Finding the right Oncologist

[rguerrero997]

What should I look for in an oncologist?

[AlanMeyer]

The things I would look for in ANY doctor are:

1) Genuine concern for, and commitment to, patients. It's not always possible to tell whether this is present but it's sometimes obvious when it's not.

2) Willingness to listen seriously. This one is easy to tell. Does the doc listen to your questions and answer them, or does he brush off your questions with glib answers?

3) Medical expertise in the particular illness for which you are seeking help.

For a medical oncologist, the third point above means that the oncologist has specific experience and expertise with prostate cancer. You want someone who keeps up with prostate cancer research. There are 300 kinds of cancer and no one can keep up with all of them.

Right now, today, I think some of the hot topics that will separate the sheep from the goats might be to ask the doc what he or she thinks of the CHAARTED and STAMPEDE trials, what does he think about immunotherapies and checkpoint inhibitors, what combination therapies does he like, what does he think of Bipolar Androgen Therapy. There are lots of others too. Look these up before you see the doc.

Some docs will be able to give you intelligent answers. Some will hem and haw and change the subject. Some will tell you frankly that they aren't familiar with some of these, but they know some and have an open mind on others. The worst, I think, is the guy who refuses to admit that there's something he doesn't know and just finds a way to change the subject.

Personally, I've met some great docs in private practice, some great ones in group and non-profit organization practices, and some great ones at research hospitals (usually, but not always, associated with medical schools.) The last named group is where I'd expect to find docs that keep up with the latest stuff, but there are some in every group that do.

Here's the National Cancer Institute's list of "Designated Cancer Centers" that do research on cancer and fall into that third group:

cancer.gov/research/nci-rol...

I hope that helps.

Alan

[Hidden]

Hey again, rguerrero

You have a Urologist already right? If not, you should, you'll need him later again.

Oncologist wise I think it depends on where you are, and how far are you willing to go. And insurance too.

Take me for instance. I live in South Jersey, and I have easy access to major Universities and Hospitals. But, if your in Whacka-Whacka, Wisconsin, too bad. You're taking a couple days off.

Insurance, for me, is the tough nut to crack. Don't get me wrong, mine is good, if not excellent or superior. Here is where I have no clue about others, and what the cost is to them. My co-pays went down this year. How about everyone else's?

So, where in the world are you at, if I may ask?

And what Alan said.

[rguerrero997 in reply to Hidden]

Im in Austin, Texas

[Dan59 in reply to rguerrero997]

I think If I was anywhere near Texas and actually had prostate Cancer I would be at MD Anderson, I forget the name of the top rated Oncologist there, I will continue to try to remember through my chemo brain, second infusion today doing well , But I am sure they have some good ones

[Hidden in reply to rguerrero997]

Aside from PCa, the best friends I ever had were in TX. I spent a few years in the AF while in north TX, twice. Most locals were not favorable to us flyguys, and would want to kick my ass, but we had the best of it. I had all kinds of friends, and I miss them. When you're a friend of a real cowboy, on a real ranch, it's cooool. But, there's much more. And the best thing is this: I went to 2 Cowboy/Eagles games, and took coolers of beer in. Whaat? Those were the days my friend. So, what is SXSW like for you where you're at?

[rguerrero997 in reply to Hidden]

I donr really go to very many SXSW events but it looks really fun. There are live bands playing in venues all around town, at empty lots, store fronts, and basically anywhere that a producer might give them a look.

[Dan59 in reply to rguerrero997]

Dr Chris Logonthetis at MD Anderson Medical Oncologist , he is the head of the genitourinary dept there. He is a great researcher of prostate cancer, and I have heard everything we look for in a good medical Oncologist, You can google studies he has done by going to google scholar and typing his name with prostate cancer

[Dan59 in reply to Hidden]

I think there are some good Oncologist, in Chicago, not to for from Wisconsin, Maha Hussain is good in Ann Arbor Michigan.

[Hidden in reply to Dan59]

Maha Hussain recently relocated to northwestern university in Chicago. I was her patient at University of Michigan.

[Dan59]

Exactly what Alan said, He always has good answers.

Truthfully what worked good for Me is having a woman local, and sometimes a woman expert oncologist, I find that sometimes the male local Oncologist are not so much willing to communicate between each other so well, shall we call it egotism or what ever, I have never seen it in woman Drs, I also find women Drs are more tolerant of me doing my own research and bringing them papers, I also find them to be a bit more compassionate. where are you located?

