Effects of Pelvic Radiation

tallydega
tallydega Member Posts: 8
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
Has anyone ever experienced tingling and numbnes in the legs after completing pelvic radiation treatments? I completed treatment of 5 weeks of external and 3 treatments of internal pelvic radiation. My my legs tire very easily now and ache all of the time. Drs say this is not radiation damage. The radiation was done because after the cancer returned the 2nd time. I had a modified radical hysterectomy the first time, in which I was supposed to be 100% clear, unfortunately that did not work.

Comments

  • Bon1978
    Bon1978 Member Posts: 16
    #2
    I also have tingling and numbness in my legs. Did they remove lymphnodes during your surgery? I was told that the problems with my legs, (which also get swollen) was lymphadema caused by the lymphnode removal. My symptoms didn't start until a year or two after surgery and radiation treatments
  • camijo
    camijo Member Posts: 3
    #3
    I had chemo/radiation for cervical cancer last fall. I too have tingling/crawly feelings in my legs on occasion. I haven't asked about it yet, but I fully believe it has to be from the radiation. Hang in there!
  • tallydega
    tallydega Member Posts: 8
    #4
    Bon, yes they did remove lymph nodes during the hysterectomy. The hysterectomy was done in Jan 2004. Since all my margins were clear, the doctors told me I did not have to come back until August (this would have been my yearly anyway). They did not call me until the end of September, that my test came back as atypical. Once they did, they decided that I did not need to come back until October to be tested again. By the time that they retested me and that test led to another biopsy, the cancer was already locally advanced. I had a 2nd surgery to cut out what they could, but this time there were no clear margins so they decided to do the radiation. The stage I was in, the cancer should not have recurred. They say I was 100% cured but according to the Radiation Oncologist, I was the 1% in which it does recurr. I just have the feeling that they are missing something. My father passed away from squamous cell, however he had leukemia that proceded the squamous cell. First it appeared in his lung, he had surgery and chemo and he was cured so they say, then 6 months later they found a 7 inch tumor in his liver. There really was nothing they could do and I watched him wilt away. I don't want to end up like this. This time they are not telling me one way or another if they got it all. Its been 5 months since completing radiation, and they havent even tested me. They say its all visual. If they wouldn't have done the biopsy, they would have missed it the 2nd time around, so how can they say that it is all visual. I am very worried about the pain and tingling...I wake up in a huge amount of pain every night, so I am sure I am not getting enough sleep with this. I have brought this up time after time to my Oncologist and Radiation Oncologist. I even went to see a neurologist and had MRI's on my neck, thoracic spine and lumbar and I do not have spinal cord compression. I do have a moderate herniated disk, but the neurologist think that this is an incedental finding and is not causing the pain and tingling. He did say, that he thought it was caused by the radiation. Pain killers work but they are so temporary and I have a day time job so I need to be careful when I take this medication. Any insight to this would be helpful.
  • tallydega
    tallydega Member Posts: 8
    #5
    camijo said:

    I had chemo/radiation for cervical cancer last fall. I too have tingling/crawly feelings in my legs on occasion. I haven't asked about it yet, but I fully believe it has to be from the radiation. Hang in there!

    Camijo, thanks..you too hang in there. Sounds like you had a very trying experience with the chemo on top of the radiation. It just stinks that we have to go thru this and wonder day in and day out if this is going to work or not. I hope with all my heart that everything will be ok with you and the others. If you find out anything from your doctor let me know. I would love to get to the bottom of this.
  • Bon1978
    Bon1978 Member Posts: 16
    #6
    tallydega said:

    Bon, yes they did remove lymph nodes during the hysterectomy. The hysterectomy was done in Jan 2004. Since all my margins were clear, the doctors told me I did not have to come back until August (this would have been my yearly anyway). They did not call me until the end of September, that my test came back as atypical. Once they did, they decided that I did not need to come back until October to be tested again. By the time that they retested me and that test led to another biopsy, the cancer was already locally advanced. I had a 2nd surgery to cut out what they could, but this time there were no clear margins so they decided to do the radiation. The stage I was in, the cancer should not have recurred. They say I was 100% cured but according to the Radiation Oncologist, I was the 1% in which it does recurr. I just have the feeling that they are missing something. My father passed away from squamous cell, however he had leukemia that proceded the squamous cell. First it appeared in his lung, he had surgery and chemo and he was cured so they say, then 6 months later they found a 7 inch tumor in his liver. There really was nothing they could do and I watched him wilt away. I don't want to end up like this. This time they are not telling me one way or another if they got it all. Its been 5 months since completing radiation, and they havent even tested me. They say its all visual. If they wouldn't have done the biopsy, they would have missed it the 2nd time around, so how can they say that it is all visual. I am very worried about the pain and tingling...I wake up in a huge amount of pain every night, so I am sure I am not getting enough sleep with this. I have brought this up time after time to my Oncologist and Radiation Oncologist. I even went to see a neurologist and had MRI's on my neck, thoracic spine and lumbar and I do not have spinal cord compression. I do have a moderate herniated disk, but the neurologist think that this is an incedental finding and is not causing the pain and tingling. He did say, that he thought it was caused by the radiation. Pain killers work but they are so temporary and I have a day time job so I need to be careful when I take this medication. Any insight to this would be helpful.

    So sorry to hear about everything you've been through. I know the last thing you want to do is see another doctor. But, have you tried a physical therapist? The pain in my leg was so horrible that I couldn't even barely walk. like you said, sleeping was another whole ordeal. Do you have any type of swelling? I started wearing a stocking type thing, it really sucked- but helped tremendously.

    I hate it when dr.s give us percentages. Wow, you were only in the 1% in which it recurs, how lucky! They tell me all the time I am only in the 5% who get so damaged from all the radiation. I want to know where these other people are. I don't here any stories about people going through what we've been through and not having tons of on going problems and continued physical difficulties. Well, I guess that's enough preaching for now, I hope you start to feel better soon.
  • Friend01
    Friend01 Member Posts: 3
    #7
    Bon1978 said:

    So sorry to hear about everything you've been through. I know the last thing you want to do is see another doctor. But, have you tried a physical therapist? The pain in my leg was so horrible that I couldn't even barely walk. like you said, sleeping was another whole ordeal. Do you have any type of swelling? I started wearing a stocking type thing, it really sucked- but helped tremendously.

    I hate it when dr.s give us percentages. Wow, you were only in the 1% in which it recurs, how lucky! They tell me all the time I am only in the 5% who get so damaged from all the radiation. I want to know where these other people are. I don't here any stories about people going through what we've been through and not having tons of on going problems and continued physical difficulties. Well, I guess that's enough preaching for now, I hope you start to feel better soon.

    My best friend completed treatments for cervical cancer which included internal radiation. She emerged from treatment feeling great and was given a clean bill of health!
    She started having problems a month or so after the last internal treatment and the doctor said she had scar tissue in her colon. So, she had to have a colostomy bag. This was to be temporary while the colon healed, but that is not the case.She has had extreme pain in her colon and rectum. After steroids and various pain medications that did not solve the problem, she went into the hospital to have a blood transfusion. She was anemic and has lost a lot of weight due to a loss of appetite and nausea. She also has a fever. After doing tests, the doctor says she has radiation necrosis which has caused a hole between her vagina and rectum. The necrosis is causing her fever as well. The necrosis is extensive and the doctor is suggesting a full removal of colon,uterus,bladder, etc.. This would mean permanent bags.
    Has anyone experienced such severe radiation damage? They were so careful to protect her bladder (which is fine) but the radiation damaged everything else.
    She is at a loss for what to do, but wants to live comfortably. She is also upset about not being warned about this radiation damage being a side effect.
    She is cancer free, thankfully. But, the pain has caused her to be very ill.
    Thank you for any input I can pass along to her.
    Jean
  • Bon1978
    Bon1978 Member Posts: 16
    #8
    Friend01 said:

    My best friend completed treatments for cervical cancer which included internal radiation. She emerged from treatment feeling great and was given a clean bill of health!
    She started having problems a month or so after the last internal treatment and the doctor said she had scar tissue in her colon. So, she had to have a colostomy bag. This was to be temporary while the colon healed, but that is not the case.She has had extreme pain in her colon and rectum. After steroids and various pain medications that did not solve the problem, she went into the hospital to have a blood transfusion. She was anemic and has lost a lot of weight due to a loss of appetite and nausea. She also has a fever. After doing tests, the doctor says she has radiation necrosis which has caused a hole between her vagina and rectum. The necrosis is causing her fever as well. The necrosis is extensive and the doctor is suggesting a full removal of colon,uterus,bladder, etc.. This would mean permanent bags.
    Has anyone experienced such severe radiation damage? They were so careful to protect her bladder (which is fine) but the radiation damaged everything else.
    She is at a loss for what to do, but wants to live comfortably. She is also upset about not being warned about this radiation damage being a side effect.
    She is cancer free, thankfully. But, the pain has caused her to be very ill.
    Thank you for any input I can pass along to her.
    Jean

    Jean,
    Your friends story sounds awful. I wonder have the dr.'s thought of any other alternatives besides simply removal of everything? I also had extreme damage to my colon, small intestine, etc. the dr.'s were able to do a small bowel resection. Not the easiest surgery and I am by no means 100%, but I don't have a bag. I am always anemic because of removal of my ileum which absorbs vitamins in your body. I've lost close to 50 pounds and was on TPN for months to keep my weight steady.

    Eventhough my radiation damage hasn't been as severe as your friends, have they considered Hyperbaric Oxygen Treatments to help with the radiation damage? I had a urologist who wanted to remove my bladder and my oncologist wouldn't have it. has she seen specialists and gotten other opinions? I would get as many opinions as possible before letting them remove everything.
  • tallydega
    tallydega Member Posts: 8
    #9
    Bon1978 said:

    So sorry to hear about everything you've been through. I know the last thing you want to do is see another doctor. But, have you tried a physical therapist? The pain in my leg was so horrible that I couldn't even barely walk. like you said, sleeping was another whole ordeal. Do you have any type of swelling? I started wearing a stocking type thing, it really sucked- but helped tremendously.

    I hate it when dr.s give us percentages. Wow, you were only in the 1% in which it recurs, how lucky! They tell me all the time I am only in the 5% who get so damaged from all the radiation. I want to know where these other people are. I don't here any stories about people going through what we've been through and not having tons of on going problems and continued physical difficulties. Well, I guess that's enough preaching for now, I hope you start to feel better soon.

    hi Bon, just sent my youngest daughter to college this weekend, it was pretty emotional...and I will miss her..well now that I got that out and to answer your question, no i have not tried physical therapy and no I do not have any swelling that I can tell, except for a little water retention at least I think. I had a really bad infection last week for an tooth abscess. It came on so quick and my tooth didn't even hurt. The dentist ended up pulling it because I was on the verge of being septic from it. They put me on 2000 mg of penicillan and the funny thing about that is my legs are not tingling near as bad, but my hips are still aching....I wonder if maybe I had the infection for a while without knowing it. I am not one to run fevers when I am sick..all I know is I was very runned down and tired all of the time, but since being on the antibiotic for a week I feel much better. I keep telling myself it couldn't be as simple as that but maybe it is. I finish the medication tomorrow so we'll see.

