AS is for Real Men

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goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/19/2010 7:45 PM (GMT -6)   
You can quote the NCCN guidelines, you can tell me only 2 % of low grade cancers are fatal, you can tell me we are over-treated, you can tell me about anything to argue for AS, but after the doctor tells me I have cancer, I don't believe their are enough statistics, studies, standards to make my b*lls big enough to wait.
 
It just doesn't make sense to me.  Oh right, the wife and I can have wet s*x for a longer period of time, and maybe I won't have to endure wearing pads for a few months, or for the radiation guys, I won't have to experience fatique,  or diarhhea, whatever it is we are avoiding.
 
Oh and by the way, for all you guys who enjoy biopsies, let's have one every six or 12 months.  Don't forget the PSA's.  I know how it is with having them after the treatment, I can only imagine the anxiety as I wait for what I would believe is the inevitable.
 
Not until they have tests that are within a percent or two on the correct gleason, whether it is indolent or aggressive, or whether is contained or not.  There are too many unknowns in this equations for simple guys like me.
 
I picked a treatment, knew the possible side effects, and got it done.  While I wasn't a candidate for AS anyway, I don't care if I had a 5 or 6.  I would have chosen the same route.  And no, it wasn't some money hungry doctor who made me this way.  I'm just built that way.  When my car, or furnace, or dishwasher develops a problem, I fix it.  I don't wait for it to break real bad, hoping maybe I'll die of something else first, or my house will burn down.
 
My hats off to you guys who can do it.  I just had to say this.  Now I feel better.
 
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


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 1/19/2010 8:56 PM (GMT -6)   
Well said Goodlife and I hope you really do feel better.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 1/19/2010 8:57 PM (GMT -6)   
Hi Goodlife,
 
I have often thought about this issue, but didn't quite know how to put it in words that would make sense. Thanks for writing your post because if had better writing abilities, I would have written exactly what you did.
All the best to you and thanks for your post.
 
Magaboo

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/19/2010 9:03 PM (GMT -6)   
Goodlife, many and many men feel exactly the same way you just expressed. With my previous cancer bouts, and with that ultra rare type, there is no such thing as AS, there is no such thing as Chemo, and at the time adjunct radiation was just speculation on the part of radiation doctors in hopes it would help (mostly to the extreme low number of cases in the world). I have been clear of it for 10 full years now, the safety level my medical oncologist at the time felt comfortable telling me. I did surgery and I did that horrible neck/throat radiation, it looks like it may have worked. Based on what they knew at the time, it would have killed me in 5 years or less if I had chosen to sit it out. I was 47 at the time and still had kids at home, so never an option to me.

For most regular guys, there is nothing chicken or wimpy about wanting to be rid of a cancer, paritcually PC, we talk on one side about how slow it is, for many, but for others, its an agressive monster that still takes 30,000 lives a year in this country alone. So I respect each man's choice on how they want to deal with it.

The AS option is a good option for many, but its only as good as the committment from the men that follow it to the letter. There are many men that would do good on it, no doubt. Like you, I never even closely met the criteria, so its a mute point.

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,
1/19/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4225
   Posted 1/19/2010 9:11 PM (GMT -6)   
People make decisions in different ways. some make their decisions based on probabilities of risk vs outcome. Some make decisions based on gut feel based on their experiences. Others make decisions based on emotions and others make decisions based on what others will think of them.
There has been a lot of research on how decisions are made, based on one's personality traits and how one processes information.
This is why when presented with the exact same information individuals will come to completely different decisions.
How you arrive at a decision is mainly based on your personality traits. There is no right way or wrong way, but what ever decison you make you alone will have to live with the consequences.
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


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 1/19/2010 9:19 PM (GMT -6)   
Each of us had to make choices as to which treatment we would have done to us. We all have reasons for the choice that we make. I agree with Goodlife for my decision. Cut this cancer out of me and let me try to move on with my life. Others that I know have chosen seeds with great success. Many have gone with RT and a few have gone with AS. Many have been successful and were able to deal with the preasure of facing the big C. More power to them. It is not for me to judge what teatment someone choses for themself. I just hope that what ever treatment that it is successful for them.

