Radiation Side Effects

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Comments

  • tobgah
    tobgah Member Posts: 6
    lemonade said:

    Pain
    I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

    I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

    Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

    I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

    I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

    Barbara

    Pain in the pelvic region, hip and lower back
    Hi Barbara,
    I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
    It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour.

    After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!
  • tobgah
    tobgah Member Posts: 6
    lemonade said:

    Pain
    I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

    I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

    Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

    I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

    I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

    Barbara

    Pain in the pelvic region, hip and lower back
    Hi Barbara,
    I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
    It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour.

    After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!
  • tobgah
    tobgah Member Posts: 6
    lemonade said:

    Pain
    I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

    I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

    Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

    I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

    I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

    Barbara

    Pain in the pelvic region, hip and lower back
    Hi Barbara,
    I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
    It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour.

    After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!
  • tobgah
    tobgah Member Posts: 6
    lemonade said:

    Pain
    I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

    I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

    Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

    I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

    I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

    Barbara

    Pain in the pelvic region, hip and lower back
    Hi Barbara,
    I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
    It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour. Also, I cannot sit down straight for more than 45 minutes as the pain becomes intense in my tail bone and hip area and lower back.

    After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!
  • sandysp
    sandysp Member Posts: 868 Member
    Worden4 said:

    Unbalanced
    Hi, I have had problems with balance every since I had my radiation. I have come close to falling a few times. If it would not have been for something close by to grab or a family member I would have. I have told my doctor about this many times. Some days I can walk better than others, but I have had problems ever since the radiation. My doctor has been refusing to give me any pain pills for quite some time. I rushed myself off of them and had to fight ever time after that to get any type of medication to the edge off so I can get around. I think he let me have maybe three prescriptions over about a 8 month period of time, and then told me no more. Yay me. All because I am allergic to some of the milder meds, he has decided I can't have any meds. I haven't had pain meds in over a year and the pain on many days in severe. Sometimes it is just the weakness in the muscles driving me mentally crazy as I can't do many things, but there are days were some pain meds would sure help me get through. The lower back, the hips, the thighs, and I already had bad knees before all of this and have arthritis so yeah, this is just wonderful when trying to get around. I have used canes off and on throughout my recovery and it helps but I just feel stupid having to use canes at my age. I was caring for the elderly and mentally challenged before all of this. I would pick up clients and carry them from their beds to chairs, and back, or from wheelchairs to beds or chairs, and now I can hold a baby but I don't trust myself to walk around with one. I have had days where I have to tell my legs to move many times before it seems the signal will get down to my legs from my brain. The doctors have been told of this also on many occasions. Sometimes my husband just gets up and comes to move my leg for me so I can get it started on moving. I do a lot of leg lifts throughout the day, and bending and stretching also. It helps, but not much.

    Pain Management
    See if you can find a physician who specializes in Pain Management. Some doctors are just incapable of treating pain issues. I have a specialist in that area. I do not abuse medication. But when the pain gets the best of me, something that only now happens every 2-3 weeks, I find that one pill can roll it back and I become myself again. Even the Pain Manager doesn't exactly know why this is since the pain pill is only for an 8 hour period. My guess is that just the relief of most of the pain for a short period of time relaxes my neuro muscular system and leaves me much better off. Also, I am treated with Lyrica - 150 miligrams 3 times a day. I do not drink, exercise regularly (at least five days a week) and eat a decent healthy diet as I like to cook and thank God have had the energy to do that. I believe in Chi Gung and Tai Chi which I do for 20 minutes most days, and now am up to fifteen miles a week on my spin bike and walk our dog a mile every day. But that being said, I have very a very stiff and my thighs burn down the back most of the time. When the pain is bad my legs burn so much they keep me from sleeping. This is when, usually, I throw in the towel and take a pill. My husband thanks me as by this time I am so grumpy it's very difficult to be around me.

