Question for those of you that finished External Radiation

npl8261
npl8261 Member Posts: 33
edited March 2014 in Uterine/Endometrial Cancer #1
On Wednesday I finished 5 weeks of External Radiation but have been dealing with an awful side effect and want to know if others had this happen as well. I woke up last Tuesday and went in for my early morning radiation but soon after it I started getting the symptoms of a UTI. On Wednesday for my last treatment I was put on medicine for a UTI but it doesn't seem to be working and now I wonder if it really isn't a UTI but more damage done to my bladder from the Radiation. Did any of you experience this and if so how soon did it go away?

On Monday I will call the doctor and see what he says but I would like to hear from anyone else that experienced this. I really hope this is a temporary side effect because it is very difficult to deal with. I have a constant feeling of needing to go the bathroom.
«1

Comments

  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #2
    bladder / urethra irritation from radiation
    Oh, hun, get yourself over to the drug store and get some of those pills for relief of the urgency and burn of a UTI. Each store even has their own house brand and the box will say "for relief of urinary urgency" or something like that. I think what they are is some sort of anesthetic that soothes things when you pee so you have to wait a bit of time and until you actually pee after taking the pills for real relief. So take them then drink a lot of water so you'll pee.

    I used them from time to time during my external radiation. But mostly, just drinking lots and lots of water seemed to keep a real UTI at bay. Even with lots of water, I still had a little irritation, pain almost when peeing, but my weekly urine tests never came up with a UTI.

    It has now been 2 weeks since my last external radiation treatment and I still have a little urinary irritation. In fact, just today I was peeing, felt it and thought to myself that I need to drink more water than I have been. At least my diarrhea is now gone! I've been told that the urinary irritation will go away in time.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #3
    Lisa 00 said:

    bladder / urethra irritation from radiation
    Oh, hun, get yourself over to the drug store and get some of those pills for relief of the urgency and burn of a UTI. Each store even has their own house brand and the box will say "for relief of urinary urgency" or something like that. I think what they are is some sort of anesthetic that soothes things when you pee so you have to wait a bit of time and until you actually pee after taking the pills for real relief. So take them then drink a lot of water so you'll pee.

    I used them from time to time during my external radiation. But mostly, just drinking lots and lots of water seemed to keep a real UTI at bay. Even with lots of water, I still had a little irritation, pain almost when peeing, but my weekly urine tests never came up with a UTI.

    It has now been 2 weeks since my last external radiation treatment and I still have a little urinary irritation. In fact, just today I was peeing, felt it and thought to myself that I need to drink more water than I have been. At least my diarrhea is now gone! I've been told that the urinary irritation will go away in time.

    I never had an urinary problems with external radistion.
    I had 28 rounds of IMRT external pelvic radiation (finished up July 1st) and never had any urinary problems. I did have diahrea throughout the weeks of radiation, but if I stayed on the low fiber diet, it was never bad enough to keep me home and I only took Immodium once or twice. I lost 7 pounds during external radiation, (more a reaction to my loss of my voracious chemo appetite than the diahrea) which I have since re-gained (BOO!) Prior to having cancer I also never had any kind of URI, so maybe I am just not prone to them. I religiously drank 64+ ounces of water every day throughout my treatments and drank a glass of cranberry juice each morning on my way to radiation. I think all of that helped. Sorry you are suffering with this. Did you have IMRT or convention extrenal radiation?
  • cleo
    cleo Member Posts: 144
    #4
    lindaprocopio said:

    I never had an urinary problems with external radistion.
    I had 28 rounds of IMRT external pelvic radiation (finished up July 1st) and never had any urinary problems. I did have diahrea throughout the weeks of radiation, but if I stayed on the low fiber diet, it was never bad enough to keep me home and I only took Immodium once or twice. I lost 7 pounds during external radiation, (more a reaction to my loss of my voracious chemo appetite than the diahrea) which I have since re-gained (BOO!) Prior to having cancer I also never had any kind of URI, so maybe I am just not prone to them. I religiously drank 64+ ounces of water every day throughout my treatments and drank a glass of cranberry juice each morning on my way to radiation. I think all of that helped. Sorry you are suffering with this. Did you have IMRT or convention extrenal radiation?