Just had to put in my thoughts on this.

Jeff T
Cajun Country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/19/2010 9:28 PM (GMT -6)   
John,

You said what I am feeling I think. How I'm built, I just don't have enough courage to wait it out. I have seen guys on here who have, and they obvioulsy are built different than I.

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


qjenxu
Regular Member


Date Joined Sep 2009
Total Posts : 187
   Posted 1/19/2010 9:42 PM (GMT -6)   
blue pill, $25.00

pads, $ 5.00

have the love of my life be around another 40+ years, priceless.

anything else, there is mastercard.


I just love that commercial.

:-)

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/19/2010 11:59 PM (GMT -6)   
Goodlife, buried in your comment is the fact that a change of mindset is difficult. Change is difficult...this is a well known fact.

To successfully manage stakeholder change, effective AS programs follow a multi-point approach (these 4-points are the Klotz approach):
1. identifying patients who have a low likelihood of disease progression during their lifetime, based on clinical and pathologic features of the disease, and patient age and comorbidity (the NCCN guidelines, the Epstein Criteria, "What's My Type?", or other similar standards)
2. close monitoring over time
3. developing reasonable criteria for intervention, which will identify more aggressive disease in a timely fashion and not result in excessive treatment
4. meeting the communication challenge to reduce the psychological burden of living with untreated cancer.

Points 1, 2 and 3 have been throughly discussed. Point 4 is the difference maker. Successful programs are employing more emphasis on 4 than ever before. Someone reading chatter on the web (only) isn't going to be ready, willing or ABLE to accept that the psychological burden of living with untreated cancer has less impact on quality of life than unnecessary curative therapy...paraphrasing what you said, we've been ingrained with "fight to the end" cancer mentality. AS requires a mind shift, a change in the paradigm of our culture. In the short term, a lot of candidates will undoubtedly be turned off, but over time, as more and more continues to be published (NCCN and AUA very recently, and others) and understood, this will be more widely and successfully accepted.

Change is not easy.

mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 375
   Posted 1/20/2010 12:04 AM (GMT -6)   
Goodlife,
   After robotic prostatectomy with resultant ED, and all the articles that state I made an absolutely stupid decision to treat my low grade, gleason 6, non-lethal?  prostate cancer with any treatment at all,  your post makes me feel much, much better about my choice. My thought processes are like yours. God bless you for posting today, you say it all for me............No point for me to come here anymore for some kind of affirmation that I made a resonable choice........
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
4 0's in a row now, 14 months out
Incontinence gone in early December '08,
ED remains, have given up on penile rehab, trimix injections used for sex now, that's the way it's going to be ...


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4225
   Posted 1/20/2010 12:16 AM (GMT -6)   
Goodlife,
We all think differently and make different choices. Sometimes they work out and sometimes they don't.
The unfortunate part of this disease is that there are a lot of choices and a lot of different expert opinions about those choices. If the experts can't agree how can we mere mortals expect to sift through all the information and come to the correct conclusion. At best we are all taking our best shot, which is still an educated guess.
Personnally I've always taken a lot of risk in my life and I'm fairly certain that if I have guessed wrong I'll still have many years left. I think we are all afraid of the unknown. I've lived with this for 11 years now and have no fear anymore. I had plenty at first because I didn't know anything. I know now there are a lot of other alternatives still in the tool box if this doesn't work.
For me, information was a way to get over the fear of the unknown. I now look at my PC as a challange, a complex problem that needs to be solved, rather than a burden.
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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/20/2010 1:05 AM (GMT -6)   
With me included, there were ten folks who to this point posted. 1 in the 10 was qualified for AS under the new NCCN guidelines.... The originator definitely did not qualify which sounds like about the right ratio we will encounter here at HW. He chose to be treated and has no regrets.

Just running my own study here.

Prostate cancer sucks...

