Sarcoma and Radiotherapy

Hi, sorry nobody picked this up before and cannot share any experience myself as my wife never had radiotherapy.

I know if that had been my wife I would have been quite worried and want her to contact the doctors, then it depends if this was a one-off and when your next appointment is too. If you are ok at the moment might be worth considering if nothing else ringing the helpline in the morning just to have a chat with one of the nurses here. If you are still getting problems I would of course seriously consider ringing the oncology team if you have an out of hours contact or 111 if not.

<<hugs>>

Steve

My hubby had 30 sessions of radiotherapy after he had a myoxfibrosarcoma removed from his arm.   He didn't get any redness til after about day 10.   

Maybe harsher on the leg because your weight is always on it - how many sessions are you having ?   You at hospital tomorrow ?  Just ask one of the radiotherapy team, they were amazing when my hubby was having his treatment last summer.  

Hi

Thanks for the replied! !! I went to Out of hours over the weekend and the GP almost had a canary when I spoke about the sarcoma. ..He didn't really know what it was...He told me that you should expect pain during radiotherapy as the bad cells are killed and that the oncologist should have told me this!!! I almost laughed out loud. ...I know about the fatigue..the burning...the skin redness etc but to expect 4 or 5 really severe pains at a scale of 10 going through my wound. ...this I was not told about....anyways as he didn't know what to do with me he gave me antibiotics even though he didn't think there was an infection. ..I have since had 3 more radiotherapy sessions and spoke to oncologist who has taken bloods and done an xray of my lower back....she says if there was any sort of infection to the wound the antibiotics should clear it....I will keep you updated...thanks 

Sorry but that GP sounds like a dick! No, you should not "expect pain" during any of your treatment. Every medical professional I've encountered has seen pain as somnething to be avoided and if necessary, managed, but never expected. How very unsupportive for you.

The sharp pains could be nerve damage.  I experienced them during radio 4 years ago and still get them now.  Last week the pain has made me cry out in pain.

The thing with radio / chemo is that the nurses etc can give your advice but they will give you the common side effects. It's only when you go through it do you realise how severe the side effects can be and what the unusual ones can be. 

How you feel better soon x

Hi

I had a soft tissue sarcoma removed from the back of my thigh in August, I didn't have radiotherapy so can't comment on that. However I did end up with a infection 3 months down the line, it was caused by small particles entering the scar during a bath. I ended up really unwell with it and my leg was really swollen. 

Sorry for the late reply... I hope your on the mend now. 

Alice 

Hi all

So I am now on no 30 of 30 radiotherapy treatments tomorrow. ..at last...I didn't think I would make it this far...I have pain killers now if I feel the sharp pains and my skin is still doing ok as I'm slapping on the diprobase 2 or 3 times a day....skin a bit tight round the wound but not too bad....I think the radiotherapy has made me a little nauseous over the time of the treatment especially towards the end but I am delighted to be this far....hopefully in a few months I'll be back to some sort of normality especially for my son's sake....anybody starting the radiotherapy road it may seem a long journey till the end bur keep ploughing away and if you need painkillers ask the docs for them...best of luck xx 

Hi Roxy, such a relief to get to day 30 knowing you don't have to go back today !  

You sound like you've done well physically, apart from the pain your skin didn't break down.   That's really good.    My husband is fair skinned and his skin on his arm completely broke down.   

So what's your plan of action now?  Back for check up in couple of weeks then 3 monthly check ups ? 

Xx 

Hi Roxy,

I'm right there with you! I also had a mixofibrosarcoma, but on my ankle, and had a below-knee-amputation in April 2016. Then I had a recurrence last year on my stump and had the sarcoma 2 removed and then a skin-flap done so I could eventually be re-fitted with a prosthetic leg. I haven't had my RT yet because of slow healing of a small part of the stitchline, so we are all waiting for it to finish healing. Then after RT I hope to get walking again.

Re your sharp pains, I do get those in my stump from time to time. In my case though it is more to do with the amputation than with the removal of the sarcoma I think. So not much help to you at the moment. Just want to commiserate and cheer you on. We must stay positive - I try to visualise a good outcome as much as possible. When I feel okay I try to laugh as well.

Please keep posting!

Christine XX