My uro sent me a questionaire

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English Alf
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Date Joined Oct 2009
Total Posts : 2218
   Posted 6/25/2011 4:33 AM (GMT -6)   
It is coming up to two years since I had surgery. Before I had surgery the uro’s department at the hospital in Amsterdam sent me a questionnaire to fill in and now they have sent the same one again so that they can compare the answers, (the data will also be made anonymous and used for research purposes).
I thought it might be interesting to share some of the details of this questionnaire so you can have an idea of what things they are monitoring, I have therefore translated the form.

All the questions are about if you have “problems” and most have 4 or 5 multiple-choice answers to grade the size of the problem as “none/no”, “a little”, “quite a lot” or “a great deal”:

Do you have problems lifting heavy weights (such as suitcases)?
Do you have problems going for a long walk?
Do you have problems going for a short walk?
Do you have to stay in bed or in a chair during the daytime?
Do you need help with dressing, eating, washing or going to the bathroom?
During the last week:
have you had trouble working or doing you normal activities?
have you had trouble doing things in your spare time?
have you been out of breath?
have you been in pain?
have you needed to rest?
have you had trouble sleeping?
have you felt limp?
have you lost your appetite?
have you felt nauseous?
have you vomited?
had constipation?
have you had diarrhea?
have you felt tired?
have you been limited in doing things due to pain?
have you had trouble concentrating, even on simple things like reading the paper?
have you felt tense?
have you been worried?
have you been oversensitive?
have you been miserable?
have you had trouble remembering things?
has your medical condition affected family life?
has your medical condition affected your social life?
has your medical condition caused you financial problems?

What marks out of seven would you give your health for the last week?
What marks out of seven would you give your quality of life for the last week?

How often do you need to urinate during the daytime?
How often do you need to urinate during the night?
Do you have to go to the bathroom as soon as you feel the need to urinate?
Have you been unable to get enough sleep because of the need to urinate?
Have you had trouble doing things outdoors because of the need to be close to a bathroom?
Have you urinated unintentionally?
Have you experienced pain during urination?
If you’ve been wearing pads have they been a problem?
Have you been restricted in your daily life by urination related problems?
Have you been restricted in your daily life by problems with your bowel movements?
Have you been faecally incontinent?
Have you felt bloated?
Have you had hot flushes/flashes?
Have you had swollen or painful nipples or breasts?
Have you had swollen legs or ankles?
Has weight loss been a problem?
Has weight gain been a problem?
Do you feel that your masculinity has been affected?
Have you been interested in sex?
Have you been sexually active (with or without intercourse)?

In the last week how often have you experienced any incontinence and how much urine do you lose at such times?
In terms of marks out of ten how much has your incontinence disrupted your daily life?
When do you experience incontinence: never; before getting to the bathroom; during sneezing/coughing; while sleeping; during exertion; after going to the bathroom; for no apparent reason; continuously?

The final questions are quite intimate:
In the last month:
How often have you been able to get an erection when having sex?
Have your erections been firm enough for penetration?
How often have you been able to penetrate?
Have you been able to maintain an erection after penetration?
Have you been able to maintain the erection until you were finished having sex?
How often have you tried to have sex?
How much have you enjoyed having sex?
How often have you ejaculated during sex?
How often have you had an orgasm dry or otherwise?
How much have you wanted to have sex?
How satisfied with your sex life have you been?
How satisfied have you been with your partner?
How confident have you been that you could get an erection when you wanted to?

The following questions are only to be answered if you have been sexually active in the last month:
Was sex enjoyable for you?
Did you have trouble maintaining an erection?
Did you have trouble having a (dry) orgasm?
Did you feel reluctant to try having sex?
Have you used any ED medications such as Viagra, Cialis, Levitra etc?

I feel that the nature of these questions help show that the docs know what kind of things can be a physical or mental problem!
(I haven’t included my answers here, to avoid confusing the post.)

Alf
Age dx 48
Apr 09 PSA 8.6
DRE neg
Biop 2/12 pos
Gleason 3+3
Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
Nov 09 PSA 0.1
Mar 10 PSA 0.4 sent to RT
13 Apr CT
RT 66Gy ends 11 Jun 10
Tired + weird BMs
Sep 10 PSA <0.1
Jan 11 PSA <0.1
Apr 11 PSA <0.1
Erection OK

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 6/25/2011 9:20 AM (GMT -6)   
Alf. Of all the questions one kind of stuck out. Would not be sure how to answer it.

"have you felt limp?"

Talk about double meaning!

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 6/25/2011 10:54 AM (GMT -6)   
Yeah sorry Jeff that was my translation and I sort of usedf the word "limp" on purpose.!!! The Dutch word was "slap", I almost used floppy,

turn

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 6/25/2011 11:01 AM (GMT -6)   
LOL :)
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/25/2011 7:11 PM (GMT -6)   
That's a great set of questions, Alf, I am impressed with the doctor for that. It would take a while to answer them all, but there would be a host of good information there to look at, especially comparing them to how you were when you started.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 6/25/2011 8:44 PM (GMT -6)   
In the section that asks about incontinence where does it list "being continent after corrective surgery?" It seems like the first doc would get "credit" for having a patient totally continent when in reality, the patient was doomed to a life of incontinence but had followup surgery by a different surgeon who corrected it.
Without such a statement the statistics can be misleading.
Jeff (continent after corrective surgery)
Age: 58, Mar 35 yrs, 56 dx, PSA: 4/09 17.8 6/09 23.2
Biopsy: 6/09 7 of 12 Pos, 20-70%, Gleason 4+3 Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: Glsn 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE present, PNI extensive, Sem Ves, Vas def clear, Lymph 0/13
Incont: 200ml/day ED: Trimix
Post Surg PSA: 10/09 .04, 4/10 .04, 7/10 <0.01, 12/10 <0.01
AdVance Sling 1/10/11 Dry

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 6/26/2011 2:07 AM (GMT -6)   
Jeff - good point. Also all my problems with BMs are IMO due to the SRT not the surgery.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 6/26/2011 6:18 AM (GMT -6)   
My surgeon has a similar questionnaire and patients are asked to fill it out at every visit so he can track progress. During the intervening 6 months past, I had my sling surgery that fixed my incontinence. I will be seeing him shortly for my 2 years status. Do I answer that I am continent or don't I?

Am I overthinking this? I am an engineer - it's my job to overthink data.
Jeff
Age: 58, Mar 35 yrs, 56 dx, PSA: 4/09 17.8 6/09 23.2
Biopsy: 6/09 7 of 12 Pos, 20-70%, Gleason 4+3 Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: Glsn 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE present, PNI extensive, Sem Ves, Vas def clear, Lymph 0/13
Incont: 200ml/day ED: Trimix
Post Surg PSA: 10/09 .04, 4/10 .04, 7/10 <0.01, 12/10 <0.01
AdVance Sling 1/10/11 Dry
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