New Here 10 yrs NED

Hi there, welcome.

You've come to the right place for information and support, we are a group with a lot of different experiences. Were there any specific aspects of AC you were looking for info about?

xxx

Thank you!

The side effects of radiation. Incontinence, and hip pain. I feel like instead of getting better, it’s getting worse. It’s very hard emotionally. 

There are a couple of people on here who have recently been discussing hip issues so hopefully they will see your post, Nikki65 and Irene75359.

Are you still having these issues after 10 years? It might be worth making an appointment with your GP and having a review; it's a long time if you are still suffering.

I have recently read here there are clinics in some hospitals which deal with long term side effects of radiotherapy. Macmillan might be able to help, or Cancer Research UK. Sorry not to be of more help xxx

No. Don’t be sorry. I really appreciate any feedback I can get. I still see my gastroenterologist at MD Anderson and we have discussed everything regarding my stomach and he is at a loss. I even tried the sphincter stimulator and that didn’t work. 

Hello Joway2014 

I am so sorry, I saw your post and the fact that I was flagged and took some time to think about a reply, and then became involved in later posts.

There have been quite a number of posts recently about ongoing side effects after radiotherapy and I am sorry that you are also going through this, I can really understand how you are finding it all very hard to deal with on an emotional level.  I didn't suffer from total incontinence as such, but had anal stenosis which meant I was never able to pass a formed stool.  I ended up taking a mild stool softener at night and prune juice every morning and I would wait until I had had two-three bowel movements and when I was completely 'empty' I felt safe to go out. I always experienced extreme urgency but by sticking strictly to my regimen I never was actually caught out.  However, I ended up having an elective stoma formed, it hasn't been the total answer to my problems but I can live with that.

The hip pain is a subject being much discussed on here right now and we are comparing notes about appropriate pain relief, effective treatments, and at the moment I am waiting for extracorporeal shockwave therapy as an MRI showed bursitis and tendinopathy in both hips.  If you want to check it out

To those with painful hips...

I will update it with the effectiveness of the treatment.

And a warm welcome to the forum; your experiences too are most welcome.

Irene xx

Hi Joway2014 ,

Another warm welcome from me to the Macmillan Online Community. 

I’m slightly behind you at almost 8 years post treatment & like yourself my hip pain is just increasing along with back pain & bilateral sciatica, also after spending lengthy periods on my feet my legs feel quite weak regardless of exercises & physio to strengthen them. 

I see Irene has signposted the discussion we’ve had regarding these ongoing issues, if you haven’t already have a little read through that, it’ll give you a little insight into where we all are along our individual journeys in seeking professional help & support. 

I see you’re in the US, I’d love to hear your experience in getting help with the late effects of this treatment. 

Nicola 

Thank you so much for responding. I can hear the Dr say Quality over Quantity. I don’t often have diarrhea, so thats a good thing, but the urgency and inability to stop it has been with me since the beginning. I had my gallbladder taken out a couple of yrs ago and that definitely had a part in it getting worse. My hips, I understand, especially with the amount of radiation I received and hoping there’s someone on here that has some way to even just ease it some. I did go to physical therapy for my back and he worked on my hips as well and I try to them at home. Helps some because of the stretching. I don’t know how to take a picture and post it, but I would be more than happy to post it. 

Hi. I will definitely look at other posts to see what information I can find. As I’m sure you know when you’re 5 yrs in remission basically they’re just doing maintenance. I have a wonderful oncology GI Doctor that has never given up on me. He believes just because you beat the cancer, doesn’t mean you forget what comes after. So I adore him! I have a video chat coming in April and CT scan in November. 
Has anyone been told they have IBS?  Still trying to figure out that one. 

That’s amazing that you’re still so well supported by your oncologist, I’ve managed to contact a pelvic radiotherapy late effects clinic close to me in the North East of England I’m just waiting on a call back & I suspect my hip issues will turn out to be very similar to Irene’s but my back is another thing. My hips & back are both painful when I’m walking or standing but when I rest my sciatica isn’t happy & my whole pelvis seems to seize up & stiffen which makes it painful & difficult to begin moving again! I went through physiotherapy 2 years ago & that helped to begin with but it doesn’t seem to any longer even though I still do the exercises. I’m revisiting physio next Tuesday. 

I do get IBS type symptoms, these for me though are mostly related to specific foods although there are odd times when it comes on out of the blue. I have to be careful with the amount of fibre that I eat as that can cause me to bloat, I get ridiculous gas & end up in the loo more than usual! I can no longer drink coffee like I used to, I can tolerate a couple of cups per week but no more as this does the same as the fibre as does too much sugar, bread & I can’t eat  raw onion. A food diary recording foods & reactions quickly highlights the culprits if it’s food related. 

Nicola 

I do feel very Blessed in that regard and of course surviving. I went through that last year with my back and couldn’t get up without help. That was pretty scary. It did show osteoarthritis and basically damage from radiation. Went to My Dr and they gave me shots in my back. It’s still pretty good, it’s been about a year, but my hips are screaming everyday.  I can’t even sit comfortably I may have to look and see if there’s a radiotherapy clinic here at MD Anderson. Thank you for that information. Im at that point in my life when I have to figure out if the pain is partly do to getting older.

Because of the reaction to food, I basically eat very bland foods. If I could I wouldn’t eat at all cause there is no rhyme or reason. I could eat something one night, no problem, the next week eat exactly the same thing and I’ve got pain, bloating and bathroom. I also have a lot of mind - gut problems. Anxiety doesn’t help at all and I’ve just recently downloaded an app with breathing, meditation and other items to help. Just got it, so hopefully it’ll help some. 
i really want to say thank you for responding, every little message helps with something you may not no about or just knowing you’re not alone. 
Joan