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compiler
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Date Joined Nov 2009
Total Posts : 7211
   Posted 3/10/2011 10:57 AM (GMT -6)   
Well, I always like to think one tx. ahead.
 
What to do if SRT fails?
 
Yes, that means crossing the HT bridge. But I think it also means being under the care of a very good medical oncologist.
 
Here are my thoughts:
>>>>>>>>>>>>>>>

After a lot of consideration, I’ve decided to use my last curative bullet, SRT, without HT. Should SRT fail, my choices will be fewer and less certain. I will want a doctor who excels in the ART of treating PC. In short, I’m looking for a very knowledgeable doctor who thinks well INSIDE the box but could go OUTSIDE the box if truly warranted. I would want a doctor who is experienced with advanced PC, knowledgeable in all aspects of this disease (including the latest research regarding drugs, tests, genetics, diet, etc.), and compassionate. In short, someone who will listen to my concerns and answer my questions. My goal is to live many more years, productively, with a good QOL. I’m sure that’s probably the goal of almost every advanced PC patient! In my particular case, since I live in Michigan, I would hope we could do a few long distance consultations in addition to a few regular appointments and that we could arrange to do some tests, if necessary, in Michigan.

>>>>>>>>>>>>>>>>>>>>>>>>>>>

I included these thoughts as part of my new patient application to...Dr. Scholz. I had heard very good things about him. I talked to one of his patients, our own John T. I was impressed. Then there was a setback when I found out that he was the co-author of Invasion of the Prostate Snatchers. That book was panned by people that I respect. I think it had alternate chapters by a patient and then the doctor. But the patient was a complete...well...you know. Supposedly the doctor portion was pretty good. Anyway, still, the doctor obviously linked up with a very strange patient. What kind of judgment does this doctor have? So, that made me rethink matters. But I then checked further and got some more glowing reports from someone who I respect who had seen him speak and was impressed. I also saw a DVD by him and I was impressed.

Bottom line: what do I have to lose by consulting with the guy. Okay, he is in Los Angeles. I would like to visit my daughter anyway soon after my SRT. So, I'm going to do this. I still have Dr. Hussein at Umich to consult with (she is also a highly rated doctor in this field).

The reality may be that I have a very agressive PC that will stop at nothing regardless of what I do (this is a fear many of us with poor pathologies have). But all we can do is ...all we can do!

OK, time to probably throw some slings and arrows for me getting so far ahead, but I do very well when I have a plan in place!

 

Mel

 

 

 

 


PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64. Surgery: Dr. Menon @Ford Hospital, 1/26/10. Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- yes.. PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06; 1/4/11-0.13,3/1/11--0.27

medved
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Date Joined Nov 2009
Total Posts : 1096
   Posted 3/10/2011 11:03 AM (GMT -6)   
I wonder what Dr. Scholz knows about how to treat this disease that Dr. Hussein does not know. Clearly, Dr. Scholz knows how to make money writing a book with a provacative title, but that particular skill does not help manage your disease (though it might help him build a tennis court or buy a nice car).

compiler
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Date Joined Nov 2009
Total Posts : 7211
   Posted 3/10/2011 11:09 AM (GMT -6)   
medved:
 
You might well be correct. The person who saw him speak who I respect (an advanced cancer patient) considers him among the top-ten in the USA. I saw the DVD and I was impressed.
 
My plan will be to consult with BOTH Dr. Hussein and Dr. Scholz. Dr. Hussein is 2 plus hours away by car. He is in Los Angeles.
 
Will I STILL be impressed after consulting with him? We shall see. That's quite a bit down the road, right now. I may well just decide that Dr. H is as good or better and that will be it!
 
Mel

Tudpock18
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Date Joined Sep 2008
Total Posts : 4177
   Posted 3/10/2011 11:39 AM (GMT -6)   
Mel, once again I applaud you for thinking ahead.  I did read "Snatchers" and was not impressed by Blum but was very impressed by Dr. Scholz.  I also am influenced by what JohnT has said about him and a very favorable comment about him from one of my friends who is an oncologist (but does not specialize in prostates).
 