    Urinary problem
    I had 6 weeks of radio and had no problem directly after but find that I am susceptible since.
    I head straight to the Dr at first sign as it is too uncomfortable to leave. Instant relief.
    I also drink a lot of 50/50 cranberry/water in hot weather as I'm fine during the winter months!!
  • Deblittleton
    Deblittleton Member Posts: 56 Member
    #5
    cleo said:

    Urinary problem
    I had 6 weeks of radio and had no problem directly after but find that I am susceptible since.
    I head straight to the Dr at first sign as it is too uncomfortable to leave. Instant relief.
    I also drink a lot of 50/50 cranberry/water in hot weather as I'm fine during the winter months!!

    Congrats NPL
    Congrats NPL on finishing your last external radiation treatment. I had 5 wks of external radiation and no urinary problems. I did have diarrhea problems from the 3rd wk on and still do. (One wk post internal radiation.) Lomotil is my friend and take 1-2 tabs a day. Getting pretty sick of the low fiber diet thing and sometimes I eat what I want. I'm sure that doesn't help with the GI problems. One thing I have done since day one was drink lots and lots of water and cran-grape juice. Hope your symptoms go away soon.
  • howdybooth
    howdybooth Member Posts: 42
    #6
    Deblittleton said:

    Congrats NPL
    Congrats NPL on finishing your last external radiation treatment. I had 5 wks of external radiation and no urinary problems. I did have diarrhea problems from the 3rd wk on and still do. (One wk post internal radiation.) Lomotil is my friend and take 1-2 tabs a day. Getting pretty sick of the low fiber diet thing and sometimes I eat what I want. I'm sure that doesn't help with the GI problems. One thing I have done since day one was drink lots and lots of water and cran-grape juice. Hope your symptoms go away soon.

    Tofu
    Did any of you try or where allowed to eat tofu while on the low fiber diet during ext. radiation? My sister has some other complications (by pass surgery) that makes eating meat hard. I know tofu is made from soybeans but I read that the fiber content is very low.
  • npl8261
    npl8261 Member Posts: 33
    #7
    Deblittleton said:

    Congrats NPL
    Congrats NPL on finishing your last external radiation treatment. I had 5 wks of external radiation and no urinary problems. I did have diarrhea problems from the 3rd wk on and still do. (One wk post internal radiation.) Lomotil is my friend and take 1-2 tabs a day. Getting pretty sick of the low fiber diet thing and sometimes I eat what I want. I'm sure that doesn't help with the GI problems. One thing I have done since day one was drink lots and lots of water and cran-grape juice. Hope your symptoms go away soon.

    Thank you for all the responses
    Thank you again everyone for responding. I am now one week out of External Radiation and starting to feel normal again. The extreme fatique that I felt during radiation is gone and most of the other unpleasant side effects have either gone away or diminished greatly. I still have the urinary issue but I have been told that will pass soon as well.

    It really feels great to know that so much of my treatment is behind me. Next week I go in for Brachytherapy. I have started a regular acupuncture treatment once a week and will do that for at least 3 months for both dealing with the side effects of treatment and general maintenance.

    Again thank you to all for your suggestions. I find this discussion board just so helpful.
  • deanna14
    deanna14 Member Posts: 732
    #8
    npl8261 said:

    Thank you for all the responses
    Thank you again everyone for responding. I am now one week out of External Radiation and starting to feel normal again. The extreme fatique that I felt during radiation is gone and most of the other unpleasant side effects have either gone away or diminished greatly. I still have the urinary issue but I have been told that will pass soon as well.

    It really feels great to know that so much of my treatment is behind me. Next week I go in for Brachytherapy. I have started a regular acupuncture treatment once a week and will do that for at least 3 months for both dealing with the side effects of treatment and general maintenance.

    Again thank you to all for your suggestions. I find this discussion board just so helpful.

