Ever since Dr. Myers retired, I have been less than happy with my oncologists. Who are the best prostate-specific oncologists right now? Specifically, those treating advanced, hormone resistant PCa. I will travel the world for treatment, if necessary, but want to have my oncologist orchestrating treatment here in the U.S.
Who are the great prostate cancer onc... - Advanced Prostate...
Who are the great prostate cancer oncologists in the U.S.?
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Fort Worth, Texas. I travelled to see Dr. Myers twice a year for 6 years and I'll go wherever necessary to find the right MO.
Thank you. I will try to get more info on the individual MOs at MD Anderson. If you don't mind, I would like the name of your oncologist. As much as I loved Myers, I have no delusions that I will find someone just like him. But, there has to be someone out there who is a good combination of mainstream SOC with some interest in cutting edge treatments.
Many hold Eleni Efstathiou at MD Anderson in very high regard. I go there but she’s not my mo, however I’ve heard her mentioned often by my fellow patients. As I recall Tall Allen from this blog recommends her.
The problem with some of the top oncologists is that they don't see new patients. Also, they are a highly specialized lot, so I tailor recommendations to patient needs. For example, Misha Beltran at Dana Farber would be a top choice for neuroendocrine PC; Scott Tagawa at Weill Cornell would be a top choice for PSMA-targeted radiopharmaceuticals.
MD Anderson probably has the deepest urologic oncology department with such luminaries as Eleni Efstathiou, Anna Aparicio and Paul Korn. MSK is excellent, but Michael Morris and Philip Kantoff no longer take patients. UWSeattle is definitely in the top tier, headed up by Celestia Higano. Johns Hopkins has a great department too, with Emmanuel Atonarakis always forging new ground in genomics, along with Mario Eisenberger and Ken Pienta. Oliver Sartor at Tulane is excellent. Maha Hussain at Northwestern; Mary Ellen Taplin and Christopher Sweeney at Dana-Farber... I can go on and on - you wouldn't go astray with any of them. They all know each other, are aware of the major clinical trials they're each working on, and will confer with those working on areas of specialization unique to their patients.
In my experience with patients in the LA area, I've found the ones I've met with patients (Posadas, Scholz, Lam, Rettig, Dorff and a few others) to be knowlegeable and caring. Some have better bedside manner than others, but I found all of them open to new approaches and very much into shared decision making.
Any recommendations for oncologists in San Francisco, or UC Davis, Sacramento?
At UCSF, I like the work Rahul Aggarwal is doing, and Eric Small is good too. At Stanford, there's Sandy Srinivas.
Thank you!
How about Seattle for a good recommendation if one comes to mind. Most likely will be making a change from current Swedish oncologists. Thanks
That's easy- Tia Higano
Thank you for the name. Sadly I already checked and she is not taking any new patients.
I've talked (via email) to Evan Yu and was impressed.
Thank you I will check him out and appreciate the input you provide on this site.
Why is Dr Higano no longer affiliated withe Seattle Cancer Care Alliance? Where do I find her? Does anyone know?
I don't know. Let me know if you hear anything.
I second the choice of Celestia "Tia" Higano at the Seattle Cancer Care Alliance. When I am at a juncture requiring a new phase of treatment I go and consult with her.
Thank you. I think I will try to get on the waiting list as a new patient at least, since she is not taking new ones at this time...
If you have a local MO at this time you might instead ask for a consultation / case review by her and indicate that you do not plan to transfer care to her otherwise. That is what I do. Then my local MO follows through with me on the plan.
Thank you for the input
I'm in a clinical trial with oncologist Michael Schweizer. I took neoadjuvant meds 12 weeks prior to surgery. Now ~18 mos. post RP, my PSA remains below threshold, so I have not met with Dr. Schweizer since start of the trial.
I do however remember professionalism and time spent carefully explaining all that was involved. Since I knew nothing about PCa, was scared, he framed explanations in terms that I could understand.
My visits were at UW Medical in Seattle, yet I believe he is affiliated with SCCA. Here is a reference on current trials there: seattlecca.org/diseases/pro...
Recently added brain metastasis to bone and liver-
Who if any specializes in this rarity?
Southeast region-
Emory is involved-
Radiation completed yesterday.
In the soft tissue of the brain or in the cranium pressing against the brain? I would think that Emory is pretty good. There's Armstrong at Duke or Sartor at Tulane. I'm sure Vanderbilt has some good oncologists.
