Possible late side effects of pelvic radiation

motahal
motahal Member Posts: 24
in Uterine/Endometrial Cancer #1
Hi! I finished 5 weeks of pelvic radition in May 2002. Has anyone suffered from bowel/bladder problems 10+ years later? I have been having bowel problems for a while now. Urgency and painful pressure, then feeling like I've finished only to discover I have not. I have also suffered from constant UTI's. Then 2 1/2 years ago, the Urologist dilated my urethra and no problems until last month! Today I began the my second UTI within a month! Just wondering if this is common aomong those who had pelvic radiation. I also had a 24-hr. brachytherapy treatment in 2002 as well.

Thanks in advance for any advice you gan give me!

Mary

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Hi Mary
    I have read that while the issues you seem to have can be late side effects (yes even at 10 yrs) it is unusual.

    Have you had a recent colonoscopy? If not, it might be a good idea.

    The literature says these things are possible, but that one should not assume they are caused by the pelvic radiation. Always best to get it checked out as a new issue.

    Marie who loves kitties
  • jazzy1
    jazzy1 Member Posts: 1,379
    #3
    Mary
    I as well endured 33 sessions of external pelvic radiation, which was completed July '09. Today I have what I'd call bowel problems such as issues when eating too much roughage. I love my fresh/raw fruits and veggies but can get carried away and then have an episode of cramping for a day or so, then getting the bowel movements back to normal a few more days. Guessing I endure this approx every 3 months, and in most cases due to higher intake of roughage.

    Bladder urgency? I do have that as was told via my surgeon who did my total hysterectomy, they generally shorten the urethra which gives us less storage for urine. I might get up 4 times at nite to relieve myself. Used to it by now as nothing painful about it.

    Have done some research and yes long term side affects from radiation show some bowel and stomach issues, plus other things which don't affect me. Most docs aren't admitting these side affects are caused from radiation, but if we ask others in our situation, they are very real!!!

    Agree with other poster, have you had a colonoscopy in last few years? If not, might be a good time to rule out anything else such as diverticulitis. I had one (found nothing) right after treatments and have next one in 2 years.

    Didn't read your profile, but assuming you're a uterine cancer survivor???

    Wish you the best,
    Jan
  • cheerful
    cheerful Member Posts: 261 Member
    #4
    jazzy1 said:

    Mary
    I as well endured 33 sessions of external pelvic radiation, which was completed July '09. Today I have what I'd call bowel problems such as issues when eating too much roughage. I love my fresh/raw fruits and veggies but can get carried away and then have an episode of cramping for a day or so, then getting the bowel movements back to normal a few more days. Guessing I endure this approx every 3 months, and in most cases due to higher intake of roughage.

    Bladder urgency? I do have that as was told via my surgeon who did my total hysterectomy, they generally shorten the urethra which gives us less storage for urine. I might get up 4 times at nite to relieve myself. Used to it by now as nothing painful about it.

    Have done some research and yes long term side affects from radiation show some bowel and stomach issues, plus other things which don't affect me. Most docs aren't admitting these side affects are caused from radiation, but if we ask others in our situation, they are very real!!!

    Agree with other poster, have you had a colonoscopy in last few years? If not, might be a good time to rule out anything else such as diverticulitis. I had one (found nothing) right after treatments and have next one in 2 years.

    Didn't read your profile, but assuming you're a uterine cancer survivor???

    Wish you the best,
    Jan

    Hi Jazzy:

    I wanted to respond to your post. I have seen your posts on this board and you give very helpful and informative information.

    I was diagnosed in Feb. of 2011 with UPSC (Stage 1) and had a hysterectomy. I then went through chemo (6) rounds and (3) rounds of radiation.

    I did not realize about the bladder urgency and that the surgeon would shorten it during a hysterectomy. I never asked my surgeon about it and never thought to. I generally have to go to the bathroom as soon as I get up in the morning and then have to go again about 2 hours later (after I eat breakfast). Then I am okay for a few hours after I have lunch and go again before I go to turn in for the night.

    Anyway, thanks for this information regarding the bladder.

    Also, I have had diverticulitis for 10 years that was found through my first colonoscopy. I had a colonoscopy done in March and my gyn/oncologist wanted me to have it done since I had been diagnosed with UPSC although I did have chemo and radiation. Thankfully with the colonoscopy everything looked good so that was a relief.

    My gastro doctor wants me to have another colonoscopy done in 5 years since I do have diverticulitis plus I have gastric reflux and I take a Zantac for it every day in the morning.

    Hope you have a nice holiday season.

    Cheerful
  • jazzy1
    jazzy1 Member Posts: 1,379
    #5
    cheerful said:

    Hi Jazzy:

    I wanted to respond to your post. I have seen your posts on this board and you give very helpful and informative information.