Tony
Prostate Cancer Forum Co-Moderator


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 1/20/2010 4:09 AM (GMT -6)   
- one thing that casey59 does not state is his signature and his stats -

- change of mindset is not the issue - having someone want to keep cancer in their is their choice - I (and others) chose to get rid of it - if casey59 wants to keep his cancer he is welcome to it.
- change of mindset is not difficult - but it can be stupid.
- you do not second guess about life and longevity - you embrace life - I chose to embrace life.
- if I pee in my pants , so what !!
- if I cannot get a hard-onn, so what !!
- I chose life

nuff said,
BRONSON
.................
Age: 54 - gay - with spouse, Steve - 59
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
location: Peteborough, Ontario, Canada
............


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 1/20/2010 6:34 AM (GMT -6)   
Goodlife,
You said it perfectly. I was not a candidate for AS - physically or mentally. I had visions of the creature from Aliens bursting out of my abdomen, and wanted it out of there. Now!
I wonder if the ones making the AS recommendation actually follow their own advice. Did any of the men on the team under 50 have their PSAs checked? Did their wives get mammograms?
That would be a very telling statistic.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
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 1/20/10
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day
1/11/10 6 months: Still 3 pads but leak is now 320 ml (5 day avg.)
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4154
   Posted 1/20/2010 7:57 AM (GMT -6)   

Goodlife's post and several of the replies amply demonstrate that this is an emotional disease and not just a physical disease.  Otherwise, how in the face of the strong data and the outstanding judgement of medical professionals could resonable men say they would not try a perfectly acceptable treatment, i.e. AS?  As realziggy is fond of saying, men who seek treatment for very early stage PCa are treating anxiety as much as they are treating the disease...I beleive he is correct.

Personally my viewpoint on treatment is about 180 degrees away from Goodlife.  I thoroughly researced AS including discussions with the Johns Hopkins medical team who run their "Expectant Management" program.  I have always been data driven and, when the data told me that I was not an AS candidate, I moved on to what I felt was the next best available treatment.  However, I can assure you that if I had qualified, I would have definitely selected AS.  I don't think it has anything to do with b**ls...it is simply the emotional make up that allows logic to overcome fear. 

Actually, I think to some lesser degree this emotional angle is why some men choose surgery over brachytherapy despite the data.  Some men just have this need to "get it out" and I guess all of the logic in the world is not going to change this.

Additionally this factor may also play into the hands of those who advocate less testing.  For me, knowledge was power and it enabled me to make what I felt was a reasonable decision.  However, those who are concerned with spiraling medical costs and overtreatment must realize that knowledge also yields emotional responses that don't always result in logical decisions.  I will continue to advocate for early and frequent testing, but I can understand their point of view.

Anyway, mine is obviously a minority perspective on this board but I wanted to share it...

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"!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/20/2010 8:34 AM (GMT -6)   
Tud, your counterpoint is excellent. The emotional side will always be a difficult one to either break or overcome with facts and stats unfortunately. Instead of looking at Cancer, as a singular generic terrible thing (from which the I got to get it out of my body asap at all costs), PC should be looked at what it really is. Threre is the slow growing and slow moving variety, usually earamrked by low gleason, low psa, low # of cores, low % of cancer in cores, and no strong family path. For those in that group, AS is still as sensible a choice, along with the normal options of surgery and RT, including of course seeding.

In order to have the logical mind in a position to think through the maze of choices without panic, one has to gain the knowledge of all the choices and their true cancer risk if there is any hope to abate the emotional only type of responses. So I am big agreement where you were going with your post.

Then of course, there are plenty of men, that due to their numbers and/or agressive nature of their PC, have to pass by the AS right from the start and move into making the right and practical choice for dealing with their type of PC.

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,
1/19/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/20/2010 10:47 AM (GMT -6)   
Tud,

We are just built different, doesn't mean anything else. I honestly didn't know a Gleason 6 from a gleason 10 when I made my choice, but it doesn't make any difference. I just don't have the trust in medical opinions, testing, etc, to believe i could just watch it.

