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Advanced Prostate Cancer
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Seeking a new or additional oncologist

Anyone here being treated at Vanderbilt ? Our med onc is leaving and we are trying to decide our next step. He will (hopefully) have a recommendation for his replacement when we see him in November. Vanderbilt does not have an oncologist who treats JUST prostate cancer. So maybe now is the time to move to an oncologist who does treat prostate cancer, exclusively ? As a reminder, husband is : 62 years old, Stage 4, hormone-sensitive, metastatic (11 bone lesions), Gleason 8s and 9s, and taking Zytiga, prednisone and Lupron (every 3 months). He is handling this protocol with minimum side effects. (RP was performed in Sept. 2017.) PSA is undetectable. . He has it checked at Vandy every six weeks. Fortunately, we are willing and able to travel anywhere in the U.S.. Thanks in advance for your input !

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I assume you are in Nashville-----Can you travel to Charlotte N.C.? My MO is head of Clinical Trials, for Pca, and only treats Pca, and is involved in Pca Research--also, his father is a Patient, with a Rare form of the disease, who he keeps in remission. The Levine Cancer Institute is a Center of Excellence, with over 150 Doctors dedicated to Cancer,--and the Doctor is Dr. Earle Burgess--I travel 2 1/2 hours to see him myself--but being in N.C. I can drive, pack some food and make a trip out of it with my wife.

Nalakrats

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I just put together a list here:

healthunlocked.com/advanced...

Here are some suggestions for finding a doctor:

pcnrv.blogspot.com/2017/12/...

And getting second opinions:

pcnrv.blogspot.com/2017/12/...

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You have great referrals from two terrific gentlemen on this site. Heed their advice.

Good luck and Good Health.

j-o-h-n Thursday 10/18/2018 6:39 PM EDT

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Yes! You are absolutely right, j-o-h-n ! Thank you !

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Its very fustrating, big business and players sometimes are more interrested in the bigger better deal than their patients. Is what I said when my Urologist bailed on me!!! No word, just gone when I showed up for a follow up visit. They assigned me another Dr that was in their system, they called him the Eligard Guru. He contradicted a lot of what I was told by my guy!! Most of all, wanted to extend my Eligard treatment far beyond what was originally detailed to me and reinforced in conversations with my Oncolgist (18mo to 24-36mo). By the way, Eligard KICKED MY A$$. Been out of work for 7 months and counting.

Anyway, he resurfaced as the top Urology dog at a rival hospital group. So I opted for a second opinion regarding the change. Turns out he left that practice for reasons like this. I told him what the Guru wanted to do and his responce was “well, he sure sells a lot of it”! He resumed my healthcare and canceled injections added by others.

So I guess, if you’re willing to travel, can you follow him? Comfort goes a long way when it comes to your healthcare especally with something as emotional (natural or induced) as PC.

Jim

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Hey, Jimhoy, thanks for your input. We will meet our new oncologist at Vandy next week and I guess we'll make a decision after that. (Following previous med onc isn't an option.) As you can see, we have many highly regarded docs recommended in previous posts. I am very much interested in an oncologist who treats only prostate cancer. That makes sense to me. Ultimately, it has to be my husband's decision. Best to you !

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Hello, I would be interested to hear if you're happy with the new oncologist at Vanderbilt. We're in this area and I think we should get a second opinion. I'm thinking of making an appointment with Dr. Burgess in NC as Nalakrats recommends (just a 6ish hour drive for us or a nonstop flight on Southwest), but I'd like to hear your experience at Vandy. Thanks in advance. My husband is being seen at Urology Associates and they're recommending he go to intermittent ADT after six months on Firmagon, then scans if/when his PSA rises. His PSA is at 0.02 and has been for two months, 0.03 before that, and it was at 24.6 at his first shot in August. (Failed RP large 88 gram prostate, pT3bN0M0, +margins, EPE, SVI, PNI, G9, negative bone scan, but no sensitive scans performed. I asked about Axumin or other more advanced scans before ADT but we were discouraged by the urologist because they wanted to start ADT right away and at that time it wasn't available here and once ADT was started we were told it would not be useful) Thank you in advance.

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Are you seeing dr. Morris at urology associates? We are also looking for oncologist who only does pc

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FYI we had an auxumin scan done in nashville we did it on our own. Our dr never mentioned it. Glad we did because after a clean 3t MRI the scan showed three nodes

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Hi, yes, we're seeing Dr. Morris. We've just seen him once so far, but another visit is due since he just had his sixth Firmagon shot. It bothers me a little that prostate cancer is not listed on their website as one of his specialties even though he is apparently leading their advanced treatment center. Have you seen him? I can't find much information about him (publications? reviews?), but his urologist and the PA who has been giving him his Firmagon think highly of him, but they're all in the same practice. He seems like he's up to speed on current care options, but it all feels a little disconnected to me. And, yep, it was me who mentioned Axumin scan to his surgeon. It was the only one I knew to ask about at the time. They became available in Nashville about a month later I believe.

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We have seen him twice and have an appt this coming Monday. He just wants us to start adt but we want to discuss other options. We definately want a pc oncologist and I think we should travel to see one if necessary. Nice guy but I feel we are just going by standard protocol. I don't have confidence that he will suggest anything outside of that

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We were seeing his associate dr. Belsante up until the time we got our auxumin scan and it showed node involvement. Then we got passed on to Morris.

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Yep, same here. I've got a call in to his surgeon to get us a referral to Dr. Burgess. I'll keep you posted. It's only about a six hour drive. Dr. Hassan did my husband's surgery. He's a great guy with lots of recommendations, but after surgery we don't see him as much. We've been seeing the PA for monthly testing and shots and were referred to Dr. Morris about three months in to ADT.

