I know of Eugene Kwon at Mayo Clinic and have probably read many studies he has been involved with. I'm guessing his presentations have been referenced before but wanted to place a general signpost in the ground here. You can search on YouTube for Eugene Kwon DIY Prostate Cancer Treatment. I think he answers many common questions Advanced PCa patients have that come to this forum.
As a sidenote, I'm wondering if anyone knows of a doctor or doctors in California or Nevada that they consider to be sort of the Dr. Kwon of the West? I would guess Dr. Mark Scholz name would be mentioned but he runs a very expensive private practice.
Written by
jazj
To view profiles and participate in discussions please or .
If one is going to get information from youtube (which I don't endorse as a rule), at least listen to someone who is an actual oncologist, and is highly respected among oncologists, like Oliver Sartor, for example.
I can't think of anyone who is has built a reputation by marketing to patients as Eugene Kwon has. But if you're looking for the top oncologists in California, I'd recommend Edwin Posadas at Cedars-Sinai, Tanya Dorff at COH, Matthew Rettig at UCLA, Rana McKay at UCSD, Rahul Aggarwal at UCSF, and Sandy Srinivas at Stanford.
I'm not advocating using YouTube in general or Eugene Kwon as a sole source of information to base treatment decision making on but I think his broad and somewhat in-depth information about Advanced Prostate Cancer answers a lot of typical questions people have. Maybe he's not following the current SOC to a tee but he's also in my opinion not a crackpot advocating things that aren't grounded in science and logic.
Thanks for the recommendations. Rahul at UCSF was already on my short list. He's a bit more conveniently located to me than Sandy at Stanford. I frequent Seattle and Portland is a very quick cheap flight for me so Heather Cheng at UW/Fred Hutch, and Tomasz Beers are also on my short list. I'm particularly impressed with Tomasz Beers' large body of research work although it looks like he's not taking new patients.
Some experts in the field choose to be more publicly visible than others. I honestly don't think Eugene Kwon is involved with PCRI to serve his ego or for marketing purposes. These people have limited capacity as far as how many patients they can consult with so sharing their knowledge in a more public forum I believe is beneficial.
I realize though you are providing a valuable counterbalance in this forum and no one specialist is a Sage in treating Prostate Cancer. Thank you. I do think using the term DIY in the video title is probably a mistake and not really representative of his primary intent in doing them. Maybe PCRI decided on the title and not him.
"in my opinion not a crackpot advocating things that aren't grounded in science and logic."
Yes, he has. What are the sources for any of the claims he makes?
I have met him, and I think he wants to help patients, but he is not an oncologist and has no standing among oncologists, only among patients who he dupes with his videos. Even doctors can climb Mt. Stupid if he ignores clinical research.
I'd therefore love to hear his response to the question why he is apparently ignoring this research. Could he and other Oncologists possibly still be radiating bone mets in this situation for palliative (pain relief) reasons and not survival benefits?
Speaking to radiation oncologists (4), they say it makes patients feel good, like they are in control and doing something. They also said, they feel good too. My opinion is, and always has been - if safe, why not? But don't withhold known beneficial therapies because of it.
I've never seen Dr. Kwon and have no plans to see him at present.
But having seen you post negative comments about him numerous times, I have to confess I'm at a loss to understand your animosity. I watched his five videos and they seemed merely explanatory, nothing really unorthodox. I suspect if Dr. Sartor has similar videos, people would watch them as well. And Dr. Kwon clearly has oncologists at Mayo working with him on cases.
Is this something personal between the two of you?
I met him once for lunch and liked him personally. But I do think he misinforms and therefore harms patients in the videos I've seen. It is particularly troubling because of the availability heuristic - people we see , especially doctors, have more impact than reading statistics.
I understand your general concerns about online research, YouTube videos, etc.
But how does Kwon misinform and harm patients? He seems to have a nearly unanimous positive response from patients who have or are seeing him, from what I've seen whenever there is a post about him.
Anything specific?
As I said, the videos I watched were boilerplate comments about ADT, the add-on drugs, radiation and chemo. I did not pick up anything in the way of a sales job, except that the viewers knew where he worked. And he even mentioned Dr. Sartor's recent arrival. And Dr. Sartor, as you know from posts here, uses BAT therapy, prescribes metformin, and other things that I'm not sure Kwon does.
