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pelvic radiation, after effects

blujae's picture
blujae
Posts: 7
Joined: Mar 2003

Has anyone had radiation to the pelvis region and suffered long term side effects? I have been done with radiation since april and cant seem to feel better. Is it just me or what?

djean
Posts: 4
Joined: Mar 2003

Hi, I had my last radiation treatment for anal cancer on May 8, 2003. I still have very bad lower back pain. The muscles in my groin area are tight but I find that if exercise them every night it helps. If I do not, I get really stiff. One bad side effect I still have is not having much feeling in that area. That makes for not very good sex. Hopefully this will get better.

AuthorUnknown
Posts: 1563
Joined: May 2006

djean,
just read your message and hope that you at least have no recurrence of the tumor. My wife just completed radiation and is in great discomfort, so she can't actually get to the computer. How long after treatment were you feeling well enough to walk around, go out etc feeling relatively normal? manfred

grannyfranny
Posts: 42
Joined: Jan 2004

From what I've been reading in other discussion groups, it's definitely not just you. Have you talked about this with your radiation oncologist or your plain-old oncologist?

I'd already had physical therapy for my back before I got cancer, and now my therapist works with me on post-surgical stuff etc. She is encouraging me to take tai chi to help my flagging energy & general malaise. I'll let you know if it helps - once I get it together to return the tai chi instructor's call!

francey
Posts: 1
Joined: Mar 2004

I'm a 27 year veteran of radiation therapy. I still have problems with tightness and discomfort, especially with sex. I have the aches and pains, not sure if it's arthritis or the radiation, but after all these years still have problems with bladder after having radiation for anal cancer.

SusyQ's picture
SusyQ
Posts: 1
Joined: Mar 2004

I had chemo/radiation treatments following radical hysterectomy surgery & catheter. 1st tatoos of my life were to mark to radiation spots. Caused 'internal sunburn' in/on lower GI. I lived on Imodium for six mo. following treatments. Because of compounded anemia & lack of MuscleControl I still take 650 mg of ferrous sulfate (iron) daily to keep my bowels firm. Chronic fatigue plus adhd & borderline hyperthyroid. I make it a point to know where each/every public bathroom is when I eat in public. One day @ a time, one step @ a time by the grace of a loving higher power. God bless, Susyq

SharonEL's picture
SharonEL
Posts: 21
Joined: Jun 2003

Wow! I quess I am not alone. I was beginning to feel that way. I read so many experiences of people who never skipped a beat during and after pelvic radiation, that I was feeling kind of whiny.
I started having the tightness in my hips either during or shortly after radiation. I mean crossing my legs or putting socks on became a chore. Then in October, I started having pain in my hips and lower back. Luckily, my Doc is great and listens to me. First he wanted to make sure it was not a recurrence in the bones. I had a bone scan and then a biopsy which came back negative. But the pain just got worse whenever I moved. As long as I don't move, it does not hurt. If I walk, stand or bend over too much, I can hardly move.
My great Doc sent me for an MRI which showed edema, but was pretty much inconclusive. So he sent me to an ortho Doc. Now they are watching me for bone necrosis caused by the radiation. An x-ray showed a spot that may be starting. I go back in June for more x-rays. The ortho also says I just have radiation damage to the muscles, etc that may or may not get better.
Thank you all for posting. I was feeling very alone in all of this. I feel like I should be back to normal by now, but I am not.
Sharon

birdgray
Posts: 8
Joined: Sep 2009

I am so grateful for this site; it has helped me understand that I’m not crazy.
Thank you to everyone who has posted
Bird

kellygr's picture
kellygr
Posts: 8
Joined: Nov 2009

And very much thankful. I am looking for someone that had pelvic radiation and has Stomach/food issues.

laneyc
Posts: 3
Joined: Mar 2010

Yes my brother had pelvic radiation and is suffering issues and in hospital now, food problems and weight loss. I have left a post earlier today re his problems.

