post radiation side effects

donnarush
donnarush Member Posts: 20

Hi Eveyone. I am 1 1/2 yrs. out post radiation/chemo treatments. I have had compression fractures in my lower back and fractures in my pelvis post radiation treatments. Told I have severe osteoporosis now. I am 57 ys. old and am 5'10; not a typical candidate for this type of osteoporosis. I am having some severe hip joint pain with the feeling of a low grade fever. I have had blood work recently with mostly normal results. I am having a follow up colonoscopy next Thursday. Has anyone experienced any weird symptoms? I do not want this cancer to return. I was diagnosed in May 2013, stage 1, no lymph involvement. I am so nervous. I know that radiation side effects can last a long time. I would appreciate any info. Thank you and have a great day.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    donnarush

    I'm really sorry to hear about your bone status.  You are right, at your height, you are not at as high a risk for osteoporosis as someone my size--I am 5' 3 1/2" and weight is around 95 pounds, with a very small frame.  I too have osteoporosis in my right hip with pain and osteopenia in my left hip and lumbar spine.  I suffer from back, hip and leg pain and am on Fosamax to keep my bones from deteriorating further.  

    I'm glad your blood work was mostly normal, but definitely bring to the attention of your doctor that low grade fever.  I always worry about another cancer caused by the radiation to my bones, such as leukemia.  As for radiation effects lasting a long time, I would state that differently.  I think they last a lifetime.

    I hope your colonoscopy will give you the all clear and that worry is relieved.  As for the bone issues, have you discussed with your doctor the possibility of starting medication?  I have been on the Fosamax for over a year now and have no side effects from it that I'm aware of.  I also take Calcium, Magnesium and Vitamin D, along with eating a few servings of calcium-rich foods every day.

    I wish you all the best and hope you'll let us know how everything goes.

    Martha 

  • donnarush
    donnarush Member Posts: 20
    mp327 said:

    donnarush

    I'm really sorry to hear about your bone status.  You are right, at your height, you are not at as high a risk for osteoporosis as someone my size--I am 5' 3 1/2" and weight is around 95 pounds, with a very small frame.  I too have osteoporosis in my right hip with pain and osteopenia in my left hip and lumbar spine.  I suffer from back, hip and leg pain and am on Fosamax to keep my bones from deteriorating further.  

    I'm glad your blood work was mostly normal, but definitely bring to the attention of your doctor that low grade fever.  I always worry about another cancer caused by the radiation to my bones, such as leukemia.  As for radiation effects lasting a long time, I would state that differently.  I think they last a lifetime.

    I hope your colonoscopy will give you the all clear and that worry is relieved.  As for the bone issues, have you discussed with your doctor the possibility of starting medication?  I have been on the Fosamax for over a year now and have no side effects from it that I'm aware of.  I also take Calcium, Magnesium and Vitamin D, along with eating a few servings of calcium-rich foods every day.

    I wish you all the best and hope you'll let us know how everything goes.

    Martha 

    side effects

    Thank you Martha for responding. I tell ya, I just get so scared anymore. I went to a dr. who prescribed prolia. a twice a year injection. I only had one. I had many side effects. She told me to hold off until I get my colonoscopy and issues resolved. I do take magnesium,vitamin d. drink milk, eat yogurt, etc. I was told to stop calcium due some new findings of heart problems it can cause. go figure. I can live with these bone issues as long as my cancer doesn't return. always a worry. I do feel like I could have an infection of some sort. We will see. Colonoscopy is next Thursday. I will let you know.

  • sephie
    sephie Member Posts: 650 Member
    yes, osteoporosis

    i am almost 6 years post tx.... i was osteopenic before tx and now  have had osteoporosis noted in 1 hip and lower back since tx.... they put me on Reclast infusion.... i have had 3 years of those and reclast did stabilize the osteo.... that is all they would give me....soooooo i do take calcium , d, etc.....i have had fosamax , actonel and etc before the tx for the osteopenia....sooooo....i do have left hip pain and always lower back pain.....  sephie -----please note that docs at MD Anderson said to NOT have Forteo because it will cause some type of bone cancer in those who have had radiation.....sephie