    That being said, I was T2N1MO when diagnosed and very symptomatic. I could not sit for any length of time without huge spasms down my legs which would cause my neck to arch. It was impossible for me to enjoy concerts, etc. and working was getting to be pretty much impossible since I am a realtor and my job involves a lot of driving and working at a computer. (I have not returned to this job since it is just too stressful for me right now). My music job requires me to sit for rehearsals which caused the spasms to continue most of the night. I have returned to that job and am doing well at it. All I am saying is that the suffering was worse from the cancer than from the treatment. So ours was a bitter fate when we ever got the first invasive cancer cell in our bodies. But I am so grateful to the Radiologists at Sloan Kettering who treated me. They were wonderful. We cannot be cured through chemo alone. Radiation, particularly today's radiation remains, until a better cure can be found, a blessing to us.
  • Ann_i_
    Ann_i_ Member Posts: 47

    radiation side effects
    I also completed chemo/rad in October 2009. Since then I had a colostomy (permanent)May 2010 as the chemo/radiation did not work.The wound abcessed and had a 2nd surgery in Sept 2010 since that time I have home health nurse went on a wound vac and now preparing for hyperberic to try to heal the wound. My lower back and lifting and moving in general is very difficult. From what my Doctors say all of my problems are a result of radiation..if I had to do it over I would never have had the radiation treatment, it did much more damage than good. My Doctors never advised on these severe side effects. My life has changed drastically over the past 11 months and feel like it will never improve. I live off of Oxycodone Oxycontin and Lyrica without which I would not be able to move. I am hoping that this wound, which needless to say, is a pain in the a--!!literally. In addition to the anal cancer I have very severe psoriasis which is also contributing to my pain levels. Life is not fun at the present.

    Psoriasis with colostomy
    I also have Psoriasis and a colostomy (though currently labeled temporary.)

    My psoriasis has added complications, trying to maintain a waffer over my stoma while having an allergic reaction to adhesives and then having the blisters turn into psoriasis has made life with a colostomy interesting. (to say the least)

    My elbows are bad (mostly because I pretty much lived with supporting my weight on them and still do to a large extent. Just can't seem to break the habit now.)

    I'm currently going through a break out phase with my psoriasis so my arse and hips and legs are breaking out, the area under the waffer is all broken out and my hands are breaking out. (I don't usually have breakouts on my hands so I get worried when it hits my hands/palms/soles of my feet.) I'm hoping the break out won't get too severe at this time. (I've got enough on my plate.)
  • myrtletree
    myrtletree Member Posts: 6
    hi, i had rectal cancer.
    hi, i had rectal cancer. treatment was chemo and radiation. permanent colostomy, but severe problems with growing lower back, glute, piraformis,and burning nerve pain. finally after a lot of research and fronting up to my colostomy nurse found out it is common to have severe nerve pain after radiation plus nerve pain from the scar tissue in the rectal area. don,t know why specialists and doctors are not open about this side effect. went on to strong antiflammitories, hip, glute and piriformis stretches, and lower back extensions with a back roll to stretch out scar tissue. my infrared massager is wonderful. i massage (with infrared light on ) lower back thigh piriformis and around where the scar tissue is located. after 3 months i went from a 10 to a 4 strength pain level. a lot of focus and hard work needed but hope this helps someone my colostomy nurse is passing this on to her clients. hope this helps someone. i can now walk daily with minimum pain but still pain on sitting in the evening. i have a better quality of life. unrelenting pain can be so debilitating blessings.
  • WashedupHasbeen
    WashedupHasbeen Member Posts: 5
    Side FX
    Changed my life forever. And not in the best of ways. Yes I'm still disease free (since tx ended, 01/06); but sex for me is a thing of the past... Also, had a *real bad* case of radiation proctitis for a good 5 years or so afterward. Contributed to many, many embarrassing & downright awful situations/experiences. (And forced my resignation from a very promising professional position.) It's finally cleared up now, (I think!) for the most part; but I still occasionally struggle with bowel control & elimination issues. Yes, I do praise God, that He's seen fit to spare my life this way -- through that course of treatment, etc -- from that dread disease (in probably the worst place imaginable to have it - IMHO!) But, gosh, I wish I could give my wife a real good... Just wasn't in His Plan, for my life after age 45 I guess. Overall, I have to say it's great (*WONDERFUL!*) to still be here, & to be disease-free... But I ain't the man I used to be!
  • sandysp
    sandysp Member Posts: 868 Member

    hi, i had rectal cancer.
    hi, i had rectal cancer. treatment was chemo and radiation. permanent colostomy, but severe problems with growing lower back, glute, piraformis,and burning nerve pain. finally after a lot of research and fronting up to my colostomy nurse found out it is common to have severe nerve pain after radiation plus nerve pain from the scar tissue in the rectal area. don,t know why specialists and doctors are not open about this side effect. went on to strong antiflammitories, hip, glute and piriformis stretches, and lower back extensions with a back roll to stretch out scar tissue. my infrared massager is wonderful. i massage (with infrared light on ) lower back thigh piriformis and around where the scar tissue is located. after 3 months i went from a 10 to a 4 strength pain level. a lot of focus and hard work needed but hope this helps someone my colostomy nurse is passing this on to her clients. hope this helps someone. i can now walk daily with minimum pain but still pain on sitting in the evening. i have a better quality of life. unrelenting pain can be so debilitating blessings.