Bottom line for me is that if I ever experience BCR I will definitely consult with Dr. Scholz even though he is 3000 miles from me. 
 
Good luck and please keep us updated!
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

John T
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Date Joined Nov 2008
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   Posted 3/10/2011 12:58 PM (GMT -6)   
Medved,
I think you are off base and are coming to a judgement based on just one piece of information. Blume may be a little off the normal, but he went over 20 years with PC without treatment. Who is better off he or someone who has been managing ED and incontinence for 20 years because of treatment for low risk PC? He made his choice based on information and seems very pleased with it. It may not be the path that many of us would have chosen, but it worked for him.
Scholz didn't need the money from the book; He has a full patient load and is the Director of the PCRI, a non profit organization devoted to education. If you read some of his case studies he has had many patients that have chosen a multiple of different paths in fighting this disease, and works with each of them to maximize the path they chose. He is patient centeric, not treatment centric.
Over the past 12 years I've seen 12 different specialists, 3 urologists, 4 urological oncologists/surgeons; 4 radiologists and 1 oncologist. Without a doubt Dr Scholz was the most knowledgable, spent the most time answering my questions and provided me with the most options for both additional testing and treatments. He by far was also the most flexible when it came to discussing treatment options, and the most honest and through discussing the side affects and probabilities of each option.
You can judge him by his association with Blume or you can judge him by by the hundreds of papers he has published on PC or the clinical trials he has performed or his devotion to educating both patients and doctors in facets of PC thay may not be familiar with. I think that more than a few thousand of his patients would disagree with your assessment.
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

diamonds3
Regular Member


Date Joined Jan 2011
Total Posts : 112
   Posted 3/10/2011 1:18 PM (GMT -6)   
JT,

"Blume may be a little off the normal, but he went over 20 years with PC without treatment."

I read the book, and although I've been through a lot in the past month, I seem to remember that Blum had at least one, if not more, different types of HT. And he chronicled the side effects in detail.
DOB: 01/1961
PSA: 01/2010 2.8
PSA: 11/2010 4.2
DRE: 12/2010 Normal
PSA: 01/2011 4.1
Biopsy: 01/2011 7 out of 12 cores +
Gleason: 6(3+3)
Stage: T1C
Epstein 2nd opinion.
da Vinci 03/04/2011 Penn Hospital

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 3/10/2011 1:47 PM (GMT -6)   
John - I am not making any judgment at all -- one way or the other -- about Dr. Scholz's abilities. I was simply raising a question of whether he is any MORE capable, when it comes to treating recurrent prostate cancer, than Dr. Maha Hussain, who is also a very experienced oncologist with a particular focus on prostate cancer. (I disagreed with the position that Dr. Hussain initially took on Provenge, but she clearly an expert).

With regard to the "Prostate Snatchers" book, I don't know whether Scholz "needed" the money or not. I guess he is probably happy to have it. But who knows. I found the title unnecessarily provacative and the book pretty unbalanced. If it were one of several books a new patient read, that might be OK, but if it were the only book someone read, I think it would present a very skewed perspective. (I would say the same thing about Bob Marckini's book, by the way).

In any event, the approach Mel is thinking about taking, if he should need it -- consulting with both Dr. Hussaid and Dr. Scholz -- seems pretty reasonable to me. Of course, if they disagree with one another, he might need a tie-breaker.

While on the subject, I have been interested in the fact that the "independent" oncologists (Liebowitz, Strum, Scholz, Meyers, etc.) seem to get more "PR" on this board than those affiliated with major medical institutions (Sartor, Logothetis, Scher, Eisenberger, Hussain, Petrylack, etc.). Not sure why that is. All I can think of is the independents are better at marketing.

zufus
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Date Joined Dec 2008
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   Posted 3/10/2011 2:46 PM (GMT -6)   
Medved- no bones to pick, myself I forgot sometimes to mention Dr. Sartor but I usually make a point of mentioning him more recently. Also, Scherr is another one I should probably have mentioned. The others are more well known because they get envolved in videos, books, newsletters, conferences and so we get to know more about them too. I have a local onco-doc that suits me fine thus far for 7 yrs. almost now, but would consider seeing someone else if and when I feel it worthy. I think you know I have no problem firing a doc along the way, as I have fired actually 4 of them in 8 opinions and including my uro-doc(2 yrs. after the DRE and love affair/LOL), the others I just didn't hire (lol).