    Urinary Issues
    I had 5 weeks of external radiation and 3 weekly brachy internal radiation treatments. I have continually had urinary issues, bladder irritation, a couple of confirmed UTI's, urgency and yes sometime incontinence. I have to quit drinking liquids early in the evening... otherwise I go, I go, I go all night long, every couple of hours. Also, if I drink much in the evening, by the time I wake up, I can't stand up without urine leaking.
    The rad/onc says it is not anything caused by the radiation, it must be a side effect of your surgery. The gyn/onc says it is nothing he did when he did my hyst... "it must be decreased bladder capacity due caused by the radiation.
    I am coming up with ideas and practice of how to deal with this, as neither of these doctors want to own it and try to help me with it!
  • cleo
    cleo Member Posts: 144
    #9
    deanna14 said:

    Urinary Issues
    I had 5 weeks of external radiation and 3 weekly brachy internal radiation treatments. I have continually had urinary issues, bladder irritation, a couple of confirmed UTI's, urgency and yes sometime incontinence. I have to quit drinking liquids early in the evening... otherwise I go, I go, I go all night long, every couple of hours. Also, if I drink much in the evening, by the time I wake up, I can't stand up without urine leaking.
    The rad/onc says it is not anything caused by the radiation, it must be a side effect of your surgery. The gyn/onc says it is nothing he did when he did my hyst... "it must be decreased bladder capacity due caused by the radiation.
    I am coming up with ideas and practice of how to deal with this, as neither of these doctors want to own it and try to help me with it!

    Urinary issues
    Deanna - I had external radiation and as I also had a couple of tumours in the bladder was well blasted in that area. I have had no urinary repercussions from that [other than not being able to go through the night without a loo trip] apart from a couple of yearly cystitis episodes.
  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #10
    deanna14 said:

    Urinary Issues
    I had 5 weeks of external radiation and 3 weekly brachy internal radiation treatments. I have continually had urinary issues, bladder irritation, a couple of confirmed UTI's, urgency and yes sometime incontinence. I have to quit drinking liquids early in the evening... otherwise I go, I go, I go all night long, every couple of hours. Also, if I drink much in the evening, by the time I wake up, I can't stand up without urine leaking.
    The rad/onc says it is not anything caused by the radiation, it must be a side effect of your surgery. The gyn/onc says it is nothing he did when he did my hyst... "it must be decreased bladder capacity due caused by the radiation.
    I am coming up with ideas and practice of how to deal with this, as neither of these doctors want to own it and try to help me with it!

    urinary problems after all radiation is done
    Deanna,
    I was fine throughout all radiation treatments (5 weeks external, 2 times internal) and only developed a little bit of burning when peeing during radiation treatments. BUT

    About a week after the last internal radiation I developed what absolutely felt like a UTI. I have had experience with UTI's and was certain the test would come back positive but it didn't. So I stayed on the pyridine pills and waited. In all, I had the UTI, more intense burning and more often had to "go" for a little over 2 weeks.

    Along with this problem I too had some incontinence, mostly in the morning when my bladder was full when I woke up. Just a little dribble. But that also went away about the same time the UTI feeling did.

    I too feel my bladder capacity is smaller after the hysterectomy. I think it is the same as it was before the radiation through. I think that during the surgery the surgeon does some sort of procedure to help hold the bladder up so that it doesn't fall which has the side effect of constricting it some and making the capacity smaller. Not sure though.

    On your docs not owning it, the UTI feeling and the incontinence is definately the radiation guy's property in my opinion. The decreased bladder capacity is the surgeon's, again in my opinion.

    Hopefully someone has told you of the pyridine tablets that help with the burning. They're available at the drug store. I took them constantly for 2 weeks.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #11
    deanna14 said:

    Urinary Issues
    I had 5 weeks of external radiation and 3 weekly brachy internal radiation treatments. I have continually had urinary issues, bladder irritation, a couple of confirmed UTI's, urgency and yes sometime incontinence. I have to quit drinking liquids early in the evening... otherwise I go, I go, I go all night long, every couple of hours. Also, if I drink much in the evening, by the time I wake up, I can't stand up without urine leaking.
    The rad/onc says it is not anything caused by the radiation, it must be a side effect of your surgery. The gyn/onc says it is nothing he did when he did my hyst... "it must be decreased bladder capacity due caused by the radiation.
    I am coming up with ideas and practice of how to deal with this, as neither of these doctors want to own it and try to help me with it!

