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Thread: I sprung a leak during my final RT

  1. #1
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    I sprung a leak during my final RT

    Although very difficult, I'm going to be very honest about my last ART treatment on Friday morning as it may help others . . .

    I have been struggling with incontinence issues and had them mostly resolved before starting my Adjuvant Radiation Therapy (ART) treatments. I had to keep a close watch on my bladder fill volume and timing, which I quickly found out was necessary during my RT simulation -- very thankful for pelvic floor PT getting my kegels corrected which allowed me to manage that long pause after the CT scan while the images were being analyzed and also the extra time needed for getting the three little tattoos. I didn't leak during my simulation, but unfortunately, kegels can't always save you.

    Last Friday morning was my 37th of 37 RT treatments -- the final one! The day started out differently, since it was a day of rest in preparation for running in a prostate cancer charity 5K on Saturday. No running or other exercise that morning, and I even decided to walk the dog later in the day since I wanted to focus on getting some fundraising done in the early morning. Before I knew it, 10AM arrived which indicated that it was time for my final urination before slowly drinking not quite 16 ounces of cool water. Seemed like a good prep, since I hadn't consumed a nearly full water bottle like I usually do when exercising -- ADT hot flashes make the sweat pour off of me. Shortly after 11AM my wife came home from work and drove me to the cancer center at the hospital. While waiting for my treatment time, my bladder pinged me and I decided to do a partial void -- I had to do this once previously while waiting, and another time I notified the techs/therapists after the CT scan, but before radiation started, that I needed to service my screaming bladder (required starting the session over from the beginning with another CT scan). Bladder comfort returned, and I said goodbye and best wishes to my RT buddy as we passed in the hallway (he had about two more weeks of treatments left). Up onto the table and for the third time that week, I didn't need any positional adjustment. Eric Clapton was playing during the CT scan (for the mid-section of my appointments, I had listened to Eric Clapton's "Unplugged" as I commuted to and from the hospital). My bladder felt full as I was waiting for radiation to start -- some slow and easy belly breathing with very light kegels seemed to calm it down -- couldn't do anything aggressive that could possibly affect my positioning. The table's motors turned on which was the indication that radiation would shortly commence. Into the machine and suddenly the urgency hit and hit hard. This had been happening during the previous couple of weeks and my RO said that it was most likely due to urethral inflammation starting at the end of my RT treatments. She even had recommended another PT visit just to verify that my kegel technique hadn't faltered, and I had managed to squeeze in an appointment around the time that I still had seven treatments to go. My pelvic floor had a little extra tension, but my PT said that it could just be due to having the diagnostic finger in my rectum. Some kegel practice and assessment led to a slight tune-up to my technique and we scheduled an optional follow up appointment for early October. She said that the timing for my 5K run couldn't be worse, but that I should be able to manage it -- I still leak/drip when running due to the impacts or which may also be due to RT. Back to treatment. I'm in TOMO2 and radiation has commenced and now my bladder is really starting to scream at me. I must lie motionless -- no kegeling is possible. I try to relax, but how the heck do you tighten your urinary sphincter without moving and staying relaxed? Eventually, I felt a warm stream start from my crotch.

    I will finish this post later . . . .
    Last edited by farmanerd; 09-15-2019 at 02:57 PM.
    6/18 New PCP asks "When was your last PSA level checked?" --> 11.5 so off to URO
    9/18 PSA 12.4, TRUS biopsy 10/18 yields 2 of 12 positive: LA GS6 <5%, RA GS7(3+4) 5% and the 4 is cribriform approaching 50%
    Clinical staging T1c, Decipher biopsy 0.94, 58 years old at DX
    12/18 RARP, pathology GS7(4+3) with cribriform, tumors in 10-15% of gland
    -SVI, -LVI, +EPE, +PNI, +BNI, +SM multifocal >=3mm pattern 4
    pT3a,pNx (lymph nodes inaccessible due to large mesh placement from 15 year ago bilateral hernia repair
    4/19 second opinion of pathology GS8, primary tumor composed of >95% cribriform (4+4), <1% pattern 5 and very minor focus comedo-necrosis, intraductal and postive margin at bladder resection
    still at pT3a,pNx and started six months of ADT 4/19, ART completed 9/13/19
    PSA <0.1 on 1/19, 4/19, 7/19, 10/19

  2. #2
    While you are finishing the post later, I believe the techs deal with this all the time. The techs also advised me having a full bladder would become more difficult as the treatments progressed. I assumed that meant due to the effects of the radiation.

    One two occasions my bladder has been fuller than the simulation and I had leaks. I even warned the techs I was uncomfortably full prior.

    While a little embarrassing, no big deal.
    YOB 1957

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carcinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 03 (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)
    9/10/2019. <.02. (198 days)

    3 Part Modality Treatment

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  3. #3
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    . . . continuation . . .