Second point, I know something about both of the docs (Hussein and Scholz), and through some patients whom have used them and I have met with to disucss things, and so have more of an incite as to what I would be getting. I know I cannot convince you but that is ok, but knowing what I know about both of them and even though I am in Hussein's backyard and already could of hired her...I didn't and I won't. I love having freedom of choices and it has worked very well, love my insurance carrier. (-:}

Mel has talked to a friend of mine (I arranged that) whom fired Hussein not to long ago and he is being treated by my local onco-doc and this friend PCa guy is wiser on PCa than me, he has been dealing with it for 11 yrs. and goes to conferences and makes large efforts for info, owns all the PCRI conference videos...etc...a virtual PCa junky (lol). He knew what he was signing up for, too. Now I am not discounting altogether for Mel using this onco-doc, she is supposedly very good...might be ultra conservative which 'If' and when one is dealing with mets...you might wish more relvolutionary approaches as real choices, because they will be limited. But that is the patients choice to decide or should be. So in fairness both those onco-docs are excellent...we have choices and even personalities within those choice factors, as to whom you wish to deal with.

Just like all surgeons, all radiation docs are not the same...so too with oncology.

Post Edited (zufus) : 3/10/2011 12:54:20 PM (GMT-7)


BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 3/10/2011 2:56 PM (GMT -6)   
So if I understand the discussion better;
 
It's the doctor that is really, really, really, really, really well known that can help us cure our cancer.
 
And not the doctor that is only realy, really, really, really well known?
 
And all this time, I thought science and medicine were limited by available knowledge, drugs, and therapies.
 
Huh, I guess the few thousand patients of only these "top" specialists are the lucky ones, and the millions of other prostate patients are simply out of luck.
 
If that's the case, it MIGHT not be a matter of Mel choosing the doctor, but will the doctor be willing to see Mel?
 
And all this time I thought that the rules were fairly clear... Depending on your age and condition, the stage and the agressiveness of the pca, if it's in the prostate, remove the prostate. If it escapes Radiate it. If it comes back your have HT.
 
Little did I know there was ONE specialiast out there who had such insight, such knowledge so greater than any other, so much experience. that he could deliver miracles that none other could match.
 
Wow. Perhaps we need to elect this single person as the President of Prostate Cancer Care.
 
Mel CAN'T make a bad decision, because it is HIS!

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4177
   Posted 3/10/2011 3:45 PM (GMT -6)   
Bob...wow...I'm not quite sure what incited all of your sarcasm.  By posting this thread Mel invited some commentary on particular physicians amd most of the replies were in that wheelhouse.  However in answer to some of your thoughts:
 
1.  "And all this time, I thought science and medicine were limited by available knowledge, drugs, and therapies."
 
...uh, no, not really.  Many times the difference maker is the physician.  Not all docs have equal knowledge or experience with drugs or therapies to say nothing of their overall experience in treating a particular disease in a particular way.  This is not to say that only one doctor or a few have a corner on excellence in any particular field but there are acknowledged experts in most professions...medicine is no different.  I believe Mel wants to maximize his chances of success, hence his original choice of Dr. Menon who frequently achieves great results.  And hence his quest for the best choices for the remainder of his journey...I happen to think he is smart for thinking this way.
 
2.  "And all this time I thought that the rules were fairly clear... Depending on your age and condition, the stage and the agressiveness of the pca, if it's in the prostate, remove the prostate. If it escapes Radiate it. If it comes back your have HT."
 
uh, no, not really again.  If we have learned only one thing from this forum it should be that not one size fits all.  Your comments indicate a total disregard for the many other choices a patient has at early stages of his journey, e.g. IMRT, Brachy, AS, HIFU, TFT, etc.
 
