pelvic radiation, after effects

2

Comments

  • joane0328
    joane0328 Member Posts: 14
    Cookie804 said:

    Pelvic Radiation

    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.  

    Pelvic radiation/ post effects

    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
    lizardlady Member Posts: 1
    joane0328 said:

    Pelvic radiation/ post effects

    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. 

     

     

     

     

     

     

     

     

    and the pain goes on.

    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
    analc survivor Member Posts: 2 Member
    joane0328 said:

    Pelvic radiation/ post effects

    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. 

     

     

     

     

     

     

     

     

    Anal Cancer treatment side effects

    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!

     

  • bluerose
    bluerose Member Posts: 1,104
    Hardly ever 'just me'

    Hi Blujae,

    I can assure you that as far as side effects of treatment are concerned you can pretty much be assured that most of the things you are experiencing others have too.  Read the posts concerning your issues and I have little doubt you will find many who are facing similar issues after treatments, physically and emotionally.  the site really helps so many.

    All the best.

    Blessings,

    Bluerose

     

  • magnolia06
    magnolia06 Member Posts: 1

    Your post
    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

    post
    I am happy to find this site. My oncoligist denies that my bowel incontinence and increasing difficulty walking as well as my low back pain are related to the internal and external radiation treatments I received in 2006. These symptoms started soon after (within 6to 8 months) treatment was finished. I have been able to greatly improve the bowel problem by taking a probiotic capsule every day. This was never suggested by my doctors but rather an idea I had on my own. The increasing loss of mobility along with severe low back pain has also been dismissed by my oncoligists. I have recently had spinal x rays and a CT Scan as ordered by a spine specialist. Both showed no causal problem with my spine. My physical therapist refused to begin spinal therapy without further diagnostic testing for nerve damage. If anyone has found a successful treatment for the loss of mobility please share that information with me. I have completely given up expecting any help from the medical business.
  • alizarin
    alizarin Member Posts: 5
    joane0328 said:

    Pelvic radiation/ post effects

    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. 

     

     

     

     

     

     

     

     

    I am truly sorry for your

    I am truly sorry for your continuing problems. I have had four ayurveda consults since TX, 10/2012 and this is what I can eat. If I eat other foods, I can get gas, pain, cramps, more discomfort than I want (mucous, for sure).       ALL my vegetables have to be well cooked. The only bean I can digest is red kidney beans. I eat red lentils, organic white basmati rice, barley. Almost no fruits. Needless to say, I have become a master of stews, soups, Indian cuisine. ALL my food is hot/warm and liquidy. IT TAKES getting used to cooking this way, but it WORKS. For breakfast I make hot cereal, rice or amaranth and grind chia, sesame, and golden flaxseeds into it, adding cinnamon, molasses and ground cloves. I love fried rice. And fritattas. If my food is dry I drink tea with it.       The foods I eat are the foods that are easily digestible. I also have neem oil sitz baths twice a week and massage my anus with neem oil.         I hope this encourages you. There is no turning back. Life is good.      

  • Auzzie123
    Auzzie123 Member Posts: 28
    Radiation induced Lumbar plexopathy

    i had radiation to my pelvis 13 years ago for uterine cancer... I now have radiation induced lumbar plexopathy and I am a paraplegic my legs are useless due to the damage from radiation ...i have created a blog in the hope of connecting with others as this is a lonely disease https://lifeinawheelchairblog.wordpress.com please connect with me via the blog as I would live to communicate with others Helen  

  • janieb53
    janieb53 Member Posts: 5
    edited July 2016 #29
    Cookie804 said:

    Pelvic Radiation

    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.  

    Vaginally bleeding after external pelvic radition

    Hello. First of all... Bless you... I know the torment you have gone through with this radiation. I also had bad burns on my buttocks. Took forever to heal. I had 25 external and 3 internal in 2014 from cervical/endometrial cancer. After I had a radical hysterectomy. The cancer recurred again on vaginal cuff and I had chemo and a new type of brachytherapy. Stayed in hospital flat on my back for 3 days. It recurred again in vagina and had to have my bladder removed. It recurred once again and I have just finished 35, hour long radiation treatments. It was rough. I finished a month ago and still having terrible diahhrea. I have started bleeding lightly from the vagina. It is heavier if I have a bowel movement. Has this happened to you? I go back to gyno/onco in 2 weeks! I hope you continue to heal❤️

     

  • janieb53
    janieb53 Member Posts: 5
    Auzzie123 said:

    Not feeling so alone

    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.. 

