Gleason grade 8 (4x4) Next move in progress

[ThreeWs]

Hi Guys, first post in this forum,

I am a Viet Nam agent orange exposed vet newly diagnosed with high risk but hopefully still encapsulated prostate tumor.

I am declining radiation in favor of da Vinci radical prostatectomy (RP) for a number of complex reasons unique to my health issues and age.

My immediate need is to find the best surgeon within the North East or Central US preferred. I want an academic center and a surgeon who specializes in RP on a da Vinci robot.

Questions I need help in answering:

Is there an age limitation for RP? I am 75 but functionally very healthy.

What are sources for getting successful outcomes for an individual surgeon? Success for me is defined as least amount of incontinence, post op infections and ED.

Who have you had for surgery and reasons for liking or disliking?

I live in south central NY State and am willing to travel if convinced it is worth it.

WWW

[Darryl Partner]

Welcome. Have you gotten a second opinion on your biopsy?

[ThreeWs in reply to Darryl]

Darryl,

Not yet, as soon as I get my bone scan on Tues. and choose a likely surgeon I will get a 2nd opinion.

Always good to get a 2nd opinion even if going with your current Onc/Doc.

Thnks

WWW

[Tall_Allen]

My top pick would be Ash Tewari at Mt Sinai in NYC. Men over 70 do not heal as easily and there is greater risk of incontinence and ED. Here are some questions to ask (adapt to your situation):

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

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

[ThreeWs in reply to Tall_Allen]

Tall_Allen,

Thanks for the tip. I am aware of the risks for RP at my age but my case is complex due to being on a Clinical Trial for 7.5 yrs with Chronic Lymphocytic Leukemia necessitating daily oral drug use keeping me in deep remission. Every time I get a medical invasive intervention I must go off drug for 7 days and that increases the likelihood of relapse of leukemia. If I don't get any secondary cancer to a "cure" status I will be kicked off the Trial. My drug costs ~ $120,000 per year I now get for free as a lucky Lab-Rat.

Agent Orange is a "gift" that keeps on giving. Trying for the brass ring.

WWW

[Tall_Allen in reply to ThreeWs]

If there's only a small amount of cancer, Gary Onik (in Florida) was doing a trial of focal ablation for high risk patients. It is much less invasive than surgery and has milder side effects. I don't know if it's a permanent solution, but if it lasts for 15-20 years, that may be enough.

[ThreeWs in reply to Tall_Allen]

I am on a steep learning curve but from what I have read the 12 core TRUS can miss tumor. To be sure any ablative therapy such as HIFU, Cryosurgery or Proton beam radiation gets it all, the prostate should be mapped ideally with 3Tesla MRI. Since I have a 2 Lead Pace Maker and an AV node ablation that cured my Cancer drug induced A-Fib the PM (Revo Medtronic MRI tolerant) allows only 1.5 Tesla imaging. This complication was a main driver for opting to get a RP.

Your suggestion would be a good option if not for this limitation. A second opinion may change my mind but....

[Tall_Allen in reply to ThreeWs]

Talk to him. A 1.5T MRI with an endorectal coil should suffice. Onik does a few different kinds of focal ablative therapy (FLA, HIFU, PDT, etc.). Proton is not focal or ablative and would have all the same problems for you that any kind of radiation would.

[Don1157 in reply to Tall_Allen]

You know, the term endorectal, should not bother me much after 10 years of probing, but it does. The biopsy was not a good experience for me. ThreeW’s good luck in what ever you choose, lots of good happening now!

[bobdc6 in reply to Tall_Allen]

Onik (Ft. Lauderdale) is also said to do a mapping biopsy which will find everything, eliminating the need for a 3T MRI

[ThreeWs in reply to Tall_Allen]

Another reason I like the idea of an RP is that in my case I also have BPH which gets me up from a minimum of 2 to a max of 6 times during the night. The biggest quality of life complaint I have is chronic sleep deprivation. If I get a rare night of only 2 trips and sleep well for the rest of the night I feel great.

Having an RP would take care of both BPH & PCa if and it is a big IF complications of incontinence and post opt infection can be avoided. Am I wrong to think that the focal therapies do not address the interior cells causing BPH? I originally went to a local Urologist for a BPH remedy and discovered the more serious cancer problem. In my brief search for BPH remedies I was curious about the use of injected steam to lyse the cells near to the urethra (Rezum) FDA approved in 2015.

You mentioned Dr. Ash Tewari as your top pick. What qualities did you base your opinion on? How much does the benefit of experience become overshadowed by age in a surgeon?

Thanks for your inputs,

[Tall_Allen in reply to ThreeWs]

You think younger people make better surgeons? - think again. Tewari uses a torsionless nerve-sparing technique that I like, and monitors penile blood flow. I also like that he takes frozen sections. You can ask if he's adopted Retzius sparing. He is an innovator and he does many studies (which I like).