  • TraceyUSA
    TraceyUSA Member Posts: 316
    sephie said:

    yes, osteoporosis

    i am almost 6 years post tx.... i was osteopenic before tx and now  have had osteoporosis noted in 1 hip and lower back since tx.... they put me on Reclast infusion.... i have had 3 years of those and reclast did stabilize the osteo.... that is all they would give me....soooooo i do take calcium , d, etc.....i have had fosamax , actonel and etc before the tx for the osteopenia....sooooo....i do have left hip pain and always lower back pain.....  sephie -----please note that docs at MD Anderson said to NOT have Forteo because it will cause some type of bone cancer in those who have had radiation.....sephie

    Osteopenia

    I had osteopenia before treatment and the DEXA scan after treatment indicated it got a little worse.  I take Caltrate and am trying to exercise more to build bone mass (which I was able to do prior to treatment.)  I'm very small boned and weigh around 110 lbs. with a mother who had osteoporosis, so for Ihave a lot of risk factors but I think the radiation did not help either.

  • GreenNative
    GreenNative Member Posts: 7 Member
    TraceyUSA said:

    Osteopenia

    I had osteopenia before treatment and the DEXA scan after treatment indicated it got a little worse.  I take Caltrate and am trying to exercise more to build bone mass (which I was able to do prior to treatment.)  I'm very small boned and weigh around 110 lbs. with a mother who had osteoporosis, so for Ihave a lot of risk factors but I think the radiation did not help either.

    Post pelvic radiation side effects

    Hello, I am 3 1/2 years out from my chemo-radiation treatment for anal cancer.  I have hip pain, bladder radiation cystitis, low back pain, and general pain in the pelvic region if I don't do regular exercise.  Sometimes if I exercise too strenuously I hurt a lot.  I too had a bone dexa before treatment that showed osteopenia, but I am not having another one as I don't want to be exposed to any more radiation.  I also worry about the cancer coming back, though so far all my checkups have been good.

    i have had gynecologists, urogynecologists, family practice, internal medicine and gastroenterologists all tell me that what I am presenting with is due to post- menopause and old age -- I am 57.  I tell them I've had radiation treatment, but they literally have no clue what that entails or does to patients.

    I just read two European studies about long term effects of pelvic radiation.  These symptoms we all have are definitely related to radiation therapy.  The studies also found that chemo increases the symptoms. The authors of both studies said the research on this subject is very limited.  Their conclusions were also interesting in that they showed that these symptoms are not merely age-related as the norms they used did not have the same rate of exhibiting theses symptoms as radiation patients.  The authors lamented that there is little to no recognition for what patients like us go through after treatment, and that there are limited treatment options available due to lack of study, but also said they hoped to study some in the near future.  This was a hopeful sign that our common symptoms will soon be taken seriously!

     

  • mp327
    mp327 Member Posts: 4,440 Member

    Post pelvic radiation side effects

    Hello, I am 3 1/2 years out from my chemo-radiation treatment for anal cancer.  I have hip pain, bladder radiation cystitis, low back pain, and general pain in the pelvic region if I don't do regular exercise.  Sometimes if I exercise too strenuously I hurt a lot.  I too had a bone dexa before treatment that showed osteopenia, but I am not having another one as I don't want to be exposed to any more radiation.  I also worry about the cancer coming back, though so far all my checkups have been good.

    i have had gynecologists, urogynecologists, family practice, internal medicine and gastroenterologists all tell me that what I am presenting with is due to post- menopause and old age -- I am 57.  I tell them I've had radiation treatment, but they literally have no clue what that entails or does to patients.

    I just read two European studies about long term effects of pelvic radiation.  These symptoms we all have are definitely related to radiation therapy.  The studies also found that chemo increases the symptoms. The authors of both studies said the research on this subject is very limited.  Their conclusions were also interesting in that they showed that these symptoms are not merely age-related as the norms they used did not have the same rate of exhibiting theses symptoms as radiation patients.  The authors lamented that there is little to no recognition for what patients like us go through after treatment, and that there are limited treatment options available due to lack of study, but also said they hoped to study some in the near future.  This was a hopeful sign that our common symptoms will soon be taken seriously!

     

    Degnann

    Thanks for this information.  It seems all too obvious to me that radiation is a huge contributor to the hip/back/pelvic pain that so many of us who have had this treatment experience.  I never had such pain prior to treatment.

