Decisions, decisions, decisions...

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Whitey58
New Member


Date Joined Nov 2009
Total Posts : 7
   Posted 11/22/2009 6:22 PM (GMT -6)   
  I started on this life detour in Sept. '09.  Thanks for the thoughtful posts of information, links, and encouragement found here.  For any others new to the club, the link to Prostate Cancer Research Institute was a good source of info and a side by side comparison of the common treatments and their basic advantages and disadvantages of each.  I would recommend this as a good starting point for anyone like me, who until 60 days ago didn't know PSA from the PTA.
 
  When I started reading the menu of treatment options, I was expecting the "Burger King" option of "have it your way".  That soon gave way to the question of " will I have my ED with or without bladder or bowel complications?", now knowing up front, that the possibility exists of the three as a package deal, in varying degrees.  We are leaning toward DaVinci, thinking it gives us the best shot of being PCa free as opposed to living with PCa. We will get the best care we are able and not look back, and deal with whatever we end up with.  The urologist who performed biopsy has performed about 150 DaVinci surgeries and recommends this.  Radiation oncologist says IBRT is the way to go, but seems like complications come on later and can be progressive.  We have appt. on Tuesday the 24th at Mayo Clinic in Rochester, MN with a Dr. Thompson.  Decision will be made following that consultation.  Thanks for your help in wading through these issues.  The knowledge and insight of you that have walked where we are means much.     
 
 
51 yrs old
PSA 4.8  06/09- 3wk antibiotic regimen
PSA 5.1  07/09
DRE- prostate smooth but enlarged
biopsy 9/09  - R side- adenocarcinoma, gleason 3+3, 2 cores involved, tumor up to 9mm length, volume approx 20% of tissue examined, high grade PIN present.
L side - high grade PIN, no evidence of invasive carcinoma.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/22/2009 6:51 PM (GMT -6)   
Hello Whitey,

Based on your relative young age, your PSA, and your biopsy, looks like you have a full choice of primary treatments. Your uro/surgeon's 150 robotics really isnt all that many, not to say that he can't do a good job.

Bowel complications with either open or robotic surgery is pretty rare, though possible. The ED will vary immensely, as you have probably seen hanging around here.

Please keep us posted, especially after your next consultation.

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
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 11/22/2009 7:31 PM (GMT -6)   
Good Luck.
That is one of the things about Prostate cancer that is unique as far as I’m concerned. You have to figure what is actually best for yourself. Godspeed
Jack
Age 51, PSA 08/31/2009= 6.8, DRE Neg.
Biopsy 9/24/09 =10 of 12 positive. Gleason 6. 75% of one core.
da Vinci at Wash U, Barnes on 11/02/09
Pathology Changed Gleason to 4 + 3 = 7. Gleason 7 present in all 4 quadrants
All(4)periprostatic Lymph Nodes Negative, All(10)pelvic Lymph Nodes negative
Seminal Vesicles tumor free. No prostate extension


NewspaperLover
Regular Member


Date Joined Sep 2009
Total Posts : 311
   Posted 11/22/2009 7:34 PM (GMT -6)   
Hi Whitey58,
 

Of all the information I reviewed while considering my course of action (and also consulting three surgeons, a radiation oncologist, and a general medical oncologist) the referenced study and article below from the New England Journal of Medicine (March 2008 issue) was by far the most helpful to me.

 

The study followed 1200+ men and their partners for two years.  Interviews were conducted before surgery, and at 2, 6, 12, and 24 months.  Respondents were asked to guage their "degree of satisfaction" with "Changes in Quality of Life After Primary Care Treatment" in five areas, including Sexual Satisfaction and Urinary Incontinence.  The results are graphed out nicely in Figure 1 in the article referenced below;  you can keep clicking on Figure 1 it to get it to readable size.

 

I found the results more than interesting, and not that surprising from what I had learned anecdotally on this Board and other locations. 

 

For example, the men undergoing Prostatectomy were divided into Nerve-Sparing and Non- Nerve Sparing groups.  After two years, 40% of the Nerve-Sparing group reported they were sexually satisfied; only around 20% of the Non-Sparing group reported satisfaction.  The two groups were much closer on satisfaction levels with urinary continenece, roughly 80% and 70% were satisfied.

 

My personal choices, because of my situation, came down to Non- Nerve Sparing Prostatectomy (one bundle removed)  or a combination of Radiotherapy + NHT (hormones) for six months.  Surprisingly (at least to me), the Radiotherapy + NHT group reported about the same level of sexual satisfaction as the Non- Nerve Sparing prostatactomy group (roughly 20%) after two years.  That helped tilt things for me towards surgery as I decided radiation had its own problems, and that I would still be leaving behind a diseased, albiet now "burnt" organ. 

 

Had DaVinci surgery on November 5.  That has gone very well to date, with clean margins and no incontinence problem (lucky there).

 

Also, I have tried to keep in mind that as unpleasant as these consequences can be, the primary, indeed overriding goal, is to get rid of the cancer. 

 

Here is the artilce from March 2008, New England Journal of Medicne.

