I haven't formally introduced myself yet so here goes...
My name is Katie, I'm from the UK, I'm 27 years old and a few weeks ago I was diagnosed. I have a deep tumour greater than 5cm (TNM staging - T2bN0M0) between my calf muscle and my shin bone, pressing on the main artery of my leg. I'm having 25 radiotherapy doses to try to shrink it before surgery in January.
I'm currently halfway through the radiotherapy, the tumour is swelling up all angry and the burn has begun to appear on my calf. Yesterday the tumour started to hurt more than usual. What was discomfort has become sharp enough to be considered mild pain. The pain is reminiscent of when I had my biopsy, only not as bad yet. When I had the biopsy I was in severe pain for over a week, and couldn't put any weight on the leg for 10 days. So it's not as severe as that, more like an echo. I'm anxious of the pain increasing to how it was after the biopsy.
I'd really like to know what other people's experience is with pain during treatment. Can it get worse? Can it become chronic or can it stay sporadic? Is it normal?
Any information would be a comfort. Thanks for taking the time to read this.
Hi Katie, I’m in the UK too. I was treated at UCLH for post operative radiotherapy. Where are you being treated? Speak to those treating you about the pain. I had terrible burning and pain, was using aqueous cream and on Oromorph for pain but believe there is something better called Zoromorph which is longer lasting. But you must tell this to those treating you asap. I live in Merseyside but was treated in London. All the best Louise xx
Pain etc was over two weeks from finishing treatment. You may feel very ill at the end as sometimes they give you a ‘super dose’. Felt like flu but it passed xx
Whereabouts in Merseyside? I only ask coz I used to live in Liverpool but I'm lately of Manchester, which is lucky coz I'm a 5 minute bus ride from the Christie hospital, which only treats cancer and specialises in sarcoma. Sorry to hear they sent you all the way down to London, what a ball-ache x
I'm seeing my oncologist tomorrow afternoon, and my physiotherapist in the morning too so I'll speak to them both. Ideally I want to save the good meds for after they cut me up.
I'm dreading the surgery. I haven't seen my surgeon since he diagnosed me and I have no idea about the recovery time or anything. My housemate was going to take time off work to look after me but what with the cuts she can't receive any carer's allowance unless I'm going to be disabled for a year or more, so I'm not sure how I'm going to manage around the house. If you don't mind me asking, what kind of post-operative support have you received?
My surgeon wants to try and spare the limb if possible, he seems to think he can. He talks like he's done similar operations before with success, although I didn't ask him at the time as I was reeling from the news. I didn't even know amputation was a thing. When he was telling me about sarcoma he mentioned,
"Now some people might be wondering, 'Am I going to lose my leg?' but it's really too soon to be going down that road." And I thought,
"Amputation? What?!"
Next thing I knew I was waiting for a CT scan to make sure it hadn't spread to my lungs and I haven't seen him since. My main oncologist I see every week is a consultant radiologist. I tried asking her about the surgery anyway, she has offered to chase my surgeon up and get confirmation of my surgery date. Then I'll be able to go in and peck his head for info. My physiotherapist has treated sarcoma patients before, and helped them recover from similar limb-sparing operations but I don't know what their recurrence rate is.
I don't know all the ins and outs of the decision making process, but I know it was decided by a multi-disciplinary team and I'm at the mercy of their experience and education. I take it your own personal experience involves amputation?
Sorry to hear about your diagnosis, your head will be all over the place. My ss was in my knee and they removed it first then i had about 26 rounds of chemo. I was really lucky, before i had the tumour the pain was unreal don't think i slept for 6/7 months but after it was removed i had no pain whatsoever. When they do the op to remove the tumour they give you a nerve block which is awseome. See your GP or whoever you can see first who can prescribe pain relief and get something, if it doesn't work go straight back and get something stronger, you don't have to put up with any pain there is no need to, i wish i'd realised this myself at the time.
I live in Cumbria and am being treated at the Freeman in Newcastle. Wishing you loads of luck. Make a wee list before you go back to the hospital with your questions, hope that helps a bit, i'd usually forgotten one or two by the time i got there.
I grew up in Cumbria! It's these little connections that are really helping me to feel less isolated. Don't get me wrong, I have a tight support network around me and I'm very lucky, (relatively speaking... lol) but somehow nobody gets it. I'm not sure if I'm just kicking off at those closest to me for the sake of blowing off steam. I've been a little unkind to my patient, devoted boyfriend, who's only trying to help. Still, I would rather not hear again that his ex says everything's going to be fine... :/
Thank you for the kind words of support and advice, I hope for everyone's sake I can start to ease off the pressure on my friends :) x
Hi Northern ladies! I live in Southport but from London originally and still with family there. So my treatment went the other way round. First surgery and then radiotherapy. The main issue with surgery is getting an infection in the wound. This happened to me and I had to go back to hospital for what they call a wound wash out. It still wasn’t healing and so they used something called a vac pump which was fantastic. I wore it for 6 weeks but at least I could drive a bit without worrying about leaking dressings. Finally it healed from the inside up and once healed I had 6 weeks of radiotherapy. My wound was at the top of my inside left leg, so the pelvic area. The radiotherapy was very tough as that whole region was affected outside and in, hence the Oramorph. They probably can’t give you a surgery date till your skin has healed completely from the radiotherapy and they can see it has shrunk sufficiently. You are in good hands at the Christie I am sure. I am in a Facebook group ‘sarcoma patients in the UK and Ireland’. It’s a closed group but you can just ask the admin to join or post your full names on here I will try and find you both on. Facebook and send you an invite to the group. There are others in Manchester and I am sure. Newcastle. Maybe you two are in the group already?? Xxxxx
I actually had pain for the first time from my Tumour (neck ) during Chemo,my Surgeon reckoned it was maybe because the lump had shrunk slightly that i was feeling the pain, So maybe not a bad thing?
Hi ladies,
I am a northern girl too , originally from Liverpool but emigrated to Australia 3 years ago , I was diagnosed with synovial sarcoma in my left ankle after 2 years of pain , diagnoses on 10th December , 2 days later PET scan, MRI and CT scan and no spread which is amazing , I am having a below knee amputation on New Year’s Eve , so it should all be over with then
Not looking forward to the op but looking forward to getting rid of this nasty little bugger once and for all.
Good luck to all of you , Louise x
I'll be out and about in Liverpool on NYE, and thinking of you, and once I'm wasted probably telling a bunch of people I just met all about you. That's my way of saying you're in my thoughts, and I wish you every success xxxx
When I was in the middle of radiation therapy, I began to have excruciating pain. It was because the radiation was doing it's job and the tumor was starting to die inside which caused it to swell and push on a nerve. They put me on Oxycontin, steroids, and oxycodone to control the pain. Shortly after treatment ended, the pain subsided greatly and I was able to wean off the steroids and the oxycontin. I had my surgery 8 weeks later and the pathology said the tumor was 70% necrotic. So, I guess pain can be a good sign. I hope it is for you too.
My wife is 28. I cannot comment on her pain from the tumour direct. Hopefully you can find some comfort in the knowledge of community. Stay positive, keep researching and keep asking questions. I hope your surgery has went well and you enjoyed your new year. We got merry at ours with friends with kids for the first year of our lives (the kids all went to bed together and slept late) I invited the next door neighbours in (75 yr olds) after the bells and killed the party, I got them so drunk they got carried home it was hilarious :)
Any way. You guys would get on well, if you have anything we can help with we will try. Aw the best