Advice to newbies from a newbie

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John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4168
   Posted 1/26/2009 1:18 PM (GMT -7)   
I'm a relative newbie to the world of PC even though I've read a lot of books and abstracts over the last 5 years. There is a lot of conflicting data and advice out there which makes any decision on treatment options extremely difficult. In the last 4 months since being diagonised I have read most of the books, Walsh, Sardino, and others, read many technical abstracts and books on diets, plus browzed many forums and other websites. (This forum and Yano are the best and continue to provide the most useful data).
I'm an analyst and skeptic by nature and try to look at all the statistics and data in an unbiased way, but because of all the confusion and conflicting claims the end decision really has to be a gut decision because you have to live with the consequences of it.
Statistics are very important in coming to a decision on treatment options, but as my stat professor wisely said "on the average every person in the world has one tit and one ball". Statistics are useful but they  have to be questioned.
I initially thought I could treat this decision as I would a complex business problem case study, making a Harvard Business School decision tree with all the probable outcomes, then arriving at the best decision and outcome. I was wrong, this is a war and PC is the enemy that is trying to kill me so I have to do everything in my power to kill it or disable it so I won't be able to kill me. I was in a real war 40 years ago and survived and intend to do the same now.
The first thing in fighting a war is to know your enemy and how he operates then know yourself and your own capabilities. Getting as much intelligence as you can and developing a strategy that insures the highest probablity of victory. If you go in blind you will surely lose. It also helps to have the best trained people on your side in the fight.
I thought i knew a lot about PC from reading books and talking to friends that had been through treatment. I had decided that I had all the info I needed and was in the processs of scheduling surgery when my wife's doctor urged me to get a 2nd opinion. Only then did I realize how much I didn't know and would have been entering a gun fight armed only with a knife. I have since devoted a large part of each day learning as much as I could, and I have only just scratched the surface. I realize many of you newbies don't have the time or resources for a long research project and want to make a quick decision.
For you newbies I'll try to condense what I've learned and for the veterans some of this may be disconserting. But it's my take on all the info I have taken in, and I understand that it may have some flaws, but it is unbiased by not having to defend a decision or treatment I have already had. I'm always open to getting new information and will readily discard anything that is substantiated by other facts that are presented. Information is not emotional, it is either useful or not useful and I would rather have all the information I can get then determine it's usefulness without any emotional attachments.
 