    Pain from sitting
    I think it may be the high humidity, but I have to carry my pillow (a doughnut) with me again for the last few weeks (months). But I don't feel embarrassed about carrying the pillow around like I used to. It's just part of my wardrobe for the time being. I feels like it hurts in the low back bone and burns in my hip sockets lately. My doctor ordered a CT scan with contrast rather than a PT scan since evidently they can perhaps see if there are any tiny fractures from radiation, etc. I complained loudly at my last check up. This is something I had not done before my diagnosis when I had pain as I was too afraid. Now that they have overall improved my health, I am grouchier! Go figure! lol
  • txrn
    txrn Member Posts: 1
    lemonade said:

    Pain
    I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

    I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

    Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

    I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

    I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

    Barbara

    Pain after Chemo/Radiation
    Barbara,
    It has been a year since you posted this message and I hope that your pain is now gone; however if you are still having pain and thinking about a support group I would be happy to share experiences with you. I live in your area and have also experienced the same painful side effects.
  • sherinc
    sherinc Member Posts: 6
    AnneCan said:

    I am from the CRC board.
    I wanted to tell you that I can sit cross-legged after 25 rounds of radiation with chemo. In fact, I think I do it rather well. I don't know that my onc would like me to do it; she doesn't even like it when I cross my feet (worried about bloodclots).When I had radiation it was given to me from all 4 directions. The table didn't turn over, the radiation machine approached from all directions.

    Radiation "The gift that keeps on giving"
    I had the same at 30 treatments from all sides and am facing many of the side affects I have read from this site. Also the loss of,before radiation " healthy tissue" I will have surgery in Jan.13. I can finally boast that I have tatoos. lol
  • sherinc
    sherinc Member Posts: 6
    lemonade said:

    Pain
    I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

    I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

    Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

    I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

    I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

    Barbara

    wow
    hello Barbara,
    I am 2.5 yrs from conclusion of radiation/chemo. BLAH BLAH . I too am grateful no joke to be alive. Farah had the same cancer as I did and she died 2 years from diag. Farrah did not take the conventional treatment that I and it appears so did most of us. I guess that I am a survivor but is that before 5 years or after? Jeez I am so confused about this point. Your comment about everyone else around you feels all is healed and its time to move on . I can so relate to this. Its like all the world says ok you are treated therefore you are done with being sick. I feel like I am alone in my world. I will have surgery to repair some of the damage from the radiation and continue to survive. Blessings to all.
  • BC331
    BC331 Member Posts: 12
    mp327 said:

    Hip/pelvic stiffness
    Hi Lemonade--

    I completed 6 weeks of chemo/rad for anal cancer in Aug./Sept. 08. I am not as flexible in the hips and pelvic region as I used to be due to the radiation. However, I am a runner and lift weights for exercise and it has helped me tremendously. I really believe exercise is vital in keeping things from "seizing up." One thing that radiation can do is damage/weaken the bones. If you have not yet had a bone density test, you should have one to assess the condition of your bones post-radiation. I had my first one about 6 months after my treatment ended and it showed that I have osteopenia, which is the precursor to osteoporosis. I take many supplements now to improve my bone health, including calcium, magnesium and vitamin D. Weight bearing exercise is very important in keeping bones strong, so I still run 6 days/week. If you are unsure of what exercises to do to increase flexibility and range of motion for the hips, have your physician refer you for one visit to a physical therapist for instruction in an exercise program. I have never done yoga or Pilates, but many who have had pelvic radiation will attest to the benefits of both, which you might try. I wish you only the best in dealing with these issues and hope you can find ways to improve your flexibility. Unlike the above poster, I don't necessarily believe that nothing can be done to decrease these side effects.

    Running and weight training to help with stiffness
    Hello MP327, I am new to this sight and have just been diagnosed with anal cancer. Just preparing myself for treatment and want to be as proactive as possible. Im wondering if you also ran during your treatments? Were you actually able to? Im thinking of also taking up Yoga
    as well.
    Thanks for any feed back you have on exercise during the 6 weeks of treatment. =)
  • mp327
    mp327 Member Posts: 4,440 Member
    BC331 said:

    Running and weight training to help with stiffness
    Hello MP327, I am new to this sight and have just been diagnosed with anal cancer. Just preparing myself for treatment and want to be as proactive as possible. Im wondering if you also ran during your treatments? Were you actually able to? Im thinking of also taking up Yoga
    as well.
    Thanks for any feed back you have on exercise during the 6 weeks of treatment. =)

    Hi BC331--
    I'm very sorry to hear of your recent diagnosis, but I'm happy you have found us on this site and I hope we can help you get through this.