Do you believe Mel is making a bad decision by seeking out top doctors?
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 3/10/2011 3:56 PM (GMT -6)   
"Your comments indicate a total disregard.." Ah, sorry Jim, I was generalizing with the treatements.. My point is more to the fact that we often hear this discussion about how THIS doctor is IT because of this, or THAT doctor is the greatest because he's done 200,000 Robotic surgeries.

If that were taken to extremes (which any of us would if we could because it's our life) than there may be 1 doxtor to treat millions of pca patients. Or only 1 "best" doctor if you go robotic, or whatever.

That assumption, sir, in my opinion, borders on an insult to the treatment the REST of us chose (or had to rely upon).

You ask "Do you believe Mel is making a bad decision by seeking out top doctors?"

Did you read MY last sentence?

Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 3/10/2011 4:02 PM (GMT -6)   
I certainly hope that there is something that Dr. Scholz can do for Mel what others have not been able to. If nothing else Marina Del Rey is nice. Maybe some SoCal sun might be what the doctor ordered.

Like Dr. Scholz, my oncologist has also written books. Some of his is co-authors included lowly guys like Pete Scardino, Bill Shipley, and Howard Scherr, etc. In fact with Shipley and Scardino they co-authored a book that virtually every genitourinary oncologist is familiar with:

tinyurl.com/4d9xc24

While Mark Scholz and Stephen Strum are both included in the reference material for this book, one of the more commonly referenced researchers in the book is Maha Hussain. I have never met her, but that impresses me a bit.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 3/10/2011 2:20:42 PM (GMT-7)


compiler
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Date Joined Nov 2009
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   Posted 3/10/2011 4:11 PM (GMT -6)   
Bob:
 
I certainly detect the extreme frustration in your thread. What a rotten disease this is!
 
Let me answer you a bit. I do believe there are standard treatments/protocols that are typically followed. Surgery, SRT, HT.
 
But, even for surgery, I don't think you want the guy who graduated in the bottom of his class. You want the best or close to it.
 
Anyway, there are PLENTY of good surgeons. But as you continue in the process, I truly believe it gets to be somewhat of an ART. For example, even with HT, there are different kinds and these days I think they start with Casodex to prevent a flair. But say you have side effects (you will). I don't want a doctor who will ignore me or just shrug his arms.
 
Let's say HT fails (it will, some sooner than others). There might be an art in figuring out how to prolong the impact of HT before it fails (intermittant HT?). But eventually it fails. Then what? Perhaps chemo or Keto or DES or something else.. You seem to be hinting that many doctors are equal. But I think down the road you want someone who excells in dealing with such patients.
 
Zufus -- yes, your friend and I had a long discussion. I don't know if Hussein is conservative. Perhaps. She does seem to think INSIDE of the box a lot. But, that's okay. It will be interesting to see what they both say as things go on. In the best of all possible worlds, I will have successful SRT with subsequent PSA tests heading DOWN. However, I have become much more of a pessimist as each test/event is worse than the previous one. But, ideally, I will not have to get any more opinions (yeah, ... sure!).
 
I am just relaying my search. I figured I'd share it with the group. It is interesting how our threads grow branches that seem to stretch afar! I am surprised that what I am doing has become so controversial.
 
Mel

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 3/10/2011 4:18 PM (GMT -6)   
I'd like to change the tone of my previous comments. Not the substance.

I could hope for nothing more than for Mel to find a solution. And I could care less where that comes from, only that it does. I wouldn't want anyone dimming my hope or questioning my methods - and I wouldn't want to do that anyone else.

Yesterday, my Dr gives me news that SRT appears to have helped me.
Today, Im in a uro office with my best friend, his 18 psa out of nowhere.

If this stuff doesnt work beat down your nervous system over time, you had to have EVERY nerve removed.

The "HOW" in any (ALL) of my brothers on this forum get cured is about 25,000 on my list of concerns. That they DO get cured is it. Period.

Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 3/10/2011 4:19 PM (GMT -6)   
Mel,
I doubt that anybody would not recommend salvage radiation for you. One question might be should you also take on HT and if I was a betting man somebody like Dr. Scholz would indeed be willing to administer it at least for a short while during SRT. I know my doctor was feeling that if I was going to do radiation that adding neo-adjuvant HT would in fact help the performance of SRT, at least as it pertains to biochemical control.

Good luck in the coming weeks. I say you should stop by Las Vegas, too...

Tony

compiler
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Date Joined Nov 2009
Total Posts : 7211
   Posted 3/10/2011 4:58 PM (GMT -6)   
TC:
 
It might be that HT might have helped. Once again, a lot of this (whether to do HT along with SRT) remains a gray area.
 
Mel

Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 3/10/2011 5:13 PM (GMT -6)   
I know what you mean, Mel,
It is mired in controversy whether to include the HT or not. All the studies I find report on biochemical failure and the numbers look great for HT with SRT. But as I am known to doubt studies we find, particularly when the end result is based on biochemical failure, I don't see too many studies that show survival benefit to HT with SRT.

My point was that I believe that Scholz will order up what a patient wants to do in this area as opposed to make a recommendation when the data is controversial. And most oncologists will do the same. When I saw my oncologist in the early going, he explained the options, the side effects and the research material he has seen on it's performance. He basically said that there are some areas to "explore" but that approach fails more often than works. After a month we sat down together and he asked "So you look, sound, and appear like you understand that what lies ahead is controversial. you ask the right questions, but in the end you have to answer one question ~ what do you want to do from here?"

Mind you this was right after RP and I was T3B with bilateral seminal vesicle invasion but my PSA went to undetectable. Everything was pretty much on the table. I could enter a clinical trial for adjuvant HT and possibly chemo, I could do radiation, or I could do nothing at all.

There were no easy decisions, but I made mine. And I will certainly respect yours...

Tony

Post Edited (TC-LasVegas) : 3/10/2011 3:26:46 PM (GMT-7)


John T
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Date Joined Nov 2008
Total Posts : 4235
   Posted 3/10/2011 6:17 PM (GMT -6)   
Just to add a couple of points. The well known doctors are well known for a reason; they are respected by both their peers and their patients. Average doctors are not usually well known even though they have published books.
There was a thread on HT in another forum by guys that have been on HT for over 12 years. The basic consensus was that large institutions were not up to date on the latest HT treatments because they were much more conservative and stuck to established protocols. doctors like Myers, Strum ect. were more apt to adopt newer treatments much faster and able to adjust existing protocols for the patient's benefits.
I think it is useless to get into a pissing contest about who is the best doctor, but in any field there are usually a handful of doctors that are generally considered to be at the top of their profession and you can't go wrong in hiring one of these.
Bob, if you truely believe there is no difference in talents then I won't have you picking my fantasy footbal team.


JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Trepidation
Regular Member


Date Joined Feb 2011
Total Posts : 173
   Posted 3/10/2011 6:24 PM (GMT -6)   
"
medved said...
I wonder what Dr. Scholz knows about how to treat this disease that Dr. Hussein does not know. Clearly, Dr. Scholz knows how to make money writing a book with a provacative title, but that particular skill does not help manage your disease (though it might help him build a tennis court or buy a nice car).
 
I guessed I missed that best seller that made Dr. Scholz millions. Please help me out here. Thanks

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/10/2011 6:36 PM (GMT -6)   
Mel - for starters, you are planning way ahead on this one in some ways, but looked what just happened to me with my failed SRT, while my odds were low of it working, I sure didnt expect failure this soon.

If you want to see both of these nationaly known experts, then that is your decision. If you have the time and resources, then by all means. Why not?

What bothers me, has nothing to do with you or your decision, its this "air" that I feel sometimes in HW, and I think Bob Cape might have meant this (Bob, if I didn't get your drift right, I apologize). That its not always about a limited number of famous, brand name, noted, celebrity, published, whatever term you like experts and that's it.