[Scruffybut1 in reply to Dan59]

I fully agree with you Dan about the female Oncologists. I have a lead Consultant female, 3 Specialist Registrars All female who work with her and one male recently promoted from SpReg to full Consultant. I also see the same specialist nurse each visit. They listen and answer at consultations and checkups. They are outstandingly professional. They reply to emails. They are both hard nosed and feminine. They deal first with me and then with the disease. If the me is OK then treatment is working.

[Dan59 in reply to Scruffybut1]

Scruff, that's exactly what I mean, and especially if I need to call, they will call me back immediately, both are connected to me through patient portals with all my labs and apt. and the ability to send a message to Dr. email and will have a question back same day, but even better my local call my expert and says what do you think we should do now, and those questions are answered even sooner Dr. to Dr..

[rguerrero997 in reply to Dan59]

I believe women could be more receptive to suggested research. Thanks Dan

[Hidden]

Hi, My recommendation if you are in the USA is the nearest NCI designated Comprehensive Cancer Center. These are usually teaching colleges on the cutting edge of knowledge. There are 69 and you can google the locations via NCI / National Cancer Institute.

[rguerrero997 in reply to Hidden]

Thanks for the info. Not sure if theyre too expensive. I have insurance but not sure if it covers that

[Hidden]

I've consulted nearly 20 oncologists over the 12+ years I've been fighting PC, for several reasons:

1. In the VA system you see whoever is on duty that day. I quit that system because it was killing me, even though it is 100% free for me.

2. As my disease has evolved my needs have changed.

3. I fired several of them after being given bad advice, even to the point of dangerous, provably false, provably useless treatment mandates.

4. Several didn't know what the hell they were talking about, according to the extremely extensive and intensive research I do to protect and prolong my life.

5. Dr's gender hasn't mattered. In fact my two biggest disappointments were female oncologists with outstanding credentials and bedside manners.

6. I've gotten both good and bad advice ("advice" is a weak word; I'm referring to doctors who say, "You must have salvage radiation now", or "Do not undergo any treatment until I find the source of your recurrent PC") from leading oncology researchers and patient-treaters at two national cancer centers.

7. The bigger the cancer center, the more hidebound (non-thinking) it is. Their funding depends on toeing the party line with ADT until it kills you plus chemotherapy despite its near-guarantee of chemobrain (according to hundreds of published studies, especially THE top chemobrain experts in the country at MD Anderson.) There seem to be individually exceptional, thinking oncologists at some big institutions, but they seem rare and probably don't deviate from "Take a can of ADT and a can of chemo and call us in 6 months" (Mayo and Fred Hutch, in my case ) until those plus the newest drugs have also failed. We can get that from any local medical oncologist.

8. After studying his website for a few days (it has THAT much information on their programs and published data) and talking for hours with many of his patients who had been given a year to live 20 years ago by the big national cancer centers, I flew down to see Dr. Bob Leibowitz in Los Angeles. I walked in flatly determined to avoid chemotherapy at any cost, but for many reasons walked out the next day full of about 15-18 chemotherapy drugs in my system, eagerly looking forward to 5 months of same with a total of 13 months on ADT (Firmagon, not Lupron; I do not understand why so many med oncs still prescribe Lupron, given its far lesser results), then a good likelihood of years to decades with neither ADT not chemo. I'll have to write up my rationale for selecting him and his protocol at length separately, as they will run into pages I haven't time for right now. Just one example: my first consult with him began at 6:30 PM, and we took no break until we finished after 3:15 AM ... at which point he drove me to my hotel. That level of dedication and his long record of superior success with challenging PC cases (PC is all he does) are some of the reasons those national cancer centers often send their dying PC patients to him, whereupon he fairly often tacks a decade or two onto their lives and gets them playing tennis and soccer again. No WONDER he got a full academic ride through Harvard Med including developing their oncology program >30 years ago!

My government health insurance (NOT Obamacare) paid all but $40 of the costs, and I may even be able to drop that copay to zero. Better yet, my local med onc 7 minutes away is implementing Leibowitz's protocol; I'll go to LA once a month for the 5-months duration of my chemo so they can test and titrate my results and drugs according to MY body's responses. No more of this "Take a can of ADT and a can of chemo and call us in six months" crap.

I vowed in 1985 never to set foot in California again. I honored that vow until last Wednesday, and will eagerly do so again for this purpose. He and his entire clinic and staff were THAT impressive.