My Onco's take on DNA Ploidy

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Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/12/2010 2:00 PM (GMT -6)   
As you no doubt know from my posts about beginning phase four, I have asked my Onco to run an additional test (a Ploidy DNA test) before our next meeting. My initial research says this information will be very helpful on choosing my next course of action and the drugs we chose to do it with.

The meeting was scheduled for next Friday. Today I received a call from his nurse saying that the biopsy block would not reach them until tomorrow and the test would take about 2 weeks. This one has to be sent to an outside "reference lab". She said the doc wanted to wait until the results were in before we get together, so the meeting has been re-scheduled for September 10th.

She and I are on really good terms so I asked her if the doc just "rolled his eyes" when she told him about the test I wanted. She said that information was confidential. So I pressed a little more and she laughingly said that he kinda did something along those lines.

But she quickly went on to say that he replied that if this test was something I wanted he had no problem with making sure it got done. He is a well respected Prostate Onco in the MDA organization so I am sure he is familiar with the test. Just not too sure about his response or how well versed he is about the possible ramifications of the result of the test and the plans he may have in mind for me. But you can be sure that I will press for details when we get together.

She then also paid me (and you guys) a huge compliment; She said that I was way beyond the learning curve on PCa and it was very refreshing to have a patient that was so involved and educated in their disease and treatment. I include you guys in the compliment because of how much I have learned here. Thank you Zufus for bringing this test to my attention.

So we'll just continue to do some more research and wait for the results. Then we will see what the next PSA test and the doc have to say.

You guys feel free to jump in on this and let's all learn a little more about this test and others that can help each of us make more informed decisions and at the least raise the bar on the questions we put to our doctors. The least we can do is make the medical community work a little harder for their money and maybe get them to bring their education more current and up to date on how they deal with "us" and "PCa".

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -performed
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/22/10 PSA test 1.3 - Begin radiation for MET on leg
8/9/10 - Met radiation completed

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 8/12/2010 2:09 PM (GMT -6)   
Here's a list of other tests that at least one (well-regarded) pathologist believes can be useful:

http://www.prostapath.org/download/prognostic-predictive-markers.pdf
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/12/2010 2:40 PM (GMT -6)   
Hey Med, very complete list. Thanks, I will be doing a lot more research. I figure the only bullet left for the onco to recommend is HT and since I really don't want it but may have no other choice, the least I can do is make sure the crap has a chance of working.

Thanks again,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -performed
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/22/10 PSA test 1.3 - Begin radiation for MET on leg
8/9/10 - Met radiation completed

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 8/12/2010 2:46 PM (GMT -6)   
Sonny,
I don't know if you remember a post from Dan, I think he posted under Rienheart or something like that. He had surgry of a high volume G6 tumor, but had a very low psa. In his research he discovered that this was an indicator of a PC varient and asked his doctors to check it out. They wouldn't do anything futher and said the surgery worked and everything was fine. He finally went to Dr Charles Snuffy Myers for an opinion and discovered that indeed it was a varient and was sent to Holland for a Combidex which found his lymphnodes were infected. The last I heard he was going to the Dattolli Center for radiation of the lmphnodes and was being treated with HT by Dr Myers.
His personal research led him to question his doctors and follow up when they didn't respond. It may have saved his life. You have to be your own advocate and it seems you are doing a fine job of advocating for yourself.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/12/2010 3:21 PM (GMT -6)   
All good Sonny, I think John T's example which I didn't know about but I have been thinking this kind of thing is all to common from our experts (LOL). That guy being informed and his own advocate will atleast no doubt help his own chances for either longer duration of life or possible shot at cure....just a small thing a person whom wants to win this is interested in and has already spent tons on money with his doc already on like lousy scans and other things, but don't have $350-600 for better pathology tests???? I have to question everything the average docs are doing, you decide if that is valid for you (anybody).