Mel, I will use you as the example here, because its your thread. You had your surgery done by one of the best of the best in the US, at one of the best of the best hopsitals, yet it did not prevent you from having BCR fairly fast. Should someone assume that perhaps your surgeon sucked, didn't have the skills, was all talk and no show? Of course no reasonable person would think that. Your BCR would have happened regardless of whom your surgeon was in my opinion. But, and I have seen this here at HW, if one of us goes to a small town hospital with an unknown (outside that local area) surgeon, and the surgery failes to stop the PC, then the attitude is that you should have gone to a better place, got a better doctor, etc. I think that is all wrong. Each body (patient) cancer situation is different and reacts different in their treatments.

You have been methodical since you started the PC battle, and my hat is off to you. Right now, the SRT is your next real battle, that you have to fight ,and hopefully win. And I pray you do. Beat this nasty cancer at this level, and never have to cross that next bridge that you and I were talking about.

I am now across that next bridge, and unlike you, I don't have a plan "C". I had a plan "A" - surgery, it failed fast, I had a plan "B" - SRT, and now its failed. I still don't want the customary plan "C" HT, so until I see even more bounces upward with my post SRT numbers, I will do as currently advised, a little AS over the next couple of readings. I don't have to do anything right now, but in a few months, I may have to make an even tougher choice.

Finding a new medical onclogist is in my future too, and I am taking my time on that move.

Good luck, stick by your choices and your plan. What you decide, and whom you decide to see, is your business, and your decision alone to make. Our role, is to encourage and support these decisions.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 3/10/2011 6:42 PM (GMT -6)   
John, I didn't say anything close to that representation.

In fact, I used 4 "really"s instead of 5 "really"s to make that point. I'm sorry you missed it.

A doctor can take only patients with the most favorable stats, and appear to be a hero (in fact most of them are "heroes" in my book, they are working to make lives better). Nobody that i'm aware of has claimed to be able to cure a cancer that another excellent doctor cannot.

What I WOULD say, is that there is no credible way to keep score. You CAN say that "DR X is among the better known...", or "has treated more", or "clearly his patients like him" type thing.

Hey folks, OF COURSE I want the best doctors.. but lets hope we doint annoint one of them "The Best" - because none of us will be able to get an appointment with him.

Mel mentions to me "Anyway, there are PLENTY of good surgeons. But as you continue in the process, I truly believe it gets to be somewhat of an ART".

Mel, I hope you're journey ends successfully and SOON.
Mel, I hope MY doctor was the best, FOR ME, and therefore my "process" has already ended successfuly.

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 3/10/2011 6:50 PM (GMT -6)   
THANK GOODNESS I GOT YOU GUYS TO ARGUE (discuss) this stuff with. If I shared the burdens of all these thoughts and facts with my wife, she'd be apt to make me single.
 
Corrected spelling by Fontaine, then changed to 'goodness' so I wasn't talking religion.

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 3/10/2011 6:51 PM (GMT -6)   
Mel- hope this thread is not a Blummer (get it Ralph Blum -mer)-LOL

I think you are very wise in hiring both docs, this way you get to see are their differences in concepts, protocols, methodologies, assessment angles, concerns covered for your side effects (choices within that??). So perfect, just like I compared many uro-docs, radiologists and one oncologist.....all was for better education for the patient. So, it is a win-win....very happy for your plans. Maybe we will see something interesting in this from your experiences of doing this. Bravo!
 
Before I get mis-con-screwed on this, I am supporting Mel..he decided upon using Dr. Scholz (I am innocent of the overall endorsement), plus please noticed I did not endorse that Mel use my local onco-doc or mention his name....(lol). I did have a comment about Dr. H., but also acknowledged she is well known as an expert in PCa. We all discuss various docs from time to time and experiences, it is good to put all things on the table for open discussion and others are doing so, that is all good.

Post Edited (zufus) : 3/11/2011 7:14:44 AM (GMT-7)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/10/2011 8:15 PM (GMT -6)   
Interestingly,
Of the "elite" doctors in prostate cancer, almost none of them have ever published studies, stats, or results in the major medical journals that that any part of what they are doing is working any better than what is commonly documented. But they wrote books.

