Went to local UsToo PCa meeting~Deja Vu~met the doc whom gave me 1st opinion-whom I rejected in 2002

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zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 7/14/2010 7:13 AM (GMT -6)   
Decided to checkout local UsToo PCa support group meeting(since the founder posted on this forum recently), local chapters all around the country (basically).  It was held at Beaumont Hospital in Troy, Michigan (Cancer Center Bldg.), had one newly diagnosed guy 1st timer, one guy 13 days out from DaVinci, one guy 1 yr. out from DiVinci, one older guy surgery back in 1992 and having continence problems all along and looking for drug or surgery help on that, and some others.
 
The day before the meeting I had a flashback in my head, what if I see this same surgeon, whom I rejected back in 2002?  Well into our meeting it was that particular surgeon giving an open question answer session to group of about  12+ people. I think he remembered who I was, I recognized him immediately, kind of akward scenario.  It went well and doc answered alot of questions for people and did mention most all other treatments that are worth considering and have their place in PCa.  I was wondering how biased it might be in this kind of sitting, which could have big impact on a newly diagnosed person.
 
Here was the analogy the (surgeon)doc used to generalize treatments, now maybe it was intended to be for anyone, (maybe) except high risk patients?  " It's like traveling to Chicago" (picking your treatment is the theme), "whatever method  you wish to take will get you there":  bus, car, plane, rail..."nobody wants to walk".  In otherwords the analogy or parable was all methods will get you there. Don't know if the other words " you don't want to walk" meant taking a slow process or shouldn't be slow in decision making?.  Sure, we all know that their is alot more to PCa and issues, that goes into this, than just picking a transporation-vehicle and ride it out!  The one newbie speaks up and says  'yeah-but you don't want a flat tire along the way there'  (actually a brilliant response in his analogy).
 
Just for background if you never heard about my mulitple opinions. I have very significant high end stats, bad scenario for any treatment as to being curative. This doc from this meeting told me in  back in 2002-  'curative' and 1% chance of incontinence and could do non-robotic lapro or open surgery....sounded great my first opinion and cure!  I knew enough even early on that it doesn't pass the smell test. I already had my other opinion doc lined up for the next day...went to see Dr. Mani Menon at Henry Ford Hosp.- DaVinci LRRP just installed recently.  Well Dr. Menon checked out my history, stats, and me...and came to the conclusion rather quickly too..."I will not do surgery on you".  Yep, my stats were that bad and he knew it and was decent enough to tell me indirectly...surgery would not be curative in effect...you know I appreciate a totally unbiased straight answer.  I got further opinions from many types of docs trying to figure out what is best for my scenario (live longest and best side effects I could live with, and maybe have an outside chance for cure) and got busy on the internet, thereafter.
 
  So depending upon ones stats, perhaps some docs will tell you straight up...little to no chance for curative protocol and maybe explain why you might do something else or do their protocol knowing up front...protocol is used to 'debulk' or lower tumor burden on your system..but not a curative scenario. 
 
 UsToo.org has a large gathering event in Chicago coming up soon(August), Dr. Myers will be there and some other speakers, along with probably alot of information for patients in case someone lives near this event or can make it.
 
Tranquility to All
 
 


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 7/14/2010 7:18:16 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/14/2010 9:08 AM (GMT -6)   
zufus,

great story/post, but confused on one point, did you "flashback" only seeing the original surgeon, or was he really, literally there at this meeting blame it on my meds.

the youtoo bunch in my area seems week. in the 23 months since my pc dx, i still haven't been to a meeting. they meet at a church thats quite a drive for me, and all that has happened is some phone tag. they were suppose to email me some info, but that never happened, and when i have called, just get a recorded message and never has anyone called me back. not the most social person on earth, so that was enough for me to give up on it. i am sure it varies from region to region.

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, 7/2 - Caths #18 & #19


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/14/2010 11:02 AM (GMT -6)   
(LOL-ha-ha) Hey Dave: this was all for real, but I had a premonition this might happen. So kind of blows my mind, because I have had such premonition events happen in my life a few different times that I am highly aware of, and in the last 15 yrs. or so. So, if I feel some winning lotto numbers somehow....you can bet your booty I will be in a store buying some (that would be the ultimate test, that I would love to confirm). Yes I have had fun meds for PCa over the 8+ yrs., but this goes back further when not on those.