    As for exercise during treatment, mine was curtailed due to fatigue, diarrhea and weakness. I had to stop running. However, I have a treadmill and tried to walk on days when I felt up to it. I think any exercise you can get during treatment is beneficial. My best advice is to push yourself only as far as is doable and no further during that time. Your body will be letting you know what it can and can't do, so listen to it. You will need plenty of rest and fluids. Also, I recommend getting protein with each meal or snack. Eating became difficult for me towards the end of treatment, as I had absolutely no appetite. Protein drinks were helpful, but didn't taste very good to me then!

    I would definitely try to get in some walking whenever you can. Yoga will help also, keeping you flexible. You may have read on this site already that a common post-treatment side effect is hip pain/stiffness and reduced range of motion. If you can keep moving during treatment, it should help you.

    I wish you all the best and hope you'll keep us posted on how things go. I hope you get started with your treatment soon so you can get on the road to recovery!
  • irishellie
    irishellie Member Posts: 8
    Hip Pain from Radiation

    I am a 7 1/2 year survivor of Rhabdomyosarcoma. I had pelvic radiation 25x plus 3 rounds of internal radiation thru vagina, as well as 12 chemotherapy rounds.  I've been "cancer free" for 6 1/2years officially.  The pain started about 4 years ago in my left hip.  My doctor told me it was bursitis and gave me shots of cordisone.  Right now the pain is horrific.  It's been pretty bad for the past couple of months and I have not gone back to my rhumatologist because I don't think it is bursitis ...I think it is from the radiation and was almost relieved to read your post.  I know your frustration and I literally 'feel' your pain.  I find that heat helps if not just to loosen it up ...the warmth feels good. I try to go in the hot tub ....get massages...etc. but sometimes nothing helps.  I take way too many advils but it does seem to relieve some of the pain...even if it is just taking the edge off. If you find anything that helps...please post it. I will do the same.  Ellie

  • irishellie
    irishellie Member Posts: 8
    Hip Pain from Radiation

    I am a 7 1/2 year survivor of Rhabdomyosarcoma. I had pelvic radiation 25x plus 3 rounds of internal radiation thru vagina, as well as 12 chemotherapy rounds.  I've been "cancer free" for 6 1/2years officially.  The pain started about 4 years ago in my left hip.  My doctor told me it was bursitis and gave me shots of cordisone.  Right now the pain is horrific.  It's been pretty bad for the past couple of months and I have not gone back to my rhumatologist because I don't think it is bursitis ...I think it is from the radiation and was almost relieved to read your post.  I know your frustration and I literally 'feel' your pain.  I find that heat helps if not just to loosen it up ...the warmth feels good. I try to go in the hot tub ....get massages...etc. but sometimes nothing helps.  I take way too many advils but it does seem to relieve some of the pain...even if it is just taking the edge off. If you find anything that helps...please post it. I will do the same.  Ellie

  • mp327
    mp327 Member Posts: 4,440 Member

    Hip Pain from Radiation

    I am a 7 1/2 year survivor of Rhabdomyosarcoma. I had pelvic radiation 25x plus 3 rounds of internal radiation thru vagina, as well as 12 chemotherapy rounds.  I've been "cancer free" for 6 1/2years officially.  The pain started about 4 years ago in my left hip.  My doctor told me it was bursitis and gave me shots of cordisone.  Right now the pain is horrific.  It's been pretty bad for the past couple of months and I have not gone back to my rhumatologist because I don't think it is bursitis ...I think it is from the radiation and was almost relieved to read your post.  I know your frustration and I literally 'feel' your pain.  I find that heat helps if not just to loosen it up ...the warmth feels good. I try to go in the hot tub ....get massages...etc. but sometimes nothing helps.  I take way too many advils but it does seem to relieve some of the pain...even if it is just taking the edge off. If you find anything that helps...please post it. I will do the same.  Ellie

    Hi Ellie--

    I'm glad to hear you are a 7 1/2 year survivor of your disease, but sorry you are dealing with the hip pain that many of us also have after pelvic radiation.  I would have to agree with you and disagree with your doctor--it's probably not bursitis.  Have you had a bone density scan (DEXA)?  That type of scan assesses the bones for osteoporosis and/or osteopenia, which radiation treatment increases the risk of.  I've had them done a couple of times since treatment and have been diagnosed with osteopenia.  I am pretty religious about taking calcium, magnesium and Vitamin D supplements to help strengthen my bones.  I lift weights and am also a runner, so I get plenty of weight bearing exercise, which is also helpful.  I have bouts of hip pain, usually brought on by over-doing it.  I find that stretching and just keeping myself moving more helps.  I really think exercise is key.  I wish you all the best and hope you can find some relief! 