Just curious because I value your advice. Is there a reason Mayo in Rochester is excluded from your list?
They're fine. As I said, there are excellent oncologists at every major tertiary care institutions. I listed some of the ones I know are working on ground-breaking therapies. You can try Manish Kohli at Mayo.
Dr. Kohli left Mayo Rochester the first of 2018. He was my Dr. and I miss him.
Thanks for the update - it looks like he went to Moffitt in Tampa. That leaves Mayo without any notables in prostate oncology. Their depth is in urology.
Thank you.
I was just told by the "head" of the department that they only have 3 GU Oncologists remaining currently at Mayo/Rochester. They do NOT want to see any new patients and would prefer to not bother with most of their old ones. My favorite oncologist of the past 13 years at Mayo/Rochester transferred to Mayo/Jacksonville 2 years ago. Something feels off/wrong with the Mayo/Rochester department of late. Yes, Kohli left as well. Have you heard of Charles Ryan at the U of Minnesota?
Yes, he does a lot of research and seems to be well-informed. He used to be at UCSF, and several of his patients there spoke highly of him.
Thank you, Tall_Allen!
Any thoughts on the MO’s at OHSU in Portland, OR?
Tomasz Beer
Any MOS in the Denver area or at University of Colorado medical center?
Sorry, no names come to mind
Sorry, my post meant for MateoBeach
Hi TA, unfortunately Dr Beer is not taking new patients. Are you familiar with Dr Julie Graff in his department? P.S. thanks for everything you do to inform us brothers.
Sorry, I don't know of her. Yeah, that's a problem with the top ones- their dance card gets filled up quickly. Usually, they have mentored someone who checks with them.
Yes Tomasz Beer. And for radiation there Arthur Hung.
MB, please see my post to TallAllen meant for you.
Have you heard of dr Kessler at univ of Colorado? Or dr Goodman in Las Vegas? My husband has both and feel he is getting excellent care- but he’s still hormone sensitive so early into this.
Sorry, no. Nick Vogelzang is in Las Vegas.
Thx for reply
Dr Goodman is in same practice as dr Vogelzang. And is also a prostate researcher. One reason why we chose him .
No NCI in Vegas.
I agree. I am getting excellent care at Dr. Efstathiou’s clinic at MD Anderson.
I would like to repeat what another member recommended; Maha Hussain at Northwestern. She was my oncologist before she moved to Northwestern. She remains on the cutting edge of research and is held in high regards among her peers.
If any of these people could produce a CURE for metastatic prostate cancer, we would all know about it in 15 minutes. What they all excel at is making you THINK they can make you live longer than anyone else. But the mortality charts for stage 4 metastatic prostate cancer are all pretty much the same regardless of which oncologist is calling the shots...Some of us live for two years and some of us live for 10 or even 12 years and the rest of us fall between those two end points.. I'm sure choosing the best oncologist you can find can keep you alive as long as possible but even the average onco will do pretty well.. They all work together, go to the same seminars..use the same treatments...Are there a few of them who have special magic ? Good luck in your quest for that...
Dr. Meyers had Gleson 9 PCa, and he is still alive right? So why using his protocol is not working? I don't recall his PCa stage. Any one have details about Dr. Meyers full story up to date? Is he on ADT?
Pretty certain he’s still alive 15+ years after dx. I’m not certain but I believe he also suffers from Parkinson’s. When I was seeing him I don’t believe he was on ADT. He was an awesome MO, I definitely miss him. If you read his book it describes the early treatment he underwent.
Ed
Disagree. Not all oncologists are the same. One oncologist at Kaiser with a wall full of degrees told me in 2005 after I failed Lupron, "you can do Chemo but it will only extend your life for a few months, but dont worry, KAISER PAYS FOR HOSPICE."
Dr Charles E Myers was a unique oncologist who used drug combinations for longer survival even before the clinical trials said the combos would work better than monotherapy. He had no problem prescribing OFF LABEL meds. Most SOC textbook oncologists did not like him. UCSF did not like him either.
Before the estrodiol patch was approved for prostate cancer, and years before Zytiga got approved by the trials, Myers was already prescribing the patch OFF LABEL label for 2nd line hormonal therapy and combining it with Ketoconozale, OFF LABEL and Leukine OFF LABEL. I got my longest remission at PSA 0.1 from him after failing lupron. I had already tried Megace monotherapy with only a minimal response, and also Keto alone with little success and it left me with Jaundice. Myers was the only doctor to give me UROSODIOL for my liver, fully recover from any liver issues, and to restart Ketoconozale at 1/3 the dose, then with UROSODIOL, work up to full dose later checking my liver weekly (adding in patches and Leukine).