    If you read my thread where I posted the presentation I did on Saturday to many of the leading doctors internationally who treat anal cancer, you'll note that I mentioned my osteopenia and osteoporosis, which has been found on DEXA scans.  I thought it was very important to make this point, as it seems so common among us.

    Thanks again for your informative post!

    Martha

  • donnarush
    donnarush Member Posts: 20
    radiation and dr visit

    Hi again everyone. Went to my medical oncology visit yesterday. I was never so disgusted with a visit in all my life. He acted as if he couldn't wait to get rid of me. I told him about my chills with no fever. His response, "I Don't know" go figure. Wrote me a prescription for Vitamin d, prescription strength. Still doesn't think the radiation caused this. I give up. No one wants to help anymore. I guess I should be glad the cancer is gone for now. I just will live with the terrible aches and continue to move on. Hope everyone is doing well. Take good care and please feel free to offer any advice.  Thanks again...Donna

  • pializ
    pializ Member Posts: 508 Member
    donnarush said:

    radiation and dr visit

    Hi again everyone. Went to my medical oncology visit yesterday. I was never so disgusted with a visit in all my life. He acted as if he couldn't wait to get rid of me. I told him about my chills with no fever. His response, "I Don't know" go figure. Wrote me a prescription for Vitamin d, prescription strength. Still doesn't think the radiation caused this. I give up. No one wants to help anymore. I guess I should be glad the cancer is gone for now. I just will live with the terrible aches and continue to move on. Hope everyone is doing well. Take good care and please feel free to offer any advice.  Thanks again...Donna

    Degnnan

    The studies you mention sound interesting. Do you have the reference please?

    thanks

    Liz

  • GreenNative
    GreenNative Member Posts: 7 Member
    mp327 said:

    Degnann

    Thanks for this information.  It seems all too obvious to me that radiation is a huge contributor to the hip/back/pelvic pain that so many of us who have had this treatment experience.  I never had such pain prior to treatment.

    If you read my thread where I posted the presentation I did on Saturday to many of the leading doctors internationally who treat anal cancer, you'll note that I mentioned my osteopenia and osteoporosis, which has been found on DEXA scans.  I thought it was very important to make this point, as it seems so common among us.

    Thanks again for your informative post!

    Martha

    Pelvic Radiation Side Effects

    Hi Martha,

    You're welcome!  I did read your thread. Congratulations on getting to present!  It is encouraging to know that there are good, responsive physicians and other practioners that are out there.

    I am glad you mentioned your osteo status as the medical community needs to hear from us on these issues.  I agree with you that it is very important to make them aware of our shared experiences.

    N

     

     

  • GreenNative
    GreenNative Member Posts: 7 Member
    pializ said:

    Degnnan

    The studies you mention sound interesting. Do you have the reference please?

    thanks

    Liz

    Pelvic Radiation Side Effects

    Hi Liz,

    Yes I found them on the web.  The first is from the ncbi.nim.nih.gov site and is an article about survivors of cervical cancer, but they have similar treatment to those of us with anal cancer.  Here is the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096775/

    The second one is focused on gastrointestinal complications after pelvic radiation.  Here is the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774900/

    I was encouraged that they exist since I have not seen anything like them before, but that could simply be because I have not looked in the right place before now.

    I hope you find them as encouraging as I do,

     

    N

     

  • GreenNative
    GreenNative Member Posts: 7 Member
    donnarush said:

    radiation and dr visit

    Hi again everyone. Went to my medical oncology visit yesterday. I was never so disgusted with a visit in all my life. He acted as if he couldn't wait to get rid of me. I told him about my chills with no fever. His response, "I Don't know" go figure. Wrote me a prescription for Vitamin d, prescription strength. Still doesn't think the radiation caused this. I give up. No one wants to help anymore. I guess I should be glad the cancer is gone for now. I just will live with the terrible aches and continue to move on. Hope everyone is doing well. Take good care and please feel free to offer any advice.  Thanks again...Donna

    radiation and dr visit

    Hi Donna,

    I share your frustration!  Doctors have been unresponsive for the most part to my concerns as well.  My oncologist and surgeon (did not have surgery, but had to have one per the oncologis just in case), both are very good and sympathetic.  They "get it" a little better than any of the others, but they still have no answers.

