What they don't tell you

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reputo
Regular Member


Date Joined Apr 2010
Total Posts : 26
   Posted Yesterday 4:37 PM (GMT -6)   
I prefer not to have unrealistic expectations and do not like overly optimistic predictions that dash my hopes when reality sets in, so I created this list of things the doctors might not tell you – not to discourage anyone, just so that you know what to expect.

Although intellectually I realize the surgery probably saved my life, from a patient's point of view I had no symptoms other than urgency. Treatment caused (hopefully temporary) castration, loss of general confidence, memory loss, and loss of identity. Is it understandable that even though I should be grateful I don’t feel that way right now?

If they say not to worry because 75% of patients recover erectile function, but what they don’t say is the odds of surviving Russian roulette are better than 75%, so don’t be surprised if you are in the 25%. You’ll have to ask over what time frame they are talking about recovery – minimum and maximum, and what they plan to do to speed recovery.

Only 15% of patents respond to PDE5 inhibitors (like Viagra) after surgery. You’ll have to ask what they will do if the PDE5 inhibitors don’t work.

They won’t tell you *why* they don’t want you lifting more than 6 pounds unless you ask.

For a week or more after surgery, you may have night sweats that soak the sheets.

No matter how much their marketing materials will say they will support you and give you easy access to counseling, sexual health services, etc., you will have to manage your own case and push to get those services. Since you will be in shock and possibly hormone-deprived, it would be ideal if you had a pit-wife to manage your case.

If they say to wait and give it time, look up Dr. Mulhall’s Sloan-Kettering lecture and press them on the topic of muscle atrophy and penile rehabilitation. They won’t volunteer, so you’ll have to ask what their rehabilitation protocol is.

You may have to press them to treat the patient and not just the disease.

You may have to be your own advocate for treatments.

Expect some let-down for months to years after surgery – you’ve gone through a life-changing experience and it will take time to focus on what you *can* do instead of what you *can’t* do

Things will get better – just not on the schedule you would like.
:-)
Age: 57
Biopsy: June 2009. Gleason Score: 3+3.
Zoladex 10.8 mg subq implant on Nov 2, 2009
da Vinci RRP March 2010 Virginia M. Hosp.
Pathology: margins clear
6-week post-op PSA .06
April '10, Cialis 10 mg 2xweek, 1/4 of the time results in 50% erection
Bladder neck dilation May 2, 2010
0.08 cc Bi-mix injection June -- 80% successful


chitown
New Member


Date Joined Apr 2010
Total Posts : 14
   Posted Yesterday 5:31 PM (GMT -6)   
Had my surgery 10 days ago and catheter out yesterday and have been dry since then. Partial erection came 4th day of surgery, took no pain medication..had no nausea and side effect. Plan (per doc) is not to take viagra or cialis or any other tabs. Just MUSE or injection for massive blood supply improvement..for 3 months and am expecting thing to be back to natural after then. 10 months is the conservative back to normal target.

Am very glad your recovery is going well too.

So here is my list of what they dont tell you. This is what i learned and have beenmaniacally focused on.

1. Age - early the better for surgery/recovery - cant change that so get the beast found and removed early. I am 49 and my dad died of the PCa at 61.
2. Health - overweight, processed food diet (even the home salt is processed), comorbidity, sedentry life will prime you for complication. They dont tell that as they dont want to be judgmental.
3. Sex life - The 2 other things beside your age on sex life recovery is your prior sex life and the intimacy/willigness/participation of the partner in recovery process All the technolgy is of little value otherwise.
4. Doc's experience - number of surgery done is the key.
5. Post surgery diet and exercise - the 'new normal' is different than old normal. Huge change or improvement is usually needed

The process has been humbling for me and leading me to better awareness of all things little or larger, learn and seek information.
A realistic expectation is no one is responsible for your welfare than yourself..so drive on the road of life and reality will be friend. My slogan from now!
One thing I fully agree they wont tell something unless you ask...dont have insight on fixing that :-)

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted Yesterday 6:20 PM (GMT -6)   
The question is, how many men would get the treatment they need if they really knew and inderstood all the things that we say we aren't told?

I don't disagree with many of your statements, but honestly can't say I heard a whole lot after they told me I had agressive cancer. I did all the research, second and third opinions, etc., but not sure how much I really understood.

