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Radiation Side Effects

lemonade
Posts: 62
Joined: Feb 2010

I am so relieved to have found this discussion group. So far I am an anal cancer survivor. Was diagnosed in July 2009 - then had surgery, chemo and radiation. I finished radiation in October 2009. I am having a problem with my hips not being limber at all. I have reduced flexibility and range of movement I used to be able to touch my toes, sit cross-legged on the floor, etc. My glutes, lower back and upper thigh muscles hurt every day. This week I started (without a doctor's advice) some physical therapy movements for hip replacement patients that I found on the internet. Is this normal? Will it always be this way?

I really appreciate everyone's input. Thank you.

Captain11
Posts: 88
Joined: Apr 2011

Hi, Worden4... I haven't had any pain, just that my legs and feet feel like they are frozen most of the time. I have Reynaud's syndrome, which may have been exascerbated by the chemo and radiation. My primary care suggested my possibly seeing a neurologist, but, she said that the medications a neurologist would prescribe would be the kind that make me groggy...which is not what I need when I have a balance problem. I am very fortunate in that I have had no pain throughout this whole ordeal, (well, other than my butt hurting during bowel movements, and then again, if I don't empty my bowels completely... by the way, does anyone else experience that: not emptying bowels completely????)
I also think you should get another doctor. I had to when I went through my treatments. I am telling you that the doctor's bedside manner is extremely, extremely important and can mean all the difference in the world to your care and recovery. I know, because my first oncologist was horrid.. his compassion was non-existent. I got a second opinion, and even though the news was the same: (not good), my second onc's delivery of the news was awesome. I did remarkably well, and he is super pleased with my progress. And don't worry that you are"hurting the doctor's feelings" by getting a second opinion... my primary care doc says that any doctor worth his/her salt will welcome you getting that opinion. Doctors don't know everything, so more than one opinion can only help you in your decisions about your health care. I also think that if you get a doctor you are comfortable with, your pain may subside like a weight taken off your shoulders. I hope I have helped and I wish you good luck. God bless.

sandysp's picture
sandysp
Posts: 811
Joined: May 2011

Are you legs both the same size? I have Lymphedema which is a side effect of cancer and cancer treatment particularly if the cancer was in your lymph glands. 

I have Lymphedema. Not every doctor who thinks they know something about Lymphedema can diagnosis it correctly. 

You need to see at least to start a good NeuroPhysiologist who specializes in rehabilitating cancer patients.

That's just my suggestion.

Let us know. Martha's suggestion is also a good one. I went to a Neurologist first and found I am in better shape than he is Neurologically:-)

All the best and good luck,

Sandy

sandysp's picture
sandysp
Posts: 811
Joined: May 2011

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.

myrtletree
Posts: 6
Joined: Jun 2012

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.

sandysp's picture
sandysp
Posts: 811
Joined: May 2011

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

WashedupHasbeen
Posts: 5
Joined: Jul 2012

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!

irishellie
Posts: 8
Joined: Mar 2010

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's picture
mp327
Posts: 2949
Joined: Jan 2010

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! 

irishellie
Posts: 8
Joined: Mar 2010

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

RacheyB
Posts: 1
Joined: Feb 2013

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
Posts: 448
Joined: Apr 2011

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.

Labyrinth Walker
Posts: 1
Joined: Feb 2014

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.

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

Thanks for joining us, but I am sorry to hear you have had to take this journey like the rest of us here.  I, too, am quite active and have been a runner for years.  Aside from the usual aches and pains from overuse, I never had many complaints prior to cancer, except for a stress fracture in my right 2nd. metatarsal in 2004.  After I recovered from surgery to fix that, I took back to running and did great.  I had good range of motion and flexibility.  Then cancer came along, then radiation, and as you know, after that things changed somewhat.  I no longer have the flexibility I used to and have trouble with hip abduction and adduction (movements to the side), however, I have no trouble with running.  I can no longer side cross-legged on the floor, as that requires me to spread my hips and femurs.  That is just not happening for me anymore.  Given that many people on this site and other sites that I frequent have these same complaints, it seems apparent to me that this is common among those who get pelvic radiation.  Like you, it takes me awhile to get warmed up and moving in the mornings.  Cold and/or rainy weather doesn't help either.  I also have barking knees, especially my left knee, which has given me some pain off and on for years.  I was diagnosed with osteoarthritis when I sought help with the knee pain from an orthopedist prior to doing a marathon.  He did a series of 5 weekly Supartz injections followed by one Cortisone injection.  I must say that the Supartz really helped, but the Cortisone not so much.  I was, however, able to do that race and have continued to run since.  I can totally relate to your frustrations.  I want to stay active and running for as long as I can.  I know if I ever stop, it's over.  I wish you all the best and hope you will come here to find support when you need it. 

Cjeepgirl
Posts: 3
Joined: May 2013

I was spontaeously falling and could not get up off the floor at all. With determination I am free of my walker and cane. I got a membership at the gym and use the treadmill to teach myself how to walk again so my gate gets back to normal. I am finding that the aquafit classes I have started make a huge difference. I am able to have more flexibility in the pool, although I have to be very careful getting out as I am very weak initially.

I'm a year out from my rad. treatments, and find the flexibility is slowly...very slowly improving.

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