I really, really respect those who do AS, and are successful. I just don't have enough cahoonas to risk it. I'm also a terrible gambler.

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


Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 665
   Posted 1/20/2010 11:28 AM (GMT -6)   
I convinced myself (and was convinced) fairly quickly that a 3+4 Gleason was not a good option for AS. I often wonder if I was 3+3, knowing what I know now, if I would go through with the surgery. That is a really tough call. I remember that before I made the decision to have the surgery, I could hardly think about anything else - I would find myself in an unrelated conversation with someone and realize I wasn't paying any attention to the conversation -- I was back on the decision-making process. A real calm came to me when I finally decided to have the surgery. I think that ultimately, my mental makeup (or cahoonas?) would convince me to get things taken care of, and not be wondering month in and month out. I have to throw my hat in as one who doesn't have the cahoonas to risk it either. I'd probably get REAL tired of the biopsy thing, because I would probably be doing that a lot. They need a different sound effect for that procedure, it sounds a lot worse than it really is...

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/20/2010 12:07 PM (GMT -6)   

Please allow me to start this posting with my agreement with one of the key points goodlife opened this thread with…it takes strength and courage to choose to go the AS path.  It takes strength and courage to confront cancer, period.

--------------------------------------------

A couple of individual responses…

mspt98 – It appears that you met some, but not all, of the NCCN guidelines for AS.  NCCN does not recommend AS for men meeting only some of the criteria…if you would refer back to this post (http://www.healingwell.com/community/default.aspx?f=35&m=1694125, 4th post down), please note the big red “AND” notations.  Unless you have other terrible health problems not mentioned here, at age 52 you probably have longer than 10-years life expectancy (you would typically have about 30-years expectancy for average health).  Now, understanding that, if you were 76 instead of 52 (24 years older), and had the same case stats, how do you think you would feel about considering AS?  There is nobody here, or at the NCCN, or anywhere else—absolutely nobody—has suggested that someone like you who does NOT meet the NCCN criteria should have much more strongly considered AS.  At your age, I personally believe surgery IS the “gold standard”…but I digress to yet other threads on this site with that comment.

tatt2man – Maybe we just differ.  I believe “change is difficult”, you believe “change of mindset is not difficult.”  Maybe on this we can just agree to disagree. 

Tud – You wrote, “this is an emotional disease and not just a physical disease. Reiterating the commonly agreed-to point that it takes balls to go AS, not everyone who meets all the AS criteria is going to be ready, willing or ABLE to accept that the psychological burden of living with untreated cancer has less impact on quality of life than unnecessary curative therapy…which is why I expressed pleasure that the AS centers of excellence are now including emotional support programs (Klotz program:  meeting the communication challenge to reduce the psychological burden of living with untreated cancer”).  But let me express my own support to your comment, Tud, by saying that while the outstanding AS programs now include a dimension of emotional support, the other 90+% (probably greater than 95%) of patients who do NOT meet the AS criteria and do not, therefore enter AS programs…well they are largely left to their own devices for the needed support.  Sites like this fill that void.

---------------------------------

Important summary point:  Medical knowledge improves over time.  In our father’s, or perhaps grandfather’s day, PC was discovered when it was palpable and surgery was about the only treatment option, and surgery always removed prostate, nerves, everything.  Obviously, lots of things different today.  Characteristics of low risk PC are understood, but I see more research breakthroughs in the future using gene identification to more precisely define & differentiate cancer types.  AS programs have improved and will continue to improve, just as surgery will continue to improve, as will HIFU, and radiation, etc.  The choice we made yesterday might be different than the advice we give to our brothers or sons tomorrow because things change.

Important summary point 2:  Did I reiterate enough times that if you only meet some, but not all of the AS guidelines, then you probably are not a good candidate for AS.  A lot of guys seem to have missed the big “ANDs”.