Med-I will be looking at that web link to see if it is something I have never seen before, have looked at pathology website stuff years ago, this could be newer stuff. Knowledge is powerful as John showed a huge example of another guy being his own advocate...this is exactly what Dr. Strum says in his words and book...I think we are seeing evidences all over the place on his wisdom in PCa.
Youth is wasted on the Young-(W.C. Fields)

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/12/2010 3:22 PM (GMT -6)   
This is extremely interesting. I want to learn about this test, especially given my relatively poor pathology and slightly creeping PSA.
 
Incidentally, I decided that I should consult with a medical oncologist anyway. Dr. Hussein at Umich Med Center is supposed to be excellent. I contacted her office. Her response was that a meeting is not needed now, but should my PSA rise to where SRT is being considered, she will be glad to meet with me before I do SRT. That will be great for me as we can discuss possible tests, etc. I don't want SRT if the cat is already out of the bag. Also, I am reading about so many various genetic type tests, many being developed at Umich.
 
I will keep everyone informed. Hopefully, all of this is just an academic exercise and my PSA will behave!!!
 
Sonny, do you know if the test you mentioned would be useful even before SRT?
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/12/2010 4:39 PM (GMT -6)   
Mel- do want to hear my s.w.a.g. thoughts on it?
Also: (I heard Hussein is supposedly good too, I could have chosen her, but totally happy where I am...open minded and totally honest doc..the most forthwright I have witnessed)
This onco doc is closer to you in Rochester Hills(or the same distance) whom is likely one you would like for many reasons(also holds PCa seminar once a month...you could come and check it out sometime, Andrew has and was very pleased). He is an oncologist and hematologist and actually hands patients information like Journal Articles and educational stuff and spends and hour with you and no agendas or cashin therapies. Been with him for almost 6 yrs. now, and I will fire a doc if the smell test says so. Food for thought.
Youth is wasted on the Young-(W.C. Fields)

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 8/12/2010 4:51 PM (GMT -6)   
I think I need a dictionary ( along with purgatory) on decifering zufus - s.w.a.g.?
this definition I found -
Swag is underworld slang for the loot (money) that is stolen in a heist (robbery)

Swag may also refer to:

* Slang for free promotional items, referring to a thief or pirate's treasure, should not be pronounced as schwag. It is a popular backronym for Software and Giveaways, Stuff We All Get, or Souvenirs, Wearables, and Gifts
* Swag (album), a 2002 rock album
* Swag (bedroll), an Australian waterproof bedroll
* SWAG (military unit), an elite unit of the Philippine Navy
* Swag (motif), an architectural element
* Swag (novel), a 1976 crime novel
* SWAG (TV series), a United Kingdom reality television series
* "Swag" (Ugly Betty episode), the eleventh episode of the television series Ugly Betty
* Swag, slang for cocaine
* Swag, a California-based rapper signed to Warner Music Group[citation needed]
* A type of decorative trim over a window, often in combination with a full curtain underneath
* SWAG, "speculative, wild-ass guess", "scientific, wild-ass guess", or "stupid, wild-ass guess"[citation needed]

which one is zufus? ..

sorry - no mean to hijack - this is all very interesting and scary at the same time - life seems to be an algorithm at times - if -then -but -and - or .....

wishing sonny all the best and a direct route to a positive stable recovery...

hugs
BRONSON
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - June/2010 -have trimix - tried it twice - Aug 2010 -just lacking motivation right now
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night - May 25 - 1 pad during day - 1 pad at night for security (barely needed at all) - stress incontinence at work - lifting trees and shrubs - August 2010 - still at one pad for day and one for night - primarily for hygiene and security - still having good and bad days due to stress and what I have consumed.
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
Next PSA - October 8, 2010 - TBA -
............

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 8/12/2010 5:01 PM (GMT -6)   
I'd wager the last one., but that's just a swag...
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/12/2010 5:05 PM (GMT -6)   
Z:
 
I'll keep it in mind, if I don't like Hussein.
 
Thanks
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/13/2010 6:48 AM (GMT -6)   
Ok, s.w.a.g. (James- nailed, tatt -you sniffed it out and look like a walking dictionary I learned alot of new ones therein) yeah

Scientific Wild Ass Guess (they use it even in college, that where I got it from)

Other interpretations a hunch, best guess, accumulated processed thoughts and such.

