Quality of Life survey

We did not get any so far.
Last week we got invite for new study at UCSF that will follow patients for 3 years to check how diet changes and exercise effect BCR. My husband applied and hopefully he will get in : ). But if not, we will follow recommendations of that study.

It is really nice that you got that e-mail : ))) ! Person starts feeling as a "person" and not just as a "chart" < 3.

If you get one, it's questions about energy levels, sexual function, changes in appetite & urinary function.
Mine wasn't great. lol

@peterj116
"was not great" :
: ((( - survey or your assessment : (( of side effects ?

@peterj116, I believe you might be referring to the Prostate Cancer Outcomes Registry in Australia and New Zealand https://prostatecancerregistry.org/

There are a variety of prostate cancer registries that help researchers. Here are a few:
- International Registry for Men With Advanced Prostate Cancer (IRONMAN) https://www.mayo.edu/research/clinical-trials/cls-20533339
- PROMISE, a nationwide registry of prostate cancer patients with inherited gene mutations. https://www.facingourrisk.org/research-clinical-trials/study/149/promise-registry-a-prostate-cancer-registry-of-outcomes-and-germline-mutations-for-improved-survival-and-treatment-effectiveness
- Prostate Cancer Registry – Update https://www.prostate-cancer-research.org.uk/registry-update/

Any others?

@colleenyoung Yep. That's the one. Is there an American equivalent, to ask actual patients how they're doing - as opposed to researchers?
Great from a mental health perspective.

@surftohealth88
I should have copied the questions as they came up.
Generally about how incontinence is going, erectile function, energy levels... helpful stuff like that.

I don't have the questions, but i have the results from the last survey, to see if we're doing any better than most...
(this is for prostatectomy patients)

HOW DO PEOPLE WHO HAD SURGERY FEEL IN GENERAL?
Feeling depressed 10%
Lack of energy 13%
Bowel habits are a problem 3%
Losing bowel control is a problem 1%
Urinary function is a problem 9%
Needed more than 1 urinary pad per day 31%
Experienced more than 1 urinary leak per day 20%

HOW DO PEOPLE WHO HAD SURGERY FEEL ABOUT THEIR SEXUAL WELLBEING?
Sexual function is a problem 45%
Can have a fair-very good erection 22%
Erections are firm enough for intercourse 13%
Ability to function sexually is fair-very good 24%
Have interest in sex 40%
Used sexual aids (devices or medications) 60%

I get two regular surveys:

- one every 3 months because I'm a participant in the international IRONMAN study (called TruNTH here in Canada)

- one from the Ontario health ministry called "Your Symptoms Matter", which tracks symptoms like pain, mobility, energy level, continence, emotional state, etc. It comes before every quarterly oncology appointment, and helps my medical team spot changes over time

I'd be concerned about anything that just appeared in your inbox out of the blue. You can call your cancer centre or oncologist's office to see if it's legit and appropriate.

@northoftheborder
I must have signed up for it ("Thankyou for participating") but everything's a blur from the first diagnosis.
Great that Canada has something similar.
It's kinda related to the funding/awareness thread. We just want to be noticed & considered.

The survey people were kind enough to resend the questions.
Have a look through this & see how you'd answer. (this is 12 months after prostatectomy)

Over the past 4 weeks, how often have you leaked urine?

- More than once a day
- About once a day
- More than once a week
- About once a week
- Rarely or never

Which of the following best describes your urinary control during the last 4 weeks?

- No urinary control whatsoever
- Frequent dribbling
- Occasional dribbling
- Total control

How many pads or adult diapers per day did you usually use to control leakage during the
last 4 weeks?

- None
- 1 pad per day
- 2 pads per day
- 3 or more pads per day

How big a problem, if any, has each of the following been for you during the last 4 weeks?
- no problem
- very small problem
- small problem
- moderate problem
- big problem

a. Dripping or leaking urine
b. Pain or burning on urination
c. Bleeding with urination
d. Weak urine stream or incomplete emptying
e. Need to urinate frequently during the day

Overall, how big a problem in general has your urinary function been for you during the last 4 weeks?
- no problem
- very small problem
- small problem
- moderate problem
- big problem

How big a problem, if any, has each of the following been for you during the last 4 weeks?
- no problem
- very small problem
- small problem
- moderate problem
- big problem

- Urgency to have a bowel movement
- Increased frequency of bowel movements
- Losing control of your stools
- Bloody stools
- Abdominal/ Pelvic/ Rectal pain

Overall, how big a problem in general has your bowel habits been for you during the last 4 weeks
- No problem
- Very small problem
- Small problem
- Moderate problem
- Big problem

How would you rate each of the following during the last 4 weeks?
- very poor to none
- poor, fair
- good
- very good

- Your ability to have an erection?
- Your ability to reach orgasm?

How would you describe the usual QUALITY of your erections during the last 4 weeks?
- None at all
- Not firm enough for any sexual activity
- Firm enough for masturbation and foreplay only
- Firm enough for intercourse

How would you describe the FREQUENCY of your erections during the last 4 weeks?
- I NEVER had an erection when I wanted one
- I had an erection LESS THAN HALF the time I wanted one
- I had an erection ABOUT HALF the time I wanted one
- I had an erection MORE THAN HALF the time I wanted one
- I had an erection WHENEVER I wanted one

Overall, how would you rate your ability to function sexually
- Very Poor
- Poor
- Fair
- Good
- Very Good

Overall, how big a problem has your sexual function or lack of sexual function been for you
during the last 4 weeks?
- No problem
- Very small problem
- Small problem
- Moderate problem
- Big problem

How big a problem during the last 4 weeks, if any, has each of the following been for you?
(no problem, very small problem, small problem, moderate problem, big problem)
- Hot flashes
- Breast tenderness/enlargement
- Feeling depressed
- Lack of energy
- Change in body weight

During the last 4 weeks, to what extent were you interested in sex?
- Not at all
- A little
- Quite a bit
- Very much

Have you used any medications or devices to aid or improve erections?
- Yes
- No

For each of the following medicines or devices, please indicate whether or not you have tried or
currently use it to improve your erections
- Have not tried it
- Tried it but was not helpful
- It helped but I am not using it now
- It helped and I use it sometimes
- It helped and I use it always

a. Viagra or another pill to improve your erections?
b. Muse (intra-urethral alprostadil suppository) to improve your erections
c. Penile injection therapy (such as caverject) to improve your erections
d. Vacuum erection device (such as erect-aid) to improve your erections?
e. Medication/ device other than those explicitly listed to improve your erections?