 

http://content.nejm.org/cgi/content/full/358/12/1250

 

 

NewsPaper Lover

 

Age 66

PSA:  6.0  on 07/31/09 having risen from 4.2 on 12/02/08.  Free PSA 23.5%.Other PSA History: 4.3 on 05/01/08; 3.3 on 11/15/07; 3.1 on 05/20/07; 4.0 on 11/30/06; 3.40 on 09/01/05.

 

Biopsy:  09/04/09  13 snips;  two positive.  Right Mid  4+3 = 7 and 15% of the total volume.   Right Lateral Mid 4+3 = 7 and 20% of the total volume.

 

DaVinci robotic surgery:  11/05/09.  Post surgery pathology:  margins clean, no invasion of seminal vessels, no upgrade of the Gleason scores, no evidence of cancer outside the prostate capsule.

 

Cathether removed one week later:  11/12/09.  Very minor dribbles for two days.  Stopped using pads after three days.  No pads or incontinence either by day or at night.   

 

Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 11/22/2009 9:25 PM (GMT -6)   
Newspaper lover,

Thanks for reposting the link to the NEJM article. I also found that to be one of the most useful when I was making my treatment choice. I was looking for the link to it when trying to reply to a newly diagnosed member a couple of days ago, but could not find it.
Thanks again.
51 YO
PSA at Dx: 8.2
DaVinci RALP: 10/31/08 -- Great MD in New Haven, CT
Negative margins, no extra-capsular involvement
One nerve spared
PSA at 0 for just over a year now.
 
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/22/2009 9:40 PM (GMT -6)   
Whitey,

Most of us know exactly where you are at.

I really liked your statement about getting the best care you could, not looking back , and dealing with the consequences. I think that shows that you are ready. With that attitude, you will be fine.

I don't think there are any wring answers for treatment for you. You have the whole menu available to you. I think some of us men have this innate curiosity that makes us need to know what is inside us. Surgery is the only option that gives us that luxury. On the other hand, potential side effects of surgery pose a potential immediate cost. At your age, I think the odds are good that you will make it through both incontinence and ED, but there are no guarantees.

Good luck and hopefully other guys on this forum can help you along the way.
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 injections


NewspaperLover
Regular Member


Date Joined Sep 2009
Total Posts : 311
   Posted 11/23/2009 7:45 PM (GMT -6)   
Rolerbe,
 
You are welcome...
 
NewssPaper Lover

TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 11/23/2009 8:52 PM (GMT -6)   

Whitey,

Great attitude...makeing choice and moving on. We have all been there and where you are now is probably the hardest part: deciding what to do. I will note that Dr. Patrick Walsh (Johns-Hopkins) suggests that a surgeon that has at least 300 procedures under his/her belt is the threshold for consideration. From my research, radiation at your age is not generally the treatment of choice as you have a long life yet to live. Some brothers here may object, but from the books that I have read and docs that I consulted I believe that the best prognosis at such an early age, all variables considered, comes from getting that thing out of there.

Those folks in Rochester, MN will be good in helping sort through it all. When you decide, just do it and don't look back.

best wishes,

Ted


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4271
   Posted 11/24/2009 7:09 PM (GMT -6)   
Hi Guys:
 
Re the NEJM article, I agree it is a good one and, in fact, I had posted about it a year or so ago.
 
However, I guess there must be conclusions in the article that make everyone happy.  While this study led NewspaperLover to the knife, it was one of the many reasons that I chose brachytherapy.  For example, some of the comparisions between nerve-sparing prostatectomy and brachytherapy are as follows:
 
1.  The "sexual score" (representing favorable quality of life) for nerve-sparing prostatectomy dropped after 2 years from 80 to 43, a decline of 46%.  That same score for brachytherapy patients dropped from 67 to 45, a decline of only 23%.  The reason the starting sexual score was different for the 2 categories is most likely because the average age of the surgery patients was 59, while the average age for brachytherapy patients was 65.  The comparisons for non-nerve sparing surgery were even more dramatic.
 
2.  The "urinary incontinence score" dropped from 96 to 80 (-17%) for surgery patients vs. a drop from 96 to 88 (-8%) for brachy patients.  Likewise, the comparisons for non-nerve sparing surgery were even more dramatic.
 
3.  After 2 years the percentage of surgery patients who either leaked >1 time per day, had frequent dribbing or any pad use was 39%.  The brachytherapy group of older patients had 21% for the same categories.
 
4.  After 2 years the percentage of surgery patients reporting "overall sexuality problems" had risen from 12% to 43%.  In the older group of brachytherapy patients, the rise was from 18% to 30%.
 
5.  After 1 year, spouse or partners of surgery patients reported either moderate or big problems with sexual functions in 50% of the cases.  For brachtherapy spouses/partners, moderate or big problems were reported only 13% of the time.
 
Now, it may be that some of the sexual issues for brachytherapy show up after 2 years - though my doctor tells me that, for early stage guys, the problems usually manifest themselves within 2 years or not at all.
 
For those of us who have already made our choices, this debate is moot.  However, for any patients considering future treatment, I would encourage them to read this important study on quality of life and reach their own conclusions.
 
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 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!
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