I want to thank everyone for their feedback yesterday. It was very helpful in solidifying my beliefs regarding PET and further scanning. Yes my opinion is solid - solid like Vaseline - but, then again, isn't everything when it comes to these types of decisions. Here is what I have come up with: in this case a PET scan will likely not clarify anything nor will it likely effect her clinically. In fact, it is most likely to simply muddy the waters.
My thought on its utility to provide a baseline is still valid but, now, we have to decide how valuable that is. And, that is an extremely difficult question to answer. Is she MIBG avid? Do you believe that she has relapsed previously?
It is all very nebulous.
The one thing I do know is that the big brains (orthopedic surgeons specializing in oncology) have vetoed biopsying her. Frankly, they think the likelihood of the sample providing anything diagnostic is slim to none. Apparently the spot on her breast plate is extremely hard (literally) to biopsy and samples from that area are generally non diagnostic. Furthermore, given the position and location of the other lesions they felt that they were not worth the risk either.
So, no biopsying. Yeah - I think?!?!
The good news to come out of all of this is that they now have a new "proven" theory on the lesions. The orthopedic surgeon reviewing Sydney’s scans for past 7 years felt that these sclerotic areas likely represented “healing process” of old bony metastasis and is a process seen in other solid tumors and in fact, quite common in women with breast cancer bony metastases. Given this theory it was her opinion that we would likely see more of these as Sydney's body continues to heal.
Good news? You bet! But, don't forget that it is one theory amongst others who will tell you flat out that they believe these lesions to be neuroblastoma. The consensus is still out. There will be more discussions throughout the remainder of this week and we are still awaiting several opinions from around the country. We are on the hunt to find other institutions that have seen similar lesions in their long term survivors.
Regardless, I find these latest opinions comforting. Perhaps a wait and see approach is best.
I can't believe I just said that.
Purpose, lead the way.