    Your right doctors shouldn't be able to give a percentage because everybody is different. The Radiation Oncologist gave me an 80% chance that the radiation would work, but then of course there is always the chance of other cancers popping up..how ironic is that? I can say I've been lucky. As my children have grown, I've put most of my time and energy into them and never really gave myself a second thought, I have two in college and 2 in highschool and it would be nice to let them know that everything is ok. I feel like I am lieing to them at times when I tell them that when I don't really know if everything is really ok. I want so much for this whole thing to go away. I know my husband worries about it, but we never talk about it. Can I ask you how soon after completing the radiation did you get a Pap test? I'm just curious.
  • camijo
    camijo Member Posts: 3
    #10
    tallydega said:

    Camijo, thanks..you too hang in there. Sounds like you had a very trying experience with the chemo on top of the radiation. It just stinks that we have to go thru this and wonder day in and day out if this is going to work or not. I hope with all my heart that everything will be ok with you and the others. If you find out anything from your doctor let me know. I would love to get to the bottom of this.

    Hello again. Hope you're doing well. How are your legs doing? Mine get weak also and I'm sorry but I truly believe it's from the radiation. I also still have very "weak all over" days. I'm trying a new doc next week. The oncologist that I "had" to use does not communicate at all. He was the only one if our area and our insurance would not cover going out of state. I did go for a second opinion before proceeding with treatments last fall though. I've just got to have a doc I can talk with though. He explains nothing. I had a central line for my chemo and he didn't even tell me I had to have daily cleanings, etc for it. They told me that when I went for radiation. Well, I'll quit complaining now!! Hope your legs are doing better. CamiJo
  • hope7
    hope7 Member Posts: 5
    #11
    I had a radical Hysterectomy in 99, Then it came back & I had external & internal radiation. Since the radiation in 1/1994, I have suffered from right hip, pelvic pain & leg pains. I also tire easily in the legs. But the worse is the low back pain. It is worse now, than it has been in the past.
  • tallydega
    tallydega Member Posts: 8
    #12
    hope7 said:

    I had a radical Hysterectomy in 99, Then it came back & I had external & internal radiation. Since the radiation in 1/1994, I have suffered from right hip, pelvic pain & leg pains. I also tire easily in the legs. But the worse is the low back pain. It is worse now, than it has been in the past.

    hope, did you get the radiation in 2004? What stage did they say that you were in, just curious.
  • Friend01
    Friend01 Member Posts: 3
    #13
    Bon1978 said:

    Jean,
    Your friends story sounds awful. I wonder have the dr.'s thought of any other alternatives besides simply removal of everything? I also had extreme damage to my colon, small intestine, etc. the dr.'s were able to do a small bowel resection. Not the easiest surgery and I am by no means 100%, but I don't have a bag. I am always anemic because of removal of my ileum which absorbs vitamins in your body. I've lost close to 50 pounds and was on TPN for months to keep my weight steady.

    Eventhough my radiation damage hasn't been as severe as your friends, have they considered Hyperbaric Oxygen Treatments to help with the radiation damage? I had a urologist who wanted to remove my bladder and my oncologist wouldn't have it. has she seen specialists and gotten other opinions? I would get as many opinions as possible before letting them remove everything.

    Hi
    Thank you for the reply. My friend's radation doctor is going to see about the Hyperbaric treatments! She also told her to make an appointment to come and see her as the radiation doctor is the one who can deal with the damage caused by the initial treatments and offer solutions. She was so relieved after discussing this with the radiation doctor.

    I got a phone call this morning, however, that changed everything. She is back in the hospital and they have discovered a small mass in her upper chest region. They will perform a PET and biopsy on Monday morning. We are all devastated. Any support or suggestions you can all offer would be appreciated. I pass along on messages to my friend and her husband.
    God Bless
    Jean
  • PeachyLife
    PeachyLife Member Posts: 1
    #14
    hope7 said:

    I had a radical Hysterectomy in 99, Then it came back & I had external & internal radiation. Since the radiation in 1/1994, I have suffered from right hip, pelvic pain & leg pains. I also tire easily in the legs. But the worse is the low back pain. It is worse now, than it has been in the past.