    Lymhoedema

    I also have this in both legs as a result from my radical hysterectomy and radiation. I am now seeing a therapist who is teaching me wraps and massage therapy that could help reduce edema and help with pain from neuropathy. 

  • EmmaEmerson
    EmmaEmerson Member Posts: 7
    edited October 2016 #31
    SusyQ said:

    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

    My first tattoos

    My first tattoos were for the same reason. :) I hope you are feeling better these days.

    emma

  • Carrot77
    Carrot77 Member Posts: 1
    edited March 2017 #32
    kellygr said:

    Not crazy either
    And very much thankful. I am looking for someone that had pelvic radiation and has Stomach/food issues.

    Stomach issue

    you are so not crazy. I had radiotherapy and chemotherapy for cervical cancer in nov/Dec 2012. I also had brachytherapy in Jan 2013. I now get acid off my stomach and I take omprezole. I have also been diagnosed with ibs on buscapa. I have bladder damage and bowel damage. I have also recently been diagnosed with a bulging disc and sciatica down my right leg And an insufficiency fracture on my right side. Starting physio tomorrow although the doc mentioned surgery. On the plus side. No cancer. My children still have a mother. I will turn 40 next year and my children were only 11 and 13 when this happened to me. Sometimes I forget that I'm only in my 30s because I feel a lot older. 

  • Pamela D.
    Pamela D. Member Posts: 1
    edited March 2017 #33
    Radiation side effects

    I have breast cancer. Had radiation . then all kinds of troubles with my hip. Doctors tell me it has nothing to do with radiation. I can not sit with my leg crossed my knee is almost even with my nose! I stopped driving my leg would go numb . Sex is way to painful, I could not get up from sitting on floor without help. And all this started a couple weeks after radiation started. 

     

     

  • sandyjdub
    sandyjdub Member Posts: 2
    Very long-term survivor of cervical cancer

    In 1982 at age 38 I was treated for advanced cervical cancer (stage 4) with a radical hysterectomy. Because the pathology report showed 7 abdominal lymph nodes positive for adeno-squamous cancer, one month after surgery I underwent both external and internal radiation treatment to my abdomen. I'm writing the story of my treatment in hopes of encouraging everyone who is dealing with this kind of cancer and its consequences. Even though today you may feel awful, wondering if you will ever heal, wondering if that new symptom is cancer again, it is possible to get better and to live with and even overcome the iatrogenic symptoms (caused by the treatment). 

    These treatments were successful in eradicating my cancer. For a year following treatment, my body slowly healed and I began feeling better. However, I then began having symptoms in my legs like lymphedema, lymphangitis (like cellulitis) infections, and peripheral neuropathy, as well as extremely painful small bowel blockages. Over the years I learned to control the swelling in my legs with heavy-duty compression stockings. I learned the hard way that taking a daily prophylactic antibiotic will prevent bouts of lymphangitis (yes, I've been on lower dose antibiotics since about 1983!). The worst symptom, though, was the small bowel blockages which were extremely painful, often causing me to present at the hospital ER for treatment. Apparently both the surgery and radiation contributed to adhesions which restricted the activity and diameter of my small intestines. I dealt with these attacks happening 3-4 times a month for 14 years. How did I do that? One day at a time, trying not to think too far ahead and being grateful I didn't have cancer. Finally, when I could no longer eat any solid food, my doctor referred me to a surgeon who believed he could remove the scarred section and give me some relief. So I underwent a small-bowel resection in 1996. After that, my quality of life improved tremendously as I was then able to eat a normal diet without fear of blockage or pain. As for the peripheral neuropathy, it came on gradually so that nowadays my feet are mostly numb yet strangely hyper-sensitive. My doctor tells me that radiation to the abdomen can damage the nearby spinal nerves which then cause feeling in the feet to be impaired. Although it had been 32 years since I had my last radiation treatment, in 2014 I developed a blockage in one of my ureters (the tube connecting the kidney to the bladder) which was extremely painful, like a kidney stone. My doctor reported that the ureter had very slowly developed scarring from the radiation. Treatment involved dilating the ureter with a hollow flexible tube which stayed in place for several weeks and then was removed. That's one of the things about radiation - cells don't fully recover from it, so they can develop scarring many years later. I am very happy to say that I've had no further trouble with that particular problem.

    Everyday I am thankful for my "good health" and thankful for things like compression hosiery, antibiotics, and comfortable shoes that have enabled me to live a full life, working till retirement at 70 to start a new phase. I can now spend more time with family, which includes great-grandkids, more time at the gym, and more time with friends. Life is good.

