Is this the right web site for Newbies? watchful waiting group?

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Berdoo/Arkansas
Regular Member


Date Joined Feb 2010
Total Posts : 183
   Posted 2/15/2010 11:36 AM (GMT -6)   
This site seems more involved with PC diagnosed and treated. Not Newbies with elevated PSA and negative DRE
debating Biopsy?

I seem to remember a site that was broke dow to newly discovered, watchful waiting, treatments,
radiation treated, proton beam???
Any ideas here?

My thinking is If I am a watchful waiter because of age, and conditions
and would not pursue any treatment with modalities then My watchful wait is not to even do a biopsy.
The thought of fecal contaminents into my body cavities, and since I am a bleeder kinda turn me off.

Thanks Geezer67

Psa 4.5 for a year
dre hardness on right.
no symptoms
age 67 3/4

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 2/15/2010 11:45 AM (GMT -6)   
Berdoo,

This site is for anyone that is involved with PCa no matter their treatment or non-treatment path. All of us dealing with it need a good ear we can talk to from time to time. Then again maybe we have something to offer someone else.

So as long as you feel like participating this is the place for you. There may be others that choose WW and would look to you for answers also.

Welcome and good luck,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/15/2010 11:45 AM (GMT -6)   
We deal with new friends here all the time, even men that don't have a full blown PC dx, men that are undergoing DRE's and biopsies.

On the AS/Watchful Waiting front, if one chooses not to have tests, biopsies, or any more DRE's, then, that isn't what AS is all about. A person certainly would have the right to do that, but for all practical purposes, it would be equivilent to burying one's head in the sand and saying, " I don't want to know, I don't want to know"

AS is a serious option to those that meet the criterea safely, but it also invokes responsibility on the part of the patient, and having a good relationship with one's urologist and keeping good communications going at all times, in the event of a negative change of events.

Without a biopsy, bleeding or not, painful or not (mostly not severely painful), there would be no positive way of dx PC in your body.
And then one really gambles, do I have cancer or not? Is it indolent or aggressive? Am I treatable at this point or not?

Cancer sucks, and dealing with it sucks too, but if you have to have it and deal with it, then one needs to be armed with all the knowledge and advice they can stand, so that if they have to make a primary or even secondary treatment choice, they will do so informed.

That kind of knowledge also helps takes some of the raw fear out of the equation, and being at a place like HW, helps too, lets one know they are not alone, and that others have walked on this path before.

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: 1/10 .12
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 in at the same time, 2/8-Cath #11 out - 21 days


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4156
   Posted 2/15/2010 11:58 AM (GMT -6)   

Berdoo, I agree with both Sonny's and David's comments.  In particular, I think David's comment about sticking your head in the sand is appropriate.  Sorry to be so blunt, but I can't imagine any of the frequent posters on this forum agreeing with what you are suggesting.  You really need to find out what's going on so you can DECIDE which treatment is right for you.  If you don't proceed it's just foolish, IMHO.

Respectfully,

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 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Berdoo/Arkansas
Regular Member


Date Joined Feb 2010
Total Posts : 183
   Posted 2/15/2010 12:15 PM (GMT -6)   
ok, I get it guys. THANKS, and all the money I paid into health care. time to collect. an interesting side note is the poor guys that don't have a doctor, don't have a PSA test, don't have a DRE. what percent of the population is that? I bet huge? what happens to them? I guess a percentage will find they have PC and it will spread to bones, bladder, etc and they be done for quick. Stats I read are about 3% of the population will kick it with PC .
The negative reports abound in the web adding to the cornfusion. a doc at stanford said 95% of the prostate he examined did NOT need to come out and would NOT have killed the man. All 6's I think

