Recommendation for MO @ Mayo Rochester

[SpencerBoy11]

I am scheduled for my 6 mos ADT shot toward the end of June. My MO @ Mayo Pheonix doesn't want me to get blood work there and to wait until Oct to see her in AZ. It will be 7 mos b4 I get back. Have been getting PSA every 3 mos. Makes me feel very nervous to go that long. Currently undetectable, but ? Would like to contact a MO at Mayo Rochester, any recommendations?

[rosatt1]

I am of similar age and diagnosis except first Urologist treated me for bladder cancer later a different Urologist and Radiation Oncologist said it was stage 4 PC. 18 months later after ADT and EBRT I am currently PSA 0.01. I think we will be on ADT with fatigue and hot flashes for some time. I wish you good luck.

[SpencerBoy11 in reply to rosatt1]

Yes, it sounds like we are peas in the same pod.

[Hidden in reply to rosatt1]

Hang in there rosatt1! I’ve been no t no Psa 7 yrs . Keep rolling ! 💪

[Tall_Allen]

If you are in MN, the only world-class prostate MO in your state is Charles Ryan at the U of MN. There are none I know of at Mayo.

[SpencerBoy11 in reply to Tall_Allen]

Thank you.

[Kittenlover50 in reply to Tall_Allen]

You’ve never heard of Dr. Eugene Kwon. He is one of the top in the nation in prostate cancer metastatic cancer….

[Tall_Allen in reply to Kittenlover50]

Of course I know Dr Kwon. He is not a prostate oncologist. He is a urologist and one of the top researchers in the field of genomics and immunotherapy, not prostate oncology. He has chosen to market himself to patients, which is why you have heard of him.

[swwags in reply to Tall_Allen]

What makes you qualified to make such statements regarding any MO or Urologist in Minnesota? How do you know Ryan is the best in MN? Have you been treated by all of them? Do you have everyones clinical outcomes? And why do you continue to snipe about Kwon? What personal experience can you provide that makes you remotely qualified to make such hyperbolic comments? He's kept me in remission for years now.

[Tall_Allen in reply to swwags]

One way to find out is to search pubmed to find out how much a doctor has added to the field of prostate cancer. Here are the results you find for Eugene Kwon and Charles Ryan:

pubmed.ncbi.nlm.nih.gov/?te...

pubmed.ncbi.nlm.nih.gov/?te...

As you can see, Dr. Ryan hads 175 publications vs 54 for Dr.Kwon.

It's not just quantity, it's quality too. If you go through each publication you can enter it into "Google Scholar" to see how influential each publication has been.

For example, Ryan's article titled "Management of Patients with Advanced Prostate Cancer: Report from the Advanced Prostate Cancer Consensus Conference 2021." has been cited by 339 other researchers writing articles about prostate cancer. It was also published in the prestigious journal European Urology.

By contrast, Kwon's article "Phase II Evaluation of Stereotactic Ablative Radiotherapy (SABR) and Immunity in 11 C-Choline-PET/CT-Identified Oligometastatic Castration-Resistant Prostate Cancer" was cited by only 4 other researchers. It was also published in a much less prestigious (not widely read) journal.

I guess the biggest reason that Charles Ryan is widely considered the tops in his field is he was recently appointed to be CEO of Prostate Cancer Foundation,, which is the leading NGO for prostate cancer.

[swwags in reply to Tall_Allen]

So absolutely no direct experience on your part as I suspected and no indications of clinical outcomes. Basing your decisions on published articles and not clinical practice? You should disclose this every time mention Kwon. You do not know him. You have not been treated by him. You base your decisions off of PubMed articles. and that's fine. It's your life but when you recommend a provider or recommend avoiding one, consider disclosing your rationale and confirm you aren't personally involved with either physician.

[Tall_Allen in reply to swwags]

I have actually met Kwon - I once had lunch with him, and think he is a very nice guy. How would you know what his clinical success rate is? You know nothing of his clinical practice other than yourself. I do know that Kwon has published the following lack of clinical success - I guess you were one of the lucky ones. I do admire that he publishes his failures - we all learn from failures as well as successes.

prostatecancer.news/2020/12...

Maybe you should disclose that you know nothing about his expertise as a doctor.

[swwags in reply to Tall_Allen]

LOL too funny. I never said I knew of either providers clinical outcomes and I didn't recommend anyone. You did and I simply asked what qualified you to make that recommendation. Your attempt to turn this back on me is a waste of your time. Publishing more papers doesn't mean one is a better clinician in practice. It also doesn't mean one is worse. I can't recommend Ryan pro or con. I didn't give a recommendation to the OP. Kwon is world renowned as a practitioner. I have first hand experience with him and how he has treated me and my personal outcomes. While you're free to make provider recommendations all you want, you should also consider qualifying your statements as I suggested. I appreciate your input to this forum and your interpretations of various RCT's and I'll leave it at that

[Tall_Allen in reply to swwags]

You made a statement: " Kwon is world renowned as a practitioner." How do you determine that? Because he markets himself to patients? I assure you that oncologists would have a very different list of leaders in their field than patients.

So how do YOU judge someone to be a top doctor?

I notice you didn't remark about his published failure:

nature.com/articles/s41391-...

[swwags in reply to Tall_Allen]

I'm not remotely interested in engaging your nonsense. I don't respond and won't respond. Grow up. You talk about treating others with respect yet you lack it in spades. Turn your attention elsewhere. I will not engage with you further.

[Tall_Allen in reply to swwags]

I tried to talk about how to select a doctor- which is of great interest to me and many patients. You can only seem to react with personal indignity. FWIW, here's how one can go about it:

prostatecancer.news/2017/12...