S.D.A.G. (scientific dumb ass guess)- would be the dart board approach, decisions while on illegal drugs, decisions based upon being in a catatonic state, pulling the answer out of ones _____ idea   
 
Hey where is George Carlin's type of word humor:
 
Now we have "practicing medicine"...I wish Carlin were around to answer that one.!
 
We have "trial and error"      We have  'sensistivity finger in doing DRE's' (practice must make perfect?)    Sure wish George did some pieces on PCa...they would be classics.
 
Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 8/13/2010 10:59:42 AM (GMT-6)


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 8/13/2010 8:15 AM (GMT -6)   
For me it was always "Stupid, wild-ass guess" - learned that from a bunch of union steel-workers in the 60's - as in the answer to "when will this project be finished?" from the CEO

tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 487
   Posted 8/13/2010 8:36 AM (GMT -6)   
With rising psa after treatment, how would knowledge of tumor ploidy affect decision about next step? Or series of steps?

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 8/13/2010 8:43 AM (GMT -6)   
In combination with other facts, it MIGHT lead one to initiate a secondary treatment sooner, or to select a more agressive secondary treatment.
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/13/2010 8:48 AM (GMT -6)   
Tar:
 
That was my question (stated more succinctly). This is one of the reasons I intend to see a medical oncologist (Dr. Hussein at Umich) if my PSA starts rising more. I am not sure what she will say about this test or many of the other tests that seem to be out there (many in various trials that seem to show promise).
 
Unfortunately, the bottom line still seems to be this:
 
The medicos still cannot tell in advance if a cancer is going to be aggressive or not.
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 8/13/2010 10:30 AM (GMT -6)   
Compiler,
Just to add my 2 cents for what it is worth. I think Zufus gave you some good advice. If you listen to the patient advocates that have been on HT for a long time, over 10 years, and who really know what they are talking about; they are pretty consistant in saying that the major centers of excellence are really poor when it comes to PC oncology. They have been reluctant or slow in picking up on effective therapies such as ADT3 and Intermittent HT. They are also not very knowledgable in the alternate drugs that Zufus often mentions. They have also been very reluctant to recommend new effective testing, like the Combidex MRI. There are a handful of private practice oncologists that have led the way in treating advanced PC. I don't know why the major institutions are not up to speed, but I think it is because they have to follow established protocols and are not allowed to think out of the box.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/13/2010 11:28 AM (GMT -6)   
John, perhaps part of it might be do the low volume of PC patients in a situation like that, where standard protocals aren't doing the trick. From a biz point of view, might not be cost effective for these large centers to accomadate a very small patient pool. I don't know what the numbers of patients in that situation would comprise, be interested to know. And I am certain that potential litigation for "thinking outside the box solutions" is another major factor with these centers.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7/7 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 11/10 ?
Latest: 6 Corr Surgeries Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy, on Catheter #20

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 8/13/2010 12:03 PM (GMT -6)   
Some private practice oncologists may be more willing to try things for which there is not solid supporting medical evidence. Each person can draw his own conclusion about whether that is a good thing or not. Obviously, there are a lot of very knowledgable oncologists at major insitutions who focus on prostate cancer -- as just a few examples, Dr. Hussain, who Mel mentioned, and Logothetis, Scher, Eisenberger, Sartor, etc. It is interesting that we hear more on these boards about people like Meyers, Liebowitz, Scholtz, Barken, then we do about the leading prostate cancer oncologists at centers of excellence. I guess maybe the independent guys do a better job of marketing, on websites, and through newsletters, etc.
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/13/2010 12:47 PM (GMT -6)   
John:
 
I really appeciate the input here. John, I have to disagree with some of your remarks. When you say that oncologists at "Centers for excellence" might not be as good as some private oncologists, that almost seems like an oxymoron. I would think that Hopkins, Mayo, Umich, and other places provide some of the best care and knowledge across the spectrum of PC situations. As Medved said, there are some private oncologists that perhaps do a better job of marketing themselves. Additionally, many of the studies that I read about in Uro Today and other sources (some of them are even quoted by the esteemed private oncologists) are carried out at many of the Centers of Excellence that you seem to denigrate (including Umich).
 
