Is everyone really different?

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Jim is sick
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Date Joined Mar 2010
Total Posts : 118
   Posted 4/29/2010 11:52 AM (GMT -6)   
I have been reading for weeks. I keep seeing the same thing repeated, "everyone's different." Just the idea grates with me. To me saying everyones experience with cancer is different, is the same as saying, "we just don't know how to determine why some are effected differently than others."
 
I'm an electronics engineer and I guess I'm just spoiled in knowing the simple rule set associated with this trade. Lots of equipment from lots of places makes troubleshooting difficult due to documentation. But the rules are simple and there are few exceptions. The old engineering joke goes, I should have become a doctor. Only two models of equipment to learn. :P
 
I can certainly contemplate the overwhelming amount of statistical data that would be required in order to learn what effects some people and not other people, and why. DNA must play a part in this as well.
 
So now I read the following from this story. I want my prostate back... http://www.msnbc.msn.com/id/35874966/ns/health-mens_health//
 
As it turns out, prostate cancer is "heterogeneous," as the panel's report puts it. That is, one man's prostate cancer differs from another's. Some prostate cancer is aggressive, spreads rapidly, and will kill you. But screening tends to pick up the more slow-growing cancers. They can stop growing. You can live with them for years, symptom-free. Some may even regress on their own, says one theory.
 
Ok great, now we have a name to associate with our ignorance. It's "heterogeneous"...
 
Take care, Jim
 
48, Caucasian, 5' 8", 200lb, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3=6, T1C.
Diagnosed: 2-12-10.
Current Treatment: Active Surveillance, next appointment Oct. 2010. 
Treatment Options: Proton Therapy in Bloomington IN
Mode: Vicious cycle of learning, freaking out, repeat...
Process: Reading Dr. Strums book.


Galileo
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Date Joined Nov 2008
Total Posts : 697
   Posted 4/29/2010 12:18 PM (GMT -6)   
The fact that prostate cancer is a heterogeneous disease is well established.

Not only is one man's cancer different from another, it also differs within the individual man himself.

That's why Gleason is not a simple number, but a combination of the two most common types seen:

"The predominant pattern and the second most common pattern are given grades from 1-5. The sum of these 2 grades is referred to as the Gleason score. Scoring based on the 2 most common patterns is an attempt to factor in the considerable heterogeneity within cases of prostate cancer."
Prostate Cancer - Biology, Diagnosis, Pathology, Staging, and Natural History
http://emedicine.medscape.com/article/458011-overview

"The success of Gleason grading system is due to the following reasons:
* It takes into account tumor heterogeneity by identifying primary and secondary patterns..."
Bostwick Labs, https://www.bostwicklaboratories.com/global/physicians/medical-library/articles/gleason-grading.aspx
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


Steve n Dallas
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Date Joined Mar 2008
Total Posts : 4834
   Posted 4/29/2010 12:41 PM (GMT -6)   

Jim - maybe this will help-> Take the blueprints from the last 10 story building you worked on and use it to build five 2 story buildings. Let us know if you run into anything different idea

Well, that might not have been a very good example for an electronics engineer, but I bet you get the picture.

 


Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 4/29/2010 1:34 PM (GMT -6)   
I can give you an example within cousins. My cousin (on my mother's side) had the davinci surgery six months before I did. Mine was more agressive than his, so I had the open surgery. I was leaking for very few weeks after the catheter was removed. He had leaking issues for 18 months.

Same thing with the ED, I healed faster than he did. But he is five years younger than I am, almost same weight, height, body frame, etc. We both grew up on farms and work in Information Technology. I don't think there is anything common about Prostate Cancer between men or the healing process.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
PSA Sept 2009 0.00, PSA Dec 21, 2009 0.02, PSA March 29, 2010 0.03
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


60Michael
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Date Joined Jan 2009
Total Posts : 2229
   Posted 4/29/2010 1:45 PM (GMT -6)   
And it is difficult to see shades of grey when you are so use to looking for only black and white.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 4/29/2010 2:00 PM (GMT -6)   
In addition to differences in the cancer itself, it seems to me there are profound differences in how people deal with pain, anxiety, uncertainty, side effects, etc. Many docs are better at dealing with "scientific" differences (different psa, different Gleason score, etc.) than wtih the "human" differences.
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
 


Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 4/29/2010 2:06 PM (GMT -6)   
Sorry Steve, but it doesn't help. My point is I believe there are enough resources to figure this out. (what do you have and how will it effect you) But the complexity prevents it from getting done. Plus there is no financial motivation for understanding, just treating. So who's going do it? Not me. It takes me 45 minutes to read a three page paper because every 4th word requires a google search for the definition to even follow along. Just call me anserine...
48, Caucasian, 5' 8", 200lb, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3=6, T1C.
Diagnosed: 2-12-10.
Current Treatment: Active Surveillance, next appointment Oct. 2010. 
Treatment Options: Proton Therapy in Bloomington IN
Mode: Vicious cycle of learning, freaking out, repeat...
Process: Reading Dr. Strums book.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 4/29/2010 4:29 PM (GMT -6)   
Jim,

Everyone is different is of course a gross simplification of a complex answer.