Rosemarie810
Posts: 3
Joined: Apr 2010

I have been looking for information for over 6 years for other people who had issues similar to mine. First of all how is your brother doing? I have been thinking I was crazy for the last 6+ years. I had internal as well as external radiation. I have had bowel problems since. I also have had problems walking and feeling like a really very old person. Does he have issues with mobility? Please let me know. The best to you all.

Rosemarie

ryrich2911
Posts: 2
Joined: Apr 2010

I have had diarrhea since my second radiation treatment....I now have uncontrolable diarrhea, for the last 2+ years I have been injecting twice daily with a drug called octreotide---this helped with consistency, but no longer... stomach problems, but still trying to work and mess my pants at the same time...easy to hide urinary incontience, but not bowel. :-(

anhaga
Posts: 2
Joined: Mar 2013

Yes, Kellugr, I have ongoing gastrointestinal issues after 4 years I finally got a referral to a registered dietician who was very helpful. At about the same time I began to follow Heather Van Vorous's web site for IBS. She also has two books. Her recommendations are very similar to those I was given by the dietician.  I am managing  better, haven't had bowel blockages for several months, and I now have strategies when I begin to get into trouble.

bluerose's picture
bluerose
Posts: 1095
Joined: Jul 2009

I am a 20 year survivor of non hodgkins lymphoma and was radiated to the abdomen and pelvis once after diagnosis and thena again less than 2 years later on recurrance. At recurrance I had a bone marrow transplant using my own marrow and total body radiation again but less to the pelvis and abdomen due to the first exposure.

I have suffered many late effects from both the chemo and radiation and have been diagnosed with: damge to my heart from a chemo drug, early arthritis they feel from the radiation(osteo), fibromyalgia, possibly chronic fatigue syndrome, nerve neuropathy in feet and hands is being investigated but that's going to come back positive as I have constant tingling and pain in them all, chemobrain, chronic infections and the list goes one.

I never used to have any stomach issues but I have noticed more upset stomachs than not and recently they found a cyst and node on my right ovary that they are watching but so far feel is benign. I have had a kidney stone attack not long ago and while in my bladder trying to remove it the comment was that there was scar tissue in there that is what they see with radiation cases. Hmmm.

Just watch for symptoms that are new or odd to you on your way through life after cancer treatments, it depends on lots of things as to whether you will be affected by long term effects or not. What kind of chemo you had, how much radiation and where, meds you were or are on, lots of factors affect how your body will function afterwards.

Sometimes there is a high price to pay for a cure but I got to be here to watch my kids grow up so you can't argue with that. All the best. Blessings, Bluerose

dczekala
Posts: 1
Joined: Nov 2012

I was checking long term effects myself. I finished chemo Feb 2011 and finished radiaion April 2011. It is now Nov 2012. I still get tired out. I still can feel the buzzing of radiation in my outer hip thigh at times. Sensative to touch and massage.

The worst thing though to the pelvic radiation is suddenly I could not eat fresh uncooked fruit. Strawberries and apples made me very sick and stomach pains and intestinal pains. Strawberries were the worst. I thought I was dying. Salmanilla poisoning or something. It was awful. Twice so I know that is what it was. Once when eating a wrap with fresh veges and some type of lettuce. I remember that in the info packet it said that I may not be able to eat fresh fruits and veges. But I never dreamed it would begin so late and be so bad. I walk and exercise daily. In my late 50's I stiffen up. Or is it the radiation? IDK.
Both maybe. I am not as strong as I used to be. But I live life pretty normally but just have to watch fresh foods. Here I think I am eating so healthy and it makes me so ill.

I also feel aches and crampiness that feels like menstral cramps. Can't be with total hysterectomy. But my Dr said it was my intestines. So my pelvic radiation seems to have really effected my intestines and stomach. ...blujae...it takes time to get stronger from going through all that you did. Take a high potency vitamin. I take VM 75 from solgar. High in the B vitamins. Helps a lot. Also make sure you get good night sleeps. That was my problem I would stay up too late and sleep is so healing. Take plenty of calcium to fight against the effects against your bones. 1000 mg a day. Helps your sleep too. I take one at bedtime @ night and one with breakfast. Don't overdo it so you can get stronger.

I get strong and then I'm not. I go back and forth.

