Giant cell tumour on soft tissue

So, after 3 years of knee pain being told it was my weight, my dodgy hips etc then being sent to physio, paid for a chiropractor and everything else of being passed around, I ended up having an MRI (yes three years on!) only to discover a massive lump which after keyhole on my knee in October when the biopsy was done to be told it’s a giant cell tumour which started on my ACL.. they took the biopsy from there and told me it was all out - turns out that was a lie! And I still have a significant lump at the back of my knee and now being referred to a sarcoma and soft tissue tumour doctor.. I’ve completely lost trust in them now. I’ve been told it will be extensive surgery if they decide to operate (I haven’t seen any cases online when they don’t operate!) but I’m worried for so many reasons.. it’s very near / on my main nerve, vein and artery for my leg. 

I see new consultant in 2 weeks time, but I’m bricking it! My consultant has basically wasted 4 months before referring me because (and I quote) he wanted to “sit on it” to see if it grows more!! 

I get married this year, my job is during wedding season and I’m on my feet all the time and trying to lose weight. 

I’m in panic mode! I can’t find anyone with the same case of it not growing on a bone - especially in the knee. It’s super painful and my knee keeps giving way 

 

Has anyone tried anything to help them relax or take the pain away a bit?? I’m very fed up now! Thanks! 

  • Hello Tor94 and welcome to Cancer Chat,

    How unfortunate that it took 3 years for an MRI to be arranged and to later find out that it was a soft tissue tumour. I hope you find out soon whether you will be having an operation and that the new consultant can provide a bit of clarity on all this in two weeks' time.

    I can totally understand why you are feeling frustrated after everything you have been through in the last few years. Try not to panic too much if you can - I know it is easier said than done - but hopefully the new consultant will be able to put everything back on the right track. What you describe sounds really painful and I hope they have a good treatment plan in place for you soon. Do mention to your doctor that you need help with pain relief as this is affecting you a lot.

    We have some information on our website on soft tissue sarcomas which you can find here.

    You might also be interested in reading this thread by [@JesterTiger]‍ who has previously had a sarcoma on the thigh so feel free to respond to that thread too if you wish. I hope you will be able to connect with others here who have had a similar diagnosis and who may have some tips to help you relax and deal with this intense pain.

    Best wishes,

    Lucie, Cancer Chat Moderator