I also tend to blanche at the term "alternative." Too often, we see alternative treatments as part of the dubious wares peddled by hucksters. You know, those who claim they are "revealing what the medical establishment doesn't want you to know." I know that you certainly don't mean that. Cutting edge treatment is one thing; trying unproved treatments is another; selling dubious wares as alternative treatments is yet another. For me, the last two are unacceptable. Additionally, my PC is not yet even at the SRT stage, much less the HT stage. But I do fear all of that might be just a matter of time. In short, I wish we could use different terminology than "alternative" treatments. That word just has a bad connotation in my mind.  I am merely seeking ways to help me determine if SRT is worthwhile or just a waste of time, and I prefer to stay within the established Centers of Excellence for now.
 
If my PSA behaves, then no harm, no foul. I just don't want to be in a position where it suddenly rises big time and I'm in panic mode. It's the same reason that I did a lot of  posting here well before my formal dx. of PC. When I did finally get dx., I at least had a methodology in place to proceed in a logical manner.
 
I can only echoe comments made by Sonny. HW has been a wonderful resource.
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/13/2010 1:04 PM (GMT -6)   
Mel, you said above:

" if SRT is worthwhile or just a waste of time"

Perhaps I am being too sensitive to the fix I am still enduring post SRT, but I found the remark a bit insulting or degrading at the least. We, that have been through SRT, is the result of recurrance from what people refer to as a "failed" surgery (don't like that name either, just because all the invisible to the eye cancer was not extracted, shouldn't mean that it was a failure).

SRT is a big step, but for us surgery guys, your self included, it is the final curative card available. Most know or should know the odds of it working or not before agreeing to it, and most go ahead, hoping to be on the good, however reduced, side of those numbers. Its an educated gamble at best. If the SRT doesn't work, just means it wasn't local any longer, and again, no sure, 100% way of knowing that ahead of time.

So it takes a certain step of faith that SRT will work, most men wouldn't want to think of two hard months of going to radiation clinics as being a waste of time. It's more of a chance that it might work, not that it won't work.


David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7/7 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 11/10 ?
Latest: 6 Corr Surgeries Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy, on Catheter #20

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 8/13/2010 1:18 PM (GMT -6)   
David:
 
An insult is the furthest thing from my mind.
 
IF the PC has totally escaped the prostate, prostate bed, and general pelvic area, then wouldn't SRT be a TOTAL waste of time and even worse just create unwanted and possibly miserable side effects?
 
The answer may be no, it is NOT a waste of time. I don't know for sure. In fact, I understand that there is an argument for surgery even though the PC may definitely be beyond the prostate. It's called debulking and there is an argument that this could be greatly beneficial and maybe even curative, despite the fact that the PC has spread.
 
You are probably right that one has to roll the dice and I am prepared to do so. But wouldn't it be prudent for me to consult with a top-notch medical oncologist? In short, maybe there are some tests I can take to help determine whether or not the PC is too far gone for SRT.
 
Another question for my HW family: do they automatically do CT Scans or Bone Scans when we have a PSA post-op re-occurence? That would seem to result in a lot more radiation and from my reading those tests would be extremely unlikely to spot anything (assuming my PSA was still in single digits)? These are questions I would ask.
 
David, that's what I meant by that comment.
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 8/13/2010 2:00 PM (GMT -6)   
Mel, let me see if I can answer a few of your questions about SRT.

I don't know about scans and such being automatic on rising PSA, but in reality how else would you determine if there is a finite place that can be attacked as the root cause of the rise. In my case the IMRT was directed at the prostate bed because of the relatively short period of time after surgery. Since there was no evidence of lymph node or systemic movement of the cancer cells, the bed would be the most likely target because of it's proximity of the diseased organ. It is not as though the entire body can be radiated to kill off the remaining cells.