I think he helps desperate patients get to the top of "Mt. Stupid" faster. I know he is a crowd-pleaser at PCRI, where I met him. I have heard him say outrageous things like "treat only what you can see." He makes patients get outmoded C-11 Choline PETs to help Mayo recoup its enmous investment. Do you think it at all strange that he is never invited to speak to oncologists, and is not the principal author of any publications in the field (except in genomics)?
I don't know how much individual oncologists get into presenting papers at conferences; that's probably a world unto itself. But it seems Mayo Clinic would call him to account if he were doing something really wrong. I suppose doctors should be judged by patient outcomes, but whether one can compare patient outcomes without knowing the conditions of all their patients, and the treatments they use, in comparison with all other doctors, is another question.
I've just noticed over time that you seem to be the only individual who criticizes him here, or on any other forum I've seen where he has been discussed, and your criticisms are quite harsh.
But as I said, I've never communicated with him. If I went to Mayo, I'd probably see Sartpr, based upon feedback on the forum that seems to apply to my own situation.
He is unique in that he is not an oncologist, yet routinely misinforms patients on oncology issues. Mayo, like all institutions wants to maximize profits, which is why they push C-11 Choline.
Adding, Allen criticizes a number of doctors and many patients, and yet, he does not face metastasis nor is he medically trained. It is truly wonderful he was cured by a single focal treatment. Why he speaks beyond his experience, such as speaking on oncology issues, and is quick to tell folks like me how wrong I am with uPSA testing, imaging and liquid blood biopsy testing is all beyond me.
If you have comments about anything I write, you can say them. Otherwise, it is just ad hominem attacks. I assume you resort to that because you know nothing about the issue.
I have managed prostate patient support groups for 14 years and have many good friends who have passed away from it. Both of my parents died of different cancers. Have you ever helped anyone? Maybe if you knew others personally, you wouldn't be so glib about it.
My dad had throat cancer and I cared for him in my home during his last year. He bleed to death in my arms; I was twenty-seven. My sister died this past summer from lung cancer. I was at her side many times and for her last three days; her final breath as well.
Patient advocacy and support is important in my life and yes Allen I too support other men and I too know men who have died from this beast. These truths could serve as an example as to how one should be cautious before assuming, before attacking; as you have just demonstrated your own ad hominem attack. (I note you have used this ad hominem defense before; interesting).
What issue is it you assume I know nothing about? And what is it I am glib about?
Would it be correct you meant to write 'If you have comments about anything I write, you can say them" directly to me? I strive to find a proper way to disagree with you when I feel it will help frame the debate, the disparities, the misinformation we all face fighting this beast.
It is clear you do not like to be questioned nor challenged. Darryl has politely made it clear he prefers I not question, challenge, debate you. Well, if HealthUnlocked is about unlocking then you too should be open and receptive to questions and challenges.
In my advocacy efforts I strive to assist others in being patient detectives, patient scientists and strong self advocates, based on my own experiences and understandings. I do this in person, phone calls, podcasts, I write and have been interviewed.
Both Dr Kwon and Dr Oliver Sartor are at Mayo and part of my husband’s care team. They have been very helpful giving local recommendations for doctors in Cleveland, our home. We see the Mayo team 3 to 4 times a year, but have care at home, like lupron injections, bloodwork, and prescription refills, with a local oncologist.
The Mayo doctors also do remote consults so you may want to ask them for their recommendations. I cannot stress enough how helpful they’ve been and how well my husband has done in their care. He’s 7 years in with aggressive Gleason 9 disease yet continues to work, play, and travel.
I am not a patient of Mayo Clinic so I do not make personal comments. Two close friends of mine are patients of Dr Kwon and both feel he and his team have served them acceptionally well.
I agree. Dr Kwon is a urologist specializing in prostate cancer and works closely with radiation oncology, medical oncology, interventional oncology, and orthopedic onco. So we see many doctors at Mayo, but Dr Kwon’s team coordinates them so we can consult with all of them on the same visit or remotely. Very efficient and it lowers the stress levels.