Radiation itself felt like it was killing me. It got so bad the Dr cancelled the last 2 treatments. I was dehydrated and the nurses were trying to keep me out of the hospital. My white blood cells were very low. Chemo nurses seem to be ready for this but the radiation Dr and nurses were clueless like I'm the only one it ever happened to. I could barely walk. I was so sick. Thank God the Dr was smart enough to stop when he did. And smart enough to send me back to the chemo nurses. I think they add extra treatments because they just don't know when to stop. I felt radiation was worse than chemo. I felt lied to because they told me radiation was a peice of cake. Both were horrible. I thank God He helps me every day. I am determined to live a normal life and I am. I have a lot to live for and am happy. Right after I started recovering I lost my 23 yr old daughter last year. 2011 was the year from hell for me. I write about it all in my book, "Joy in the Midst of Pain" by Diane Czekala But God brought me through! On Amazon.com

Cookie804's picture
Cookie804
Posts: 2
Joined: Apr 2013

My gosh, I did not realize this site was here.  I have visited ACS many times, but never looked for posts on the after effects of pelvic radiation.  I see I am not alone.  

I was diagnosed with vaginal cancer in 2008 and received internal beam radiation, which really caused no problems.  However, the cancer returned in 2011 and I had 5 weeks (5 days a week) of pelvic radiation.  It was awful.  The radiologist had to stop treatment twice because my skin was cracking open and bleeding, not to mention stomach pains, diarrhea, nausea, and fatigue.  I guess I thought the second radiation would be like the first one, but I was wrong.  

I finished my treatment in January 2012 and I still have side effects.  I have non-stop vaginal discharge, I cannot eat certain foods (mainly roughage) unless I have a bathroom nearby.  My oncologist tells me the side effects will dissapte in two to three years.  Hope he is correct.  I have vaginal atrophy which requires the use of a vaginal dialator three times a week just to keep the vaginal canal open since apparently the radiation shortens the vagina.  

I had a total hysterectomy in the early 1980s and never expected to have any further problems, but lo and behold, I was wrong on that point.  

I try to exercise on a daily basis and live as normally as I can, but between the aches and pains and fatigue, it is really hard to push myself.  Just taking things day by day and hoping for the best.  

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'm almost 4 years NED and did endure  external pelvic radiation for uterine cancer.  Last year after a long time dealing with some lower back pain, had an MRI.  Showed L4/L5 lower back bulging disk and sciatica pain.  Had this treated and today no pain.  Approx 6months ago started with stomach pains after eating some meals.  I tried watching what I ate and any side affects.  I have always been a raw food eater plus lots of cruiciferious veggies.  Turns out today I cannot eat a lot of these veggies unless they're softened via some mild cooking.  

Guess it takes time to see some changes even after 4 years since the radiation.  In the end, I'm grateful this is not cancer, but darn sure can put on a damper on our normal living.  

 

mmcia
Posts: 10
Joined: Feb 2013

Cookie, I had 6 weeks of pelvic radiation, with 3rd degree burns, flesh falling off me in chunks, it was pretty bad.Got done in January. I too have had diarrhea, violent and unpredictable for two months afterwards. I thought I was going to have it for as long as the scar tissue on my bowels kept water from being absorbed out of my stool. But I was watching a TV show and they mentioned benificial bacteria in the lower intestines, the light went on. I went out and got yoghurt with two live cultures and a week later the diarrhea was cured! Hope this helps. Keep your spirits up and bless you.

Cookie804's picture
Cookie804
Posts: 2
Joined: Apr 2013

Thank you all for your responses.  I have been trying all sorts of things to help with these nasty side effects.  One day at a time.  Smile  

 

Wishing you all the very best!!!

joane0328
Posts: 13
Joined: Aug 2012

I completed radiation/ chemo treatments for anal cancer on 10/31/12. It took a good year before I felt close to being normal but when ever I had any type of diarrhea, I had immediate skin breakdown. In addition, I had burning and an aching sensation with bowel movements, and have been very diligent in taking fiber and eating healthy, ( ie 5 servings of fruits and veggies, whole grains, and trying to cut down on processed and junk foods)

I had biopsies late June 2014, and have had MAJOR setback as a result. Continuous pain/ burning which intensifies with bowel movements, constant mucos stool/ mucos drainage, difficulty urinating, pain when I sit down, very fragile skin condition.... I could go on...