Berdoo

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/15/2010 12:31 PM (GMT -6)   
Until there is a more accurate and definitive method of deciding who has the kind of PCa that will kill, or advance, or lie dormant, it's basically all a crap shoot. Until that time, there will always be guys who can qualify and stay on AS, there will be a larger number who do not qualify under the current criteria for AS, who will have to make a decision as to how they proceed. For them, they must be guided by their biopsy results, their physchological outlook on life and risk, and how well they research and study and understand their options. In any case, the first step to making a rational, informed decision is to know what you have to deal with and that only comes with a biopsy. Anything other than that is just denial of facts. Head in the sand, denial, rejection of their condition, whatever way you describe it, you are not doing watchful waiting without a biopsy, close consult and work with a knowledgeable doctor and active monitoring by annual, at least, biopsy to keep check on your progress. Don't delude yourself or let others tell you that anything less is classified as watchful waiting. Sorry to be so blunt. sad smilewinkgrin
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 2/15/2010 12:35 PM (GMT -6)   

Hi Berdoo..........David, Sonny & Tudpock are all right on the money. You need to find out if you have PCa, before you decide what to do about it. I won't double up on their advice..........in your first post you made a vague reference to another site. Perhaps you mean the www.yananow.net website, which would be a good adjunct to this one. I discovered that one after my diagnosis and before treatment, and didn't discover HW until after I received treatment. But I have received valuable information and support here as I believe you will if you stick with us. Keep us posted and feel free to ask any/all questions.

Arnie in DE

 


Age 56 (biopsy & surgery)
PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, NO MX, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point......ED at 10 months continues to improve, albeit slowly. Continued daily use of 100mg Viagra (ADC). Discontinued pump use; manual stimulation to varying states of erections; achieved penetratable erection on a couple of occasions
3 month PSA--<0.1
6 month PSA--<0.1
10 month PSA--<0.1


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 2/15/2010 12:38 PM (GMT -6)   
First of all fecal contaminents is more in your mind than in reality of most biopsies. It's standard to have an enema before and an antibiotic prescribed. My doctor has me do one pill the day before the day of and the day after. So far with 3 soon to be four biopsies I've never had a resulting infection. You cannot be a watchful waiter if you're not diagnosed with Pca. If your initial urologist recommends you have a biopsy, please do so. You may possibly test negative which will I'm sure please you. But if not it's best to know how widespread any possible cancer may be and its aggressiveness. Only if it's low risk or if you're elderly should watchful waiting be a valid option. Many have an unwarranted fear of a biopsy only to agree with most that it wasn't that bad. Some demand and are sedated for it although IMHO that really isn't necessary.
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
 
 
 

Post Edited (realziggy) : 2/15/2010 12:09:21 PM (GMT-7)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/15/2010 12:55 PM (GMT -6)   
Berdoo,
Your case looks like it may be a good WW case from what I have read. But I have missed some of your previous posts. WW is a decision that only you can weigh. i think if that's you call, that this forum could use your input on your progress. If you decide on WW, have you decided what would change that plan? Some examples would be:

1> Set conditions that may change your plan
2> Tell us how you are planning to monitor your disease (Maybe put them in your signature)
a> How often to monitor PSA
b> How often will you have DRE's
c> When might you re-biopsy.

I don't think our few WW guys tell us enough about the "active" part of their active surveillance...

Tony
Prostate Cancer Forum Co-Moderator


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 2/15/2010 1:29 PM (GMT -6)   
I think you should go to the Phoenix5 web site for another perspective
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
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/15/2010 1:37 PM (GMT -6)   
HB,
Can you be more specific?

Tony
Prostate Cancer Forum Co-Moderator


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/15/2010 1:44 PM (GMT -6)   
what perspective would that be, hb?
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: 1/10 .12
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 in at the same time, 2/8-Cath #11 out - 21 days


Berdoo/Arkansas
Regular Member


Date Joined Feb 2010
Total Posts : 183
   Posted 2/15/2010 2:09 PM (GMT -6)   
Thank you sooooo much!!! you guys are just super. I get psa tested every 3 months.
It was 2.5 and climbing for a long time and then 2 years ago a jump to 3.78! then a year ago a jump to 4.65 and the last 4 quarterly psa reads were a steady 4.5.

My Med doc, a super super older doc and conservative is watching my progress.
I have a DRE every 4 months to monitor ANY change. For the last 2 years there has NOT been a change, IE No nodules.
just a slight firmness on the right compared to the left.

The same as my urologist said.

