Am wondering if anyone here who, like me, has a sarcoma in their chest wall (primary or not) could share their treatment journey with me, as mine is still very confusing and scary. Have read and been told it is somewhat rare to have a sarcoma there and treatment options are eventually becoming scarce for me. Also, still hoping to bump into someone from New Zealand lol
Sadly, I’m not from New Zealand, but was actually diagnosed with synovial sarcoma of the chest wall too, in 2012. My treatment was successful but had me scared for a while. It consisted of Dexorubicin + Ifosfamide but I only went two rounds before the doctors realized it was not working for me, so they changed it to four rounds of Gemcitabine + Docetaxel and added 33 radiation sessions (which was tiring and I got burns from it).
The tumor barely shrinked but I was doing “okay” so they decided to operate. I actually had very high fevers for a week straight before surgery and nobody knew what was wrong with my body so they decided to postpone it. Went under constant observation and when everything appeared to be fine, I underwent a lateral thoracotomy. They removed a muscle, a nerve and part of my right scapula but I was finally cancer free.
Of course, later I continued with the other 4 rounds of Dexorubicin + Ifosfamide to complete treatment and because of prevention.
So sorry, I’ve only just seen an email about your reply now. I have no idea how I passed it. But thank you very much for your response!
I also had doxorubicin, but only that for four rounds and 30 radiation sessions. My tumour barely shrunk but was kept stable for a few months. I havent had any treatment whatsoever since around March last year but its now grown again and my doc’s are getting scared its getting quite close to my spine.
Do you remember the dimensions of your sarcoma when they operated? Mine is quite large so that’s been a worry for surgery ever since I was diagnosed. We’re in the midst of discussing ifosfamide, radiation, and possibly surgery but I havent met with the other specialists yet.
I also had fevers for over a week, and no-one knew what the cause was because I felt physically fine. I had my first round of chemo delayed because of this also. It’s actually quite nice to meet someone whose had their sarcoma in the same spot as well as a bit of a similar story.
Like you said, it’s actually nice to find someone with a similar story, especially with the fevers.
Yeah, chemo and radiation barely shrunk my tumor too and it actually was quite large when I got surgery, 17.5x19 cm if I remember correctly. At first, the doctors that saw me when I first arrived at the hospital were kind of unsure of performing surgery first because of its size, but when they realized the chemo + radiation weren’t actually “working”, they sent me to meet the thoracic surgeon and he decided to operate.
The last few months have been a blur for me so I apologise for the late response again.
My sarcoma is something like 16.5x5cm at the moment. I met with surgeons who were very hesitant to operate because theres a bit of the mass thats grown quite close to my spine already. They advised me to do anything I could to shrink it asap and the only thing my Oncologist had ready for me was another chemo - Ifosfamide. I’ve been putting off chemo since last year as I wanted to try to alternative ways. But I am terrified at the thought of possibly being paralysed if this tumor crosses my spine. Therefore I had my first round of chemo 2 weeks ago. Gosh, I HATED IT! It knocked me out so bad, it is horrible!! Im scheduled for my second round next week but I’m re-thinking doing Ifos again.
That is awesome that you have been cancer free since! I pray that I can follow your steps. I’m actually a little more hopeful after reading that your sarcoma was a little larger than mine but you still made it through surgery. Was yours very close to your spine at all? I really want to do surgery but it’s all very scary and the surgeons who’ve looked at my scans all have different thoughts on whether to do the surgery right now or not. I’m looking into getting a second opinion from private hospitals but it’s going to be a financial strain.
Thank you so much for your reply. Sorry if it’s a bit of an overshare or if I have asked you too many personal questions. Im just comforted knowing someone has a similar story to mine and I can actually discuss it with someone who understands what Im going through. It’s very hard for me to speak to my loved ones about my worries like this so thank you for allowing me to ask questions and vent a little bit.