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Hip problems post pelvic radiotherapy

7 Apr 2018 11:13

In July 2013 in was diagnosed with Endometrial stromal sarcoma, I underwent 26 sessions of pelvic radiotherapy followed by two doses of brachytherapy.

soon after finishing the treatment I noticed a tightening around my hips and altered sensations in legs. Over the last few years I have had constant tightness in my hips but I have also experienced several episodes of being unable to move my legs properly, having to think about moving my legs when I’m walking, unable to lift my legs properly and an dull toothache like pain in my legs.

The drs seem unable to give me an answer as to why this is happening, I am sometimes made to feel like I’m making it up- which is very frustrating!

 I am very motivated to improve my fitness, I do Pilates and use an exercise bike but it is always a bit of a struggle.

l wondered if anyone else is experiencing similar problems post pelvic radiotherapy 

Hip problems post pelvic radiotherapy

7 Apr 2018 22:16 in response to Franconference

Hi Fran',

I had radio to my pelvis for a plasmacytoma, 10 sessions. I've found that I have stiffness in the hip area that can become pain or what I'd expect to be pain, manifesting as stiffness.

I'd say similar but slightly different motor symptoms as well. I've told the medicos but only as info rather than trying to find out why.

I have definite peripheral neuropathy in both legs/feet and around the pelvis/lower abdomen, including the genitals.

I think chemo is at least partly responsible, as well as a long term dodgy back.

 

Regards

Taff

Hip problems post pelvic radiotherapy

3 Jun 2019 22:27 in response to Franconference

Hi

i had a similar series of treatments a year ago, and have had bladder issues since which are being dealt with seperatly. More recently, I have noticed I am stiff in the ankles and hips, my hips make a clicking noise when I go up stairs, my lower back makes a noise when I twist and turn. When I get out of bed or get up from sitting, I am stiff. I didn't have any of these issues before the RT.

i just found your post and was wondering if you have managed to get any help or how your condition has progressed?

Hip problems post pelvic radiotherapy

6 Jun 2019 15:02 in response to linfo

Hi,

I really wish I could tell you that things have been improving but unfortunately not. Both my legs have progressively got worse despite me trying my hardest to improve. I do a rehab Pilates session once a week and I also try and go on the exercise bike as much as I can. My legs feel very achy and heavy and I have to think about moving my legs with every step I take. I sometimes get spidery sensations on my legs, like something is crawling on them. I find that putting a heat pad on my legs can relieve some of the aching. I have found that physio hasn’t been particularly useful,as it makes my legs ache even more! I have been seen by neurologists who think that it is damage from the radiotherapy, but my oncologist refuses to believe that it is. Mhm legs were fine before the treatment, seems too much of a coincidence if it’s not related. 

I hope you continue to improve 

Hip problems post pelvic radiotherapy

6 Jun 2019 15:44 in response to Franconference

Hi fran I'm afraid i don't remember when it was but some one on forum had radiotherapy on stumack found out later food couldn't pass through stumack was welded up. I'm glad i had cemo. 

Billy 

Hip problems post pelvic radiotherapy

1 Jul 2019 11:46 in response to linfo

Hi,

I was just scrolling through google looking for info on post radiotherapy hip pain and found this thread.

Its been 3 and a half years since my radiotherapy and chemo, which I had to my pelvis, and only now I am starting to really feel the effects. I’ve had some hip pain which wasn’t persistent but now it seems to have come with a vengeance. The pain is directly aligned with where I had the radio, I know because of the tattoos on my hips.

I wouldn’t let anyone dismiss the idea of post radio pain, it’s very much a real and recognised thing. I’m going to ask for it to be checked out because I want to be treated correctly, I’ve got enough going on with st 4 bloody cancer without wanting to deal with late side effects too.

I hope everyone here gets the attention they deserve and some relief from the pain...much love,

Jo x

Hip problems post pelvic radiotherapy

6 Aug 2019 00:40 in response to Franconference

Hi, 

I had endometrial cancer 7 years ago treated with 6 weeks of radiotherapy, 5 sessions of cisplatin chemo and 3 brachytherapy followed by a hysterectomy. About 6 months after treatment I developed insufficiency stress fractures along the pelvis. Painful for a while but they healed. My bowels have been struggling since then.

Last year I had breast cancer and was put on Letrozole. Since then I have been struggling more and more with mobility, hip and leg pain. 2 months ago I was in so much pain and it reminded me of the stress fractures pain I had experienced. An MRI scan showed they had in fact returned. I have been told that some of the pain is due to severe osteoarthritis in the hip but this doesn't add up to me.

 I can identify so much with what you're saying. Pains in the legs, struggling with walking any great distances and particularly standing around. I am so suspicious this is more related to my pelvic radiotherapy than arthritis. I think the Letrozole is to blame for suddenly flaring up these issues. I am concerned, I am only 57 and don't want to end up disabled. I have started using walking poles to help but after a while I am dragging my right leg along.