    I read that Hyperbaric Oxygen Therapy has been approved for radiation side effects.  It is supposed to potentially improve bladder issues and radiation bone problems.  I am getting up my nerve to ask my oncologist if he would prescribe this for me.  I will need to check my insurance coverage first of course.  But I am also looking for relief.  I can't take waking up every night to pee, sometimes 2 and 3 times, along with pain in my hips for the rest of my life.  So I hope my doctor and insurance will be supportive of this plan.

    We are all in the same boat with this post pelvic radiation pain.  We should combine resources with cervical, bladder and prostate cancer survivors since they have many if not all the same symptoms as we do.  There is power as well as safety in numbers!

    Take care and I wish you peace,

    N

     

  • Didiabolical
    Didiabolical Member Posts: 18

    Post pelvic radiation side effects

    Hello, I am 3 1/2 years out from my chemo-radiation treatment for anal cancer.  I have hip pain, bladder radiation cystitis, low back pain, and general pain in the pelvic region if I don't do regular exercise.  Sometimes if I exercise too strenuously I hurt a lot.  I too had a bone dexa before treatment that showed osteopenia, but I am not having another one as I don't want to be exposed to any more radiation.  I also worry about the cancer coming back, though so far all my checkups have been good.

    i have had gynecologists, urogynecologists, family practice, internal medicine and gastroenterologists all tell me that what I am presenting with is due to post- menopause and old age -- I am 57.  I tell them I've had radiation treatment, but they literally have no clue what that entails or does to patients.

    I just read two European studies about long term effects of pelvic radiation.  These symptoms we all have are definitely related to radiation therapy.  The studies also found that chemo increases the symptoms. The authors of both studies said the research on this subject is very limited.  Their conclusions were also interesting in that they showed that these symptoms are not merely age-related as the norms they used did not have the same rate of exhibiting theses symptoms as radiation patients.  The authors lamented that there is little to no recognition for what patients like us go through after treatment, and that there are limited treatment options available due to lack of study, but also said they hoped to study some in the near future.  This was a hopeful sign that our common symptoms will soon be taken seriously!

     

    Good news about the european

    Good news about the european radiation studies-at least someone is taking radiation damage seriously. I have back pain, hip pain and leg pain which I mentioned to my oncologist at my last follow up but he said he'd never heard of radiation having these side effects...yeah right! I don't know why they all deny it. It's time the medical profession started taking notice of these side effects rather than burying their heads in the sand probably due to fear of litigation.

  • Didiabolical
    Didiabolical Member Posts: 18
    donnarush said:

    radiation and dr visit

    Hi again everyone. Went to my medical oncology visit yesterday. I was never so disgusted with a visit in all my life. He acted as if he couldn't wait to get rid of me. I told him about my chills with no fever. His response, "I Don't know" go figure. Wrote me a prescription for Vitamin d, prescription strength. Still doesn't think the radiation caused this. I give up. No one wants to help anymore. I guess I should be glad the cancer is gone for now. I just will live with the terrible aches and continue to move on. Hope everyone is doing well. Take good care and please feel free to offer any advice.  Thanks again...Donna

    I feel your pain

    hi Donnarush,

    ive found that light Pilates helps with hip and leg pain -I use Pilates precision toning dvd with Jennifer Kries. There's a 15 minute workout which you can do every day. I notice my leg/back pain much more when I haven't had chance to do it. 

    I think the medical profession in general are fearful of acknowledging this side effect of radiation therapy due to the possibility of litigation? Consequently they don't seem to gather the data about the side effects in any systematic way which means it never gets researched.

  • mp327
    mp327 Member Posts: 4,440 Member

    I feel your pain

    hi Donnarush,

    ive found that light Pilates helps with hip and leg pain -I use Pilates precision toning dvd with Jennifer Kries. There's a 15 minute workout which you can do every day. I notice my leg/back pain much more when I haven't had chance to do it. 

    I think the medical profession in general are fearful of acknowledging this side effect of radiation therapy due to the possibility of litigation? Consequently they don't seem to gather the data about the side effects in any systematic way which means it never gets researched.

    Didiabolical

    I agree that some doctors may try to ignore our complaints about the hip, pelvic and leg pain.  In my case, my doctor has listened and has even referred me to an orthopedic specialist to have my hip checked out.  However, I distinctly remember reading the release form given me to sign at the radiation center before I started treatment.  It listed all potential side effects, both short-term and long-term, that could occur as a result of the treatment, and I'm sure bone and joint issues were listed.  I had to sign the form, stating that I understood the risks and absolved the center of any responsibility.  I am betting that each and every one of us had to sign such a form, due to the fact that we live in a very litigious society.  Any chance of winning a lawsuit would probably be nil. 