    The flow of urine was on and off. I thought, just relax, stay calm, don't panic, last treatment, you can get through this, so just hold still, don't alter your position. I may have moved a tiny bit when I initially tensed at the first release. Eventually the sounds from the machine stopped and the motors turned on again, I started thinking about what I was going to say to the techs. One came in and she hit the key combo that would fully extract me from the machine and lower the table. I basically said that I had an accident and leaked during the treatment phase. She said very calmly and matter of factly, "Don't worry, it happens fairly often." I did the leg raise so that she could get the positioning form out from under my calves and then I sat up. I had a damp bottom, but how bad was it? The other tech came in and he said, "Congratulations! You're done!" As he shook my hand, with a tinge of embarrassment in my voice, I told him about my leakage. He just echoed the first tech's statement. I put on the second gown that functioned as a robe and covered my backside, and I was glad that I didn't feel any urine dripping down my leg. He said that I could 'ring' the wind chimes in the hallway if I wanted to on my way out, and I said no thanks, I'll just go and get changed. I went back to the waiting area and retrieved my pants from the locker without looking at my wife who was sitting in one of the chairs. She asked, "Mark, how did it go? You're done!" I just mumbled something like, "I'll tell you in a while." I went into the bathroom and was surprised that I still had to urinate. I cleaned up and put my pants on -- yes, I had to go commando since my boxers were quite damp, but not saturated (at least I could roll them up so that the dry part was on the outside when I carried them -- problem solving engineer attitude kicking in). I left the bathroom and my wife and I started walking out of Radiation Oncology. She repeated her question, "How did it go?". I said, "I leaked." She briefly put her arm around my waist and gave me a short hug, and then we held hands as we exited the cold building and entered the warmth of the day's sunshine.

    What I considered to be my last active treatment for prostate cancer was done -- the polymer lump with Eligard is already in my belly and just has to finish dissolving, so there are no procedures left for my ADT treatment. Monitoring through various tests is all that remains. I had weird, happy, yet anticlimactic feeling.

  4. #4
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    Quote Originally Posted by Duck2 View Post
    I believe the techs deal with this all the time.
    While a little embarrassing, no big deal.
    Duck2,

    Thank you for your comment and your honesty. Incontinence has been a bit of a struggle for me and I was worried that this could end up becoming a big emotional set-back, but the techs' comments, and yours, . . . (sorry, a bit of a pause for ADT tears) . . . made me realize that, while being "a little embarrassing", it really was no big deal. Thank you.

    Have you seen those decals on vehicles of Calvin (of Calvin and Hobbes) peeing on something? I think I've seen one of him peeing on the word "cancer". Maybe I've somewhat literally just done this.

  5. #5
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    Bummer ... but thanks for sharing as I am nearing my single digit countdown on my RT sessions. My last 14 RT sessions are "coned down" focusing on the prostate bed (fossa) and my RO said that my bowel movements will improve but my urination will probably be more frequent due to irritation/inflammation. For about the last couple weeks I have been pretty much dry only wearing a pad when I go in for my RT session, otherwise I do now wear a pad for the rest of the day or night. This last week I did forget to wear a pad and worried I would leak having a full bladder for my session ... I got lucky and did not leak. Again, appreciate you sharing to remind me not to forget putting in a pad.
    Age DX 63 dob 1955
    8/11/16 CT scan (blood/sand in urine). Prostate norm w/cent calcification.
    11/6/18 GP freq urine/retro ejact. PSA 7.1 (RX Proscar/Flomax)
    12/18 PSA 4.1 14.8% Free Proscar? MRI Lesion 1.6cm. Lymph nodes sim to 2016 CT, prostate norm size. Stage 3. PIRADS 4
    1/19 Biopsy 2/5/19 DX
    2/19 Bone/CT scans: No evid met chest/abd/pelvis
    3/2019 RALP Cath out/post-op path rpt week later:
    G9 (4+5) (65-70% + 15-20%)
    Dominant tumor: 4.3 cm apex to base, bilat.
    LNI+ (4 of 12 on R, largest 4mm, 1 of 8 on L, 9 mm)
    EPE+ (right lat., post. and L lat. aspects apex to base and at ant. mid aspect)
    Intaraductal component+, BNI-, SVI+, LVI+
    SM+ (carcinoma unifocally extends to ant. mid margin area of EPE (2mm)
    Prostate fat: neg. pT3b pN1
    5/2019 Casodex 2-weeks. uPSA 0.11
    5/24 uPSA 0.11 Lupron injection
    6/19 uPSA .02
    8/7 began 39 sessions RT 70.2 Gy
    8/23 uPSA .01 Lupron injection
    9/27 uPSA <0.01

  6. #6
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    Trex,

    Are your fiducials internal clips instead of external tattoos? For tattoos, the waistband of your underwear needs to be pushed down in order for the tattoos to be scanned, so not sure if a pad would stay in place.