  • sandyjdub
    sandyjdub Member Posts: 2

    and the pain goes on.

    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

    Coping with digestive yuck

    Although it's been over 2 years since you wrote, I'm inputting my two cents' worth in hopes it will help you or others like you. As a result of pelvic surgery and radiation treatment many years ago, I had frequent small bowel blockages that eventually led to surgery to remove the offending scarred intestine. I had been eating tiny servings of rice, fish, and diluted ensure until I lost so much weight my doctor said I was malnourished. Surgery to remove the distal end of my small intestine removed the adhesions, but also brought on some new problems.

    Let me preface this by saying that I am not a nutritionist, dietition, or doctor. What follows comes from being educated by health profesionals with whom I've had contact, and from my own experience.

    The distal portion of intestine (the part I had removed) has some specialized functions. It absorbs vitamin B12 and bile. The B12 is easy to fix - I take 1000 mcg daily to keep my level in the normal range; some folks get B12 shots. The bile issue is different. Your small intestine uses bile to digest fats and oils. At the distal end, just before it goes into the large intestine, a normal bowel reabsorbs most of the bile. It turns out that when bile isn't reabsorbed and goes into the large intestine, it is irritating and can cause diarrhea. On top of that, intestines that have been radiated can have damage to the little vilii (like microscopic fingers) that produce enzymes like lactase and glutenase. That means dairy products, most of which contain lactose (milk sugar), can be hard to digest, leading to gas, bloating, and diarrhea. What about the glutenase vilii? You guessed it - glutenase helps digest grains containing gluten: wheat, rye, barley, and a few others. The result is gluten intolerance, although not as extreme as celiac disease. Now we've got irritation to the large intestine from bile, lactose, and gluten. How to cope? Modify your diet to be low in fat, lactose, and gluten. Animal fats may be more troublesome than vegetable or nut oils. I go for low-fat foods to try to keep fat grams below 10 per meal. With lactase tablets and products readily available, one can eat most dairy products. One paradox is this: although aged cheeses, sour cream, and butter have little lactose, because they contain animal fats you'll want to minimize their intake. Now that gluten-free diets are all the rage, it is much easier to avoid gluten. My diet is varied, healthy, and enjoyable. Sometimes I cheat by eating a cookie (gluten and high fat) or some cheesecake (lactose and high fat), so I pay the price by taking lomotil and staying close to restrooms.

    When I began taking medications to help with my neuropathy and restless legs syndrome, I found that my symptoms of diarrhea were helped. That's because the side effects for those meds include constipation which is a good thing for people like me. 

  • henhill
    henhill Member Posts: 123
    sandyjdub said:

    Very long-term survivor of cervical cancer

    In 1982 at age 38 I was treated for advanced cervical cancer (stage 4) with a radical hysterectomy. Because the pathology report showed 7 abdominal lymph nodes positive for adeno-squamous cancer, one month after surgery I underwent both external and internal radiation treatment to my abdomen. I'm writing the story of my treatment in hopes of encouraging everyone who is dealing with this kind of cancer and its consequences. Even though today you may feel awful, wondering if you will ever heal, wondering if that new symptom is cancer again, it is possible to get better and to live with and even overcome the iatrogenic symptoms (caused by the treatment). 

    These treatments were successful in eradicating my cancer. For a year following treatment, my body slowly healed and I began feeling better. However, I then began having symptoms in my legs like lymphedema, lymphangitis (like cellulitis) infections, and peripheral neuropathy, as well as extremely painful small bowel blockages. Over the years I learned to control the swelling in my legs with heavy-duty compression stockings. I learned the hard way that taking a daily prophylactic antibiotic will prevent bouts of lymphangitis (yes, I've been on lower dose antibiotics since about 1983!). The worst symptom, though, was the small bowel blockages which were extremely painful, often causing me to present at the hospital ER for treatment. Apparently both the surgery and radiation contributed to adhesions which restricted the activity and diameter of my small intestines. I dealt with these attacks happening 3-4 times a month for 14 years. How did I do that? One day at a time, trying not to think too far ahead and being grateful I didn't have cancer. Finally, when I could no longer eat any solid food, my doctor referred me to a surgeon who believed he could remove the scarred section and give me some relief. So I underwent a small-bowel resection in 1996. After that, my quality of life improved tremendously as I was then able to eat a normal diet without fear of blockage or pain. As for the peripheral neuropathy, it came on gradually so that nowadays my feet are mostly numb yet strangely hyper-sensitive. My doctor tells me that radiation to the abdomen can damage the nearby spinal nerves which then cause feeling in the feet to be impaired. Although it had been 32 years since I had my last radiation treatment, in 2014 I developed a blockage in one of my ureters (the tube connecting the kidney to the bladder) which was extremely painful, like a kidney stone. My doctor reported that the ureter had very slowly developed scarring from the radiation. Treatment involved dilating the ureter with a hollow flexible tube which stayed in place for several weeks and then was removed. That's one of the things about radiation - cells don't fully recover from it, so they can develop scarring many years later. I am very happy to say that I've had no further trouble with that particular problem.