I made the conscious decision that living, seeing my kids and grandkids grow up, and being able to tell my wife I loved her, was worth more to me than erections and even having dry pants. Did I really understand all that I thought I did, probably not until the first time I wanted to make love to my wife, or I had to change pads in my pants several times a day. Could someone have told me in a way I could understand ? Probably not.
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,  9 month PSA < .01
1 year psa (364 days) .01


April6th
Regular Member


Date Joined May 2010
Total Posts : 264
   Posted Yesterday 6:45 PM (GMT -6)   
I agree with what has been posted so far, but here are some other things they didn't tell me before my operation

1) That I would pee like I am 18 again
2) That my wife and I have a greater appreciation for each other
3) That I have a renewed commitment to lead a healthier lifestyle
4) That this whole thing would be a lot harder on my wife than on me

Dan
Here are some of my stats:
Age:54
Father diagnosed with PC at age 72 - wasn't contained to prostate when found in 1992.
My PSA rose from 3.2 to 5.1 over the course of 1.5 years with Free PSA at 25% for the last two tests.
DRE showed no evidence of tumor but Uro thought my prostate was a little large for someone my age
PCa diagnosed 4/6/10 after biopsy on 4/1/10
1 out of 12 biopsy samples was positive with 5% of biopsy sample cancerous
Gleason 3+4
Da Vinci surgery on 6/1/10
Pathology report shows cancer confined to prostate and all other tissue clean


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted Yesterday 6:54 PM (GMT -6)   
Goodlife,

I think you covered a lot of what I experienced. Even after I taped the conversations with the doctors, if I listen again, I get a different opinion of what they said.

My brain was in panic mode, no doubt.

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted Today 12:12 PM (GMT -6)   
A couple of worthwhile points have been mentioned adn I have gleaned from this thread a few things to add to the "sticky" thread at the top of the page.

www.healingwell.com/community/default.aspx?r=e&f=35&m=1717641

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak

Post Edited (English Alf) : 6/25/2010 12:28:56 PM (GMT-6)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted Today 2:14 PM (GMT -6)   
Dan,

I really, really like your post. That is a positive attitude, and things that are easy to overlook.

I obviously wouldn't have gotten PC if I could have chosen, but my wife and have a new and different relationship since then. My outlook on every day is different.
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,  9 month PSA < .01
1 year psa (364 days) .01


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted Today 2:16 PM (GMT -6)   
Interesting thread.

While there were things that I didn't know going in to this ---- that my scrotum would swell to the size of a softball and turn purple being one I remember --- in general I was prepared for a worse experience in most every department than it turned out to be. I figured my pathology would be worse, the pain worse, that it would take me longer to be dry, that ED would be a bigger problem, that it would take longer for my energy to return, that I'd not be able to walk as far and as easily as I did in the first week, etc. etc.

The only thing I wish I'd known in advance was that my belly would be a little swollen and my size 36 pants weren't going to button up! Thank heavens I had sweat pants to go back to the hotel in the next day. And then I bought some size 39 pants and suspenders. Perfect!

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted Today 9:13 PM (GMT -6)   
Yup
I am still dripping (1.25 years post surgery) and with pretty total ED
Yes, it is psychologically harder than what I thought I signed up for.
No, I wouldn't change my decision to have surgery.

The loss of erections is much harder than I thought it would be -- in part because it is impossible for someone who has not experienced it to advise you.

"We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield."
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day
9 mo. PSA 0.00 -- 1 light pad/day ED remains
12 mo. PSA 0.00 -- still one light pad and ED


Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1405
   Posted 6/26/2010 2:40 AM (GMT -6)   

"Since you will be in shock and possibly hormone-deprived, it would be ideal if you had a pit-wife to manage your case."

You know, I believe that to be true.  I used the list Alfred and 142 recommended. First the doctor spoke to us about the daVinci surgery.  I was checking off items on the list.  My husband asked his questions, and then I looked at my list and starting asking mine.  Twice the doctor said, "Good question."  The one question that startled him a bit (and surprised my DH) was, "I know you've been with the hospital for 4 years.  How many surgeries have you performed?"  He said, "A couple hundred."  I said, "More than two hundred?"

Of course, he said yes, but my husband said I sounded like I was interrogating him.  LOL!  I did tell him that he looked really nice in his Internet photo.  He apprecaited that comment.  Now, Ron has an appointment one week before his surgery, and he doesn't think I have to come to that.

Thank you for the insight on this thread.  I am passing this along to Ron.  We can't wait until July 29.

Aimzee

 

 


Husband Ron, age 63
Had Progesterone shots for 6 months.  January PSA was .05. 
4/1/10 PSA 5.5  Prostate size = 50 cc.
On Cipro (antibiotic) for 16 days
Bone Scan/CT Negative
Biopsy 4/20/10  12 samples... Adenocarcinoma:  3 positive on right side,
one core left base (5% ` 0.5 mm) -  two cores of left lateral mid
(20% ~ 2mm, 10%, 10% ~ 1mm) - No Perineural Invasion
Gleason 6 (3+3)
July 29, 2010 - da Vinci Prostatectomy
 
(I do the posting for both of us.)


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 6/26/2010 5:33 AM (GMT -6)   
I too was not concerned about the side effects because I had lots left on this earth to do. I am not training hard for a triathlon in hopes of doing a full ironman in the next year. I was always a person that exercised but now I push myself harder and honestly even though I lost most of my sexuality I love life more today than ever before. life is great when you are livin a dream.

peace to you
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


reputo
Regular Member


Date Joined Apr 2010
Total Posts : 26
   Posted 6/28/2010 12:30 PM (GMT -6)   
@ goodlife
Informed consent suggests that I can make my own decision based on all the information without providers withholding some.

