radiation systitus

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vinyl4ever
vinyl4ever Member Posts: 6
edited March 2014 in Prostate Cancer #1
in case u don't know what it is (?) it's massive amounts of blood coming out of ur bladder & horrendous bladder contractions.
if anyone has had it, i would appreciate ANY feedback. i have discussed w/Urologist & Oncologist, so i am somewhat educated about it. BUT, that doesn't make it any easier to deal with.
aside from the obvious pain & discomfort, perhaps the most frustrating aspect is that it happens "out of the blue"... i have had zero indications that an episode was coming my way!
this is all new to me & there are a multitude of other emotions & questions that i won't bore u with right now.

don't want to lose my audience (LOL)

help, anyone?

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
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    Question
    Vinyl, when did you have radiation treatment that affected your bladder and what type of radiation did you receive. Was this a treatment for prostate cancer?
  • vinyl4ever
    vinyl4ever Member Posts: 6
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    Kongo said:

    Question
    Vinyl, when did you have radiation treatment that affected your bladder and what type of radiation did you receive. Was this a treatment for prostate cancer?

    Kongo, it was external beam
    Kongo, it was external beam radiation treatment for prostate cancer. treatments were in latter part of 07.
    according to my Dr's, this is a side affect from the radiation and can happen to any one, any time after treatment...swell!

    ???
  • bdhilton
    bdhilton Member Posts: 857 Member
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    vinyl4ever,Sorry to hear
    vinyl4ever,

    Sorry to hear about your post radiation treatment complications. I had surgery but the hammer could drop anytime and I would have a form of radiation as a second line of defense as many of us here so this subject is of great interest to me…

    Below is a copy and paste from a site but lots of information is out there and it does not seem to be “rare” as a side effect down the road after treatment… The best to you in your healing and recovery-God Bless

    Frequency
    The reported frequency of radiation cystitis varies because of difficulties in data collection (usually performed as a questionnaire), differences in dosimetry and field size used, and the fact that various tumors are treated with different fields and include varying amounts of bladder exposure.

    Frequency of radiation cystitis (>1 y posttreatment) based on common tumor sites (any symptom) is as follows:

    Prostate - Overall, 9%-21%; reported mean, 14.2%
    Three- to 4-box small-field therapy (66 Gy)

    Grades 1 and 2 (Radiation Therapy Oncology Group [RTOG]/European Organization for Research and Treatment of Cancer [EORTC] scoring) - 24%-64%
    Grades 3 and 4 - 2%-9%
    Conformal beam therapy (70-78 Gy)
    Grades 1 and 2 - 65%
    Grades 3 and 4 - 9%
  • vinyl4ever
    vinyl4ever Member Posts: 6
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    bdhilton said:

    vinyl4ever,Sorry to hear
    vinyl4ever,

    Sorry to hear about your post radiation treatment complications. I had surgery but the hammer could drop anytime and I would have a form of radiation as a second line of defense as many of us here so this subject is of great interest to me…

    Below is a copy and paste from a site but lots of information is out there and it does not seem to be “rare” as a side effect down the road after treatment… The best to you in your healing and recovery-God Bless

    Frequency
    The reported frequency of radiation cystitis varies because of difficulties in data collection (usually performed as a questionnaire), differences in dosimetry and field size used, and the fact that various tumors are treated with different fields and include varying amounts of bladder exposure.

    Frequency of radiation cystitis (>1 y posttreatment) based on common tumor sites (any symptom) is as follows:

    Prostate - Overall, 9%-21%; reported mean, 14.2%
    Three- to 4-box small-field therapy (66 Gy)

    Grades 1 and 2 (Radiation Therapy Oncology Group [RTOG]/European Organization for Research and Treatment of Cancer [EORTC] scoring) - 24%-64%
    Grades 3 and 4 - 2%-9%
    Conformal beam therapy (70-78 Gy)
    Grades 1 and 2 - 65%
    Grades 3 and 4 - 9%

    thx BD, yeah i've seen this
    thx BD, yeah i've seen this & frankly it doesn't tell me anything useful. i don't do well w/doctor "speak" to begin with, so mostly i don't know what in the world they said (LOL)

    i suppose that says that 14.2% of us will have it... great, but i already got it!
    now what? supposedly, it can't be "fixed", they don't know how to stop it from occuring, they don't know with what frequency it will occur?
    they know "what" causes it but, they don't know the why.

