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Zimmer
Regular Member


Date Joined Oct 2009
Total Posts : 24
   Posted 12/16/2009 10:04 PM (GMT -6)   
I am looking into all of my options and considering WW and wondering if anyone has gone down that road , I understand that it
is not for everyone as every case scenario is different , but in my case with 3 out of 10 positive samples and the % being 1% in
2 and 3 % in 1. and a PSA under 5 it may be an option for me. I would like to hear from someone that is in a similar situation that
I am in and maybe is doing the WW....thanks
Diagnosed Oct 2009 during annual routine physical at age 58
PSA 4.37
10 biopsies - 3 positive all on one side
2 samples at 1%
1 sample at 3%
Gleason 3+3
Scheduled to see Dr Chin London Ont Dec 14th
Deciding on open or robotic surgery
Dr. Chin will do either one but impression I got is he prefers open and
he says results will be the same....


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 12/16/2009 11:16 PM (GMT -6)   
If you DRE was positive I think that they do not recommend WW also I thing it is the same if you have more than 2 cores positive This site might help make your decision http://urology.jhu.edu/prostate/advice1.php
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms lost one nerve bundle
Gleason upgraded to 3+3 Tumour not close to prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
First PSA Nov 2009 was 0.06 Continence 99% occasional stress dribbles no ED from first day after catheter removed


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 12/16/2009 11:23 PM (GMT -6)   
Dr Chin is an advocate for WW so he would be a good person to ask.
Go to the YANA website and look at the stories of patients that are doing WW.
Also the PCRI web site has papers on WW. Do a search on"Active Survelience" and the papers will come up.
JohnT

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


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 12/16/2009 11:27 PM (GMT -6)   
Zimmer said...
I am looking into all of my options and considering WW and wondering if anyone has gone down that road , I understand that it
is not for everyone as every case scenario is different , but in my case with 3 out of 10 positive samples and the % being 1% in
2 and 3 % in 1. and a PSA under 5 it may be an option for me. I would like to hear from someone that is in a similar situation that
I am in and maybe is doing the WW....thanks


WW is a viable option for you. There's a few guys here who are doing it. I could've too and maybe would have but for a minimally invasive clinical study I underwent, TFT with cryo. Take your time deciding as I always recommend, with your numbers you have time to consider all options. Do take into account this is a heavily pro surgery site, and that is what most will recommend here. You are the one who needs to weigh possible quality of life side effects short lived to permanent against possible added longevity. Take your time for afterward there aren't any do overs with any treatment if you choose one.
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A
 
2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study
 
4/22/08 - TFT performed at University of Colorado Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal
 
7/30/08 - Psa: .32
11/10/08 - Psa.62 - Not unexpected bounce after the 80% drop the quarter earlier. Along with urine flow readings, an acceptable amount left in bladder measured by sonic. Results warrant skipping third quarter tests, and to return April, 2009 for final biopsy scheduled to
complete clinical research study 
 
April 2009 12 of 12 Negative biopsy
10/12/09 - Psa .30
 
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/17/2009 12:45 AM (GMT -6)   
Zimmer,
Do you have family history of prostate cancer? If so what do you know about it?

Your case favors active surveillance (AS) according to recent AUA guidelines with two exceptions. Guidelines are that AS is an option if 3 of 12 cores or less are positive. You are 3 of 10. This might not really be a big deal at all but it's on the fringe. Just worth noting. Also you are 58 years old and below the median age of detection. This is not a big deal either. The good news is that you have very small percentages positive for cancer. If I was you, I would look closely at your family history with prostate cancer and see if any information is there.

In the mean time, you certainly have plenty of time to look things over and make a decision to do anything, if anything.

Tony
Prostate Cancer Forum Co-Moderator


hawkfan75
Regular Member


Date Joined Jan 2007
Total Posts : 165
   Posted 12/17/2009 1:10 AM (GMT -6)   
Zimmer
 
It would be terrific to really know the true extent of our cancers without removing the prostate.  Even following accessment after removal, how fast would have it continued without surgery?  I was very close to your numbers, and was surprised to find the extent was different than expected.  With WW, would it not have changed dramatically?  I have no clue, but am happy to have fought it aggessively.  Your sitution could be completely different.  We hope so.  You'll get good advice at this forum.  Good luck with your decision.
Age 57 at diagnosis (2006),  PSA 4.7 (up from 3.2 one year previous)
Biopsy November 8, 2006 1 of 10 cores positive 5% LEFT Side Gleason 3+3
Robotic surgery January 19, 2007
Post Surgery Pathology Stage T3a, Gleason 3+4, positive margins and capsular penetration RIGHT Side
Post Surgery PSA:  March 5, 2007:  0.01    5 month PSA  0.08
Adjuvant therapy began June 26, 2007 with Zoladex injection
Radiation began August 23, 2007, ended October 8
First post radiation PSA, December 18, 2007:  0;  March 2008 - still 0;  July 2008 - 0; Sept. 2008 - 0;  Dec 2008 - 0;  March 2009 - 0;  Final Zoladex injection!
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/17/2009 1:30 AM (GMT -6)   
Touche, Hawk,
For a moment, I forgot about your case. I apologize. I won't do it again. I hate this disease...But I am so pleased you are doing so well.

Peace my friend!

