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    Old 09-11-2020, 08:52 AM   #1
    hmcg7
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    Urinary incontinence

    Hi again everyone,
    This month marks 3 years since my prostatectomy and 2 years since my last treatment with radiation. Most importantly, my PSA levels are undetectable, however, I still suffer from urinary incontinence. I have had a cystoscopy and a urodynamic test with no real response. Now my urologist wants to repeat the cystoscopy under anesthesia and attempt to increase the opening at the bladder to increase the flow. I want to get better of course but I am skeptical about another procedure. Anyone have this type of experience? Thank You

     
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    Old 09-11-2020, 09:49 AM   #2
    Prostatefree
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    Re: Urinary incontinence

    A few questions.

    Did you have continence before your procedures, inbetween, or after at any time? I was developing leaking issues before my diagnosis.

    How bad is it? Inconvenient, pads, diapers, catheter?

    Have you tried diet restrictions; alcohol, carbonated beverages, and caffeine including coffee and soda? They irritate the bladder. Alcohol can relax your control altogether. I'm good for one hard drink and then it depends on how long a day I've had and what I have indulged in. I carry a pad for such events.

    Are your bowels soft and do you empty them daily? Constipation and hard stool can press on the bladder constantly. A full bowel increases my chances of leaking. I now use a daily fiber supplement for many reasons including managing my incontinence.

    Are you overweight or obese?

    How are your kegel muscles? Often they are practised incorrectly. Have you tried physical therapy with an incontinence specialist?

    My experience is it takes a combination of many things to manage this side effect. It's complicated by the dual treatment. The surgery side effect is immediate and can respond to recovery. Radiation can halt the recovery if not complete after the surgery. Radiation side effects can take longer to show up.

    Back to the first question in a less delicate way. Was the cancer, surgery, and radiation extensive enough to cause a permanent loss?
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    6-30-20 PSA less than 0.02, zero club 4 yrs

     
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    Old 09-12-2020, 09:14 AM   #3
    hmcg7
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    Re: Urinary incontinence

    I had no incontinence issues prior to treatment and they were mild following surgery, It became worse during radiation and has not gotten any better. I probably need a couple of pads a day especially if I am active that day. I have 1-2 cups of morning coffee and drink in moderation concerning alcohol. No bowel problems and I am not overweight and walk or hike 5-6 days per week. I perform the Kegel exercises daily and have been on Myrbetriq for a couple of months now.
    There has not been a permanent loss in other matters. I am just wondering if going through another surgery is worth additional risk or should I just accept that this is the way it is going be.

    Thanks for your input

     
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    Old 09-12-2020, 03:07 PM   #4
    Prostatefree
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    Re: Urinary incontinence

    You can always choose to have another procedure. Personally, I would avoid one as well. While they have saved my life there always seems to be some collateral damage.

    I suggest giving up the caffeine and alcohol for a while. Try the coffee first and cut back on the alcohol. I substituted with green tea, lemon, and ginger. Those two are tough to give up, but its worth it to see if it matters. I now have one cup a day. Two cups and it can start to cause issues. For me, balancing these have made the difference.

    Check in with a physical therapist experienced in kegel work to confirm you are dong them properly. Not uncommon for men to think it is just clinching the anus. You should be able to raise and lower your kegel muscles without clenching your anus.

    Pay attention to the fullness of your bowels and when you leak. If you notice a connection move them more. Don't use chemicals. Add fiber supplement. It's all I got.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    6-30-20 PSA less than 0.02, zero club 4 yrs

     
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    Old 09-13-2020, 02:07 PM   #5
    Eonore
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    Re: Urinary incontinence

    I second everything that Prostate free has said. I do not drink, but eliminating caffeine made a huge difference.

    Eric

     
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    Old 09-13-2020, 06:35 PM   #6
    hmcg7
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    Re: Urinary incontinence

    Thank You for your input.

     
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    Old 09-21-2020, 12:53 AM   #7
    HighlanderCFH
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    Re: Urinary incontinence

    Quote:
    Originally Posted by hmcg7 View Post
    I had no incontinence issues prior to treatment and they were mild following surgery, It became worse during radiation and has not gotten any better. I probably need a couple of pads a day especially if I am active that day. I have 1-2 cups of morning coffee and drink in moderation concerning alcohol. No bowel problems and I am not overweight and walk or hike 5-6 days per week. I perform the Kegel exercises daily and have been on Myrbetriq for a couple of months now.
    There has not been a permanent loss in other matters. I am just wondering if going through another surgery is worth additional risk or should I just accept that this is the way it is going be.