    they also are clueless as to what triggers it. it just comes out of the blue & all of a sudden ur peeing massive amounts of blood.

    i am still seeing my Dr's to try & get a handle on this "new development" in my life, because praying for yellow every time i have to pee just doesn't get it!

    hopefully someone in our group has had this predicament & can shed some light on it for me.

    thx for ur help & good luck to you
  • Beau2
    Beau2 Member Posts: 261
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    thx BD, yeah i've seen this
    thx BD, yeah i've seen this & frankly it doesn't tell me anything useful. i don't do well w/doctor "speak" to begin with, so mostly i don't know what in the world they said (LOL)

    i suppose that says that 14.2% of us will have it... great, but i already got it!
    now what? supposedly, it can't be "fixed", they don't know how to stop it from occuring, they don't know with what frequency it will occur?
    they know "what" causes it but, they don't know the why.

    they also are clueless as to what triggers it. it just comes out of the blue & all of a sudden ur peeing massive amounts of blood.

    i am still seeing my Dr's to try & get a handle on this "new development" in my life, because praying for yellow every time i have to pee just doesn't get it!

    hopefully someone in our group has had this predicament & can shed some light on it for me.

    thx for ur help & good luck to you

    Hyperberic Oxygen Therapy
    I have not had radiation therapy.

    I talked to a guy who had brachy and had what seemed like the same problem. He indicated he had hyperberic oxygen therapy, and recovered. I just googled it and it does appear as a treatment option. Sorry I do not know more than what I found on the google search.
  • bdhilton
    bdhilton Member Posts: 857 Member
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    thx BD, yeah i've seen this
    thx BD, yeah i've seen this & frankly it doesn't tell me anything useful. i don't do well w/doctor "speak" to begin with, so mostly i don't know what in the world they said (LOL)

    i suppose that says that 14.2% of us will have it... great, but i already got it!
    now what? supposedly, it can't be "fixed", they don't know how to stop it from occuring, they don't know with what frequency it will occur?
    they know "what" causes it but, they don't know the why.

    they also are clueless as to what triggers it. it just comes out of the blue & all of a sudden ur peeing massive amounts of blood.

    i am still seeing my Dr's to try & get a handle on this "new development" in my life, because praying for yellow every time i have to pee just doesn't get it!

    hopefully someone in our group has had this predicament & can shed some light on it for me.

    thx for ur help & good luck to you

    I found that emedicine
    I found that emedicine http://emedicine.medscape.com/article/442319-treatment has a section on "treatments" for this in case you have not found that link. Hopefully (as bad as that sounds) perhaps someone here can post a personal experience that they have had...

    Best to you
  • Trew
    Trew Member Posts: 932 Member
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    Kongo, it was external beam
    Kongo, it was external beam radiation treatment for prostate cancer. treatments were in latter part of 07.
    according to my Dr's, this is a side affect from the radiation and can happen to any one, any time after treatment...swell!

    ???

    Vinly, I am having a lot of
    Vinly, I am having a lot of problem with strictures in my urethra from external radiation- doesn't happen to everyone, but I was chosen. Different than your case, but similar in that "it happens." And I have been having a lot of medical appointments trying to fix the problem. Consider yourself special. Some guys seem to be fixed with surgery or proton treatment, and then they are on their way. Some of us get extra stuff. I look at it as a bonus.
  • vinyl4ever
    vinyl4ever Member Posts: 6
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    bdhilton said:

    I found that emedicine
    I found that emedicine http://emedicine.medscape.com/article/442319-treatment has a section on "treatments" for this in case you have not found that link. Hopefully (as bad as that sounds) perhaps someone here can post a personal experience that they have had...

    Best to you

    BD, excellant data, THX for
    BD, excellant data, THX for the research. i will bring this website to my Dr. on next visit.

    as always, it seems we have a multitude of DRUGS available for any malady (LOL)

    onward & upward,
    thanks again
  • vinyl4ever
    vinyl4ever Member Posts: 6
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    Beau2 said:

    Hyperberic Oxygen Therapy
    I have not had radiation therapy.