1. Most men walking around have prostate cancer. Autopsies indicate that 34% of the men in their 40's, and 80% of the men in their 80's have PC. Approximately 2% will die from this disease. So the odds are in your favor when you start the fight.
2. In low grade cancers (Gleason 6 and low PSA) the cure rates for all options, surgery, radiation, active survailance, Cryo, Heat and hormone therapy are statistically the same. Some believe that most of these cancers are indolant and will never hurt you, and that's why the cure rates are similar. The data seems to support this, but you will have to make up your own mind and live with either the risks or the side affects of your decision, but basically the decision you make will have little affect on your overall survival rate, which by the way is very good.
3. In Gleason 8 and above and or high PSA the chances of reoccurance is high regardless of the local treatment option chosen. gleason 7 is tricky, as a 3+4 acts more like a 6 and a 4+3 acts more like an 8. The nomograms and partin tables support this and some of the best surgeons, like Walsh won't take patients with high risk because of the reoccurance rates. This would indicate that these cancers are most likely systemic and not local.
4. Bone and CT scans are pretty much worthless if your PSA is below 40. CT scans can't pick up cancers lesss than 10mm and this equates to .8 billion cancer cells. There are some new  promising technologies but they haven't had the time to develop meaningful long term data to support their effectiveness. Clear scans just means you don't have a large detectible mass, not that the PC hasn't spread.
5. Just because you don't have a reocurance at 5 years doesn't mean you are free. Reoccurance is common at 10 and 15 years.
6. Doctors will most likely overstate the cure rates and understate the side affects of all treatments. Be a sceptic and do your own reasearch as to the complications and side affects. Hope for the best, but if you can't accept living with the worst side affects or risks of complications then look at other options.
7. Doctors will always recommend the treatment they are involved with, Uros recommend surgery, Radio oncos recommend seeds or IMRT and oncos recommend ADT3. This is not because they are dishonest, but because they don't research fields other than their own and constantly search only for data that supports their field of practice.
8. Fellow patients will almost always recommend the treatment they have had, even though they have complictions or it may not have achieved their original expectations. In the marketing world this is know as "congnitive dissonance". It is human nature to seek information that supports a major decision you have made and try to convince others to come to the same conclusions you have.
9. If you have a reoccurance the PC is most likely systemic and not local. It is highly unlikely that another local treatment will work. A lot of people chose surgery because if it fails then radiation can be used as a back up. If you are using this logic to determine your treatment then choose ADT3, because side affects are reversible and all other treatment options are still available. I'm not advocating this option, but it makes the most sense if you want to use this logic chain to determine your treatment.
10.There is a vast difference in the skill and knowlege levels of doctors. It is often said that the skill of the doctor is more important that the treatment option. Get the best doctor you can get even if you have to wait. Get as many recommendations as you can get from reading and forums such as this. Ask other doctors who the best are, they know. Most uros don't know a lot about PC.
11. Prostate Cancer is slow growing. If you have been diagonized you have probably had it for 10 or 15 years, so a couple of more months won't make any difference. You have time to get a lot of opinions, and ask a lot of questions.
12. The most important thing is to have your cancer staged properly, This may mean taking more tests, getting 2nd opinions on path and talking to doctors in different fields. If your cancer is staged properly you can make much better decision as to the best probable outcomes. If you are going into a gunfight you want the biggest possible gun and information is that gun. Don't dismiss radiation, or hormone therapy or other options because someone said something bad about them, there are a lot of myths that can only be dispelled by talking to experts and doing your own research.
13. The is no evidence that diet or exotic supplements can cure PC.
There is compelling evidence that diet and some supplements can slow the progression of mets, slow tumor growth and increase PSA doubling time. Diet and supplements are another weapon to bring into the fight as they can surpress the enemy so you can find another way to kill him. 
14. If you choose radiation, adjunctive ADT3, or hormone therapy, drastically increases the effectiveness of the radiation. You want to hit the enemy with the biggest guns you can right off the bat so he doen't have any chance to recover. Logically this should also hold true for surgery, but I've heard very little about using ADT3 along with surgery.
 
I'm sorry to be long winded, but these are the hopefully unbiased thoughts of a newbie arrived at by looking at a whole lot of confusing data and trying to make some logical sense out of it. PC is highly individualized and individuals react differently to different treatments. Few things are written in stone so make the best possible decision for youself but only after researching and questioning everything.
 
JohnT
 
 
 
 

I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I most likely didn't have PC, but to keep getting biopsies every year.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found wis indolant and statistacally insignificant, but PSA histor was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland, currently scheduled for Feb 14.

Changed diet and takiing supplements while I wait. The location of the tumor plus the high psa make surgery an unlikely option. I'm still evaluatiing all treatment options and will make a decision once I get the results of the Combidex scan.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/26/2009 1:44 PM (GMT -7)   
Excellent John, you are in effect about as informed as the most informed can be (I had no time in my case after urinary blockage so I had to be more diligent in short order, needed treatment like asap, so had to learn as I went, and started from complete -0- on this). If other newbies understood some of such up front and took even part of the time you did, they would not be looking back and wondering, what if's. Well said and thought out, the scan is a good way to find out if lymphnodes are clear or it is supposed to be that good, you can inform us. I'm sure the scan is safer than a lymphendectomy proceedure. As you can see this enemy PCa is not typical or comparable to alot things that we do comprehend well. Paact Newsletter had one in last issue about two identical twins both being treated about the same time, with about the same stats, one is still living and the other isn't.
Best to you in whatever you choose.