The team of docs are all experts in their fields…..look up Dr Oliver Sartor, Dr Bryan Traughber, Dr Sean Park, Dr Peter Rose, Dr Eugene Kwon, and more. The support staff is also outstanding for continuity of care and coordination of medical benefits.
I too am under the care of Dr Kwon at Mayo, I have done well beyond all early expectations following his approach. I have two other local hospitals that I also receive care at that are happy to work under his care and approach.
Consider Mayo for direction and receive some care if you want or need at local hospitals. He will also perform some telemedicine visits.
Eugene Kwon is one of the most highly regarded PCa experts in the country. I disagree with the disparaging comments made by some. He is a urologist that has decided to subspecialize in treating PCa. The fact that he is not an oncologist means very little, in this instance. He is well trained, has done a significant amount of research and study in this area. One does not become a tenured staff at the Mayo Clinic by "marketing" any more than you would become a partner at Goldman Sachs or in a prestigious law firm by YouTube appearances.
I have also seen Dr, Scholz, in CA. He too is well regarded but I was a bit turned off by all of the superfluous lab tests he wanted and, as mentioned, he is expensive. Mainly because a lot of his tests are not covered by insurance. UCSF has a strong reputation for PCa treatment as do UCSD and UCLA. You will be well served at any of these institutions.
Well said! Seven years ago I consulted with Scholz. I too was turned off and found several of his recommendations to be wrong. I do respect different opinions of actual patients - their earned prerogative based on actual experience.
I think, regarding Kwon, one shouldn't get hung up on the training. A surgeon learns just about as much medicine as an internist (oncologist) then also learns the surgical procedures. That is why the training programs are 5-7 years. A urologist who specializes in PCa is totally legit. Kwon no longer performs surgery so that takes out that bias. He does refer patients who need chemo to another physician as he does not administer chemo.
He has years of experience, well respected and holds a position at what is one of the best institutions in the world. The fact that he has made some instrutional videos does not diminish his standing. The Mayo docs are on salary so, one can't argue that he is trying to drum up some business.
Strange, I cannot find anywhere a mention of you being any form of a physician; just someone who has their own opinion...User Info
Joined
April 28, 2023
Age
71
Gender
Male
Country
United States
Ethnicity
White
Bio
Diagnosed 7/23. G7 (4+3) Had robotic prostatectomy 9/13. Did well until 2 years later when PSA began to rise 10/15. Had SBRT of fossa with 6 months ADT. Spring of '16. A year later PSA rose. Seen at Mayo, had pelvic lymph node dissection. 2 years later, PSA rose. Seen again at Mayo, had pelvic node frozen. PSA went down but never to 0. Began creeping up fall of '22. PSMA scan showed pelvic node and small lung mets. Had pelvic node frozen 12/22, began ADT/Darolutamide/Docetaxel 1/23. Complete Docetaxel 6/23.
I am an active person, still work full time. Born in 1953. Bicycle, sail, read, travel. Married, both active
You say no need to put your occupation, but in same breath you mightily beat your chest and declare: "I am a nationally recognized physician"...who actually knows you?
The point of this board is to remain somewhat anonymous. Thus, I don't use my name, location or occupation. Similar to most on this board. Was not beating my chest, just stating a fact. Not sure why that offends you. If you want to send me a private message, I can clear things up for you.
I just want to reiterate I placed this signpost of a thread not because I am advocating following Dr. Kwon's treatment strategies, but because his videos are highly educational and if watched (with a grain of salt), would answer a lot of general questions about advanced prostate cancer, drugs, etc. These are things it could take multiple appointments with their oncologist over weeks or months to learn. His videos are complimentary to other information sources, not the PCa treament bible.
I personally believe when making treatment decisions that could have significant effect on the outcome of a potentially fatal disease, you should get at least 3 opinions from 3 different specialists at 3 different centers of excellence. (And never tell them what the other specialist told you until you've talked to all 3.)
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
A general Thank You to this group
Medical Oncologists specializing in neuroendocrine prostate cancer (or advanced and rare prostate cancer)?
Darolutamide plus olaparib
Erleada, Zytiga, Xtandi and other 2nd Generation Hormone Therapies may be "Double Agents": BEWARE!!