    Deanna sorry about your urinary problems
    Sorry to hear you are still having problems with urination. When I go to the radiation onocologist he always asks if I have any bowel or urinary problems. Luckily I do not. So I would think that urinary problems can happen after radiation. Have you tried doing the Kegel exercises that Marie mentioned a couple of weeks ago? It would probably help with the dribbling. Hope this problem gets better for you.

    Did your second biopsy results turn out okay? It is good to hear from you again and see your beautiful smile. How is the hair situation? In peace and caring.
  • lociee
    lociee Member Posts: 102
    #12
    Ro10 said:

    Deanna sorry about your urinary problems
    Sorry to hear you are still having problems with urination. When I go to the radiation onocologist he always asks if I have any bowel or urinary problems. Luckily I do not. So I would think that urinary problems can happen after radiation. Have you tried doing the Kegel exercises that Marie mentioned a couple of weeks ago? It would probably help with the dribbling. Hope this problem gets better for you.

    Did your second biopsy results turn out okay? It is good to hear from you again and see your beautiful smile. How is the hair situation? In peace and caring.

    radiation woos response
    In response to radiation/urination woos. I had 25 external - and 8 blasts to a tumor. I went in not really aware of the long term effects. Treatments were over at the end of May. Now I have extreme pain in my right hip and down my right leg. I'm getting an MRI on Friday to see if I have bone fractures. I hobble around! My stomach NEVER stops gurgling and
    screeching. When I need to go - I need to go FAST - so I can't go anywhere that does not have toilet access. I probably urinate 50 times a day. It turns out that radiation isn't just radiation. I thought that 25 times was the usual. I did not know about the various strengths. For instance I found out later that I was given a high dosage because I had an existing tumor. I would have chosen the low dosage because I'm not willing to go for a cure that causes too many side effects. Now I'm scared of the future. I have visions of myself using a WALKER! I already knew that the cancer could not be cured - but please let me - go gently into this goodnight!
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    #13
    lociee said:

    radiation woos response
    In response to radiation/urination woos. I had 25 external - and 8 blasts to a tumor. I went in not really aware of the long term effects. Treatments were over at the end of May. Now I have extreme pain in my right hip and down my right leg. I'm getting an MRI on Friday to see if I have bone fractures. I hobble around! My stomach NEVER stops gurgling and
    screeching. When I need to go - I need to go FAST - so I can't go anywhere that does not have toilet access. I probably urinate 50 times a day. It turns out that radiation isn't just radiation. I thought that 25 times was the usual. I did not know about the various strengths. For instance I found out later that I was given a high dosage because I had an existing tumor. I would have chosen the low dosage because I'm not willing to go for a cure that causes too many side effects. Now I'm scared of the future. I have visions of myself using a WALKER! I already knew that the cancer could not be cured - but please let me - go gently into this goodnight!

    Pain in right hip and right leg
    I also have pain in my right leg and hip. Had radiation and chemo, finished treatments june 25, 2009. This pain started around Sept 1. I can barely lift my right leg to get my pants on,when I get out of bed I have to shuffle to the bathroom and usually don't get there without peeing all over myself. I'am taking Hydroco/with Ibufrofin 2 to 3 times aday, my family doctor thinks I have a herniated disc... i think it's from the treatments. he wanted me to get an MRI,I won't be doing that till Jan 2010 as I've used up most of my $50,000.00 insurance for this year. I see my gyno/onc Monday for my 3 month check-up.. needless to say , I'am very nervous.
    It was nice to hear from you all... Teresa
  • kellyw314
    kellyw314 Member Posts: 51
    #14
    Teresa 61 said:

    Pain in right hip and right leg
    I also have pain in my right leg and hip. Had radiation and chemo, finished treatments june 25, 2009. This pain started around Sept 1. I can barely lift my right leg to get my pants on,when I get out of bed I have to shuffle to the bathroom and usually don't get there without peeing all over myself. I'am taking Hydroco/with Ibufrofin 2 to 3 times aday, my family doctor thinks I have a herniated disc... i think it's from the treatments. he wanted me to get an MRI,I won't be doing that till Jan 2010 as I've used up most of my $50,000.00 insurance for this year. I see my gyno/onc Monday for my 3 month check-up.. needless to say , I'am very nervous.
    It was nice to hear from you all... Teresa