Bob
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/26/2009 1:47 PM (GMT -7)   
Great Job, John T! (on the signature too),

I will add a line for #13. There is diet supplements that can help, and there are supplements that can hinder. That is why I limit my supplements. Sellenium supplementation for example has been shown to fast track aggressive prostate cancer. It is important for all to know that it's what isn't advertised in alternative medicine that can be the bad news.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 15, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 1/26/2009 2:32 PM (GMT -7)   
There are plenty of good urologists around, the well seasoned kind, that are quite versed in PC. I really don't like the generalized remarks like "most uros don't know a lot about PC." I think a statement like that sends the wrong message to the "newbie".
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 1/26/2009 2:36 PM (GMT -7)   
Hi John T,
I also am very impressed with your research and knowledge. You have done very well in summarizing basics of the situation. I am not an expert or a doctor. I, like you, did a lot of reading and personal analyzing before making a treatment decision. I do believe that each one of us has a little different diagnosis and therefore each decision is a little different.

There is one thing you alluded to but did not really discuss. The only way you can know for sure the status of your prostate cancer as regards to the prostate and area immediately around the prostate is via a pathology and therefore this means surgery. That of course does not mean that it will be cured by surgery, but the most complete analysis can be accomplished, and there is always with that the possibility of a good outcome that might save you from years of other treatments and and unknown worry.

The very nature of these things you have listed paint the picture of the difficulty of treatment decision. You obviously have your head on straight and I am sure you will make the best decision for your case. We wish you the best!

RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.1 10/30/2008


sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 1/26/2009 2:55 PM (GMT -7)   
Outstanding John T, Thanks.
Age at DX 57
5-18-07 PSA 7.7
5-06-08 PSA 4.6  8% free psa, but stable
10-23-08 PSA 5.65 4% free psa
11-04-08 biopsy
11-11-08 2 of 12 cores positive
Gleason 3+3  6  stage t1c / post-op 3+4  7  stage t2c
CT and Bone scan negative
Da Vinci RRP 01-09-09
Catheter removed 1-15-09
Pathology Report says it's gone!
First Post-op PSA due 2-17-09


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 1/26/2009 3:16 PM (GMT -7)   
Thanks John for all the information and research that you have done, but I have a follow up question.

Where did you find the research that goes with this statement:

9. If you have a reoccurance the PC is most likely systemic and not local

In my research I haven't drawn that conclusion and would like to compare some of the information that you have.

Thanks,
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 1/26/2009 3:25 PM (GMT -7)   
Selmer, I have been dealing with personal medical crisises since I was 28 years old. I have had great drs, mediocre drs, and slack drs, but overall I have been exposed to mostly and mainly brilliant, caring, dedicated and well versed drs over the years. I have been in situations where my doctor literally saved my life because of his knowledge. I don't think it sage to make someone already scared to death of PC and their dx or pending dx or biopsy, etc, to automatically feel they need to distrust their doctors and their advice. Yes, in most cases with PC, there is time to learn, to check, to compare. That was the escence of the post I had made above. There are so many men, that avoid checkups, doctors in general, won't take shots, certainly would never entertain a surgery unless they were in ER, so sometimes that pollutes their thinking. PC is a vicious monster on the prowl, and all us PC patients and survivors need to be well educated, because we have to make some horrific choices along the way, and only we are ultimately correct. Again, I have been a medical disaster for years, lol, and I am married to a nurse, so I am around stuff all the time, but lots of men are the opposite by nature.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/26/2009 5:58 PM (GMT -7)   
Dear John, You have done a lot of diligent work here. I really commend you.. I am printing this out for our sons.... I hope they never need it....Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4015
   Posted 1/26/2009 6:23 PM (GMT -7)   

JT...excellent summary as it puts a lot of info into one place.  I hope this thread gets bumped up from time to time as newbies arrive...

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/30/08.


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 1/26/2009 11:04 PM (GMT -7)   
Sorry, but the text is too condensed and unreadable to me.  Paragraphs and spacing are your friend.  ;-)


Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (getting better, though)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0

 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/27/2009 3:29 AM (GMT -7)   
He probably should ask his primary care physician to rewrite it. tongue Sorry Mavica, I could not resist it.
Bill

Post Edited (BillyMac) : 1/27/2009 4:40:50 PM (GMT-7)

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