My problem is that if you go to PubMed, ASCO, or JAMA and type in any of the "elite" last names with the words "prostate cancer", for example "Scholz prostate cancer", you'll be amazed on who is actually researching and reporting...I personally would question why it is that these doctors who do nothing else but prostate cancer have the fewest papers published showing results. In my example 38 papers are published in PubMed by anyone named Scholz and only five were MARK Scholz and he was the author of 3 of them. Try the same thing with other names and you get my point. Of course they are good papers, but to quote an old Wendy's commercial "where's the beef"?

In the case of my "average" doctor there are hundreds of papers. And if he isn't the lead on them, there are other big names reporting the results with his name included as a researcher.

I believe it is incumbent upon those who go against established protocol to prove that what they are doing works instead of just saying it to large audiences. They need to put it in a paper and publish it so that their peers can show that they have complimentary data or contradictory data. Anything less that that leaves open questioning by the entire prostate cancer community...

That stated, I would not blame anyone who is dealing with what Mel is, or even more seriously situated, from seeing any one of these doctors. Folks need to do what they feel best about. Is it possible that there is a silver bullet in Marina Del Rey? ~ you bet it is. But it's possible it will have to be found elsewhere.

So Mel,
Other good names to look at are Leibowitz or Myers. Of the three, Bob Leibowitz has the most published articles and is considered a leading authority on ADT.

Tony

Post Edited (TC-LasVegas) : 3/10/2011 6:42:32 PM (GMT-7)


proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 644
   Posted 3/10/2011 11:51 PM (GMT -6)   
It seems to me what we're looking for is

1.) Someone who takes the time keep up to date on the voluminous literature published on an ongoing basis on new research.
2.) Someone with the academic training in oncology to understand the latest research and its implications regardless of whether they were the one who personally did the research.
3.) Someone who has seen a lot of patients, sees only or primarily PCa patients
4.) someone who has been at it a long time and so has a lot of good experience to draw on
5.) Someone willing to take the time to treat each patient as unique and not just look you up in some table and be done with it.
6.) Potentially someone with the self-confidence and guts to recommend some treatment that's off the menu, in cases where there is promising evidence but the evidence is not yet sufficient to alter the accepted mainstream paradigm. (though some patients may not personally want to take this risk.)

There are pros and cons with seeing someone who is deeply committed to a particular line of research and publishes prolifically in that area. The pros are obvious, and I don't disagree. Here are the cons to balance them: First, they have an intellectual agenda to advance and a reputation to defend. It is similar to the issue of surgeons generally recommending surgery and radiologists recommending radiology. If you are holding one tool, a hammer, you will tend to see the problem as a nail. I'm sure there are many fine researchers to consider for whom this is not an issue but it's something to keep in mind. Second, someone could be a great researcher but their research is in an area that doesn't have useful clinical implications for your particular case -- for example, someone who was working at a genetic level on a potential therapy that is 5 years away from clinical implications. In that case you could simply be a revenue-producing distraction from what they really care about. Like everything else with PC, it's complicated.

Another possibility: The people who are doing most of the research are in an academic setting and between their research, their teaching and in some cases administrative responsibiltiies they don't have time to see the same number of patients as the docs in private practice, and so there are fewer people out there singing their praises on this and other boards. Also, they have less time to market themselves. That's not rewarded in an academic culture. It doesn't mean they aren't every bit as good or even better, it just means they will likely be less visible than their talents merit.
DX age 54 12/2009
PSA 5.6, DRE-, high pre-op PSAV. Clinical stage T1c
Biopsy: Gleason 3+4 with PNI / 6 of 14 cores + / 10% of total length + / worst 45% +
DaVinci RP 2/2010
pT2cNx / Gleason 3+4 / PNI+ / SM- / SV- / EPE- / Tumor vol 3cc / vol 40cc / 63 gm
PSA - 4/10 <0.01, 8/10 0.01, 12/10 0.01
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