Hello, a couple of days ago I did a presention not unlike the one you'll be reading shortly in the Sarcoma Alliance Facebook. Some of you will know me, many others wont, even so... here is my story, or to put it right, my wife story, Heidi.
Around 9 years ago Heidi started noting a lump on her right ankle (outer part) which was diagnosed as a Synovial Cyst. Year after year the doctor said the same speach, if it doesnt affect you daily life, leave it there.
Leon, our son, was born Sept 2014; he is 1 year and a month old, HE IS SUPERB!!!!!!
This March Heidi noted a lump on her right thigh (it hurted a little), after LOTS of exams and two biopsies (thigh lymph node and "Cyst" on ankle), the diagnosis was changed to Soft Parts Sarcoma.
PET "blinked" only on both areas that we already knew, though the nodes extended from thigh to just above pelvis.
Almost a month ago Heidi had a successful surgery (no biopsy results yet), they removed everything from the ankle (which was inmobilized, incredible surgery with 3D navigation) and the node area was claned up thoroughly.
Heidi is getting better at an incredible rate, no swelling or anything, which is really great! (she cannot use the operated foot for the next 3 month). The bad thing is that a very little lump appeared overnigth last week under her collarbone (just under the skin). We are a little affraid of this (eco doesnt show anything conclusive), we'll have a biopsy next Tuesday.
We live in Argentina and there isnt any "official" Sarcoma center. We are going to Hospital Italiano, which appears to be the place to go in the Country. The doctors are top notch, but are not "specialized" in Sarcomas... which makes me a little, well you know.
The oncologist said that we are going to do another CT, if everything was in place, the next step was to do some wide area radiation in the thigh + pelvis. Again the new lump is giving us the creeps with this.
I took the chance and made an appointment with an "Investigative doctor" which did had some sarcoma specialization. She is an eminence with soft parts tumors and said that if we do get "clear margins", she wouldnt do any radiation. BUT she couldnt take the case (she doesnt handle any cases right now, because of multiple travels and line of work).
Hence, right now we are left with two different routes:
- Do radiation as the "non-specialized" onco suggested. I have to remark that he wants to avoid rays to the ankle, probably for healing issues.
- Dont do nothing, as the specialized doc suggested, but she wont be doing any follow up either.
I have to leave clear that Im not really sure that Heidi has an SS, all the biopsies only mentioned Soft Parts Sarcoma; Im just assuming as this was originally diagnosed as a Synovial Cyst and live in the outer part of her ankle (no bone compromise).
Im sorry if sometimes I do mistake myself and my wife as the "patient" here, but Im taking the investigative approach (and do speak english, which is helpful).
This last couple of weeks Ive been doing TONS of research and Im preparing everything for the next meeting with the Onco (this Wednesday), so hopefully Ill have some further data to share.
Any suggestion, possible questions, further questions for me... just anything will help :)
Heidi, Leon and Ariel