    Thanks for your input
    I have a question about your Kegel exercises. How many of them do you do each day? While Mayo Clinic says that we should perform them for the rest of our lives, Mayo also suggests that only ONE set is needed per day.

    This would mean just one set of about 7 total reps. Too much of this exercise can actually weaken the muscle. I've had people -- on the other board -- who had problems, which pretty much were resolved after they cut down on the Kegels.

    I don't know if your answer might be this simple, but I sure hope it helps!

    Good luck,
    Chuck

     
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    Old 09-21-2020, 11:58 AM   #8
    IADT3since2000
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    Re: Urinary incontinence

    Hi hmcg7,

    I'm glad you have already seen some posts from those with personal experience with this issue.

    Is your urologist a specialist in treating urinary side effects of surgery or radiation, or someone who just does this as part of managing and treating a wide array of urologic issues? The fact that the doctor did urodynamic testing suggests to me that he or she has more involvement than the average urologist.

    Apparently it helps to go to someone for help who specializes in this area. The PCRI conference series almost always has a specialist speaker who addresses urinary side effects, but not this year. In 2016 the speaker was Dr. Gary Leach, who practices in the LA area and drives a yellow Lamborghini with the license plate: "IMKUDRY". Gotta love a doc with a sense of humor! Of course, when you call his office, the receptionist asks you "Can you hold?", and then you hear a chorus of laughter.

    His talk, available from PCRI for a modest price (prices drop year by year) drove home the point that specialists can often offer more help than general urologists. He went over the various causes of incontinence, the ways of assessing what was going on, and treatment and management options/tactics for each circumstance, as well as the odds of success and follow-up steps. He provided a good view of problems with earlier solutions and what is possible now. He emphasized that patients should not "settle" for a situation that was bothersome for them as help almost always could improve their situation or completely eliminate the problem.

    In the moderator's Q&A he was asked how patients could find a specialist. He recommended the organization National Association for Continence. Their website lists "Centers of Excellence" and also has a doctor-finder feature. I checked and found one doctor in Tucson, and there may be others in Arizona. The site has a lot of educational resources for patients. If you check their site, can you report back about its usefulness and whether you had a good experience with any leads it provided. It would help educate the rest of us, especially those of us who fortunately did not have to face this issue.

    In 2018, Dr. Stephen Auerbach, Newport Beach, California, addressed this issue. He was not a main speaker, but he was featured in a breakout room opportunity that was filmed and is now available on the 2018 DVD set.

    Good luck,

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 128 9/4/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education.

     
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    Old 09-21-2020, 12:06 PM   #9
    hmcg7
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    Re: Urinary incontinence

    I'm all for cutting back on Kegel if it will help. Thank You.
    Tom

     
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    Old 09-22-2020, 03:43 AM   #10
    HighlanderCFH
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    Re: Urinary incontinence

    Quote:
    Originally Posted by hmcg7 View Post
    I'm all for cutting back on Kegel if it will help. Thank You.
    Tom
    You are welcome. Give the one set per day method a try for a couple weeks & see if you notice any difference.

     
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    Old 09-22-2020, 04:55 AM   #11
    DjinTonic
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    Re: Urinary incontinence

    Quote:
    Originally Posted by HighlanderCFH View Post
    I have a question about your Kegel exercises. How many of them do you do each day? While Mayo Clinic says that we should perform them for the rest of our lives, Mayo also suggests that only ONE set is needed per day.

    This would mean just one set of about 7 total reps. Too much of this exercise can actually weaken the muscle. I've had people -- on the other board -- who had problems, which pretty much were resolved after they cut down on the Kegels.

    I don't know if your answer might be this simple, but I sure hope it helps!

    Good luck,
    Chuck
    Hi Chuck. I hope all is going well for you and yours.

    I'm thinking your Mayo kegel instuctions may be out of data. On a current Mayo page I see

    "Repeat 3 times day. Aim for at least three sets of 10 repetitions a day."

    Djin
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    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk: 2.4%, 10-yr PCa-specific mortality: 3.3%
    uPSA: 0.010 (3 mo.)...0.013 (2 yr. 10 mo.)

     
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