Sarcoma removal

hi Lilley 

Sorry to hear about what you are going through after your surgery, not a form my wife went through so hopefully someone can share their experience. Have you tried contacting the oncology term to discuss how your are feeling to see if they might be able to help.

<<hugs>>

Steve

Hi, thank you for reading my post. I haven’t been referred to any oncology team, I was sent home after a week in hospital, still with a drain in the wound from surgery.  They took the drain out a week later at the ‘plastics’ clinic, I was sent home with an appointment to go back to plastics at end of next month.  I was initially fast tracked for this sarcoma in January this year but I have had almost zero conversations with anyone about what they have removed or any further treatment.  They think it’s possibly a Myxoma but waiting to see confirmation from biopsy.  I feel really let down, frustrated at lack of discussion, and I have no contact point to discuss anything with anyone, no letters as it’s all been via phone etc.. I really feel abandoned and left to get on with it until they are ready to talk to me. 

I had a quad removed in 2012. Large tumour taken out. I honestly can’t remember the pain now. Since then I’ve had a chunk of by glute removed too. What has been removed on your leg? 

Hi, I’ve had a sarcoma removed, surgeon said it was a bit of a beast with a tail - the wound runs from the very top of my left thigh and stops just above my knee, they suspect Myxoma but waiting for biopsy results to confirm, the couldn’t get any defining result from needle biopsy

thanks

Hey - could you please expand on your diagnostic process? I have a lump in my arm and only had an ultrasound and they still are unsure m - they want to jump right to excisional biopsy without needle biopsy or MRI, and also done by a general surgeon. Was your needle biopsy and removal done by a leg surgeon or oncology team? Thank you, want to make sure they dont spread anything :( 

Hi, I initially had a needle biopsy, they took 3 samples - 3 depths of the sarcoma.  After waiting a couple of weeks they said they couldn’t definitively identify which sarcoma it was and that I would be going in for surgery to remove the whole thing and they could get a better biopsy sample that way.  My operation wasn’t done by the oncology team either, it was done by a plastic surgeon.  The only reason I had a CTC scan and MRI & ULTRASOUND was because they were checking me for a different problem! I had gone in for bowel problems and the sarcoma was picked up on the scans.  Ironically, 3 years ago I had gone to my GP’s with a small lump at the top of my thigh, the GP dismissed it as a ‘fatty lump’ with no follow up testing, I’m still angry about this…it could have been removed before it reached such a large lump and a 10 inch scar down my thigh.  I’m 7 weeks post surgery now, still in some pain and not fully mobile but getting a little better daily, provided I don’t push myself too much.  The greatest news is that my biopsy came back benign, it was a Myxoma, the relief is immense but I will remember the fear forever.  Good luck with your journey and hopefully you too get good news and a speedy recovery.