Tony
Prostate Cancer Forum Co-Moderator

Post Edited (TC-LasVegas) : 12/17/2009 12:34:16 AM (GMT-7)


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 12/17/2009 6:09 AM (GMT -6)   
One may want to consult with a cardiologist when considering waiting to have potential major surgery

Picture this, 58 and healthy, waiting 5 years , PC gets worse but now age is 63 and a heart attack occurred at 62. Surgery and recovery is far more complicated than it would have been at 58
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 12/17/2009 6:31 AM (GMT -6)   
WW also known as Waiting for it to get Worsesmhair
 
Just doesn't work for me an some others...At age 78 - no problem..
 
There has to be a fine line where you go darn....If I had just had surgery 4 months ago - it wouldn't have spread to my lymph system.
 
 
Age 54   - 5'11"   205lbs
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.


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 12/17/2009 8:14 AM (GMT -6)   
Steve, you hit it right on the head

While a lot of people chose to wait and it may be ok for their situation, I suspect they are really not looking at the entire picture when they decide. That is normal as PC is 1st and foremost on their minds

Its human nature to procrastinate and to wish problems away

In my case I had received a positive Biopsy of "only" 1 core, PSA seemed low at 1.9

But I decided on Surgery for these reasons

1. PSA several months earlier was 1.2 rose to 1.9 fairly quickly
2. Positive Biopsy
3. I was healthy, no heart issues, no diabetes, very able to go through surgery now
4. I had medical insurance ( no cost to me to do this now).
5. I had no bladder or ED problems related to PC

Rest assured every one of those 5 items could change in 5 years

The most important thing I heard from every single Dr I saw, " this is not going to go away by itself, it will slowly but steadily get worse"

One Dr (not a surgeon) gave me this scenario:
You are driving your car and you discover your tire is slow leaking and needs air.
Sure as the sun will rise you are going to have to stop for air, either now, when its flat or somewhere in between.
What do many people do, they wait, could end up being ok when you stop, but you also risk stopping at a less than safe gas station, stopping in the rain, a full flat, blowout, ruined rim, worn tire etc. A lot can happen, doing nothing will not put air in your tire, you can control when you resolve this problem.
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 12/17/2009 8:22 AM (GMT -6)   
Good luck Zimmer...don't have any thing to add. As you can see, there are stories on both sides of the equations to consider. This is the toughest part of this disease. The decision to treat or not to treat...and then if you decide to treat, which treatment do you use.

As you gather your information, take some time to absorb it all properly. Information overload is bound to happen and it will get very confusing.

Best of luck
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
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08
                 12 month Oct 2009 .09 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/17/2009 9:05 AM (GMT -6)   
Zimmer,

Have you considered Seeding w/wo IMRT added. Looks like you could be a good candidate for that. With the WW, if you wait a few years and keep an eye on things closely, and the PC keeps creeping up, you will be older, and that in itself will make it harder when you finally do seek treatment. With your stats, you should still have all options in front of you.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA:
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 in place


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 12/17/2009 10:08 AM (GMT -6)   
TC-LasVegas said...
Zimmer,
Do you have family history of prostate cancer? If so what do you know about it?



Tony


Tony although that's good advice in theory it's near impossible to know unless it's brothers, or cousins in our age bracket. Our fathers unless they died of prostate cancer never knew if they had it. As I stated before both myself and my 10 year older cousin have PCa. Did out fathers? We don't know. Were they even given DREs ? Probably not I know my dad wouldn't have bent over for one. Just the way he was. So family histories before our generation are for the most unknown.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 12/17/2009 11:41 AM (GMT -6)   
Zimmer,
5 years ago there were only a few doctors that recommended WW. Today there is a groundswell of doctors from every PC speciality arriving at this conculsion. As Scardio recently said, surgery is a pretty severe recommendation for those with low risk PC, because only 2% will actually die from it and 100% will suffer major complications. Klotz in his studies indicates that 3% of G6 pc is a varient and no treatment will result in a cure, regardless of the treatment or time of treatment. Hopkins says that delayed treatment is just as effective as immediate treatment.
So on one side you have all the data that says that low risk PC is just that, low risk and the cure is much worse than the disease, and on the other hand you have emotion that says "I just want it out now".
It's your body and your choice, but get all the facts before you make a decision that is entirely based on emotion. If you want to feel a little safer then get a color doppler or a 3D mapping to give you a better idea of the extent of your PC so you can make a more informed decision.
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


Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 12/17/2009 3:24 PM (GMT -6)   

Zimmer,

See my signature for details.  Similar to yours, but 3 of 6 biopsies were positive.  My beginning PSA was 8.4 or 8.6.

I echo what others have said. Take the time to research your options. I never consider WW or AS as it should be called since the DRE found a tumor.  For the record, WW is not just sitting and doing nothing or at least it shouldn't be. It should probably be called active surveillance which includes periodic PSA tests and biopsies.

Gene in Md


Age 70.
Dx Dec 07. PSA 8.4. DRE confirmed tumor. Three of six positive. Gleason: 6 (3+3). Seeds Iodine 125 Jan 08. PSA's 3.9, 1.7. Rising PSA's: 2.3, 3.4, 3.9, indicating  seeds not working.  April 09 began Lupron 30 MG ea. 4 mos.  Side effects hot flashes. Aug 09 - PSA 0.5!!!  Lupron working! Aug. 21 - 2nd Lupron shot.  Aug. 31 - began hyperbaric oxygen for rectal bleeding (radiation proctitis).  50 sessions as of Nov. 24 helped. 10 sessions saved in case they are needed later on.  Dec. 9, PSA 0.7.  Onco DRE negative. Says not to worry about 0.2 rise in PSA.  So far, so good.

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