  • RacheyB
    RacheyB Member Posts: 1
    Hip pain

    Hey there,

     

    I am so glad to have found this site., even if I am from the UK... So, Hi, I'm Rachel and I'm 28. I had cancer in my hip when I was 10. The day before my biopsy in 1994, the surgeon came to examine me, and lying on the bed I could get my left leg to raise at a 90 degree angle, but my right leg would only go 15 degrees up. I had a years worth of chemo on a three weekly cycle and 30 sessions of radio therapy. The R/T session were for three minutes a day on weekdays, zapping for 60 seconds at a time from three different angles.

    In the few years after chemo, I was incredibly stiff. The kind of stiff, where you're arguing with your Physical Education teacher that you can't even put your socks on with ease, let alone trying to tackle the hurdles!

    In 2002, when I became sexually active, I'd find that I ended up in immense amounts of pain if I tried any amount of adult activity. IN 2003, it became too much and I went to the doctors who reffered me to physio. I had no stamnia when it came to bedroom activities, and if I became within about (what I now know to be) 1-5 minutes of an orgasm, the pain in my hips/back/legs was so unbearbale we'd have to stop. The pain was cramp. But the tensing up would leave me in utter agony, and I did not fully ejnoy sex until a few years ago... The physio helped, but got no where close to getting me back to 'normal'

    I went to uni at the end of 2003, and the concept of doing daily physio just did not fit in with the uni life. Nearing the end of uni, I started sffering more and more pains. not just one type of pain, but several.

    By 2006/07 I was in constant agony, and it took for me to go back to my childhood chemo speciliast to write a letter to my (new) doctor suggesting physio would be good. By them summer of 2007 (aged 23) I could not put socks on by myself, my boyfriend had to do it. or I'd have to sit on the bed and attempt it for <15 mins. Like a drunk person trying to find the keyhole of a door...

    I got referred to the phsio department again, who asked me to keep a diary of when I hurt. But I didnt produce one as I'd have spent all day, every day writing in it. I went for weekly sessions at the hospital for about 6 months and it helped amazingly. Unfortunately, the sessions stopped because other people needed the sessions / there isn't that much funding on the NHS / there was nothing else they could do for me. The six months of physio had stopped the constant agony, and given me much more flexibility, but then I was left to continue the 30-60 minutes of physio every day, at home, by myself. And this was just to keep the pain at bay.

    I persisted. And persisted. But the last two years have been getting progressively worse and worse.

    As mentioned, I have more than one type of pain; If i sit too long, IE more than half an hour, a toothache style pain starts in my hips and works its way down my leg and up my back, The longer I sit, the longer it takes to be able to walk like a 'normal' person. One hour of sitting, ages me about a decade. And each decade takes a minute of walking to wear off. So an hour of sittinh takes one minute of me to be walking to feel my normal self again. There's then the pain that feels like being punched in the bum every time you take a step upstairs. Then there's the pain that feel like someone is very slowly pushing an extremely sharp pin in the side of my hips when I'm sat down, and then there's the one that's caused me the most grief over the past two years.

    When I stand up from a sitting position, it feels like I've banged my funny bone, but in my groin. Or that's how it was two years ago. That sensation would hit me once every six months and last for a second. It'd been that was since the late 90s. But the sensation became more frequent, like once every four months, then three, then one, then once a week, and the lenght of pain went up from a split second, to a whole second, then two, then three, then ten. And each time the frequency increased, the pain increased. To begin with, it was just a sensation, then it turned into pain, then into agony. It's been for the last year, that the pain has made me yelp when it sets in. The pain/sensation was just in my groin to begin with. half way between the inside of my leg and the outside of me hip. But gradually, over time the pain has spread. Sometimes it just shoots to the outside of my knee, other times in continues down from there, to the inside of my ankle. When the pain hits, and I stant up, it takes me from between one second and ten seconds to be able to start walking. Once I get going, I'm fine. But as soon as I stop, or sit down, I'm screwed.

