Hey everyone!!!!
I'm writing with an update on Paula situation.
Paula is now one year status post resection of a primary and radiation for her ASPS of the right pelvis.
Here is the impression from the raport after MRI and CT she just did in Boston this month:
"Significantly increased right hilar lymph node and interval slight increase in the size of a left upper lobe pulmonary nodule, measuring 3mm, concerning for progression of metastatic disease. At the same time numerous bilateral pulmonary nodules, several have decreased in size."
As I read it I found it very serious, although it's only 3mm nodule that grew over the last 6months. I HATE the word progression.
Doctors talked with her as if the news from raport were nothing. They told her they would call her status stable. That the word progression is exadurated.
I wander why would they say that?
Before radiologist wrote his raport of lung CT, Paula appeared disease free to her surgeon. (that's really wonderful, but it was spoken too soon I guess Surgeon looks at CT on his computer, radiologist spends hours of looking at the huge monitor)
This is so frustrating. Disease free - what a dream!!!!
What a dissapointment when Paula read the word progression! WHen this horrible nodule grew other nodules decreased in size. How is it possible? Does it mean sutent stops working?
She is souposed to continue on sutent but lower the dosage due to side effects as diarrhea, foot discomfort and also maybe it would be better to stop taking it one day and just watch what happens. Easy to say. I don't know if she would want to be not treated at all.
Lung surgery is not a right way in Paulas' case according to our Boston doctor. Her lung nodules are too small for surgery.
So this is all at the moment from us. I feel very happy to be a part of this forum and whenever I have news I'm writing. I just wish I was writing with the better news. And I whish this to everyone here. I hope all of you stay brave in learning about ASPS and continue to get and give the support. Healing whishes for all
m
Love