With Myers, he not happy with a rising PSA. When PSA began to creep up a little, he sent me to Sand Lake Imaging in Florida for a combination of 5 scans, including a sodium floride scan that was approved for breast cancer but not prostate cancer. (An OFF LABEL SCAN). Got a 32 page scan report written by 3 doctors (Compare that to the 2 page reports done at Kaiser by outsourcing the scan readings to India doctors to save money). Scans saw a spot on a pubic bone, but more than that, identified an aneurysm of aorta that was dangerous, after which I followed up at Kaiser and they found a hole in my heart and plugged it. No more afib after that. No more dizzyness. That scan saved my life.
After that, I got Provenge scheduled at City of Hope West Covina and radiation scheduled. Myers wrote me a justification memo to help me get Provenge scheduled based on a rising PSA. He was smart. Dont tell them about scheduling radiation. Let the rising PSA qualify me for Provenge. Radiated that spot on the pubic bone and immediately started Provenge after that. PSA went from 8 to below 0.1. Super sensitive PSA undetectable as well for a very long time. Almost thought I was cured. Scan follow ups were clean. After showing my results to Kaiser medical oncologist, from that point forward, he always cross checked anything he would do with Dr Myers as my primary oncologist.
Today, thanksgiving day, is my 18 year anniversary of surviving prostate cancer survival. Not all oncologists are the same. If I stayed with Kaiser advice, I would have been in hospice in 2007.
you are correct and sometimes I feel the same way. They all know the drugs that need to be prescribed. It’s not a secret. The issue is when to prescribe the drugs is the main problem. You said 2-12 years. I have heard of people on ADT alone for 15 years and still going
What’s your opinion
Seconding Tall Allen that many of the top oncologists are extremely busy doing research, heading departments, and traveling to make presentations. They often don't take on new patients. When they do, their schedules are extremely tight. I recently told a friend just diagnosed to see the #2 or #3 recommended oncologist at a top cancer hospital. The protocol is going to be the same, but the next MO down from the top MO will have more time for you.
in reply to spouse21
That is a point well taken.
in reply to spouse21
Still get 15 minutes every three months maximum.
I travel from either east TN or CO (depending upon the season) to be cared for by Dr. Eleni Efstathiou at MD Anderson Cancer Center in Houston. It took two years but my mCRPCa is now ready for her attention. I recommend that you stay in-state. MD Anderson is one of the best research cancer centers in the USA.
"It took two years but my mCRPCa is now ready for her attention."
Well, maybe this explains why I have not been able to even talk to Dr. E during my last two visits to MDA. Happy to say, I'm still hormone sensitive and undetectable. She got me there, but I would still like to have a discussion with her about how to stay this way for as long as possible and what she sees as the next step on that inevitable day when I'm not. I know she's busy for the reasons TA gives, and I tell myself that you need her time more than I do at this point. Still, communication is good. I visit Dr. Sartor also twice a year, and he is always willing to talk as long as I want.
The “two years” refers to the time it took my cancer to progress after chemo, a second round of radiation, and Provenge. A scan ordered by MD Anderson caught a new met last November.
I think I have your answer. Prostate oncology specialists. They are in Marina del Rey California. Two of The three doctors there were mentioned by Tal Allen. Dr Scholz and dr lam. The third is dr turner. Interestingly I had lunch with Dr. scholz last week as we have become good friends. Dr. Myers name came up and he thinks out-of-the-box the same way Dr. Myers did. He has a great deal of respect for Dr. Myers. As way of example, Scholz and his associates were giving patients the combination of Zytiga and Lupron to hormone sensitive men many years before it was shown to reduce deaths by some 40%. In fact he treated me with Lupron Zytiga and chemo for my three metastasis. He also had me do SBRT on the three. I would’ve never even found the three mets for a few years had he not sent me to Arizona to do an advanced imaging test. He’s also a strong advocate of a plant-based diet. These guys have a combined 2800 patients and they collaborate very well with each other so they have a great idea of what’s working. They are the closest thing to Dr. Myers in my opinion. Everything I’ve done I’ve got a second opinion from UCLA. They would say “it seems to make sense but there’s no study yet so we cannot advocate for that. But we think a study of that kind would be a good idea”. If you want out of the box, but logical well thought out out of the box, these guys are your guys. I’ve had appointments with all three and never felt rushed and never felt stupid for asking questions. They will also let you do phone consults but it’s best to see one of them in person.