     

    The last six months to a year, I've really noticed a step up in the trauma. It's affecting my sleep. If I go to roll over, it wakes me up. If my leg twtictches it can wake me up. During the last three years, I've moved a few times, each time bring a whole new way of life. My first move saw my doing 30 mis of physio every day and a five mile cycle to work and back 4 times a week. The second move saw me doing 15 mins of physio on weekdays plus 15 mins of cycles along with an hour of physio each day at the weekend, I then lost my job and was doing 3 hours of physio and yoga each day, just to get me to 'base level'. I then moved again and was doing an hours worth of physio each morning and whatever yoga I could fit in. I must mention, that'd I've always had jobs where I'm on my feet and moving about all day, such as working in restauarants or coffee shops.

    But as time goes on, the pain gets worse. it gets more frequent, the pain level goes up and my flexibility goes down. Like many other people, I wasn't warned of the long term side effects, and therefore not able to prepare for them, and not combat them when they arrive. As I've said, I'm 28. 28, and feel most mornings when I wake up like I'm 88. If I meet anyone above the age of 50 who complains with aches and pain, and I say I know how they feel, I get totally dismissed because someone of 28, who still gets asked for ID on a regular basis, can't possibly wake up feeling older than their years!

    When I made my last move and came back to my home town, I signed up with the doctors and got an immediate transferral to the local physio department. I go once a month and just get my hip manipulated, which helps for a day or two with stiffness, but not the pain. I've also been taking Tramadol for the last year, but about six months ago they started making me really itchy, sweat so much you could see it trickle off of me, and also give me insane insomnia, as well as turning me into a complete space cadet!  So then I got Codine, which makes me constpated, therefore meaning I have to stratigically plan my meals. So currently, if the pain is really bad I start with Codine, but then go with Tramadol, but then I can't sleep, and the next day I go with Codine, but it's not as good as Tramadol and I can;t sleep because if I roll over the pain wakes me, then the next day I go with Tramadol, but I haven't emptied my bowels for a few days, and when I finally do, I spend most of the day on the toilet. Like four or five separate visits, equating to each day since I took codine. But each time, getting looser and looser and looser, until I'm just walking about and can feel a wetness between my cheeks, and then the rest of the day is spent visiting the toilet every 15 minutes while just a trickle of wetness comes out. But then, after this day, I clearly don't want to take any pain killers for a while due to their side effects, and then the shooting pain from my groin starts up again and I put up with it for a week, still continuing to do physio, and then the pain gets so bad I resort to pills on the highest dose.

    And that's me now. Aged 28, 19 years after treatment, All the doctors suggest is physio. But three hours a day just isn't feesible. I'm abolsutely bored to tears with it. It brings me bouts of agony on a daily basis, where it feels like I've broken my groin, and its getting worse and worse. I won't sugar coat it for you. It's horrendous, and I should have another 50 years of life in me. I honestly do not know how I will cope. I'm barely coping now. 

    Yesterday I got given a number for someone who does accupuncture, so I'll be sure to follow up that lead after reading numerous posts on this forum. I just want to try and rid me of this pain and stiffness,

    I have no words of wisdom for you, only the cold hard truth that physio and excercize help, but no one can do it for you other than you. It's only ever going to get harder and you'll have to put in more work! But count yourselves lucky, most of the post I've read on this site have been from people who are around 50 years plus, and had treatment within the last five years, I've already been dealing with this for two thirds of my entire life, and I'm potentially only one third of the way through it. It sucks, it really really sucks, and until I found this website I had no idea that anyone else was dealing with the same problems as me. It's refreshing and saddening that people are in the same boat as me!

     

    Any help or advice would be greatly appreciated!

     

    Much love to you all

     

    RacheyB

     

     

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    RacheyB said:

    Hip pain

    Hey there,

     

    I am so glad to have found this site., even if I am from the UK... So, Hi, I'm Rachel and I'm 28. I had cancer in my hip when I was 10. The day before my biopsy in 1994, the surgeon came to examine me, and lying on the bed I could get my left leg to raise at a 90 degree angle, but my right leg would only go 15 degrees up. I had a years worth of chemo on a three weekly cycle and 30 sessions of radio therapy. The R/T session were for three minutes a day on weekdays, zapping for 60 seconds at a time from three different angles.

    In the few years after chemo, I was incredibly stiff. The kind of stiff, where you're arguing with your Physical Education teacher that you can't even put your socks on with ease, let alone trying to tackle the hurdles!

