Choosing Dr/Hospital??

I hate this crap!!!  I am way stressed! lol  anyway...

Being diagnosed 6 weeks ago I've been able to read Dr Walsh's book.  I've also been able to talk to 2 men locally who's had this disease.   

I'm meeting with a robotics surgeon today and a radiation oncologist next week. I have my questions prepaired for the surgeon. (Radiation Oncologist is next week).  I'm currently leaning towards surgery but, open or robotics?  I don't know. 

I am wondering how you guys came to your decisions as to who it was that you ultimately decided on to be your Doctor and hospitals for treatment?? 

The surgeon I'm seeing today is my area's rock star robotics guy (E. TN). (I feel prepaired w/ my questions)  I don't think he does many open surgeries anymore. If I could just "push a button" I think I'd go to John's Hopkins. If only it were so simple. Dr Walsh says the surgeon is all important. So..i guess my bottom line question is if one could go to JH...why wouldn't they? It's a one shot deal. Am I over reacting if I go there and if I don't am I taking the easy road out? I don't know.

Thanks
Crazy David!

My dad had open surgery back in 2003ish. Recovery was longer. Cured him. I don't talk sexual side effects with him, but I know he wears a safety pad. He was 65 at the time. He had a number of issues since them (quadruple bypass, stroke, aneuryism). He's come through all with flying colors. We were glad the prostate issues were taken care of when they were as it was a complication we didn't want or need with all the other things that happened since.

Fast forward to 2012, my boyfriend was diagnosed. We talked to RO and 2 surgeons. We live in the NYC area and chose a rock star surgeon in NYC... Dr. Samadi. He is an expert at Robotics and knowing the slower recovery my dad had, we knew Robotics was the way to go for him. He's cured.... has sexual function back... minor leaks.

From what I saw with my dad... I agree with the surgeons that say if you are young(er) and have reasonable case for surgery, take it out. There is no doubt that there is a new normal, but with the benefit of the pathology and undetectable PSA's, for both my dad and my boyfriend, we can rest at east knowing we've moved on and left PCa behind us.

In my dad's case, he could have been candidate for active surveillence. Glad we didn't go that route or any other treatment. Life has a way of giving you curve balls, and after his other health scares, his options to treat and cure the PCa would have been more limited had we waited.

Lots of guys on this forum have very strong opinions. I don't advocate one treatment over the other as I would never try to sway an opinion. This is just a commentary to the surgery question you asked. My opinion is go with your gut and don't try to overthink it. Talk to the docs, get their input, know what you can live with, make a decision and don't look back.

The client I mentioned above I talked to this week. He's 70, and had open surgery 10 years ago. He was surprisingly open with me. He said he wears a pad daily still and his "erections are next to nothing". But I didn't ask if viagra or anything worked.

Crazy David,

If I had received your dx instead of mine, I would not have treated the cancer unless and until it showed itself to be more severe.   G6 does not metastisize and it is generally held that it does not become G7 or worse.

If your dx is accurate, then you are not threatened by the cancer.   However, you are allowing yourself to be threatened by the treatment.  Why do so? 

I would do my research about treatment and just as importantly, non-treatment.    You really should seek out a specialist that is very good and experienced with AS.   In any event, slow down.   No reason to rush to a treatment that probably is unnecessary.   Your situation appears to be the poster child for the overtreatment that we too often see.

Hello, David to answer your question specifically, I chose based on reputation, personal references and their cure/SE statistics.

Beyond that, I'll just say that...dude, you barely have cancer. In fact, some leading docs would say you have pre-cancer. So, you have time to research the heck out of this and make an educated decision. If you have not read the sticky thread at the top of our forum? www.healingwell.com/community/default.aspx?f=35&m=2652250 If not may I suggest that you do as well as reading Dr. Scholz' book, "Invasion of the Prostate Snatchers". "Invasion.." will give you perspective beyond Walsh's book.

You have already received some excellent advice, IMHO. I would strongly recommend that you consider AS - but with an experienced physician who has knowledge of how to do the "active" in AS. You may never need additional treatment and, if you do, studies have shown that the treatment is likely to be just as effective as what you may choose now and - new treatment possibilities come up all the time so waiting may get you the advantage of one of those.

But, if you insist on treatment you should definitely do your due diligence and consider LDR and HDR brachy as well as SBRT. All three show curative results that are as good as surgery but with a better chance of less onerous SE's.

Good luck but take your time....

Jim

I'll weigh in because my situation is similar. I'm also 56, 3/12 positive cores, all G3+3, 20%, 5%, 3%. I also have extensive family history of prostate issues, my father died of metastatic PC at the age of 78, about 15 years after diagnosis and cryoablation.

Given what my PSA has done over the last 3 years (10 years of <1, 2013-2.2, 2014-3.3) I'm opting away from AS and towards active measures. At present, I'm weighing the choice of RALP vs Brachy.