    I was diagnosed in Feb. of 2011 with UPSC (Stage 1) and had a hysterectomy. I then went through chemo (6) rounds and (3) rounds of radiation.

    I did not realize about the bladder urgency and that the surgeon would shorten it during a hysterectomy. I never asked my surgeon about it and never thought to. I generally have to go to the bathroom as soon as I get up in the morning and then have to go again about 2 hours later (after I eat breakfast). Then I am okay for a few hours after I have lunch and go again before I go to turn in for the night.

    Anyway, thanks for this information regarding the bladder.

    Also, I have had diverticulitis for 10 years that was found through my first colonoscopy. I had a colonoscopy done in March and my gyn/oncologist wanted me to have it done since I had been diagnosed with UPSC although I did have chemo and radiation. Thankfully with the colonoscopy everything looked good so that was a relief.

    My gastro doctor wants me to have another colonoscopy done in 5 years since I do have diverticulitis plus I have gastric reflux and I take a Zantac for it every day in the morning.

    Hope you have a nice holiday season.

    Cheerful

    Cheerful
    Sorry to read about the diverticulitis...that's painful in itself. Have a friend with it and if he doesn't watch what he eats, he'll be in the bathroom for hours. Thinking this might be part of your issues, especially if you dont' eat a very defined diet.

    I'm not sure if they normally shorten the urethra, but that's what my OB told me. Seeing I'm small stature, possibly God created mine at the start smaller and by the time surgery hit, it's really small. Whow knows, but I just am used to venturing to the bathroom more often vs. the normal person.

    My diagnosis is MMMT which is as aggressive as UPSC, but I'm stage 3C. As mentioned, mine had spread to 1 pelvic lymph node, so had to really hit me hard with treatments.

    HAPPY HOLIDAYS TO YOU AND YOUR FAMILY!!
    Jan
  • runwithloki
    runwithloki Member Posts: 16
    #6
    jazzy1 said:

    Mary
    I as well endured 33 sessions of external pelvic radiation, which was completed July '09. Today I have what I'd call bowel problems such as issues when eating too much roughage. I love my fresh/raw fruits and veggies but can get carried away and then have an episode of cramping for a day or so, then getting the bowel movements back to normal a few more days. Guessing I endure this approx every 3 months, and in most cases due to higher intake of roughage.

    Bladder urgency? I do have that as was told via my surgeon who did my total hysterectomy, they generally shorten the urethra which gives us less storage for urine. I might get up 4 times at nite to relieve myself. Used to it by now as nothing painful about it.

    Have done some research and yes long term side affects from radiation show some bowel and stomach issues, plus other things which don't affect me. Most docs aren't admitting these side affects are caused from radiation, but if we ask others in our situation, they are very real!!!

    Agree with other poster, have you had a colonoscopy in last few years? If not, might be a good time to rule out anything else such as diverticulitis. I had one (found nothing) right after treatments and have next one in 2 years.

    Didn't read your profile, but assuming you're a uterine cancer survivor???

    Wish you the best,
    Jan

    Radiation side effects?

    Hi Jan,

    I've been trying to get more info about radiation side effects for my mom and I noticed you have posted a lot of helpful comments. I'm wondering if I could pick your brain a bit about some of her current issues. She was diagnosed with stage 3c uterine cancer last Jan and has since gone through chemo and 28 radiation sessions (completed right before Thanksgiving). She felt awful the whole time during radiation, worse towards the end and for a couple of weeks afterward, but then had a couple of pretty good weeks, when she was eating fairly normally. This past week has just been awful for her - non-stop diarrhea, low energy, no appetite, food intake limited to small amounts of applesauce, crackers, rice, etc. She went to urgent care twice in the last 5 days and both times they rehydrated her with an IV and did some tests, all of which came back negative (ie, no bacterial infection that they can determine). They also indicated, though, that she essentially has no gut flora, presumably all killed off by the radiation. A few days ago, she started getting a semi-persistent pain in her side; the doctors thought at first it might indicate a kidney stone, but other tests seemed to rule that out.

    Is this just normal side effect of pelvic radiation?  Seems odd that she was feeling better for a bit and then feeling worse, but I don't know how up and down this whole process is. As far as I know, they think they removed all of the cancer in her hysterectomy and one follow-up surgery, but it had gotten to lymph nodes (4 out of 19 removed) so it could have already spread.

    Any thoughts? If you have any tips for getting a gut/colon back to 'normal' after radiation, I'd greatly appreciate it.

    Thanks,

    Stacey

  • jazzy1
    jazzy1 Member Posts: 1,379
    #7
    runwithloki said:

    Radiation side effects?

