post radiation side effects

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

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 said:

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!

 

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 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

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

thanks

Liz

pializ said:

Degnnan

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

thanks

Liz

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 said:

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 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 said:

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.

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

GreenNative said:

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!

 

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?