Just to make matters worse I have developed Lymphodaema in my breast and looks like Lipodema in my thighs and hip area. Has anyone else experienced this as a result of pelvic radiotherapy? 

I swim regularly and live an active life but feel this is really beginning to affect my quality of life. Has anyone got any ideas or suggestions. Have you been given treatment / advice to help with late effects of pelvic radiotherapy? I'm supposed to be going away with friends on a long weekend to Europe but I reckon the cost of insurance is going to be too much.

So many questions...no answers. People think you're all cured and everything is fine after treatment stops, but it just doesn't end

Hip problems post pelvic radiotherapy

9 Aug 2019 16:57 in response to Jammy

Hi

thanks for responding to my post.

i am sorry to hear about all of your problems. 

I had a session with my GP recently to discuss my concerns about the stiffness and weakness in my hips, lack of energy etc. He sent me for a hip X-ray which I haven't yet had the results for, also referred me to the physiotherapist unit at our local cottage hospital. I had my appointment there last week. The Physio showed me a series of exercises to do to try and build up some more strength in the muscles around the hips and lower back, she has also booked me into the hospital gym for a session with an instructor there.

The hospital where I had my radio therapy and ongoing monitoring referred me to their in house acupuncture department, where I have so far had one session, with more to follow. The Doctor there is treating me to try and improve my energy levels, UTI's, hip and lower back issues, migraines, and hot flushes.

Maybe you would benefit from some of these treatments?

Best wishes

Linda

 

Hip problems post pelvic radiotherapy

20 Nov 2019 12:14 in response to Franconference

Hi Fran,

I can related to what you're going through. 

I was treated for endometrial cancer in August of this year.  Since then I have experienced constant nagging ache in the small of my back, in my hips and all down the outside of my legs.  Also a stiffness and lack of mobility in that area.

I've tried exercise, I've tried resting, nothing helps.

I would appreciate it if people have found a solution to this problem.

Kind regards

Anne F

Hip problems post pelvic radiotherapy

29 Nov 2019 16:54 in response to AnnieF1972

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Hip problems post pelvic radiotherapy

29 Nov 2019 17:41 in response to Franconference

Thanks for responding.  

I don't usually do social media, but I'll look out for your page!

Best 

 

Anne

Hip problems post pelvic radiotherapy

6 Dec 2019 12:35 in response to AnnieF1972

Like early posts I have had Radiotherapy with chemo for bowel cancer 5 plus years ago.

Increasingly worsening pain with right hip. MRI last week showed end stage osteoarthritis. Hips BEFORE treatment perfect as per pictures taken. 

It does not appear to be widely known that radiotherapy can cause avascular necrosis. The elasticity of soft connective tissue is also seriously compromised. Physiotherapist and nurses do seem to have some awareness of same. 

I have worked hard on same for past years but now know I need to do something about my hip. Experts are not rely familiar with long term effects of treatment. Educate them. Make noise. Do not just accept it so improve as I did.

Best of luck to you all. 

Hip problems post pelvic radiotherapy

16 Feb 2020 12:05 in response to Franconference

Hi

I had RT last year for a pelvic sarcoma and have been experiencing all the symptoms others here have experienced. I also exercise and walk but it has started to become quite painful. I had began to wonder if the RT had contributed to this as I did not have this problem before treatment. It's comforting to know that it isn't just me and the feelings I'm getting are real. 
 

I have been taking painkillers at night to help me sleep as I wake up during the night with aching legs and can't get back to sleep as it's uncomfortable. So far I haven't raised this with my oncologist but I certainly will now and hope to be taken seriously. A dull Toothache is exactly right and continuous I find especially at night. 
 

Let's hope we can bring this to the attention of those who need to know about this particular side effect and something can be done. I've always prided myself on being very active (I'm in my 70s) but that has never stopped me from all kinds of activities until now. 
 

Regards MagsT

Hip problems post pelvic radiotherapy

22 Feb 2020 20:28 in response to MagsT

I get this ache / pain in me left side of the pelvis, which is where I had my Radiotherapy for 30 sessions. I'm hoping it's the bone starting to heal itself but I'm unsure. I'm going to mention it to my doctors that I will see start of next month

Hip problems post pelvic radiotherapy

27 Dec 2020 00:36 in response to sand940

Hi, I can totally relate to what you are saying, I too felt very alone regarding the issues I was experiencing. Especially so when many health care professionals made me feel like I was making my walking/ pain issues up.

 I have found some coping strategies and also discovered things that make the  discomfort worse. For me I find that if I sit for too long it exacerbates my symptoms, so regular movements and stretches do help. I have found that walking does help, even though it can sometimes be difficult it does definitely help. I did try Pilates for a few years but found it quite demoralising after a while as it was constantly highlighting what I couldn’t do rather than what I could do. Definitely better for me to focus on the positives. I also use an exercise bike, I try to use it most days which definitely helps to keep the strength in my legs.

 I have been to see many physios but really haven’t had any success. There doesn’t seem to be much understanding regarding the damage pelvic radiation can cause and I have often found myself educating them!