...oh, really? shit....headed home

FDG-PET: Note the large tumor lesion with an SUV +/- 60.

FDG-PET: Note cross hairs on the "potential" primary tumor in the pancreas.

I am out of the hospital in Germany and the good news is that I will not have to return for 12 months… the bad news is that I need to have surgery soon. It turns out that the large potentially 90% benign lesion IS NOT BENIGN after all… This wouldn’t be so bad except that now, it appears as though I don’t have a pure NET, but some type of rare unidentified hybrid (both in the liver and primary). This was revealed by the FDG-PET scan. These suspect tumors have massive FDG uptake. (-a scan that is available in the US an none of my doctors thought to order…???)

This “mixed-tumor” didn’t happen overnight, it has been like this from day one, but we only now have the information to deal with it. My disease is no worse than when I walked into the hospital, but the information we have changes the plan, and potentially the prognosis, greatly. Luckily, the disease has not yet spread to brain, bone, or lymph nodes. (from observation over the last 14 months, things appear stable). Nevertheless, Dr. Baum urged that I undergo surgery as soon as practicable. However, it is now unclear exactly what that surgery may be? I am adamant about not having a liver transplant anytime soon, this I know. It is also unclear if a straight resection of the largest lesion is possible, or, if the staged resection is still feasible. I will be discussing this with Dr. Botha (US liver surgeon) over the next few days /week. I suspect more tests will also be indicated upon my return to the US. Below are a few notes from my recent medical report. Please note that there are still many questions to be answered, so we proceed with caution:

‘The mass lesion in the right apical liver segment S8, which itself is receptor negative, exhibited an extremely high FDG-uptake and most probably corresponds to a malignant tumor lesion…” Here, they are talking about the largest tumor in the dome of the liver.

It is “…urgently recommend that this lesion should be resected as soon as possible (if you do so, please store a portion of the tumor in liquid nitrogen for further genetic analysis of the TKTL1 gene… -and please have Ki-67 index determined) together with another metastasis in S6 segment and a small hypermetabolic one in the left lobe…”

“…the primary tumor is most probably located in the tail of the pancreas near the spleen hilus and close to the stomach wall and is also FDG-avid and SMS receptor positive.” Here, they are indicating that the potential primary location has these hybrid characteristics.

“All other liver mets are not taking up FDG which points to the possibility that the patient has a “mixed tumor type” , i.e. some mets are highly differentiated (slow proliferative) whereas others are more aggressive…”

“…data analysis of over 4,500 receptor PET/CT scans shows that FDG uptake in these patients is also related to prognosis, i.e. as lower the FDG uptake as better the prognosis.”