Peace

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/20/2010 12:20 PM (GMT -6)   
The "ands" are an important part when you are learning about contract law. And the "ands" make a big difference in this disucsion too.
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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4225
   Posted 1/20/2010 12:29 PM (GMT -6)   
This thread clearly shows that when presented with the same information different individuals will come to completely different decisions. Casey, Tud and I would make a different decision than Goodlife and Jeff. I think the value of this Forum is that the information provided enables everyone to reach his own conclusion in his own way and find support for that decision.
As Tud stated, there is a large emotional part of this disease that can't be ignored and many individuals will continue to make decisions based upon that. Others will find the information provided valuable and use it to arrive at their own 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


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4154
   Posted 1/20/2010 12:31 PM (GMT -6)   

I think Casey makes a great point about the need for emotional support in AS centers.  Hopefully that will be recognized as an important part of the treatment in the future.

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"!

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/20/2010 12:37 PM (GMT -6)   
Tudpock18 said...

I think Casey makes a great point about the need for emotional support in AS centers.  Hopefully that will be recognized as an important part of the treatment in the future.

Tud,
 
What I wrote (copied/pasted below) IS a part of the Klotz program objectives, for example.  I copied/pasted from his literature:
 
1. identifying patients who have a low likelihood of disease progression during their lifetime, based on clinical and pathologic features of the disease, and patient age and comorbidity (the NCCN guidelines, the Epstein Criteria, "What's My Type?", or other similar standards)
2. close monitoring over time
3. developing reasonable criteria for intervention, which will identify more aggressive disease in a timely fashion and not result in excessive treatment
4. meeting the communication challenge to reduce the psychological burden of living with untreated cancer.

-----------------
Edit:  I added this part to the Klotz literature: "(the NCCN guidelines, the Epstein Criteria, "What's My Type?", or other similar standards)"
 
 
 
 

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/20/2010 12:39 PM (GMT -6)   
Casey,
I qualified mspt98 because of the ambiguous NCCN definition that stated "include as an option" for the GT 10 years. Unless you agree with me that hey already need to revise their guidelines...

I think you need to revise your summary in that thread to remove the all of "Low Risk case conditions" part since the LE part is changed.

PS: We technically have NO members posting in this thread that the NCCN would recommend AS for except mspt98 based on the ambiguous technicality...

PSS: mspt98 I fully support your decision for treating your disease.

Tony
Prostate Cancer Forum Co-Moderator


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 1/20/2010 12:59 PM (GMT -6)   
TC-LasVegas said...
Casey,
I qualified mspt98 because of the ambiguous NCCN definition that stated "include as an option" for the GT 10 years. Unless you agree with me that hey already need to revise their guidelines...

I think you need to revise your summary in that thread to remove the all of "Low Risk case conditions" part since the LE part is changed.

PS: We technically have NO members posting in this thread that the NCCN would recommend AS for except mspt98 based on the ambiguous technicality...

PSS: mspt98 I fully support your decision for treating your disease.

Tony

Hmmm…  This is getting off of NCCN’s focus.  They are trying to focus on the set of men that DO meet the criteria, not so much on the guys that DON’T meet the criteria.  They aren’t trying to solve world peace…it’s very clear that only a narrow set of patients meet the criteria. 

[By the way, sampling the participants here in this forum would not be representative of the broader population of PC patients.  For more on that discussion, see this thread started by bcc:  http://www.healingwell.com/community/default.aspx?f=35&m=1694361 ]

Nonetheless, addressing your question while hoping to not further divert focus from the real message of the NCCN announcement, my personal opinion is that the new PC patient needs to start their education process understanding all of the options.  My journey started with an explanation of AS as one of the options.  Similar to mspt98, I was too young to give it strong consideration; however, not everyone’s life circumstances are like mine.  I could see how it could be effectively used as a “deferral strategy” for someone my age who wanted to watch the continued improvement in curative treatments while monitoring their own clinically insignificant PC.  I can see how that could be appealing to some guys…can you?  We are not all the same.

BTW, glad you join me in voicing support of mspt98’s choice.  In fact, I support every individual’s choice.  I’m also glad that AS is emerging as a solid choice for more men.  Although it is still a narrow set of PC patients, more will likely choose that path with greater confidence than every before.

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