Probably 70-80 % of men respond favorably to their treatment of choice and never look back. While they may be different, their results are very undifferent.

For those who choose surgery, 50 to 60 % are continent, and an similar number regain sexual function. Those 50 to 60 % are similar in many ways.

The other Tx's have realtively high success rates. Even tho each man is different in terms of PSA, biopsy results, and Gleason scores, etc, the protocol for each TX is pretty much the same.

So my take is, we really aren't all that different for the most part.

Now take many of the guys on this forum, and and you may find some big differences. Many are on here because they have problems with their TX side effects, their cancer staging, failed TX, etc. It is important to remember for me that many are in a minority from the run of the mill prosate cases that were diagnosed, treated, and now live a fairly normal life.

Good luck Jim. Once the shock effect wears off, you may see that we relly aren't all that different. Just one model to deal with, but a few million revisions.
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


Heavy Leaker
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 4/29/2010 6:33 PM (GMT -6)   
Jim is sick said...
Sorry Steve, but it doesn't help. My point is I believe there are enough resources to figure this out. (what do you have and how will it effect you) But the complexity prevents it from getting done. Plus there is no financial motivation for understanding, just treating. So who's going do it? Not me. It takes me 45 minutes to read a three page paper because every 4th word requires a google search for the definition to even follow along. Just call me anserine...

Jim, did you read the book yet?


4 biopsies over 4 years starting in 2006, 4th biopsy showed 5% of one core Gleason 3+3=6.  PSA in 2005 6.0, rose to PSA 18 shortly before surgery.  Chose surgery over radiation due to conflicts in PSA versus biopsies.  PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09  T2B Tumor 30% of prostate  involving left & right lobes  NOMX Gleason 3+4=7  Urethral Resection margins &  resection surface clean Seminal vessicles clean.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/29/2010 7:14 PM (GMT -6)   
A diseases and ailments and cancers are different. Each person's medical history is different. You can go as far as DNA and other genetic difference, family history, etc. I don't see that as a negative thing. Now when you factor in that PCa is a fickled and ornery cancer to start with, unlike some cancers which are more predictable to treatment and outcomes.

Your frustration is well understood and I definitely empathize with you. But you are not going to ever come to terms with your cancer and situation using logic and the building blocks you know as an engineer, no more than I can apply business logic and accounting fundementals in my trade to reconcile my dealings with my cancer.

Denial is bad. Acceptence at face value is best, and adapt to the exact situation that you face personally. I would have never dreamed at the time of my PC dx, that almost 18 months after surgery, I would be on my 16th catheter, dealing with a never ending stricture problem complicated by salvage radiation that I never believed I would need, and definitely would have told you back then that I would never consent to radiation again. But reality is reality, and I adapated.

My radiation oncologist (a woman) told me how men fight mentally having cancer much worse than women as a general rule, because men want to be in control, and men want to put everything to the test of logic. That's why some guys get obsessed with life changes, strategies, diets, supplements, anything - to have some kind of control over their situation.

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 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Gleason7
Regular Member


Date Joined Feb 2010
Total Posts : 111
   Posted 4/30/2010 5:59 PM (GMT -6)   
32 cores....bet ya had to pack a lunch!
Started my PSA / BHP journey and biopsy's with a urologist who" didn't do" the Novocain or numbing agent.....Once I hit PSA 4.0 he wanted me do do a biopsy every six months.

74 years old / PSA 6.7 Gleason 3+4=7 / 2 of 12 cores at 30% and 70%. DiVinci at Henry Ford 2/10/2010. Margins, lymph nodes clear along with various other components. Nerves spared and gave up on the pads last week with an occasional sneeze drip (man those male pads feel like pillows). Doing 25 MG / viagra / nightly and things are looking up. Five week PSA was undetectable.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6980
   Posted 4/30/2010 7:45 PM (GMT -6)   
I think we are in the "every snowflake is unique" discussion. Each is made of water by a freezing process. So why are they not identical?