I think you are right about the meetings, I have been to a couple different locations along the years, it varies. Just imagine the new guy coming in just diagnosed, that meeting for him is huge, same for a patient whom just failed primary treatment and such.
Youth is wasted on the Young-(W.C. Fields)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/14/2010 11:08 AM (GMT -6)   
zufus,

just blame it on being on pain meds for almost 10 months now, plus, i have always had this annoying habit of taking most anything told to me as being literal. I am the one that rarely gets jokes, well, might take me days later to get it and then laugh, making me appear crazier than I am.

I have no ill feelings of that support group, i understand they do a good service and job in many cities. SC here is a very backward state in many ways, and I live in the most populated/educated part of the state. If I were a people person or a social butterfly type, might consider starting up a new group, but unfortunately, just not my style.

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, 7/2 - Caths #18 & #19


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/14/2010 11:09 AM (GMT -6)   
Hi Bob,
I'm still 50/50 for the UsTOO summit in Chitown. I am presenting the UsTOO organization to an oncology group (Yes Vogelzang set it up) on the 17th and we have our normal meeting on the 19th. The summit in Chicago is the 20th and 21st of August. Since I am off for the summer teaching in my church, I might be able to swing it.

I am glad to hear you participating in UsTOO. Experienced membership is very valuable to a group like that. I don't always agree with my guest speakers, but I bite my tongue because it's not my job as chapter president to create my personal agenda. I express my opinions here and at the InfoLink, but you will find me in the neutral position at an UsTOO meeting. What's more important is cultivating strong membership that is diverse in the treatment modalities and ideas. I have seen some very "opinionated" UsTOO group leaders but I am not so certain that is a good format.

I hope you give more time to the group. We are the largest PCa non-profit support group in the country. But we need a strong core membership to stay successful.

Thank you for attending, and reporting.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/14/2010 11:13 AM (GMT -6)   
David,
I can Email you anything you might need on UsTOO, but you can also get most of it at www.ustoo.org. I recommend the Hot Sheets. I just received the July editions. Send your mailing address and I will send you all of them for 2010 to date.

This offer if open to all, but I have limited supply.

You can also get them at the link below...

www.ustoo.org/Hot_Sheets.asp

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/14/2010 3:18 PM (GMT -6)   
thanks tony, my e-mail address is open here with my name Purgatory. I check it often. I was disapointed that I was never able to get anywhere or even started with the local one for the Greenville, SC area.

david
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, 7/2 - Caths #18 & #19


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/14/2010 4:30 PM (GMT -6)   
Thanks Tony will try to make some other meetings, there are about 4 UsToo chapter groups near enough to me that I could be a drop in at any of them. I did hold my tongue to a reasonable standard and I understand the why and necessity. I had a guy at this meeting that is part of my Onco-docs special PCa meetings and he showed up there too, this guy will be at Chicago event and he has been to many events...one of the more knowledgable lay people I have come across in this, he has been to the PCRI conferences and has the videos over the years, etc. I noticed he held his tongue and then later expounded on some points.
Youth is wasted on the Young-(W.C. Fields)


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 7/18/2010 12:04 PM (GMT -6)   
TC-LasVegas said...
David,
I can Email you anything you might need on UsTOO, but you can also get most of it at www.ustoo.org. I recommend the Hot Sheets. I just received the July editions. Send your mailing address and I will send you all of them for 2010 to date.

This offer if open to all, but I have limited supply.

You can also get them at the link below...

www.ustoo.org/Hot_Sheets.asp

Tony


TC - looks like the link is broken at the USToo site?
http://www.ustoo.org/Shopping/productinfo.aspx?productid=17

Not sure who to report it too but it's kind of hard to sign up for the newsletter currently.
Dx'd 2/11/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
Been on Lupron since beginning
Was on Casodex, then HDK, the Nilandron
Finished 12 rounds of Taxotere on January 26th
14 radiation treatments in June 2010 for leg/hip pain