    This topic is very interesting and it seems lots of us are experiencing similar symptoms. I had lymph nodes removed during surgery for cervical cancer followed by chemo and internal/external radiation. I have many strange side effects including very achy tired legs (like i'm wearing lead boots) lower back pain and pelvic pain. Alongside all of this I have bowel urgency with loose stools (when I've got to go, I've REALLY got to go). The same for my bladder. None of this was a problem before. Not sure what there is that can be done about it. My symptoms began a couple of months after my last internal radiation, which was in Feb 05.

    Thanks to all for sharing.
    Kayla
  • 1jml
    1jml Member Posts: 12 Member
    #15
    PeachyLife said:

    This topic is very interesting and it seems lots of us are experiencing similar symptoms. I had lymph nodes removed during surgery for cervical cancer followed by chemo and internal/external radiation. I have many strange side effects including very achy tired legs (like i'm wearing lead boots) lower back pain and pelvic pain. Alongside all of this I have bowel urgency with loose stools (when I've got to go, I've REALLY got to go). The same for my bladder. None of this was a problem before. Not sure what there is that can be done about it. My symptoms began a couple of months after my last internal radiation, which was in Feb 05.

    Thanks to all for sharing.
    Kayla

    Hi-
    In December, it will be my two year anniversary since completing chemo, internal/external radiation. My side effects were the same. I had extreme nerve damage to my legs. I went to a specialist who recommended physical therapy. After 3 months I went back and the dr said my condition was getting worse. (which I already knew). My left leg was so bad, I walked with a hard limp and little strength to get myself up the stairs. finally, someone recommended I go to a chiropractor. After one week, 2 sessions, I could finally see some improvement. Today, i am not only walking like a normal person, I am wearing heals (something I wasn't able to do for a long time! ) I hope this info helps.
  • Unknown
    Unknown
    #16
    Hi, I had chemo-radiation & internal radiation 11 years ago for cervical cancer, About 2-3 months after my treatments I had started getting the tigling and numbness in my legs then my left hip started hurting could not walk much. Went to Dr.s after Dr.s Finally they said it is scar tissue, also the nerve in my left hip has scar tissue around it. I done the physical therapy a bunch of times!!! Did not help. I go to a pain Dr. now for the past 4 years, every 3 months I get a nerve block in my left hip/groin area, It help before but now the pain comes back after 4-5 days. I have been in pain for years and on all differnet kinds of meds. Nothing really helps for long periods,
  • kyhunny
    kyhunny Member Posts: 5
    #17
    unknown said:

    Hi, I had chemo-radiation & internal radiation 11 years ago for cervical cancer, About 2-3 months after my treatments I had started getting the tigling and numbness in my legs then my left hip started hurting could not walk much. Went to Dr.s after Dr.s Finally they said it is scar tissue, also the nerve in my left hip has scar tissue around it. I done the physical therapy a bunch of times!!! Did not help. I go to a pain Dr. now for the past 4 years, every 3 months I get a nerve block in my left hip/groin area, It help before but now the pain comes back after 4-5 days. I have been in pain for years and on all differnet kinds of meds. Nothing really helps for long periods,

    Hello. I had radiation due to cervical cancer 10 months ago and I was also told that I was cured and would live a long life. About 2 weeks after my last radiation treatment, I had a pelvic exam and a pap smear. Sure enough, my cancer had come back and I ended up having to have a pelvic exenteration. Since the radiation treatments, my lower back hurts all the time, as do my hips, my pelvic area where my lymph nodes were removed, bleeding hemmorhoids, and my left side hurts all the time. With all these aches and pains going on, I don't know if it's due to the radiation, or if the cancer has come back again.