@ Sleepless09
Oh, yeah the waist size. I'm the same weight as before but can't button my pants. :-)

@ livinadream
Did you mean to say 'training hard' or 'not training hard'? So you feel no loss of identity as a man, or is it that you moved on to other interests?


Born: 1952
Biopsy: June 2009. Gleason Score: 3+3.
Zoladex 10.8 mg subq implant on Nov 2, 2009
da Vinci RRP March 2010 Virginia M. Hosp.
Pathology: margins clear
6-week post-op PSA .06
April '10, Cialis 10 mg 2xweek, 1/4 successful
Bladder neck dilation May 2, 2010
0.08 cc Bi-mix injection June

Post Edited (reputo) : 7/13/2010 6:10:29 PM (GMT-6)


freinds
Regular Member


Date Joined Jun 2010
Total Posts : 76
   Posted 7/29/2010 5:53 AM (GMT -6)   
does anyone know why the night sweats may occur after surgery. Mine began occasionally right after surgery and now 3 weeks out I am still getting them. last night shirt was soaked. feel well otherwise.
age 50, diagnosed April 2010
pre-op PSA 3.7
Gleason 6 uppud to 7 post surgery
post op. surgical margins clear
Bone scan clear
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/29/2010 6:17 AM (GMT -6)   
There is a long list of what they did not( or will not) tell you even in other treatments and choices. So, how do we like less than full-disclosure is it fair to the patients. The money we pay is more than fair in the USA, comparatively.

Aubrey Pilgrim (deceased now) has a book on PCa from 2002, you can find it at:
www.prostate-help.org/books.html
 (during this era he was a respected PCa advocate, probably many would say, who is this???)


Youth is wasted on the Young-(W.C. Fields)


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 7/29/2010 6:19 AM (GMT -6)   
Friends started a new thread here about his night sweats:
(replies should be posted there)
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.


logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5834
   Posted 7/29/2010 2:32 PM (GMT -6)   
I guess the concept of not feeling like a man with ED depends on how the individual defines a " Man "
age 67 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of Washington Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci, extensive PNI, That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
Dec 14,2009 psa 0.0 May 10 2010, psa 0.0

" Hypocrisy is vice's homage to Virtue " Francois de la Rochefoucauld, source courtesy of Tatt2


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/29/2010 3:07 PM (GMT -6)   
Great thread.

And great post Dan!

The biggest thing that bugs me about questions for surgery is that all doctors will tell you that they are good at surgery, and more than 50% are not. I would stress that anybody getting treatment makes good and sure that whatever treatment they are getting, they are using the best doctors that they can to do it.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


AKRoamer
New Member


Date Joined Nov 2008
Total Posts : 15
   Posted 7/29/2010 5:20 PM (GMT -6)   
reputo,

If I may ask, who was your surgeon at Virginia Mason?
Age 50
PSA 6/2003 1.5
PSA 7/2/2008 4.8, % free PSA 8
PSA 7/14/2008 5.2, % free PSA 8
3 weeks Levaquin
PSA 9/2008 5.8, % free PSA 7
Biopsy 10/08 10-core all neg, no sign of PCa, told prostate was "slightly enlarged"
PSA 12/2008 5.2, % free PSA 7
PSA 2/2009 4.7, % free PSA 8
PSA 5/2009 5.2, % free PSA 8
Biopsy 6/2009 12-core all neg, no sign of PCa
PSA 11/2009 4.6, % free PSA 11


tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 7/31/2010 1:58 PM (GMT -6)   
I have found that what they don't tell is often what you forget or don't have the courage to ask and then ask again and then say....what do you mean....can you tell me in english.
Most of these very smart Docs tend to be very poor communicators.
 
Then, what they don't tell or what you don't understand you can usually learn on healing well.....but it takes a lot of time committment to search the threads.
 
I did not have the courage or did not think to ask the Uro who did my RP if I could ask questions via email. I did ask the two Docs that did my sling surgery and AUS surgery and they both gave them to me, willingly. Moreover, they were very good at replying to emails and  were very candid about answering questions. If they are not willing to do this it may say something about their committment to open communications....or it may be that they think they are above it or to busy....again, tells you something and may be time to look for a new Doc.
 
I totally agree that priorities often must change. "life" is the critical issue. Sex and ED are much less critical after 60 for some of us. Loss of libido for me has made this a non issue. Incontinence is much more of a problem but I have not let it affect my life style. That said, I am only three weeks from activating my AUS and lookward to being dry...again.
 
Great thread!
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP,  7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day.
Latest PSA 4/1/10 negative.
AMS 800 artificial urinary sphincter implanted 7/8/10 at U of MI.
 
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