    Everyday I am thankful for my "good health" and thankful for things like compression hosiery, antibiotics, and comfortable shoes that have enabled me to live a full life, working till retirement at 70 to start a new phase. I can now spend more time with family, which includes great-grandkids, more time at the gym, and more time with friends. Life is good.

    Radiation damage to intestines

    I also had delayed reaction to surgery and radiation in 2015.  My intestines hurt so bad (especially at night) I can hardly stand it.  I found that Aleve is the best thing to kill the pain and reduce the swelling.  My doc HATES that idea, and has put me on pill after pill for months now, with no relief.  I also got lymphedema at about the same time 1+ years later.  I wish I could say I felt better, or good enough to  move past it, but not yet.  I wish there were more good doctors who know how to treat this, I wasted time money and energy on this dilemma also.

  • DarleneH
    DarleneH Member Posts: 1
    Vaginal cancer

    I am so thankful I found this site. I know now I'm not alone, and more importantly I think I might now know what some of these tummy, back and hip pains might be. 

  • ferragano2
    ferragano2 Member Posts: 3
    Radiation Side Effects

    I have kidney cancer that metastized onto my Vertebrae.  I have received 8 doses of targeted radiation at Memorial Sloan Kettering for a tumor at T7.  They gave me 5 doses in 5 consecutive days at the end of September 2017.  In October I went rapidly downhill and have difficulty walking.  I cannot walk up or downstairs and have no balance.  I have to use a walker and a cane.  I cannot move my right foot to drive a car.  The doctors gave me an MRI, CT scan and x-rays.  The doctors say they don't know what is causing my problem.  The scans look good.  It is not the cancer and nothing that requires surgery.  The nerves appear to be good.  The only thing that may be causing the problem is a swollen iliosoas muscle that may be squeezing the nerves.  i have tightness in the back of my waist and upper thighs but no pain.  I recently started physical therapy.  Has anyone had a similar experience?  Is this a temporary or permanent condition?

  • AnaLeao
    AnaLeao Member Posts: 2
    Radiation Chronic Enteritis

    Hello everyone I am new to this so be patient please :)

    I have finished my radiation treatment 37 years ago and at the time I felt like I was going to die; it was far worse than other therapies. The immediate side effect of the radiation was cystitis; once it got better I resumed treatments. The first couple of years afterwards I felt well and hey! cancer free so I was pretty happy. About 5 years post treatment however I started to have occasional but very severe abdominal pains with heavy vomiting. I would go to emergency when I could not endure the pain anymore, but nothing was diagnosed. To cut a long story short it was only around 2000 that I started to hear about radiation chronic enteritis. In 2001 I had a severe bout of pain and vomiting and had to be emergency operated; my bowel was twisted and clogged. The surgeon could then see the scar tissue in my bowel; he drained rather than cut as apparently radiated tissue does not heal well and tends to scarify without elasticity too.

    Since then I have tried to control the bouts of pain and vomiting with my nutrition - I avoid vegetable fibres, I am lactose intolerant, and my nutrition is kind of a nightmare. This would be tolerable if the bouts of pain, vomiting and weeks of diarrhea stopped, but they didn't. I have a bout of extreme pain in an average of once a month despite all my caution with the eating. I take strong painkillers and when the pain does not stop despite painkillers I go to the emergency as I am afraid that nature won't sort itself out and I have to be operated again. This is going on for 30+ years; it can start any minute and I never get a pre-warning that a crisis is setting in. I find it very debilitating and crippling.

    My question is: does anyone experience the same symptoms and how to go around them? Has any of you tried surgery for this problem? How did that go and how do you feel now? I have heard of bypass surgery of the bowel where they cut above the scarified tissue and join the bowel parts that are sound. Has anyone tried it? I feel so tired of dealing with this... Can anyone help?

