What are SERIOUS side effects (this bugs me)?

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 6/7/2010 10:14 AM (GMT -6)   
I was just reading the article posted regarding HT and Radiation. In the article, they say "serious side effects" occured in just 2% of the patients.
 
One of my pet peeves pertains to that term. If I get miserable constipation or difficulty urinating, my QOL is markedly decreased. I'm miserable. Yet I suspect that is not considered a SERIOUS side effect. Such statements are misleading.
 
Thoughts?
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 6/7/2010 11:10 AM (GMT -6)   
Serious side effects equals Life Threatening to me.
Age 55   - 5'11"   215lbs
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
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4156
   Posted 6/7/2010 11:18 AM (GMT -6)   

Mel, excellent point.  One of the problems with various studies on QOL is that the definitions are not constant so we need to look at the fine print.  And obviously "serious" is in the eye of the beholder.  As a current example Steve thinks "serious" means life threatening.  When I was looking at PCa treatment options I thought "serious" included ED, incontinence and bowel issues. 

Tudpock (Jim)


Age 62, Gleason 3 + 4 = 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 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 6/7/2010 11:39 AM (GMT -6)   
When I worry about HT and SRT I think about things like colorectal bladder fistulas and permanent bowel and bladder incontinence.  I suppose permanent bone and muscle loss would also be serious.  Transient side affects would not be as worrisome.
 
Carlos

Diagnosed 2/2008 at age 71, Gleason score 5+3=8, stage T1c, PSA 9.1. 
Robotic surgery 5/2008, nerves spared, stg. pT2c, N0, MX, R0, Gleason 5+3=8 
PSA <0.1 at 20 months and each test since surgery.


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 6/7/2010 11:45 AM (GMT -6)   
I would call long-term incontinence and complete ED as serious. The bowel issues so far with radiation make my afternoon miserable and sometimes bloody, but unless they become permanent, they aren't serious. The need for pads almost 8 months out has become a way of life, so that does qualify as serious so far.

Something that totally changes the way I work and live for a long period of time is serious. Obviously that which kills you or leaves you functionally impaired is serious.

Arno
Regular Member


Date Joined Apr 2010
Total Posts : 54
   Posted 6/7/2010 12:20 PM (GMT -6)   
I am under HT, and personally have nothing serious. The first 10 weeks I had a lot of 'hot flashes', but that has become much less since. I have no incontinency, no erection problems. I feel fit and generally very well.
Although I know I am on the danger list as a matter of course.
March'06: PSA 3.6
Diagnosed at age 63 Sep'09: PSA 575, GS 7 (4+3)
3 positive cores in 6
Bone scan: as a fully lit christmas tree
With Zoladex+150mg Casodex PSA <0.1
Additionally 4-weekly Zometa (zoledronin acid)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/7/2010 2:02 PM (GMT -6)   
Mel, I think its a good point too. But it is one that could be very subjective, unless specifics were called out. My chronic stricture issues usually fall in the 2-4% range of side effects from surgery, but I can assure you from living with it for nearly 19 months now, being on my 17th catheter, and having endured several thousand (for real) bladder spasms, it is a major side effect to me with major quality of life issues. Some might choose to debate the seriousness of it but I am living this life every single day, and it never gets easier, and you don't get "use" to it. You simply have to accept and adapt in the meantime.

I would think long term or perm ED and/or Incontinence should certainly be considered major side effects and quality of life issues.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 6/7/2010 2:08 PM (GMT -6)   
I was going to cite David's cath experience as a "serious", but figured he'd chime in - in my mind it qualifies on all counts.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 6/7/2010 4:04 PM (GMT -6)   

David:

Your situation underscores my point. When "few serious side effects" are reported, that is BS since there are effects that will totally mess up your QOL.

 

Mel


63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/7/2010 5:11 PM (GMT -6)   
absolutely, mel, and thats why stats and % don't really tell the human story behind the numbers.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 6/7/2010 5:16 PM (GMT -6)   

When a doctor says, "You may feel some minor discomfort," you should hear, "You will feel like you've been hit by a bus."

When a doctor says, "There are few or no side serious side effects," you should hear, "You will be spending a lot of time in the library looking up the meaning of the phrase 'informed consent.'"

Zen9 

 


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 6/7/2010 5:32 PM (GMT -6)   
I have a book called "How to Lie With Statistics" from a college course some years ago. The objective was to learn how to "prove" both sides of a single case using inventive presentations of the same data.

I use it to mess up the mind of a statistics fanatic I know.

It's like the 98% are continent within x months. Did they mean Leak-free/Pad-free, or using a security pad?

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/7/2010 8:20 PM (GMT -6)   
zen, do you have even a single doctor that you see, that you have much confidence in? I guess because I see my uro probably way many more times than the average guy, he has become an expert at knowing when he is causing pain/discomfort, and has reached the point that he can tell by my face and voice tone what kind of pain threshold day I am having. I use to see a surgeon, non uro, that was also the the county cornener here, and I swear, he treated us living patients roughly, probaly from handling corpses, lol. you wouldnt want that guy to do an DRE, had huge rough hands to start, lol.

142- speaking of stats, and us financial/accounting nerds thrive in a sea of numbers by nature, I read a rare update of the ultra rare cancer that I last had 10 years ago, and they have actually reduced the known number of cases in the world from 300 to 100 cases, and I had it on my scalp the first two times, and its the rarest of the rarest ,with only 6 known cases to the scalp in medical history. How did I get one of only six known cases of something like that? think of the odds considering the population of the planet. The normal definition of an ultra rare disease, is considered 10,000 cases or less. It just boggles my mind.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 6/7/2010 8:53 PM (GMT -6)   
"zen, do you have even a single doctor that you see, that you have much confidence in?"

Yes, Purge, I do.

Zen9
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