[Mormon1 in reply to swwags]

Calm down. It’s his opinion. You can just disregard it.

[mrscruffy]

If you are in AZ and unhappy with treatment plan give CTCA in Goodyear a try( they are now owned by Mayo). As far as blood work is concerned have your GP order blood work for you, mine does for anything I want to look at, whenever I feel I need it

[SpencerBoy11 in reply to mrscruffy]

When I get back to AZ, I will look into CTCA.

[Spyder54]

Take control of your destiny. I too would be nervous about waiting until October. Demand it in June at 3 months. If you see a rise, I would go monthly. 3 consecutive rises would be my cue to get scans. “Lord helps those, that help themselves” comes to mind, and I am not that Religious. Mike

[SpencerBoy11]

Exactly my concerns!

[Pancake_Lefse]

My Jeff is local to Rochester so it just made sense we go to Mayo.

We have been completely underwhelmed with medical oncology. We even “fired” one of his oncologist.

But for Dr. Kwon in Urology we would have transferred Jeff’s care.

Our experience dictates that had we only relied on medical oncology, we would have felt cheated and would have forever questioned if Jeff received the best care available.

[Kittenlover50 in reply to Pancake_Lefse]

Thumbs up. Been seeing him since 2015… first traveled from northern wis, now Florida.

[JAK2243]

If in Phoenix, give BANNER MD ANDERSON a try. I've been treated there for 3 years with no complaints.

[Kittenlover50]

You could call Mayo Urology and see about Dr. Kwon . They can give you directions, suggestions. He is not an MO but is top in his field in prostate cancer. Been seeing him since 2015.

[Leader4077 in reply to Kittenlover50]

To all concerning Dr. Kwon

I have also been a patient of Dr. Kwon since 2015. While some might see him as a immunologist first, his You Tube videos(there are many)can at least give you some information to discuss with your local provider. He is aggressive in treatment recommendations so be prepared for “early” chemo as a suggestion. Currently, his office is Re-scheduling Pluvicto(Lu-177)treatment for a number of his patients who were delayed treatment on May 5th by Novartis……I am one of them. Two things you will probably NOT hear from him are, “Try Provenge” and “you should consider palliative care”.

Mike

Seattle

[Teufelshunde]

Just go to UltaLabtests.com and order your own. Where I live testing is done at Quest. PSA test is $27. Higher sensitivity, post prostatectomy PSA is $63. No doc needed. When you get results, email or add to mychart and send doc a message. Take control of your care. Your life, not theirs.

[SpencerBoy11 in reply to Teufelshunde]

Thank you. This sounds like the perfect solution to me.

[Teufelshunde in reply to SpencerBoy11]

I love it. Can get any test you want. I am like you, I want test of PSA every 3 months. Good luck.

[Hidden in reply to Teufelshunde]

Same here. Been doing UltaLabs for four months monitoring my PSA and Testosterone recovery, as well as some other miscellaneous tests that could point out other potential problems and its a lot better than the hour long drive down to Mayo Jax and setting up their lab work. Plus Mayo's PSA test is not the supersensitive test. I notice Quest is now getting in the same business.

[Hidden]

My MO at Mayo Phoenix is Dr. Alan Bryce - Excellent. I am not undetectable - PSA 9 - Bone mets - 20 year battle. I get a monthly PSA at Mayo Phoenix. Also, try Any Lab Test in Phoenix when you want to check your PSA - very good - $49.00. You need mental well being in your fight - Change MO and get a test when you want it. Good Luck!!Tom

[SpencerBoy11 in reply to Hidden]

Thanks for the recommendation. Have already fired 2 MOs.

[63751]

Dr. Kwon is an amazing, compassionate, knowledgeable physician. I first met and saw Dr. Kwon in 2018 with stage 4, Gleason 8 prostate cancer. I sought him out for his leading approach for treatment. He recommended removal of 22 lymph nodes. Dr. Karnes completed a difficult surgery in an area that had extensive scare tissue from a 2007 prostatectomy and 2008 external radiation. In 2019 the choline PET scan revealed cancer in a lymph node near my backbone. Since surgery was not an option, Dr. Kwon recommended proton therapy. I completed 25 treatments on my left and right sides. My most recent choline PET scan was 2/2022. No cancer was detected. My PSA's since my 2018 surgery have been undetectable. I cannot say enough about the quality of care Dr. Kwon and his team have provided. He is a wonderful physician, scientist, educator and person!

[Hidden]

I agree that 7 months it is a long stretch . Why? Ask for Pariminder Singh APC specialist Scottsdale Phoenix . He saved my life in Tucson over 7 yrs ago . Good luck!

[SpencerBoy11]

My MO is at Mayo PHX. I spend winters in Benson AZ at our RV park. I am on the road RVing for the summer doing a 6K mile circle. My last PSA was end of March. Got my 6 months ADT shot scheduled at Mayo Rochester 6/27. After asking MO for the blood work several times, she just wants me to see her when I return mid-October 7 mos after my last PSA. Thankfully, with the info from the good folks here, I scheduled one enroute for 6/29. Will get a different MO when I return.

[Mormon1]

Just keep doing the 3 months. My doc tried going for monthly to 3 months. I compromised. 45 day! Prace of mind is important and just maybe catching a fault early could give uou the time you need to find an alternative.

[NotDFL]

I don't understand this resistance from your physician, but if all else fails you can try to get the ultrasensitive test yourself (and pay for it).

[SpencerBoy11 in reply to NotDFL]

Have done that, thanks to suggestions made here to me. Thank you, too.

[Shorehousejam]

Welp,this helped with the question I posted today. Thank you