    In 2002, when I became sexually active, I'd find that I ended up in immense amounts of pain if I tried any amount of adult activity. IN 2003, it became too much and I went to the doctors who reffered me to physio. I had no stamnia when it came to bedroom activities, and if I became within about (what I now know to be) 1-5 minutes of an orgasm, the pain in my hips/back/legs was so unbearbale we'd have to stop. The pain was cramp. But the tensing up would leave me in utter agony, and I did not fully ejnoy sex until a few years ago... The physio helped, but got no where close to getting me back to 'normal'

    I went to uni at the end of 2003, and the concept of doing daily physio just did not fit in with the uni life. Nearing the end of uni, I started sffering more and more pains. not just one type of pain, but several.

    By 2006/07 I was in constant agony, and it took for me to go back to my childhood chemo speciliast to write a letter to my (new) doctor suggesting physio would be good. By them summer of 2007 (aged 23) I could not put socks on by myself, my boyfriend had to do it. or I'd have to sit on the bed and attempt it for <15 mins. Like a drunk person trying to find the keyhole of a door...

    I got referred to the phsio department again, who asked me to keep a diary of when I hurt. But I didnt produce one as I'd have spent all day, every day writing in it. I went for weekly sessions at the hospital for about 6 months and it helped amazingly. Unfortunately, the sessions stopped because other people needed the sessions / there isn't that much funding on the NHS / there was nothing else they could do for me. The six months of physio had stopped the constant agony, and given me much more flexibility, but then I was left to continue the 30-60 minutes of physio every day, at home, by myself. And this was just to keep the pain at bay.

    I persisted. And persisted. But the last two years have been getting progressively worse and worse.

    As mentioned, I have more than one type of pain; If i sit too long, IE more than half an hour, a toothache style pain starts in my hips and works its way down my leg and up my back, The longer I sit, the longer it takes to be able to walk like a 'normal' person. One hour of sitting, ages me about a decade. And each decade takes a minute of walking to wear off. So an hour of sittinh takes one minute of me to be walking to feel my normal self again. There's then the pain that feels like being punched in the bum every time you take a step upstairs. Then there's the pain that feel like someone is very slowly pushing an extremely sharp pin in the side of my hips when I'm sat down, and then there's the one that's caused me the most grief over the past two years.

    When I stand up from a sitting position, it feels like I've banged my funny bone, but in my groin. Or that's how it was two years ago. That sensation would hit me once every six months and last for a second. It'd been that was since the late 90s. But the sensation became more frequent, like once every four months, then three, then one, then once a week, and the lenght of pain went up from a split second, to a whole second, then two, then three, then ten. And each time the frequency increased, the pain increased. To begin with, it was just a sensation, then it turned into pain, then into agony. It's been for the last year, that the pain has made me yelp when it sets in. The pain/sensation was just in my groin to begin with. half way between the inside of my leg and the outside of me hip. But gradually, over time the pain has spread. Sometimes it just shoots to the outside of my knee, other times in continues down from there, to the inside of my ankle. When the pain hits, and I stant up, it takes me from between one second and ten seconds to be able to start walking. Once I get going, I'm fine. But as soon as I stop, or sit down, I'm screwed.

     

    The last six months to a year, I've really noticed a step up in the trauma. It's affecting my sleep. If I go to roll over, it wakes me up. If my leg twtictches it can wake me up. During the last three years, I've moved a few times, each time bring a whole new way of life. My first move saw my doing 30 mis of physio every day and a five mile cycle to work and back 4 times a week. The second move saw me doing 15 mins of physio on weekdays plus 15 mins of cycles along with an hour of physio each day at the weekend, I then lost my job and was doing 3 hours of physio and yoga each day, just to get me to 'base level'. I then moved again and was doing an hours worth of physio each morning and whatever yoga I could fit in. I must mention, that'd I've always had jobs where I'm on my feet and moving about all day, such as working in restauarants or coffee shops.

    But as time goes on, the pain gets worse. it gets more frequent, the pain level goes up and my flexibility goes down. Like many other people, I wasn't warned of the long term side effects, and therefore not able to prepare for them, and not combat them when they arrive. As I've said, I'm 28. 28, and feel most mornings when I wake up like I'm 88. If I meet anyone above the age of 50 who complains with aches and pain, and I say I know how they feel, I get totally dismissed because someone of 28, who still gets asked for ID on a regular basis, can't possibly wake up feeling older than their years!