Schwah
Indeed, Myers started my dad on Zytiga + Lupron, back in 2015, while he was still hormone-sensitive, as soon as he saw mets rapidly appearing in his bones and left kidney on scans.
Arthur
I was going to take a trip to SCAL to visit Prostate Oncology Specialists in Marina Del Rey because I wanted to try a tapeworm protocol and could not find any dr to prescribe it. It would have been an expensive trip because I think they bill you for the overage that medicare does not pay, and I think the first appointment to do a complete medical record review costs $2000.
I also needed some other off label meds. I looked and looked, found nobody, except Prostate Oncology Specialists who are not afraid to try new things. All others are too afraid to do try something they have never done before. That is what I miss about Dr Myers who retired.
Turns out my old City of Hope Oncologist in West Covina was able to write me paper prescriptions for all my off label meds (except 1 which I was able to get from Mexico), so I canceled my appointment with Prostate Oncology Specialists.
My idea is to do Tapeworm protocol for a short time while waiting for other more serious treatments to start.
Got on the schedule for some Stanford SBRT/CyberKnife radiation for some spots in lower spine and possibly one on the hip. After that, will schedule cabazitaxel chemo locally here in Sacramento to knock it down more. After I get to a point where I start feeling less pain, I'm flying off to Argentina for a couple weeks to do some tango dancing in the bars and to eat that great food. That is my plan.
I second that. My wife's sister in law is professor of radiology there and I got a detailed outlook on prostate cancer expertise. They are still very, very good and have plenty of experts.
I was also a patient of Snuffy, and definitely miss him. I’m currently seeing Dr. Sartor at Tulane and I am very pleased with him. Definitely cutting edge, extremely knowledgeable however not “out of the box” like Snuffy was. Definitely trial based treatment, but he is definitely cutting-edge. Traveling to NOLA twice a year is not bad either. Not sure if he’s taking new patients, I was fortunate to get in, he took on many of Snuffy’s patients. Snuffy spoke extremely highly of him.
Ed
Dr Myers personal recommendation for me after he retired was dr Charles Drake at Columbia. Did not see his name mentioned.
Yes, Dr. Drake at Columbia, and Dr. Anna Ferrari, now at Albert Einstein-Montefiore in NYC, were Myers' recommendations by Myers for my dad.
I live in New Jersey and I thank God that I was sent to my Urologist by my primary doctor. Dr. Gordon Brown of New Jersey Urology has been a Godsend to me his knowledge and compassion are what is keeping me alive. Dr. Brown sits on several top Cancer boards and is on the cutting edge of the latest treatments. Best of luck in your search. Leo
Dr Nicholas Vogelzang in Las Vegas is a well known researcher/oncologist.
I would like and contacts please Nalakrats
Since my diagnosis in 2006 I saw Dr Tanya Dorff at the Norris Cancer Center at USC in LA, she was outstanding. After learning I was moving east to New Hampshire, Dr Dorff introduced me by referral to Dr Mary Ellen-Taplin at Dana Farber in Boston and I have been seeing her for the past 3 years. Must say from a personal point of view I have been treated by 2 of the best.
You’ll call me crazy but I don’t have a MO and I’m Gleason 9 stage Pt3b post RP and stage IV since 2017 with bone met. See profile. I read a lot about PCa here and in journals including prostapedia by Myers. I’m doing fine 6 years after BX. Lost 45 lbs. in last 3 months by eating smart and workout out daily. Still hormone sensitive on estradiol patches.
One question guys....Does "out of the box" really mean "out of a coffin?"
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 11/28/2019 9:58 PM EST
I hope we can keep this topic ( conversation ) going, I'm like everyone else on here, wanting the best treatment, and to feel comfortable with the one treating, but I've never felt satisfied with my current MO I'm hoping one of you can recommend someone in or near G.R. Michigan,
Dr Jorge Garcia from Cleveland Clinic?
This is a belated reply but may be of use or interest to those in the Philadelphia region:
Dr. Wm. Kevin Kelly of the Sidney Kimmel Cancer Center at Jefferson University Hospital. Terrific doctor and compassionate.
My husband saw snuffy as well. Miss him started with Ferrari liked her but then she left Rutgers cancer center. New doc Saraiya is good but I don’t think aggressive enough. We have seen kwon Mayo drake Cornell. Any ideas mospc in nj area?
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