. Image CDs of course have to be on CD. I would have to hustle for 2000 pages at 4 different medical centers, and all my scan CDs. I decided not to see that group because of that.
$1200 is not cheap either. You are on a Kaiser HMO so you are not covered for that outside 2nd opinion. A less costly 2nd opinion may be City of Hope West Covina, Dr Presant. If you want to add metformin to your list of meds, he will go along with it and write you a paper note for it. Cash price for metformin outside of Kaiser at Walmart Pharmacy is very cheap.
If you want to get other meds, he will write a justification memo for you to take back to Kaiser to try and convince Kaiser doctors to prescribe it, and you dont have to pay for it, or a $5 Kaiser copay depending on your HMO coverage. City of Hope West Covina has lot of clinical trials too that you can consider.
Kaiser is limiting you and you soon will hit a wall when your condition gets worse. You will get worse because you got a Gleason 8 on pathology. Consider trying to get a PPO coverage on Medicare since you are at that age. You can see any doctor you want, anywhere you want in the USA, and get all your meds paid for with a copay. If you are on medicare HMO, you will have difficulty switching to PPO. Medicare HMO locks you in unless you quit your job and lose your insurance, or move more than 400 miles away to a new service area.
I have been seeing Dr. Scholz now for about 10 years with occasional appointments with his associates there. They are all awesome! They definitely think out of the box and they have a big enough patient base to get a good feel for what’s working and what is not. He had me do Zytega, Lupron and chemo along with SBRT to my three metastasis. He also has me on MetForman. I would save your money and not consult with him until your PSA starts rising. Then I would get a PSMA test and then consult with prostate oncology specialist doctors to get their opinion on your next course of action. Feel free to private message me if you want to hear more.
I interviewed with Dr Scholz and Dr Posadas in 2014. I did not care for Dr Scholz, liked dr Posadas much better, but ended up with dr Myers, and now dr Drake. Personally I think $1200 is a waste of money at this point in your disease. In 2014, a consult was $600, cheaper if you did a phone consult.
I went to Dr. Scholz for a second opinion a few months ago. Everything I have done with Dr. Scholz has been out of pocket for me and it hasn’t been cheap. I have been a Kaiser member for nearly 20 years so there are limitations. After seeing Dr. Scholz He was questioning why my PSA level was not at an undetectable level. I have been on Lupron alone for the past two years. Just starting my third year now. Currently at .5 psa. He recommended me having PSMA scan. He gave me all the information for about five or six clinics across the country that do that scan. I contacted every clinic and submitted my information. Initially I was turned down by everybody because my PSA was not rising. I finally got excepted by UCLA, had the scan done. They did discover multiple other areas that were not detected in the original CT scan from Kaiser.
Dr. Scholls recommended me to have a round of Provenge and then add Zytiga to my treatment.
Kaiser will not do a provenge treatment because psa is not rising at this time, but is allowing me to start zytiga.
Overall I have been happy with Dr. Scholz. He has given me some options. If I was in your shoes, I would probably wait until you start to see some change before reaching out to him. Not only will you pay your $1200 initial consultation. You will have phone appointments with him that will add up. I believe I typically pay about $300 for a less than 10 minute conversation. Good luck to you
Yes, I saw him for my third opinion. I believe he and Dr Lam are some of the best in the world. Just go there and listen. They do tend to scare you a bit too much as they did me but all you have to do is say no. They advocate too much Lupron which I do not agree with and that is why I am alive with quality if life today. Intermittent ADT is the key or CRPC will result. If you want the top of the list in docs go see Dr Christopher King at UCLA. I owe my life to him. My friend Vincent at PCSPES referred me to him.
Disclaimer: Im a medical oncologist in Omaha NE who specializes in prostate cancer. Trained in prostate cancer at sloan kettering . Opened cancer center in Omaha in 2010...Urology Cancer Center & GU Research Network. I see ~400 prostate visits/ mo from 40 states . We have more clinical trials for prostate cancer than any other center globally. Several first in world therpies. Please check out vitals.com and healthgrades.com to read over 500 reviews. I focus on education of each new patient (typically 1 1/2 - 2 hrs for new visit) on all options: standard, clinical trials, and outside box options. Nothing against Dr Scholz and his group they are exceptional. I share several patients with them. Ive spoken at his conference and have a book chapter in his latest book. Just want you to know I am Happy to help my passionnis prostate cancer. Dr Luke Nordquist
Thanks Dr Nordquist for the reply. Much appreciated! As I stated earlier in this post I have decided it is probably to early in the situation I am at to get a 2nd opinion right now. Am I right?
Just had SRT to prostate and lymph nodes. I have had 6 mos Lupron with 18 to go and 5 months Zytiga which I hope to go off when a year is up. Currently undetectable and I hope to remain that way for a long time.
I looked at your profile online and I was very impressed! When the time comes when I have a BCR ( I am resigned to the fact that it will happen, although I hope it will be a few years) I will definitely consider a trip to Omaha. Thanks again for your response!
Yes typical 2-3 yrs on Lupron. Duration not set in stone. I typically discuss with my patients how they have tolerated it how badly they want off when deciding 2-3 yrs. since you had SRT your Psa would be considered undetecrable as long as under 0.5 not the typical < 0.05 after surgery
You are very wise in lining up a research MO ahead of time. I did this two years ago and was told at that time that I am "not ready." Last week, having failed the RP, ADT, EBRT, more EBRT, finished Provenge, and with a PET/CT Axumin revealing new mets (non-visceral), I was told, "OK, now you have systemic disease, you are ready for me." I am so thankful I lined this up ahead of time.
Best wishes!
I flew out last week an had a visit with Dr Lam. Chewed my butt for not doing enough to lose weight and build muscle. I learned a lot my other drs just wouldn’t talk about. Nothing I didn’t know except he gave me a .5 psa starting point for psma scan when/if it reoccurs. That was lower than I’d heard and he qualified it with saying it is a baseline. The rest was when to stop the Lupron and zytiga. He confirmed the 18 months my dr has suggested. Was two years when I started. Not sure if they are guessing or not wanting me to stay on it until it fails. Both drs say intermittent ADT is my next treatment if it comes back. He said 50/50. I know that’s a guess. He talked about biopsy of my rectum because of possible invasion but backed of it in the same sentence. That is still my biggest concern but no one is interested in doing a scan now. Also told me I could have it in more places because of no testing was done prior to starting ADT. I had figured that out on my own a long time ago. Pays to go to someone like him at first diagnosis. Everyone around me big and little just treated immediately.
Anyway good guy. Like tall Allen said he was clear about what he wanted you to do. No mister nice guy if that’s what you are looking for. I was glad I went.
Thanks for the update. Good to know. I still plan to consult with them periodically as I navigate all all this. They bring an informed, direct, no nonsense perspective.
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therapist in NJ or social worker and a psych who works with oncology .he is beyond clinically depressed ? Meds ?
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