I will monitor both exams and if the slightest change JUMP to a biopsy. Probably an IV since next is a colon scan, so I need to get used to the IV! DRAT!!
Today I opted for a Color doppler thing, Just to have a look see, Since MY doc said it would be a good step instead of just the DRE/PSA. He said my holding PSA is actually a good sign. His PC patients have gone up and up.
I realize that may not be the rule! BUT, it ain't good to go up and up!

and I agree with all U folks that encourage the Biopsy is the Gold standard for determination!!

Geezer67 age 67 3/4 diabetic, sky high Tryglicerides, Treated High BP, asthma, acid reflux,
Psa current 4.5
DRE firmness felt

Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 2/15/2010 3:17 PM (GMT -6)   
Well, there was one study done in Scandinavia, that showed no difference in survival with surgical removal of the prostate after 65. This might be because prostate cancer is slow growing, and you might have to live a long time to get any benefit from the surgery. So, being over 65 and having some significant medical issues, it might make sense not to treat the problem. The argument against getting a biopsy is that you've already decided not to treat it. The argument for a biopsy, is that if the prostate cancer looks aggressive (high gleason score, lots of positive cores) you might change your mind about treatment.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/15/2010 3:21 PM (GMT -6)   
Postop,
That would suggest that no-one is helped with surgery at the age of 65. I find that highly doubtful, but I certainly welcome you posting that study in support of that claim. Please don't view me as skeptical but rather questioning.

Welcome to HW, please let us know more about Postop...

Revised:
The following link is an update of the Bill-Axelson trial in the Scandinavian countries...
http://tinyurl.com/ya5h5n8

Perhaps what Postop is referring to?

Tony
Prostate Cancer Forum Co-Moderator

Post Edited (TC-LasVegas) : 2/15/2010 2:33:42 PM (GMT-7)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/15/2010 3:34 PM (GMT -6)   
Visit the yananow.net website they have a forum board for questions too. See if you can contact Terry Herbert one of the founders of it.  I know Terry from years ago, he personally has done and knows the pluses and minuses of W.W. or A.S. (waiting and monitoring). He did so for many years, of which I was a witness and supporter of his actions. He also did a psa test schedule daily for 30 days and posted the results...you would be amazed at how often your psa level changes back and forth. So you need history and trends to know what is the overall trend.
 
In his case, he was found later and now is dealing with PCa, but he is highly educated in all of this and especially as being moderator of that website, has seen plenty over the years. There is a veteran you might wish to talk with. He does not claim to be an expert and has humility too, the right kind of guy you probably should consult. He is not new to all this.
Youth is wasted on the Young-(W.C. Fields)


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 2/15/2010 5:06 PM (GMT -6)   
Postop said...
Well, there was one study done in Scandinavia, that showed no difference in survival with surgical removal of the prostate after 65. This might be because prostate cancer is slow growing, and you might have to live a long time to get any benefit from the surgery. So, being over 65 and having some significant medical issues, it might make sense not to treat the problem. The argument against getting a biopsy is that you've already decided not to treat it. The argument for a biopsy, is that if the prostate cancer looks aggressive (high gleason score, lots of positive cores) you might change your mind about treatment.
Welcome to the forum Postop
Prostate cancer CAN be slow growing or then again it may be aggressive. On a second note unless you firstly have the biopsy you cannot know the Gleason or number of positive cores.
Bill


1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 2/15/2010 5:12 PM (GMT -6)   
Berdoo,
The site you mentioned you were looking for was probably
where the stories are broken down by treatment choice or PSA or age at diagnosis etc
Bill

Berdoo/Arkansas
Regular Member


Date Joined Feb 2010
Total Posts : 183
   Posted 2/16/2010 9:47 AM (GMT -6)   
Thankyou Billymac, that was the site. all the pre bees.
I had the color doppler yesterday. No fun at all. relax he says RIGHT. and since I can't it hurts.

and 20 minutes of that, boy was he thorough!!!

now I wit for the radio guys report
there was nothing I could see on the doopler, nothing except calcium. deposits.
no cysts, but there might be tiny ones? and that makes the prostate hard???
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