    Hi Jan,

    I've been trying to get more info about radiation side effects for my mom and I noticed you have posted a lot of helpful comments. I'm wondering if I could pick your brain a bit about some of her current issues. She was diagnosed with stage 3c uterine cancer last Jan and has since gone through chemo and 28 radiation sessions (completed right before Thanksgiving). She felt awful the whole time during radiation, worse towards the end and for a couple of weeks afterward, but then had a couple of pretty good weeks, when she was eating fairly normally. This past week has just been awful for her - non-stop diarrhea, low energy, no appetite, food intake limited to small amounts of applesauce, crackers, rice, etc. She went to urgent care twice in the last 5 days and both times they rehydrated her with an IV and did some tests, all of which came back negative (ie, no bacterial infection that they can determine). They also indicated, though, that she essentially has no gut flora, presumably all killed off by the radiation. A few days ago, she started getting a semi-persistent pain in her side; the doctors thought at first it might indicate a kidney stone, but other tests seemed to rule that out.

    Is this just normal side effect of pelvic radiation?  Seems odd that she was feeling better for a bit and then feeling worse, but I don't know how up and down this whole process is. As far as I know, they think they removed all of the cancer in her hysterectomy and one follow-up surgery, but it had gotten to lymph nodes (4 out of 19 removed) so it could have already spread.

    Any thoughts? If you have any tips for getting a gut/colon back to 'normal' after radiation, I'd greatly appreciate it.

    Thanks,

    Stacey

    Radiation

    Sorry to read what your mom is enduring since completion of treatments.  I have to say to still have her side affects for this long might not be normal.  Not saying it's cancer, but many times what we do or don't put in our  mouths affects our bowels and intestines to cause the diarrhea, low energy and no appetite.

    When you mentioned "no gut flora", meaning the good bacteria she needs to add PROBIOTICS.  I've been taking a product called SO Delicious Cultured Pro & Prebiotics Coconut milk.  You can find in your local Whole Foods or if lucky, local grocery store.  Our inners hold lots of bad bacteria and do get burned off during chemo and radiation.  I didn't drink this at the beginning after treatments in '09, but do today.  I can tell you I've had some  stomach issues, so tend to really watch what I put in my mouth and the probiotics do put back into our inners good flora.  

    Drink lots of fluids as diarrhea tends to dehydrate us, which might cause her low energy and loss of appetite.  I'd as well suggest some type over the counter to help with diarrhea....can't tell you what kind, but suggest asking your local pharmacist.  If what she eats goes back out, she looses lots of good nutrients.  Plus try small non-roughage foods, and how about some powder whey protein to build up her strength.

     

    This is a few of my thoughts as possibly someone else can add on.  

     

    Let me know if you have additional questions, as so happy to help in any way.

     

    HAPPY NEW YEAR!

    Jan

     

  • runwithloki
    runwithloki Member Posts: 16
    #8
    jazzy1 said:

    Radiation

    Sorry to read what your mom is enduring since completion of treatments.  I have to say to still have her side affects for this long might not be normal.  Not saying it's cancer, but many times what we do or don't put in our  mouths affects our bowels and intestines to cause the diarrhea, low energy and no appetite.

    When you mentioned "no gut flora", meaning the good bacteria she needs to add PROBIOTICS.  I've been taking a product called SO Delicious Cultured Pro & Prebiotics Coconut milk.  You can find in your local Whole Foods or if lucky, local grocery store.  Our inners hold lots of bad bacteria and do get burned off during chemo and radiation.  I didn't drink this at the beginning after treatments in '09, but do today.  I can tell you I've had some  stomach issues, so tend to really watch what I put in my mouth and the probiotics do put back into our inners good flora.  

    Drink lots of fluids as diarrhea tends to dehydrate us, which might cause her low energy and loss of appetite.  I'd as well suggest some type over the counter to help with diarrhea....can't tell you what kind, but suggest asking your local pharmacist.  If what she eats goes back out, she looses lots of good nutrients.  Plus try small non-roughage foods, and how about some powder whey protein to build up her strength.

     

    This is a few of my thoughts as possibly someone else can add on.  

     

    Let me know if you have additional questions, as so happy to help in any way.

     

    HAPPY NEW YEAR!

    Jan

     

    Probiotics

    Thanks, Jan. I passed along your recommendation to my mom and she is giving the So Delicious milk a try. The doctors think she may have a virus, with symptoms amplified because she so recently completed radiation and her immune system and gut flora are both so low. We'll see. She's taking other probiotics supplements as well but at this point, I think she needs whatever can help give her digestive system a boost so that she can absorb some nutrients before her food passes right through her.

    Thanks for the info - much appreciated.