    When I made my last move and came back to my home town, I signed up with the doctors and got an immediate transferral to the local physio department. I go once a month and just get my hip manipulated, which helps for a day or two with stiffness, but not the pain. I've also been taking Tramadol for the last year, but about six months ago they started making me really itchy, sweat so much you could see it trickle off of me, and also give me insane insomnia, as well as turning me into a complete space cadet!  So then I got Codine, which makes me constpated, therefore meaning I have to stratigically plan my meals. So currently, if the pain is really bad I start with Codine, but then go with Tramadol, but then I can't sleep, and the next day I go with Codine, but it's not as good as Tramadol and I can;t sleep because if I roll over the pain wakes me, then the next day I go with Tramadol, but I haven't emptied my bowels for a few days, and when I finally do, I spend most of the day on the toilet. Like four or five separate visits, equating to each day since I took codine. But each time, getting looser and looser and looser, until I'm just walking about and can feel a wetness between my cheeks, and then the rest of the day is spent visiting the toilet every 15 minutes while just a trickle of wetness comes out. But then, after this day, I clearly don't want to take any pain killers for a while due to their side effects, and then the shooting pain from my groin starts up again and I put up with it for a week, still continuing to do physio, and then the pain gets so bad I resort to pills on the highest dose.

    And that's me now. Aged 28, 19 years after treatment, All the doctors suggest is physio. But three hours a day just isn't feesible. I'm abolsutely bored to tears with it. It brings me bouts of agony on a daily basis, where it feels like I've broken my groin, and its getting worse and worse. I won't sugar coat it for you. It's horrendous, and I should have another 50 years of life in me. I honestly do not know how I will cope. I'm barely coping now. 

    Yesterday I got given a number for someone who does accupuncture, so I'll be sure to follow up that lead after reading numerous posts on this forum. I just want to try and rid me of this pain and stiffness,

    I have no words of wisdom for you, only the cold hard truth that physio and excercize help, but no one can do it for you other than you. It's only ever going to get harder and you'll have to put in more work! But count yourselves lucky, most of the post I've read on this site have been from people who are around 50 years plus, and had treatment within the last five years, I've already been dealing with this for two thirds of my entire life, and I'm potentially only one third of the way through it. It sucks, it really really sucks, and until I found this website I had no idea that anyone else was dealing with the same problems as me. It's refreshing and saddening that people are in the same boat as me!

     

    Any help or advice would be greatly appreciated!

     

    Much love to you all

     

    RacheyB

     

     

    RacheyB

    Hi,

     

    Wow I can really relate to what you were saying about how lucky we are that this happened to us now and not earlier.  I am even grateful for the three years of my mis diagnosis.  Those were some wonderful years of me surfing some epic waves and having no worries or any pain.

     

    Its a little scary to hear that things could get worse.  I have that same groin pain you describe. Sometimes I scream out loud in public.i hope and pray for some miracle to cure you.  Sounds like you are doing your best to live a normal life.  Good for you.

  • Radiation Side Effects

    Hello,

    I was diagnosed with anal cancer in August 2011, immediately followed by six weeks of radiation, and two rounds of chemotherapy. So it has been 2.25 years since the end of treatment. I had been an avid hiker/backpacker having climbed a 14-mile, 3,700 ft.- vertical elevation trail the week before my doctor's appointment. I only say this in the framework that when I finished my treatment I was so anxious to regain my previous capability.  I had excellent doctors I believe, but besides advising the use of vaginal dialators/estrogen cream beginning a few months after the end of treatment, I was not warned about the radiation fibrosis that would occur in the skeletal muscle (quads, hamstrings, well, everything from the waist on down and the knees on up).

    I was sidelined a year ago with meniscus (knee) surgery caused by a relatively simple, easy hike.  It has taken a year to recover from that. Now that my knee is completely healed, I am discouraged to discover that I hurt all the time; hamstrings, hips, quads, etc. Excersize helps; takes a LONG time to warm up; stretching helps (so much loss of flexibility though), and it seems to be gradually getting worse. I completely agree with the "use it or lose it" advice. The longer you hold still, the greater you sieze up. After reading so many of these posts I see that this is a situation I'll have for the rest of my life.  I found a PubMed abstract at the following: http://www.ncbi.nlm.nih.gov/pubmed/22108231 that plainly describes our condition.  Furthermore, the Journal of Clinical Onclogy has a 2005 article discussing the potential reversibility of this condition, using Vitamin E and pentoxitylline. I will be asking my rad onc doc about this.  I haven't seen him in ages, but it seems to be time.

    Bottom line, the fibrosis seems to be getting worse over time; making movement and stretching a top priority forever.

    Hang in there.