How You Screened Your Medical Oncologist

Stephen - As you can see, I followed a similar pattern to you the year before and share similar concerns. I will try to get in to see Dr. Kwon at Mayo (85 miles) based on reputation here if and when my PSA becomes detectable some day. With video conferencing becoming a medical reality now, I probably will not have to limit my search to driving distance so I may check out some of the folks you hear about. It seems that there is plenty of time with the next stage as there is little that you can do in a hurry. Scans require a decent PSA to look for sources and there appears to be no hurry to go on ADT with a low PSA.

Sound like your main goal is the next couple of PSA tests, before and after Lupron I assume. Wish you luck with those and hope you never have to worry about the MO search.

Hi Stephen,

You say you want to be aggressive, but if you have another recurrence the odds of a cure are rather small. At this point properly getting all the time you can from each treatment/ medication should be your primary goal.

Skypilot56 said...
Stephen, Just reading through your signature was wondering did the lupron knock you down to undetectable before radiation? and what is your psa now after radiation ? I'm kinda wondering if there is any concern on your part why you would be ending lupron now maybe go for a year?

I have not had a psa check since January. I have a script for a psa test but was told to wait to just prior to my appointment on 8/31.

I also just did specifically ask the RO if, given my pathology, were they absolutely sure they wanted to stop the Lupron after 7 months, and I have started the paperwork re: second opinion on the pathology from Johns Hopkins. I doubt they would want to stop after 7 months if there was an upgrade to a G9 or G10.

Well you have great numbers of oncologists in your area, both in the institutions you mention and in other practice settings. Everyone will have a profile available with educational and experience information. Usually it should list the conditions they most often treat. Look for the ones that list prostate Cancer specifically and be wary of those that list all sorts of cancers, particularly when they seem unrelated. Often oncologists that treat a lot of PCA also treat breast cancer as they are both hormonal based. Often those that treat PCa will also list other urologic cancers.

When you do develop a short list and start contacting them I suggest you give them your basics and ask them to tell you about the men they have treated that were much higher risk and much further advanced than you. How many and how often do they treat such men? What type of treatments and tests do they routinely use? What have been the results? Do they make treatment decisions independently or are they bound by a tumor board? What do they do when their treatment recommendations are changed by a tumor board? In other words, you need to know about their actual experience and get a good idea about what to expect from them.

Also, how research involved they are can be a mixed bag. If they are spending a lot of time on research they have less time for patients. And it doesn’t mean any patient will currently benefit from the research they are currently pursuing. Many of the great doctors are not involved in direct research as they spend all their time with patients. They are guided by the research of the researchers. Same with medical organizations and conferences. They should have a proper balance.

My wife has had two bouts of breast cancer and has been tied to medical oncology for 25 years. Her second, and best, oncologist first spent 20 years in research and teaching (had MD and PhD and taught and researched at Emory) then went to private practice and spent all his time on patients. He was always available and one of the most patient centric doctors I have ever seen. And then he died. His understudy, who has an amazing resume, spends so much time in research and medical organizations that she has no time for my wife as a patient. The last three semi-annual check-ups were done by the PA as the doc was too busy doing other things. But her absence was never announced or gave my wife a chance to reschedule, just always a surprise.

My wife, like you, is now interviewing other oncologists.

Thank you all for your insights and frank wisdom. Hopefully I will see the MO 4 times a year for good PSA numbers for the foreseeable future!