    I talked to a guy who had brachy and had what seemed like the same problem. He indicated he had hyperberic oxygen therapy, and recovered. I just googled it and it does appear as a treatment option. Sorry I do not know more than what I found on the google search.

    beau2, yes HBO is a
    beau2, yes HBO is a treatment option & appears to have a very high success rate. it's on my list for discussion w/my Dr's at next visit.

    thanks for your input, i can use all i can get right now
    stay well
  • Beau2
    Beau2 Member Posts: 261
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    HBO
    Vinyl,

    I was just reading the Healingwell forum (healingwell.com)and under the thread "Radiotherapy saves millions from cancer but can inflict cruel damage, now, at last, there may be...." a poster named "Hopeful in MD" posted that he had good luck with HBO after his 2008 brachytherapy left him with bleeding from the rectum. Maybe you could jump on the thread and ask him specifics?
  • Bill91101
    Bill91101 Member Posts: 81 Member
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    Hi V4E:
    I had IMRT for PC

    Hi V4E:

    I had IMRT for PC last year. Did 40 days, once a day, with a larger than normal dose (since the cancer had spread to a lymph node).

    I was at Stage 3 with a PSA of 89 and a Gleason score of 3+4.

    Last July I started getting blood in my urine. Went to the urologist. He did a CT urogram.

    Of course it took a week to get complete results- he called me at work and said mine were excellent- no problem with bladder, anything.

    I was talking aspirin on a regular basis for blood pressure reduction and my bad knees. I also was drinking tomato juice and the glass of red wine. I cut out the aspirin, tomato juice and red wine for a week and the bleeding stopped. I now take a small coated aspirin every other day or so. My thought is that my urethra was irritated by the radiation, and that the aspirin was causing the irritated urethra to bleed.

    No return of the bleeding. I still avoid tomato juice and red wine- not sure they contributed, but I hate praying for yellow when I pee!

    I'm also getting hormone treatment- halfway through a three year ordeal. Had Degarelix for 9 months, switched to Vantas implant since.

    PSA was 0.2 last Friday- keeps going down.

    Saw the radiation doc last Friday- he said I'm doing pretty good.

    Whew.

    Hope this sheds some light on your problem!
  • ezra99
    ezra99 Member Posts: 18
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    Bill91101 said:

    Hi V4E:
    I had IMRT for PC

    Hi V4E:

    I had IMRT for PC last year. Did 40 days, once a day, with a larger than normal dose (since the cancer had spread to a lymph node).

    I was at Stage 3 with a PSA of 89 and a Gleason score of 3+4.

    Last July I started getting blood in my urine. Went to the urologist. He did a CT urogram.

    Of course it took a week to get complete results- he called me at work and said mine were excellent- no problem with bladder, anything.

    I was talking aspirin on a regular basis for blood pressure reduction and my bad knees. I also was drinking tomato juice and the glass of red wine. I cut out the aspirin, tomato juice and red wine for a week and the bleeding stopped. I now take a small coated aspirin every other day or so. My thought is that my urethra was irritated by the radiation, and that the aspirin was causing the irritated urethra to bleed.

    No return of the bleeding. I still avoid tomato juice and red wine- not sure they contributed, but I hate praying for yellow when I pee!

    I'm also getting hormone treatment- halfway through a three year ordeal. Had Degarelix for 9 months, switched to Vantas implant since.

    PSA was 0.2 last Friday- keeps going down.

    Saw the radiation doc last Friday- he said I'm doing pretty good.

    Whew.

    Hope this sheds some light on your problem!

    Blood in urine
    Hi,

    You might want to look up "Telangiectasias". It's a possible reason for having blood in your urine after IMRT. I'm half way through IMRT. My rad oncologist said that this could be a side effect. He said in the future if any MD wanted to "work me up" for blood in my urine I should remind them of this as a possible reason. He said otherwise if they did a cysto on me they would probably most likely just find this. I'd never heard or read about it before. Sounds like it can occur anytime after IMRT.