When the PSA tests indicated that the SRT did not get all of something, the scans were necessary to try to identify hot spots as suspicious points of metastatic activity. They did identify areas that were most likely arthritis I didn't know was coming and surgery I have had in the past. They also identified a met on my leg. This was a definitive target that could be addressed.

By the same token, if all of the scans and tests show no mets, then the PSA numbers can only mean that there are cells that will generate the readings but that have as of yet not concentrated in any one area that can be addressed.

Just my take on this and not at all from a medically educated point of view. Just the thought process of a guy who is trying to find his way and still traveling this pain-in-the-arse path of PCa.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -performed
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.
7/22/10 PSA test 1.3 - Begin radiation for MET on leg
8/9/10 - Met radiation completed

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/13/2010 2:12 PM (GMT -6)   
Hey who said PCa is not controversial and even amongest us laypersons sharing information and experiences and knowledge, the no hand grenade policy should be listed by James or Tony somewhere on the list. (LOL) We can disagree with anything, glad we are not all the same, wouldn't be anything to post...we would all think identically. Probably even all sing off key together...pleasant as that could be?

To Mel- Dr. Ken Pineta (spelling?) is another in Michigan, considered top onco-doc (assuming he is still here in Michigan, he was).

Here is why Dr. Strum is leaving the PCa scene at this juncture: (maybe he is in the class of Myers, Leibowitz, Barken types, outside the box type onco-docs)
DR STRUMS WORDS> (Paragraph #2 most enlightening)-Sad we are losing his wisdom.

1. There is not that much activity on P2P and not having to worry
about the occasional posting will decrease my stress level.

2. There is major problems with doctors around the world doing
anything outside their own sphere of experience. Even inviting them to
call or email me has rarely been helpful. I end up educating patients
who become frustrated with what they cannot get from their own local
physician. Collaboration & collegiality in the world of medicine is
thus rapidly becoming a thing of the past, assuming it was once more
common than it is today.

3. Eye strain from any additional work on the computer needs to be
avoided by me in light of recent retinal problems.
4. about 20 other reasons that relate to my using my "free" time
differently.

So, with this last post on 8/10/10 I wish everyone the best. No need
for any emails please.

We have choices depending upon our expiration scenarios, boils down to your choices or lack of choices.
Youth is wasted on the Young-(W.C. Fields)

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 8/13/2010 3:43 PM (GMT -6)   
Mel,
These are not my opinions, but the opinions of very knowledgable patients who had been down the HT route for many years and have experience with many patients facing the same issues. I think that these opinion are very credible. Their experience also mirriors my own. This does not mean that there are no doctors at major institutions that are not excellent. I am mearly challenging the conventional wisdom that going to a major center of excellence for HT treatment is the best option. There is sufficient data that indicates that for primary treament for high risk PC, centers of excellence perform much better than community centers. This data does not exist for HT. I think it is useful to provide this information and debate it, as it only makes patients more informed so they can make better decisions about their treatment.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/13/2010 3:53 PM (GMT -6)   
Mel, understood, no foul, I aplogize, I am having a bout of major pain days recently, kind of has me on edge. Of course getting an informed opinion before you would agree to SRT is in order. I spoke to 3 radaiation oncologists before I signed on, and even then, with great resevervation. In my case, my worse fears and gut feeling about it all came true. Despite all the hell I have been through since, and still going through, I feel I had no choice but to go through it. Even my uro/surgeon agrees that it would have been foolish not to have tried this last curative attempt. He said he would have done the same thing, even knowing that it would further damage and complicate my other issues.

We just need that perfect test, both before a primary treatment, and post treatment if recurrance happens, so that we wouldn't have to make these tough decisions half blinded.

No, I never heard of anyone with normal recurrance needing the bone or cat scan repeated that we had prior to primary treatment.

I know you are deeply concerned about your own journey and future, but with you first two PSA readings looking so good, you may not have to worry about any of this, and I hope and pray you dont.

On paper, your post stats look bad, but you are doing well. Such is the fickled world of PC

David in SC (Truly sorry, pain makes me foul sometimes)
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7/7 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 11/10 ?
Latest: 6 Corr Surgeries Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy, on Catheter #20
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