    Monica
  • Lynnmg
    Lynnmg Member Posts: 3
    #18
    I had both internal and external radiation the spring of '04. Then, beginning this past spring started experiencing weakness in left leg. Have gotten a brace for 'drop foot' and can hardly pick up that leg - now the right leg is getting weak. Fell in Dec and fractured my left leg so have had a gel cast and have been using a wheel chair, walker and/or cane to get around. Now the doctor has suggested going on 500mg of methylprednis once weekly for 3 months to see if it might help the nerve damage/scar tissue. Has anyone ever been involved in such a treatment?
  • vickistage@yahoo.com
    vickistage@yahoo.com Member Posts: 1
    #19
    Lynnmg said:

    I had both internal and external radiation the spring of '04. Then, beginning this past spring started experiencing weakness in left leg. Have gotten a brace for 'drop foot' and can hardly pick up that leg - now the right leg is getting weak. Fell in Dec and fractured my left leg so have had a gel cast and have been using a wheel chair, walker and/or cane to get around. Now the doctor has suggested going on 500mg of methylprednis once weekly for 3 months to see if it might help the nerve damage/scar tissue. Has anyone ever been involved in such a treatment?

    Pelvic Radition Nerve Damage
    I thought I was the only one going through this. My right leg and abdomen are affected and I actually thought I had a tumor on my right side. I think one of the comments hit the nail on the head when she said it was like wearing a lead boot. It's all I can do to get up the stairs and any excessive walking (like at Walmart!!) wears me out so badly I think I'll never get out of the store. I'm on pain medication and it does help tremendously but is there any other treatment that has worked for anyone else?
  • neetnpete
    neetnpete Member Posts: 1
    #20
    vickistage@yahoo.com said:

    Pelvic Radition Nerve Damage
    I thought I was the only one going through this. My right leg and abdomen are affected and I actually thought I had a tumor on my right side. I think one of the comments hit the nail on the head when she said it was like wearing a lead boot. It's all I can do to get up the stairs and any excessive walking (like at Walmart!!) wears me out so badly I think I'll never get out of the store. I'm on pain medication and it does help tremendously but is there any other treatment that has worked for anyone else?

    Pelvic radiation

    I went into remission 2 years ago. My consultant warned me that some of his patients suffer from aching legs and hips around 2 years after treatment and here we go! Yes I agree lead boots is a very good description. By reading other posts it appears that the medical profession keep denying a link between these aches and radiation - maybe they think we want to sue them! All I really want to know is whether there is a way to help counteract these pains without having to take medication, and will this subside after time. Why wont anyone give constructive help to us?

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #21
    neetnpete said:

    Pelvic radiation

    I went into remission 2 years ago. My consultant warned me that some of his patients suffer from aching legs and hips around 2 years after treatment and here we go! Yes I agree lead boots is a very good description. By reading other posts it appears that the medical profession keep denying a link between these aches and radiation - maybe they think we want to sue them! All I really want to know is whether there is a way to help counteract these pains without having to take medication, and will this subside after time. Why wont anyone give constructive help to us?

     

    I did a search on this topic just the other day!

    The very first chemo of Taxol/Carbo brought on joint pain in my hips and knees that was very difficult.  Fortunately, to my releif, none of the subsequent chemos were as bad and I thought it was over.  The chemo/radiation (ext and int)/chemo ended and I was doing great but a few months after that the joint pain was back and I begged my twin sister to find me something to help.  Glucosamine stuff never worked and she saw on a TV where eggshell membrane was the new glucosamine.  I got some and it was a miracle but the pain is back.  I still take the eggshell membrane for fear it would be worse than it is if I stopped but I am hoping there is something else.

    It was just this past year when they finally acknowledged chemo brain, which was laughable to all of us as we KNOW it is very real!  It was never as bad as it was after the first chemo (I believe my body was just APPALLED at what I was doing to it and was having a visceral reaction to the drugs) but I still struggle with names and words that I never did before.  Very frustrating.  

    Have none of the docturs had family go through treatment and see all these things for themselves?

    In any case, like you, I am searching for something to help. 

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