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Yes please let me know! Do you have private insurance?

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Medicare kicked in right about the time he was diagnosed. In fact, we had an appointment at the social security office to get his Medicare coverage started the day we got his diagnosis. We left the urologist's office and went to the social security office. It was a strange day. It was surreal.

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I wouldn't wish it on anyone ☹️ where do you live?

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Truly (I'll pm you)

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I can SO relate to the convo/info that you and Sandy4510 are having. Oh, my word. What we went through after my husband's (robotic) RP in September 2017 ! His urologist group was abysmally behind the curve in terms of treatment options. As far as scans, they wouldn't even entertain the possibility-said it wouldn't change the course of treatment. REALLY ????? (We had Axumin, at OUR insistence, at Vandy...oncologist was completed on board. And Jeff had eleven bone mets.) And Zytiga...urologist wouldn't consider prescribing, EVEN when we said WE would pay OUT OF POCKET to have it. The surgeon (urologist) also said there was no need to do radiation to the prostate bed, even though three of the four lymph nodes he removed, contained cancer. Fortunately, even though I had done very little research at that point, I had done enough to KNOW we needed to get the heck outta there and get to a National Cancer Center. Vanderbilt was able to see us the soonest of the hospitals we contacted. So, here we are. Just wish we had started there, as we lost (valuable) time between the RP (September 2017) and our first appointment at Vandy (Jan 4, 2018). Not to mention that his elevated PSA was discovered in APRIL of 2017. Through a series of the most unfortunate events/mishaps, it took from April until September for his surgery to be done. It was a nightmare. And WOW ! Would we ever do things/handle the situation VERY differently had we been more educated about prostate cancer. I cannot stress enough, to anyone facing the situation, EDUCATE YOURSELF. And do it as quickly as possible. Sorry for the rant. Sometimes, ya just gotta vent a little. 😶

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So do you feel that nancy Davis is as knowledgeable as a medical oncologist who only does pc?

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I don’t think she could possibly be as knowledgeable as an oncologist who treats Pca, exclusively. But, it was clear to us, that prior to our first visit with her, she had familiarized herself with Jeff’s chart and from her answers to our questions, she is definitely informed/current on the latest studies, etc. on advanced/metastatic Pca. So, for as long as his PSA remains undetectable, we are satisfied to have her as our oncologist. Our frustration is the lack of effort/research/clinical trials geared toward hormone-sensitive metastatic Pca. It seems to be that nothing is done/attempted until treatment(s) fail and a man becomes castrate-resistant. Then they sort of “throw the kitchen sink” at it to try to “manage” it. And with (wildly) varying degrees of success. It seems to us that it would make at least SOME sense to work on preventing it from becoming castrate-resistant. And, of course I view everything through the lens of one whose spouse is still hormone-sensitive...

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Amen on educating yourself! And I am the researcher in our house. I had done a good bit of reading before we were in the thick of it, but it starts moving so fast and you get into the “system” and like you said, the doctors don’t really want to entertain something they were not already planning...they’re checking their boxes. I got the same answer as you when I asked about scans...they won’t change the course of treatment. I got the same answer when I asked about genetic testing. Both those answers ran contrary to things I’d read. But when your in the middle of it and there aren’t many local options what can you do?!? My husband was suffering from urinary retention because his prostate had gotten so big. And oh my, the waiting! They had him get a cystoscopy and biopsy at the same time and that was delayed an extra two weeks because of the surprise gallbladder surgery. My husband was really not well. Essentially bedridden for weeks, losing weight, getting depressed. It was intense caring for him, working (full time), and trying to figure out next steps. It was terrifying. Then after the biopsy we find out they won’t even DO the surgery for a month! That was a big surprise to us. I hadn’t read about the wait between bx and surgery. That was frustrating because he knew he wanted it out. It was huge and he couldn’t void his bladder (weeks of catheters and catheterizing himself). So his RP was two months after diagnosis. I know all three of us could go on and on. I’m hopeful we can get in to see Dr Burgess soon. If not we are going to go ask for another Firmagon shot till we get another opinion. I completely agree with you about trials and earlier aggressive approaches when they’re still hormone sensitive. I’m very glad the three of us have found each other.

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Wow you have had a rough time.... thanks for all the info. I am also the researcher in the house but mike also reads some. He thought we could handle this all naturally but his psa doubling time says that his is very aggressive. Sigh. He is against the adt we had a friend who became suicidal while on Lupron. But to me there is no choice right now. Slow it down and continue with the natural things but first slow it down! Feels good to talk to someone who understands.

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Hi, SuppWife ! We are very pleased with our new oncologist. Her name is Nancy Davis and she is clearly informed and up-to-speed with what's going on in the realm of prostate cancer. (However, she doesn't treat Pca exclusively.) Our Vanderbilt experience has been excellent on every level , from the pharmacy, radiology/imaging, scheduling, etc. I will say that we are prepared to move on to an oncologist who treats ONLY prostate cancer when the current protocol (Zytiga/Lupron/prednisone) fails. We are eighteen months in and hope to get (much) more "mileage" from this regimen, but realize that it will fail at some point. And our sense is that the folks at Vandy are not aggressive/out -of-the-box when it come to prostate cancer. They pretty much stick to the "current standard of care". We too have considered Dr. Burgess, but for now, we are comfortable with the care he is receiving at Vandy. All the best to you and your husband. Please feel free to contact me at any time.

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Hi, Jscjac, Thank you for your reply. I'm glad you're happy with Dr. Davis. I am not surprised to hear they're approach at VUMC is fairly standard. That's what I would expect. I will let you know how our appointment with Dr. Burgess goes. I've got a call in to his urologist to call to give us a referral. Thank you again for responding and all the best to you and your husband, too!

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