Actually, HIFU was ONLY FDA-approved for prostate tissue removal, so you can have a TURP at the same time.

[ThreeWs in reply to Tall_Allen]

I was only suggesting that there might be an age where despite the wisdom and former skill a surgeon might not be as good. Your latest post is the meat of the question I am looking for in a recommendation.

Too many times on my leukemia forums that I contribute to I see a patient recommending an Oncologist for no other reason than his/her nice bedside manner or conversely dismissive of a good Onc for no other reason than not the best bedside manner. Information such as implementing techniques to better control for collateral damage tells me a surgeon is really into his game and not just cranking out a quota of operations.

My understanding of TURP is a roto-rooter that destroys the tissue of the urethra and its more refined version using a laser that spares bleeding. I liked the idea of Rezum which spares the urethra tissue and kills just the expanded BPH cells. Do I have that right? I will look into the BPH application for HIFU.

You are well informed and I appreciate your input.

thanks,

[Tall_Allen in reply to ThreeWs]

I can't imagine why you would think age impairs surgical skills.

TURPS can be done with a blade, a laser, HIFU, etc.

[dentaltwin in reply to ThreeWs]

A good surgeon in a good medical center will know when to hang up the scalpel. I tried to get the surgeon who did my brother's RP six or seven years ago--they told me right off he didn't operate any more because he'd developed Parkinsons. He still did biopsies though. I said "maybe I can get someone else".

I can assure you that age eventually impairs skills. I hope I have the good sense to hang up my drill if my hands start to shake.

[dentaltwin in reply to dentaltwin]

BTW, my surgeon was Karim Touijer at MSKCC. Surgery was laparoscopic, NO robot. I'm doing well (at 4 months). He's listed as an author on a whole slew of research papers.

[CalBear74]

Take a Florida vacation. Dr. Patel is dominant in the southeast at Florida Hospital in Orlando.

[ThreeWs in reply to CalBear74]

Thanks CalBear,

I looked up a Dr. Vipul Patel and his experience is extensive on the robot as well as authoring and co-authoring many research papers. Good candidate.

[MarkBarnes]

And

[MarkBarnes]

I just had an RP last week after visiting Beth Israel BIDMC, BWI/Dana Farber and Mass General. Dr. Drew Wagner is one of the top 3 in Boston. My surgery went very well. I was a Gleason 3+4 with 9 positive cores, some of which were 80% or higher. He only gives one consultation which I found a bit off putting, but he is a surgeon and does surgery and leaves much of the rest to others on his staff. He has good interpersonal skills/bedside manner. He also sent me to a physical therapist who specializes in Kegels, and to a urologist who specializes in sexual health. Both appointments were one before surgery and one after. The penile rehab urologist will see me for as long as I want. I found the other services to be helpful in making my choice, although Wagner is an instructor in the robotic and had over 10 years with it, doing many per week.

[oldsilverado]

Makes your head spin with all these answers which one do you follow? is the question.by the way on my stage 4 cancer,went to hips did not take out prostate,too many problems afterwards like using catheter,and infections,i am 75 still able to use chainsaw and hammer. we are trying a new drug called Xtandi 4 caps a day,brought my PSA down real quick.my cost zero.. $ 10,000 from the company thank to the makers.

[ThreeWs in reply to oldsilverado]

It is a sifting process to where answers must fit into the unique context of each patient's situation. There is no one fits all prostate cancer and each of us is a unique host with varied needs and ability to respond.

WWW

[ThreeWs]

Hi Bob,

I tried to get to MDA for my leukemia but they would not take my MVP Gold Anywhere insurance that is not cheap. They would only take me if I were on Medicare only or pay upward of $22k for a consult??? I am not about to give up my insurance and found great care at the James Cancer Hospital at OSU medical center in Columbus OH. Not all institutions are excellent at every medical problem and is why I am casting a wider net for my prostate cancer situation.

Thanks

[bobdc6 in reply to ThreeWs]

OSU is very good according to some on the Inspire site.

Bob

[brooklynb]

I am with Dr. Michael Grasso, former head of Urology at Lenox Hill. He has saved the life of a good friend of mine and is well know in NY medical circles. He is a surgeon but now insists the surgery is not a good option for almost any prostate cancer. He is based at Phelps Memorial in Sleepy Hollow, about 1 hour north of NYC.

[Raymonda100]

The more experience a surgeon has performing a particular procedure, the better the outcomes. The older the person is the more likely that they have performed more procedures. Thus, okder age can be a proxy for experience, but not always. Age of a surgeon should not be a factor in your consideration.