I am also an engineer by training, but to apply logic to PCa in general will only drive you to insanity. We certainly apply logic to developing cures, but to the disease?

Post Edited (142) : 5/1/2010 7:41:19 AM (GMT-6)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 5/1/2010 8:24 AM (GMT -6)   
Just remember- each of us are special and unique, just like everyone else... smilewinkgrin
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% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2216
   Posted 5/1/2010 10:18 AM (GMT -6)   
yes we are all different: age, medical history, general health, genes, lifestyles, height, weight, fitness, attitude etc and we're like that before we get diagnosed with cancer, so it's no wonder that the cancer and what happens to it and with it will be different too, but sometimes the differences will be small and sometimes large.
Alf
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.
Nov 17th 2009 PSA = 0.1
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 5/1/2010 12:59 PM (GMT -6)   
Jim,
I'm with you. I figure everything out based upon measurable data. I expected with all the data collected from all the patients in the world, there should be a best approach and an equation I can use to determine the highest probablilty of success.
But to quote my wife: "Physiology isn't Physics."
Darn it.
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 6=3+3. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23. Did I waste 9 months? Mtg 5/22.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05, 4/14 9 months - 0.04 and <0.01 with ECLIA.


Gleason7
Regular Member


Date Joined Feb 2010
Total Posts : 111
   Posted 5/2/2010 7:01 AM (GMT -6)   
Differences:
Lets not forget the providers as these days DiVinci nerve sparing robotic prostatectomies are available in just about every major metropolitan area. Then one has to consider the qualifications of the surgeons and how many procedures they have performed. Same would apply to radiologists... How experienced are they and what is their performance record? How many botched procedures have they performed. I feel for those guys who have gone through one of the procedures only to have the big C return.

74 years old - DiVinci 2/10/10 - No pads now. So far life after is good.

Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 5/3/2010 3:24 PM (GMT -6)   
Perg... Dude you are an amazing man. I could never handle what you are going through. I look up to you in that regard. I probably am still in denial... As far as handling this... I think I am probably the worst person here. I here you on the control thing, but in life I'm not a control freak. I'm actually a pretty laid back guy.

Heavy... I have not read the book yet. I haven't even cracked it. I read very slowly and I have been putting it off.

Good Life... "Just one model to deal with, but a few million revisions." lol good one! :)
48, Caucasian, 5' 8", 200lb, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3=6, T1C.
Diagnosed: 2-12-10.
Current Treatment: Active Surveillance, next appointment Oct. 2010. 
Preferred Treatment: I just want someone to harvest my immune cells, genetically engineer them to fight my prostate cancer, and then infuse them back into my body...


Heavy Leaker
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 5/3/2010 6:08 PM (GMT -6)   
Jim is sick said...
Perg... Dude you are an amazing man. I could never handle what you are going through. I look up to you in that regard. I probably am still in denial... As far as handling this... I think I am probably the worst person here. I here you on the control thing, but in life I'm not a control freak. I'm actually a pretty laid back guy.

Heavy... I have not read the book yet. I haven't even cracked it. I read very slowly and I have been putting it off.

Good Life... "Just one model to deal with, but a few million revisions." lol good one! :)

Jim,

 

I asked you if you have read the book because I think that reading this book & Dr. Walsh's can help you to be more comfortable with your situation.  I believe you said that you are an engineer.  As a professional, you should be able to appreciate the knowledge  some of the statistics in the book can give you.  I think you are concentrating on all of the inconsistencies in the disease rather than absorborbing the info & coming up with a plan of action that can give you some control over your treatment.  None of us have had it easy in fighting this disease.  I went through 4 years of tests before my cancer was diagnosed even though my PSA kept rising, eventually reaching 18.  I still have some pretty serious incontinence problems but I am very lucky compared to some of the guys here.  In addition, this disease has been a wakeup call as far as my general health goes.  I've lost 35 lbs & am exercising regularly.  After being sick I decided that I want to be healthy & I am going to do everything I can to be healthy.  It's pretty likely that you will be lucky also.  Try to get control of your emotions & let that scientific mind of yours lead you in your battle.


4 biopsies over 4 years starting in 2006, 4th biopsy showed 5% of one core Gleason 3+3=6.  PSA in 2005 6.0, rose to PSA 18 shortly before surgery.  Chose surgery over radiation due to conflicts in PSA versus biopsies.  PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09  T2B Tumor 30% of prostate  involving left & right lobes  NOMX Gleason 3+4=7  Urethral Resection margins &  resection surface clean Seminal vessicles clean.

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