    I hurt--hips, pelvis, femurs, back--yes, I hurt!  I have osteopenia in my left hip and my lumbar spine and osteoporosis in my right hip.  Am I happy about that?  NO!  However, I am a small-boned woman and with or without radiation treatment, was pre-disposed to such conditions.  Add to that the menopause and I really didn't stand a chance of avoiding any of these things.  I am positive that radiation treatment didn't help, but it did save my life, so for me to be angry about what it may or may not have done to my bones seems like a waste of emotions.  That's just how I look at it.  Radiation has saved us from cancer, but like everything else, there are trade-offs.

    Martha

  • eihtak
    eihtak Member Posts: 1,473 Member
    mp327 said:

    Didiabolical

    I agree that some doctors may try to ignore our complaints about the hip, pelvic and leg pain.  In my case, my doctor has listened and has even referred me to an orthopedic specialist to have my hip checked out.  However, I distinctly remember reading the release form given me to sign at the radiation center before I started treatment.  It listed all potential side effects, both short-term and long-term, that could occur as a result of the treatment, and I'm sure bone and joint issues were listed.  I had to sign the form, stating that I understood the risks and absolved the center of any responsibility.  I am betting that each and every one of us had to sign such a form, due to the fact that we live in a very litigious society.  Any chance of winning a lawsuit would probably be nil. 

    I hurt--hips, pelvis, femurs, back--yes, I hurt!  I have osteopenia in my left hip and my lumbar spine and osteoporosis in my right hip.  Am I happy about that?  NO!  However, I am a small-boned woman and with or without radiation treatment, was pre-disposed to such conditions.  Add to that the menopause and I really didn't stand a chance of avoiding any of these things.  I am positive that radiation treatment didn't help, but it did save my life, so for me to be angry about what it may or may not have done to my bones seems like a waste of emotions.  That's just how I look at it.  Radiation has saved us from cancer, but like everything else, there are trade-offs.

    Martha

    Martha.....

    I completely remember signing a release as well......and I agree, there is a trade off but I am alive!

    katheryn

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member

    Post pelvic radiation side effects

    Hello, I am 3 1/2 years out from my chemo-radiation treatment for anal cancer.  I have hip pain, bladder radiation cystitis, low back pain, and general pain in the pelvic region if I don't do regular exercise.  Sometimes if I exercise too strenuously I hurt a lot.  I too had a bone dexa before treatment that showed osteopenia, but I am not having another one as I don't want to be exposed to any more radiation.  I also worry about the cancer coming back, though so far all my checkups have been good.

    i have had gynecologists, urogynecologists, family practice, internal medicine and gastroenterologists all tell me that what I am presenting with is due to post- menopause and old age -- I am 57.  I tell them I've had radiation treatment, but they literally have no clue what that entails or does to patients.

    I just read two European studies about long term effects of pelvic radiation.  These symptoms we all have are definitely related to radiation therapy.  The studies also found that chemo increases the symptoms. The authors of both studies said the research on this subject is very limited.  Their conclusions were also interesting in that they showed that these symptoms are not merely age-related as the norms they used did not have the same rate of exhibiting theses symptoms as radiation patients.  The authors lamented that there is little to no recognition for what patients like us go through after treatment, and that there are limited treatment options available due to lack of study, but also said they hoped to study some in the near future.  This was a hopeful sign that our common symptoms will soon be taken seriously!

     

    Another thing to try.

    The oncologist sent me for a vaginal exam. With vaginal stenosis, it was excrutiating - the gynecologist kept yelling at me to relax so it won't hurt. Yeah! When the pap came back wonky, she wanted to biopsy me. Fortunately, my radiation oncologist recommended a gynecological oncologist. This man was so gentle and kind that it barely hurt. He did a colposcopy on the spot and said that no biopsy was needed. His practise doesn't do paps on women who had pelvic radiation because the cervical cells are so injured that the results are frequently untrustworthy. He has a lot of experience with pelvic radiation and will be happy to follow me from now on. He put me on Vagifem and has me getting a bone density scan in 2 weeks.

    Maybe this is an MD variety for you to look into?