Current (6-21-10)
PSA: 108
Treatment: Lupron, Zometa, DES+Cumadin
~~~~~~~~~~~~
Personal Blog:
prostatecancerat42.blogspot.com
Facebook Profile:
www.facebook.com/david.e.emerson


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/18/2010 3:36 PM (GMT -6)   
Zufus,

These deals are kind of hard to draw firm conclusions on. Without going to that surgeon, you really don't know if he could have done what he said or not. Odds are you are right, (nomogram odds), but on the other hand we have seen soe fairly spectacular things happen on this site.

On the other, based on some of your other thoughts about surgeons, motivations, etc., could it be that Menon didn't want to mess up his batting average ?

You have done well so far, mainly on your own research and intelligence. This discussion is academic, but I think it raises issues we all deal with. If only I would have, or wouldn't have discussions. If I had know then what I know now thoughts.

Some of these are useful for other guys, but for ourselves, they are generally a waste of thought and emotion.

It is what it is.

Your technical contributions are a very valuable part of HW. Keep it up !
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/19/2010 7:41 AM (GMT -6)   
Goodlife I respect you alot me amigo and you are an objective guy and analytical, let me say this on my own case I have plenty of reasons to know and confirm why that first doc was totally incorrect on his opinions and was a sales pitch method. I might as well list some of them so others can maybe understand this more clearly:

1) this 1st surgeon wrote curative on paper and handed it to me (how weird is that?) and tells me 1% chance of incontinence based upon his patient population of his (sounds nice), this fails my street smarts smell test (LOL) yes this is unscientific but noteable experience.

2) Dr. Menon said no way for surgery (a couple days later, his opinion)-1st LRRP doc in USA

3) I got in total 8 opinions, urologists, radiologists, oncologists (nobody else believed cureable)

4) Partin tables and nomograms say little if any chance for curative surgery or any protocol

5) I have never seen any patients(and looked on internet alot back in 2002), anywhere with similar stats, that would even say at 5 yrs. out of surgery, with even looking cured (stats equal to mine)

6) if you considered my stats closely, I doubt you could find anyone appearing cured, thus I had to choose a different route and actually later became pleased that Dr. Menon was candid enough to tell me no way,.

7) looking at the treatments I have taken...I am not cured..and they are pretty significant therapies, not a light duty set of protocols, that helps confirm it was beyond the gland and pelvic areas of which some of my radiations did work on (kind of like SRT built into my primary radiations) and was part of my radiologist plan, along with highest dosages (I agreed and signed off on such) and most potent combination radiation you could get (neutron and then photon sessions). (neutron is written about in Dr. Strums book, it is a rarer protocol)

8) my whole gland was PCa- 12/12 biopsies all with PCa at 75-95% levels found in all of them (How many patients do you see on this forum with 12/12 and all are loaded with PCa????), total urinary blockage and in emergency room (caused by PCa, not bph), gland size was normal(ultrasound measurements).
Gleason scores 7,8,9's, two sets like that, almost identical parameters within those pathological findings and bPsa level at 46.6 (scans did appear clear-no guarantee anyway).

9) per Bolla study protocol did ADT3 combo drugs (5-6 months) then did radiations, total of 2 yrs. on ADT2-3 drugs, decided to switch to DES only (had 8 mini consecutive rises on ADT3, PSA tests I got done monthly...seems to confirm ADT3 is failing and looking refractive at early stage), have had excellent results for the last 5 yrs. in stablizing and lowering psa level with about no side effects. I continue to look at anything on PCa as this beast is totally unpredictable as you can see by various patient histories. Currently will not switch drug I am doing, the results are there so don't mess with it and quality of life is excellent especially when compared to ADT3 (that is far from a picnic).

10) in trying to compare my scenario to anyone else found with total urinary blockage from PCa, the few I found diagnosed as such...did not live very long...that put enough fear into me to seek alot of opinions and information...my scenario seemed to be how long can you survive as opposed to any cure possibilities. So I really don't second guess this 1st doc, but others can judge as you wish and I have no problem with that.

11) you can also see many patients failing curative surgery with hugely lower stats and without urinary blockage caused by PCa, without 12/12 (100% of biopsies found with PCa), and other high risk factors I had at diagnosis, what would that infer on my curative scenario? I have to be happy to be around this long....and I am...and it blows my mind to some degree too. My brothers uro doc heard my stats and told him I would be lucky to be still around 2 yrs. later, glad he was less than a real expert apparently. So yes....'It is what is'.
 
(sorry this was the long version to make a point, but accumulatively seems to add up)

Only one doctor of out 8,   I consulted with thought that there was a chance for cure scenario. I think I will side with experience and people with case history knowledge.


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 7/24/2010 4:46:35 AM (GMT-6)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/19/2010 9:26 AM (GMT -6)   
Thanks for the reply.
 
As I said, it is academic, and you have folders full of stuff to prove your point.
 
My real point is, to the newbie, just reading that post could cause some confusing thoughts to a guy who has just been given a curative answer by the doctor he just met.  We have one guy on here who completely discounts surgery, stating it is never curative, and always needs radiation to clean it up.
 
I just wanted to get it out in the open.
 
Keep it up my friend, it seems to be working for you, cured or not.
 
 
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01

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