    Stacey

     

  • jazzy1
    jazzy1 Member Posts: 1,379
    #9
    runwithloki said:

    Probiotics

    Thanks, Jan. I passed along your recommendation to my mom and she is giving the So Delicious milk a try. The doctors think she may have a virus, with symptoms amplified because she so recently completed radiation and her immune system and gut flora are both so low. We'll see. She's taking other probiotics supplements as well but at this point, I think she needs whatever can help give her digestive system a boost so that she can absorb some nutrients before her food passes right through her.

    Thanks for the info - much appreciated.

    Stacey

     

    Stacey

    Happy to be of help!  Sounds as if your mom is going thru the normal issues after treatments. Probiotics are very  helpful and as mentioned, I take them still today some 3 yrs after completion of treatments..

    Let me know how she's doing down the line.

     

    HAPPY NEW YEAR~

    Jan

  • Jaycee2
    Jaycee2 Member Posts: 2
    #10
    jazzy1 said:

    Cheerful
    Sorry to read about the diverticulitis...that's painful in itself. Have a friend with it and if he doesn't watch what he eats, he'll be in the bathroom for hours. Thinking this might be part of your issues, especially if you dont' eat a very defined diet.

    I'm not sure if they normally shorten the urethra, but that's what my OB told me. Seeing I'm small stature, possibly God created mine at the start smaller and by the time surgery hit, it's really small. Whow knows, but I just am used to venturing to the bathroom more often vs. the normal person.

    My diagnosis is MMMT which is as aggressive as UPSC, but I'm stage 3C. As mentioned, mine had spread to 1 pelvic lymph node, so had to really hit me hard with treatments.

    HAPPY HOLIDAYS TO YOU AND YOUR FAMILY!!
    Jan

    MMMT vs UPSC

    What is MMMT? 

    I have UPSC, stage 3C have done well w/usual hysterectomy, chemo & brachytherapy--no external radiation.  (D:Mar 2010 finished trtmts: 11/2010) so now going into 2nd yr of remission which is when it comes back so wanted to hear from others. 

    I did not maintain contact due to continuing to work through my treatment, so no energy left.

    The site I went to when diagnosed was helpful but no longer any new posts---said to come here but I don't know how to get to the UPSC site to see if anyone has survived.

    Thanks for any help you can give

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #11
    Jaycee2 said:

    MMMT vs UPSC

    What is MMMT? 

    I have UPSC, stage 3C have done well w/usual hysterectomy, chemo & brachytherapy--no external radiation.  (D:Mar 2010 finished trtmts: 11/2010) so now going into 2nd yr of remission which is when it comes back so wanted to hear from others. 

    I did not maintain contact due to continuing to work through my treatment, so no energy left.

    The site I went to when diagnosed was helpful but no longer any new posts---said to come here but I don't know how to get to the UPSC site to see if anyone has survived.

    Thanks for any help you can give

    Original site

    Is the one you are referring to the one Linda P. started?

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #12
    Jaycee2 said:

    MMMT vs UPSC

    What is MMMT? 

    I have UPSC, stage 3C have done well w/usual hysterectomy, chemo & brachytherapy--no external radiation.  (D:Mar 2010 finished trtmts: 11/2010) so now going into 2nd yr of remission which is when it comes back so wanted to hear from others. 

    I did not maintain contact due to continuing to work through my treatment, so no energy left.

    The site I went to when diagnosed was helpful but no longer any new posts---said to come here but I don't know how to get to the UPSC site to see if anyone has survived.

    Thanks for any help you can give

    Jaycee

    I too have UPSC stage 3-C.  I was diagnosed in 1/09.  I had the sandwich treatment of taxol/Carbo with 28 external radiation treatments and a 28 hour internal radiation treatment.  I had an 18 month break from chemo.  I don 't say I was NED because as soon as the chemo is stopped my CA125 begins to rise.  I had 7 more taxol\ Carbo treatments.  I had to switch too Cisplatin due to severe reaction to Carbo after the ninth dose.  Then I had a 7 month break from chemo.  I had 6 more taxol/cisplatin treatments.  I finished those treatments the end of May 2012.  As before my CA 125 is rising.  I am taking Aromasin right now and hope that is what is slowing the rise of the CA 125.

    My onocologist says the CA 125 is  just a number.  He only begins treatment if I have symptoms which I have never had any symptoms, our if the CAT scan shows something.  My CA125 got as high as 3200 before I started treatment,ent the last time.  Right now my CA125 is 360, so that number does not worry me.  

    I know I will need treatment again, but am enjoying each day I am off treatment.  So yes I am surviving.  Luckily I have had minimal side effects from all the chemo I have had.   There are many UPSC survivors.  Some continues to post and others have continued on with their lives.  May you continue to have your period of NED.  In peace and caring.

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