  7. #7
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    Quote Originally Posted by farmanerd View Post
    Trex,

    Are your fiducials internal clips instead of external tattoos? For tattoos, the waistband of your underwear needs to be pushed down in order for the tattoos to be scanned, so not sure if a pad would stay in place.
    External tattoos. I had just gone downstairs to share you story with my wife, and when walking back upstairs I was thinking that same since I wear sweatpants and push the waistbands down ... then I thought since I have lots of the diapers leftover maybe I will just put them on instead of the underwear and pads, at least putting them to some good use.
    Age DX 63 dob 1955
    8/11/16 CT scan (blood/sand in urine). Prostate norm w/cent calcification.
    11/6/18 GP freq urine/retro ejact. PSA 7.1 (RX Proscar/Flomax)
    12/18 PSA 4.1 14.8% Free Proscar? MRI Lesion 1.6cm. Lymph nodes sim to 2016 CT, prostate norm size. Stage 3. PIRADS 4
    1/19 Biopsy 2/5/19 DX
    2/19 Bone/CT scans: No evid met chest/abd/pelvis
    3/2019 RALP Cath out/post-op path rpt week later:
    G9 (4+5) (65-70% + 15-20%)
    Dominant tumor: 4.3 cm apex to base, bilat.
    LNI+ (4 of 12 on R, largest 4mm, 1 of 8 on L, 9 mm)
    EPE+ (right lat., post. and L lat. aspects apex to base and at ant. mid aspect)
    Intaraductal component+, BNI-, SVI+, LVI+
    SM+ (carcinoma unifocally extends to ant. mid margin area of EPE (2mm)
    Prostate fat: neg. pT3b pN1
    5/2019 Casodex 2-weeks. uPSA 0.11
    5/24 uPSA 0.11 Lupron injection
    6/19 uPSA .02
    8/7 began 39 sessions RT 70.2 Gy
    8/23 uPSA .01 Lupron injection
    9/27 uPSA <0.01

  8. #8
    Experienced User
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    Posts
    67
    Quote Originally Posted by Trex Dino View Post
    ... then I thought since I have lots of the diapers leftover maybe I will just put them on instead of the underwear and pads, at least putting them to some good use.
    A couple of weeks ago, I was back to wearing shields for a while since I had started dripping a bit towards the end of the day and had one nearly palm sized wet spot once at work when I couldn't control the urinary urgency generated by washing my hands -- long untucked shirt covered it up. My kegel technique reassessment with my pelvic floor PT got me back out of them at the beginning of last week. I considered the shields a medical necessity, which stopped me from calling it a step backwards. Nothing even wrong with a step backwards, as long as we're working on getting more forwards.

    Our upcoming Seattle trip is mostly to a couple of lodges in Olympic National Park, with only the first night and the last night being in Seattle. My wife is a celiac and uses the app "Find Me Gluten Free" to evaluate restaurants that she/we can safely eat at.
    6/18 New PCP asks "When was your last PSA level checked?" --> 11.5 so off to URO
    9/18 PSA 12.4, TRUS biopsy 10/18 yields 2 of 12 positive: LA GS6 <5%, RA GS7(3+4) 5% and the 4 is cribriform approaching 50%
    Clinical staging T1c, Decipher biopsy 0.94, 58 years old at DX
    12/18 RARP, pathology GS7(4+3) with cribriform, tumors in 10-15% of gland
    -SVI, -LVI, +EPE, +PNI, +BNI, +SM multifocal >=3mm pattern 4
    pT3a,pNx (lymph nodes inaccessible due to large mesh placement from 15 year ago bilateral hernia repair
    4/19 second opinion of pathology GS8, primary tumor composed of >95% cribriform (4+4), <1% pattern 5 and very minor focus comedo-necrosis, intraductal and postive margin at bladder resection
    still at pT3a,pNx and started six months of ADT 4/19, ART completed 9/13/19
    PSA <0.1 on 1/19, 4/19, 7/19, 10/19

  9. #9
    Quote Originally Posted by farmanerd View Post
    Trex,

    Are your fiducials internal clips instead of external tattoos? For tattoos, the waistband of your underwear needs to be pushed down in order for the tattoos to be scanned, so not sure if a pad would stay in place.
    Underwear or sweat pants? You guys have the modest treatment. They have me change into a gown naked from waste down, sit on the table covered by a sheet bare checks, the ladies lift the bottom of the gown and place a towel over my pelvis.

    Maybe the towel is to help with leaks.
    YOB 1957

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carcinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 03 (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)
    9/10/2019. <.02. (198 days)

    3 Part Modality Treatment

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  10. #10
    If it helps, I know several nurses and they are so used to that kind of thing they don't give it another thought. I assure you they understand and that and never even gave it a second thought.

    Congrats on be done.

 

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