    I hope you can understand my English - it is not my first language

    Thanks

    Ana

     

  • AnaLeao
    AnaLeao Member Posts: 2
    sandyjdub said:

    Very long-term survivor of cervical cancer

    In 1982 at age 38 I was treated for advanced cervical cancer (stage 4) with a radical hysterectomy. Because the pathology report showed 7 abdominal lymph nodes positive for adeno-squamous cancer, one month after surgery I underwent both external and internal radiation treatment to my abdomen. I'm writing the story of my treatment in hopes of encouraging everyone who is dealing with this kind of cancer and its consequences. Even though today you may feel awful, wondering if you will ever heal, wondering if that new symptom is cancer again, it is possible to get better and to live with and even overcome the iatrogenic symptoms (caused by the treatment). 

    These treatments were successful in eradicating my cancer. For a year following treatment, my body slowly healed and I began feeling better. However, I then began having symptoms in my legs like lymphedema, lymphangitis (like cellulitis) infections, and peripheral neuropathy, as well as extremely painful small bowel blockages. Over the years I learned to control the swelling in my legs with heavy-duty compression stockings. I learned the hard way that taking a daily prophylactic antibiotic will prevent bouts of lymphangitis (yes, I've been on lower dose antibiotics since about 1983!). The worst symptom, though, was the small bowel blockages which were extremely painful, often causing me to present at the hospital ER for treatment. Apparently both the surgery and radiation contributed to adhesions which restricted the activity and diameter of my small intestines. I dealt with these attacks happening 3-4 times a month for 14 years. How did I do that? One day at a time, trying not to think too far ahead and being grateful I didn't have cancer. Finally, when I could no longer eat any solid food, my doctor referred me to a surgeon who believed he could remove the scarred section and give me some relief. So I underwent a small-bowel resection in 1996. After that, my quality of life improved tremendously as I was then able to eat a normal diet without fear of blockage or pain. As for the peripheral neuropathy, it came on gradually so that nowadays my feet are mostly numb yet strangely hyper-sensitive. My doctor tells me that radiation to the abdomen can damage the nearby spinal nerves which then cause feeling in the feet to be impaired. Although it had been 32 years since I had my last radiation treatment, in 2014 I developed a blockage in one of my ureters (the tube connecting the kidney to the bladder) which was extremely painful, like a kidney stone. My doctor reported that the ureter had very slowly developed scarring from the radiation. Treatment involved dilating the ureter with a hollow flexible tube which stayed in place for several weeks and then was removed. That's one of the things about radiation - cells don't fully recover from it, so they can develop scarring many years later. I am very happy to say that I've had no further trouble with that particular problem.

    Everyday I am thankful for my "good health" and thankful for things like compression hosiery, antibiotics, and comfortable shoes that have enabled me to live a full life, working till retirement at 70 to start a new phase. I can now spend more time with family, which includes great-grandkids, more time at the gym, and more time with friends. Life is good.

    I experience exactly the same

    I experience exactly the same bowel syptoms as you and feel so relieved to learn you had a bowel resection and live now without the pain and fear of blockages. I had a severe blockage in 2001 and had to be operated but the surgeon drained rather than cut the bowel. This gives me hope to put a bit of pressure on my doctor who has been quite hesitant in operating me again (I already underwent 11 surgeries). I too am grateful of the years I have lived cancer free but the pain and fear for the past 30+ plus years is wearing me down.

    Thank you for your sharing your experience

    Ana

  • laura127
    laura127 Member Posts: 4
    Auzzie123 said:

    Radiation induced Lumbar plexopathy

    i had radiation to my pelvis 13 years ago for uterine cancer... I now have radiation induced lumbar plexopathy and I am a paraplegic my legs are useless due to the damage from radiation ...i have created a blog in the hope of connecting with others as this is a lonely disease https://lifeinawheelchairblog.wordpress.com please connect with me via the blog as I would live to communicate with others Helen  

    I am so sorry for your

    I am so sorry for your radiation induced difficulties.  I am a two time survivor, first with anal cancer, later breast cancer.  I had much radiation with concurrent chemo for the first cancer.  About six months after the initial side effects decreased I began to have a lot of stomach and intestinal problems that through the years have ony gotten worse.  I am now pursueing Hyperbaric Oxygen Therapy.  I would like to hear from you or others that may have tried this treatment.  I find it so helpful to read from otheres that experience similar symptoms from their radiation treatments.  I now have a name for what I continue to experience:  "Chronic radiation enteritis" .  The research I have done fits my symptoms as no other has, even IBS.  I have read that it is a progressive disease.  Had I known about this even a few years ago I may have been able to make better choices for myself that would have possibly kept from componding the problem.  I had my initial radiation in 1996.