To answer the choice question you posed, it's fairly straightforward for me: I live in rural East-Central Illinois, about midway between Indianapolis and St. Louis, and about 4 hrs drive from both Nashville and Chicago. If I did it locally, it would be open surgery, no brachy, external beam only here. The local guy has a great reputation, and has offered to take care of my post-treatment follow up, no matter what or where I choose.

Two hours drive away is St Louis, home of BJC hospital and Washington University. BJC is considered a "top 10" cancer hospital, and was the first location in the midwest to set up and do DaVinci, and have done several thousand procedures. They also do brachy, and would do that as well if I choose it. To me, the choice is a no-brainer. From what I see, I'll get excellent results at St. Louis, and while the percentages might move a small amount if I went to JH or Cleveland Clinic or Mayo, my odds are pretty darned good as it is.

Interestingly enough, both Urologists I've seen (the local guy and the guy at BJC) basically tell me that if I was 10 or 15 years older, they'd recommend AS, but not at my age with my history and numbers. The idea is that it might delay things a year or so, but not much more than that. Broad as it is long.

By the way, guys, some of you have sig files that are way more than 400 characters. How do you make that happen?

David, to answer your bottom line question... No, I don't think you are overreacting.
I live in NYC and I cose Dr Tewari, because I wanted the best. I have to believe that this is one of the more complicated surgeries to do, and tus one of the easiest to screw up, so you want the best. If I was in an area that didn't have the best of the best, I would go to JH, or Mayo, without hesitation and do what you are doing speak to surgeons and RO.

I might have said this beofre, I think the role that mindset plays in the decision making process is underestimated. If you are truly "crazy" David, then AS is not for you, as long as you are willing to make the sacrifices necessary to get the peace of mind that AS does not offer to guys like you and me. Not saying AS is not a good strategy, from a medical standpoint it clearly is. From a mindset status it's not
As you said, birds of a feather flock together, so I know.

Sorry to jump on the bandwagon, but if it were me I would also strongly consider AS. I would want to avoid this roller coaster as long as I could. Based on your stats, pretty much every treatment will cure you so you want to pick the one with the SEs you can best handle. And AS arguably has the least SEs. My two cents and I realize that not everyone is cut out for AS.

But to answer your question, I would go for the best possible practitioner that you can. You only get this shot once and you will be living with the results forever. In many ways, this is an elective procedure given your stats so I would want to have one of the best in the world on my team.

Well guys, I messed up. Started a thread with a typo in my signature. Sooo sorry!!!!!

Actually, all of my numbers were correct except for one core. Instead of all three positive cores being G6 <5%, the correct number is three positive cores w/ 2 G6 <5%, with the 3rd being G6 <20%

I hate to ask this question again, but does the one core being <20% rather than <5% mean any difference to anyone's answer?

And, by the way, thank every single one of you for answering my question in the first place.

I've been studying the surgeries so much I think I could almost do one myself. The anesthesia...tricky doing that on oneself!

I'm truly...truly..insane.

I think you are my brother from another mother , we are the same mental case.
Ok, so similar to me, I was g6 10%, g6 20% and g6 80% according to,Epstein . Not quite as good as you but not far off. The 80% troubled me but Epstein told me it was not meaningful and that what was more important is all three cores being in one side.

I maintain, especially for lunatics like you and I, getting it out and having some peace of mind from a hopefully quick drop in PSA , has value.

I'vegottabe honest, I think it was day 2 maybe early day 3, after surgery, that I said to my wife at one point... "Shoulda done radiation, I feel like I wanna die right now"
But tonight I'm ending day 5 feeling like I am past that. And assuming I get that good path report, I will feel like it was a good decision.

Some perspective from another nutjob.

Nope, no difference. You still qualify for Active Surveillance and classes in Mindfulness Based Stress Reduction.

- Allen

Pratoman said...

I think you are my brother from another mother , we are the same mental case.
Ok, so similar to me, I was g6 10%, g6 20% and g6 80% according to,Epstein . Not quite as good as you but not far off. The 80% troubled me but Epstein told me it was not meaningful and that what was more important is all three cores being in one side.

I maintain, especially for lunatics like you and I, getting it out and having some peace of mind from a hopefully quick drop in PSA , has value.

I'vegottabe honest, I think it was day 2 maybe early day 3, after surgery, that I said to my wife at one point... "Shoulda done radiation, I feel like I wanna die right now"
But tonight I'm ending day 5 feeling like I am past that. And assuming I get that good path report, I will feel like it was a good decision.

Some perspective from another nutjob.

Surgery is in my future Ken. And, btw, anyone who knows me,and can stand to listen to me long enough, has been receiving a blow by blow account of your experience. You're practically a member of the family around here.

Good luck on the path report. I mean that.