    I too had 27 external
    I too had 27 external treatments 3 years ago - about 8 months after treatment, I awoke with extreme pain in my lower right back - following weeks of pain with little relief, I had an MRI - I had a fractured right sacrum which did heal in about 10 weeks - I still have pain after standing or walking for a longer time, but can recover quickly by sitting down - analysis: sacrum was weakened by radiation and there is no way to protect this bone if having pelvic radiation = good news: I am cancer free 3.5 years from surgery - never suffered urinary issues, but some bowel issues which improved in the first year following treatment
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #15
    Teresa 61 said:

    Pain in right hip and right leg
    I also have pain in my right leg and hip. Had radiation and chemo, finished treatments june 25, 2009. This pain started around Sept 1. I can barely lift my right leg to get my pants on,when I get out of bed I have to shuffle to the bathroom and usually don't get there without peeing all over myself. I'am taking Hydroco/with Ibufrofin 2 to 3 times aday, my family doctor thinks I have a herniated disc... i think it's from the treatments. he wanted me to get an MRI,I won't be doing that till Jan 2010 as I've used up most of my $50,000.00 insurance for this year. I see my gyno/onc Monday for my 3 month check-up.. needless to say , I'am very nervous.
    It was nice to hear from you all... Teresa

    Teresa it was good to hear from you
    Teresa I am sorry you are having such leg and hip pain. I think about you often, as we had the same sandwich treatment and you started your treatment just a little ahead of me. Hope your pain gets better, as does your urinary frequency. Good luck with your three month check-up. I pray that everything will go well for you. What are they doing for the check-up. I will have lab work next week, two months after my last chemo. Then in another month will have a CT scan. I can't believe you have only used $50,000 dollars for treatments. Mine is close to $200,000 what was charged and $100,000 that was paid. We have a deductible of $10,000, so I am glad insurance pays 100% after our deductible is met. It is unreal what the facilities charge. In peace and caring.
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    #16
    Ro10 said:

    Teresa it was good to hear from you
    Teresa I am sorry you are having such leg and hip pain. I think about you often, as we had the same sandwich treatment and you started your treatment just a little ahead of me. Hope your pain gets better, as does your urinary frequency. Good luck with your three month check-up. I pray that everything will go well for you. What are they doing for the check-up. I will have lab work next week, two months after my last chemo. Then in another month will have a CT scan. I can't believe you have only used $50,000 dollars for treatments. Mine is close to $200,000 what was charged and $100,000 that was paid. We have a deductible of $10,000, so I am glad insurance pays 100% after our deductible is met. It is unreal what the facilities charge. In peace and caring.

    $50,000
    $50,000 a year is all my insurance will pay....between dec 2008 and now they have paid $100,000. the rest is on me paying and the hospital giving me some discounts. I don't have urinary freguency, I can't walk very well because of my leg pain so it's difficult for me to make it to the bathroom in time..I'am not sure what tests my gyno/onc will do. Pretty sure it's just a vaginal and a blood test. Good luck with your labs.. Teresa
  • lociee
    lociee Member Posts: 102
    #17
    Teresa 61 said:

    $50,000
    $50,000 a year is all my insurance will pay....between dec 2008 and now they have paid $100,000. the rest is on me paying and the hospital giving me some discounts. I don't have urinary freguency, I can't walk very well because of my leg pain so it's difficult for me to make it to the bathroom in time..I'am not sure what tests my gyno/onc will do. Pretty sure it's just a vaginal and a blood test. Good luck with your labs.. Teresa

    right pain
    Hi Teresa, it seems like we have the same reaction to radiation. I had an MRI a few months ago when I first started complaining of the pain - they then told me it was my back and not radiation. However, the problems with my back were the same as shown in a previous MRI - before radiation. This pain is different. I struggle to put on my right sock because my right leg has limited mobility. Also - it gets worse at night - it wakes me up. Does that happen to you??
    I had a pelvic MRI on Friday - have a doc appointment on Thursday of the coming week. So most likely will not get results until then. I do have a feeling that they like to sort of - blame the back! Sometimes I feel like my right leg is going to disintegrate at the top where it's joined to the hip - it's so weak there. Do you get that feeling, too? I am lucky that nobody ever mentions $. My health plan does not seem to have put any restrictions on me. It could be that they feel guilty that they miss diagnosed for two years and am afraid I'll sue.
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    #18
    lociee said:

    right pain
    Hi Teresa, it seems like we have the same reaction to radiation. I had an MRI a few months ago when I first started complaining of the pain - they then told me it was my back and not radiation. However, the problems with my back were the same as shown in a previous MRI - before radiation. This pain is different. I struggle to put on my right sock because my right leg has limited mobility. Also - it gets worse at night - it wakes me up. Does that happen to you??
    I had a pelvic MRI on Friday - have a doc appointment on Thursday of the coming week. So most likely will not get results until then. I do have a feeling that they like to sort of - blame the back! Sometimes I feel like my right leg is going to disintegrate at the top where it's joined to the hip - it's so weak there. Do you get that feeling, too? I am lucky that nobody ever mentions $. My health plan does not seem to have put any restrictions on me. It could be that they feel guilty that they miss diagnosed for two years and am afraid I'll sue.

    right pain
    Hi Lociee, it does sound like we have the same pain. Yes, the pain wakes me up at night, at about 1:30 am. I have to sit down to put my right sock on and have to hold on to something to get my right leg up enough to get my pants on. I get in the car butt first put my left leg in then have to lift my right leg with both hands to get it in the car.From my knee up I have a numb achy feeling, even with pain pills the pain in my leg lower back and hip does not go completely away. Here's hoping we get relief from this soon.... Teresa
  • kkstef
    kkstef Member Posts: 688 Member
    #19
    deanna14 said:

    Urinary Issues
    I had 5 weeks of external radiation and 3 weekly brachy internal radiation treatments. I have continually had urinary issues, bladder irritation, a couple of confirmed UTI's, urgency and yes sometime incontinence. I have to quit drinking liquids early in the evening... otherwise I go, I go, I go all night long, every couple of hours. Also, if I drink much in the evening, by the time I wake up, I can't stand up without urine leaking.
    The rad/onc says it is not anything caused by the radiation, it must be a side effect of your surgery. The gyn/onc says it is nothing he did when he did my hyst... "it must be decreased bladder capacity due caused by the radiation.
    I am coming up with ideas and practice of how to deal with this, as neither of these doctors want to own it and try to help me with it!

    Urinary issues confirmed
    Deanna.....I know what you are experiencing. I had 30 external radiation and I continue to have urinary urgency. If my bladder is full I sometimes have some incontinence as well...I NEVER had that problem before. I don't have the frequency issue you do. I have associated it with the radiation as I did not have that problem right after the surgery. I was told it would get better....but I finished radiation a year ago!!!

    So far, I am still waiting!!!

    Karen
  • lociee
    lociee Member Posts: 102
    #20
    Teresa 61 said:

    right pain
    Hi Lociee, it does sound like we have the same pain. Yes, the pain wakes me up at night, at about 1:30 am. I have to sit down to put my right sock on and have to hold on to something to get my right leg up enough to get my pants on. I get in the car butt first put my left leg in then have to lift my right leg with both hands to get it in the car.From my knee up I have a numb achy feeling, even with pain pills the pain in my leg lower back and hip does not go completely away. Here's hoping we get relief from this soon.... Teresa

    leg pain
    Hi Teresa - it is the same! I also have to lift my right leg - and pain killers have almost no effect. I will definitely let you know the results of my MRI. Hopefully all will be revealed on Thursday when I meet with my oncologist - who, by the way, is my chemo doctor. The radiologist continues to insist that the pain is NOT from radiation.
  • Teresa 61
    Teresa 61 Member Posts: 84 Member
    #21
    lociee said:

    leg pain
    Hi Teresa - it is the same! I also have to lift my right leg - and pain killers have almost no effect. I will definitely let you know the results of my MRI. Hopefully all will be revealed on Thursday when I meet with my oncologist - who, by the way, is my chemo doctor. The radiologist continues to insist that the pain is NOT from radiation.

    Leg Pain
    Hi Lociee, I have an appointment tomorrow with my gyno/onc and I'am going to let her know you have the same pain as me....thank you ahead of time for posting your MRI results.
    Take Care, Teresa

Discussion Boards