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?

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 

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

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

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!

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!

I had anal tumour two yrs ago have had radiotherapy and chemo tabs but now have really bad pain in hip have seen gp and had xray and was told it is osteoporosis wondering if this is because of radiotherapy now walking with stick. I was on hrt for 12 yrs thought this was meant to help

I too was diagnosed with Squamous cell carcinoma of the anus about 8 years ago ... I was given radio and chemotherapy, but unfortunately the tumour returned within 2 years, so I then needed an op for complete removal of my rectum.  I have now been given the all clear, but since my treatment I too suffer from the most painful cramp, starting in my right groin and going down the inside of my thigh to my knee.  This usually comes on at night as I attempt to turn over, but have been known for it  to start just lounging in the chair and crossing one leg over the other. The following day, the pain continues as if I have a pulled muscle. 

I do 4 dance classes a week and notice that my right hip is much tighter than my left, so can only conclude that it was either the treatment, or the operation that has caused this. 

Not sure if it was a coincidence the drinking tonic water during the episode (after walking down the stairs) eased it, or perhaps it was just the walk down the stairs ;) 

Very interested to read that someone else seems to be having the same problems ...