I am definitly seeking a new doctor, and so upset over this issue.. my quality of life is about a 3 out od 10.... and not improving. 

 

 

 

 

 

 

 

 

lizardlady's picture
lizardlady
Posts: 1
Joined: Nov 2014

Hi, I had stage 3 cervical cancer in 08' . I had radical hysterectomy and 4 months with chemo as well as radiation treatments. It was not til about 15 months later that the problems started, severe stomach and abdominal pain  followed with vomiting this went on at least once a week every month along with diahrrea. I was hospitalized at least once a month during these episodes, the first time being the worst hospitalized for 6 days,no water no food just an i.v. and pain meds. I was going thru partial bowel obstructions Brought on by side effects from radiation. This went on for about 6 months with multiple M.R.I's with and without contrast and barium treatments yuck! The next step took me down the road of colonoscopy  and endoscopy's to find the location of said obstructions, that took an additional year with continued hospital stays, I lost so much weight that I had a pic line put in to put weight back on me( I weighed 98 lbs). I swallowed a pill that had a camera in it that took photos continuously until I passed it( I did not have to retrieve it) I wore a vest that had a recording device with a Sim card in it and pics were blue toothed to that. They found suspicious bleeding in my small bowel but I needed to go see a specialist in Dallas to do another endoscopy/ colonoscopy with a special kind of scope to get better look at the  location. Came back home and surgery was performed where upon 3 ft. Of small intestine was removed along with part of my terminal ilium ( it was very damaged from radiation) now I live with  constant diahrrea with bile, mucosa and blood in my stool. I have taken different types of treatments that would help for a while then start to cause other issues to the point of stopping. I'm trying Lomotil  now with some success to my diahrrea. I am having low back and pelvis , as in tail bone and hips in pain always. I can only walk for about an hour and I'm in severe pain and extremely fatigued I have a loss of muscle too.I quit my job because the physical demand was to much on me. Does anyone out there have these issues too. Exercise does not help,even though I keep pushing to stay active it is becoming more difficult any advice would be much appreciated.thanks

analc survivor
Posts: 1
Joined: Dec 2014

Hi Joane0328,

I finished treatment for stage 111B anal cancer in October of 2013 and am still suffering in pain. All the same as you described. Somedays are better than others and will take those. I had HBOT treatments for the radio necrosis and fissures. It was no miracle, but did a little to help the external skin. My theory is that they know how to get the cancer but know nothing about how to fix the problems the radiation and chemo caused. I have trouble eating just about anything and have a list of where all the bathrooms are when I go out. I get a few hours in the afternoon were I feel ok. Generally I am tired and achy and dizzy alot! I take a handful of vitamins everyday and they tell me my blood is good, but why do I feel so old??? Lately my hips have started to pop and have had lower back pain. Then there is the little pop popping from gas! My grandmother use to call it tooting!! The diarrhea takes a long time to go away, I still have it out of the blue and eat the saem thing every day!

If you find a doc who know hpw to fix this please pass his name along!

 

Auzzie123's picture
Auzzie123
Posts: 9
Joined: Dec 2013

As a result of radiation for uterine cancer I have Lymphedema in my left leg... This started straight after treatment finished.. I have now been diagnosed 12 years later with lumbar Plexopathy.. Damage to the nerves in the pelvis.. I had noticed over the last two years things going wrong.. Pins and needles, numbness, walking slower and slower, difficulty walking up a slope, difficulty climbing stairs, loss of balance and tripping over..it was a very gradual change and I blamed the Lymphoedema for the syptoms... But they got worse... Fortunately no pain... I was diagnosed two weeks ago by a neurologist.. I am having more tests to confirm diagnosis... They say this is very rare and can start between 1 year and 30 years later!!! So rare they do not tell you it is a side effect!!! Till you have it.. 

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