Guest Post by Philip Wright
Adam has Stage IV Neuroendocrine Tumors. They’re sometimes called NETs and used to be called carcinoid tumors. His primary malignant tumor was located at the terminal ileum (where the small intestine meets the colon). Doctors also found metastatic tumors in his liver and lymph nodes.
NETs are rare, poorly understood, and challenging to diagnose. Patients often show up with symptoms that are consistent with less serious conditions, and NETs are hard to detect with imaging. Usually, NETs go undetected until they cause painful complications, by which point, they’ve spread to other parts of the body. This is what happened with Adam. He went to the hospital when something didn’t feel right, and the initial tests suggested he had pancreatitis. It was only when his symptoms didn’t improve that cancer was suspected and his liver was biopsied. That biopsy confirmed his diagnosis.
Adam’s cancer is Stage IV because it has spread to another organ, the liver, from where it started in the ileum. Though NETs don’t begin in the liver, the liver is such a good environment for tumor growth that it’s one of the most frequent sites of metastasis.
What’s the treatment plan?
Adam has already had surgery called a bowel resection to remove his primary tumor. Doctors removed ten centimeters of his small intestine (the ileum) and the first third of his colon, as well as the cancerous lymph nodes around his ileum. Adam likes to joke that it was a BOGO surgery because the surgeon also removed his appendix during the procedure. (The appendix attaches where the ileum meets the colon, so it had nowhere to attach to.) His small intestine was then reattached to his colon. The initial recovery for this surgery was about three weeks, but some of the effects will be with him for life.
Adam will also need liver surgery to remove the metastases on his liver. This will be a much more invasive and unpleasant experience. Our mom, a retired nurse, has said this is “probably the most painful abdominal incision you can get.” Adam has found some levity in this situation, calling it another BOGO because they’ll also remove his gallbladder.
All of this is complicated by the fact that there are more tumors in Adam’s liver than are showing up on his scans. MRIs and PET scans have shown at least five cancerous lesions on his liver, but his liver surgeon has made it clear that in cases like Adam’s, this many lesions being visible on the scans means there are more that haven’t been detected. She said she expects to find at least ten during the surgery itself. To help the surgeons find these lesions, Adam is starting a six round course of infusion therapy that will hopefully make some or all of the lesions visible on scans before surgery. During surgery, doctors will ablate, or burn away, as many lesions as possible and try to cut out the rest. His surgeon anticipates Adam will lose between 15 and 20% of his liver in the process.
What is Adam’s prognosis?
Adam’s ultimate prognosis depends on how this next surgery goes, but the doctors on Adam’s oncology team are optimistic. There are basically three possibilities.
Doctors can remove all of the cancer (most desired outcome)
If doctors can remove all of the metastases from Adam’s liver, he will likely need nothing more than possible infusions and regular scans to check for cancer recurrence, but will otherwise be fully cleared to live a normal life.
Doctors can remove some, but not all, of the cancer (less desired outcome)
The good news about NETs (if there is such a thing) is that they grow very slowly. NETs are graded according to how fast they grow, and Adam’s primary tumor was Grade 1, the slowest-growing grade.
So, if doctors can remove some, but not all, of the lesions in Adam’s liver, he would receive regular imaging and monthly infusions for the rest of his life. The infusions would hopefully prevent the remaining cancer from growing or spreading. Adam’s ultimate prognosis would depend on how he responds to that treatment, but it’s effective in preventing tumor growth in something like two-thirds of cases for at least a year and a half. Given how new this infusion protocol is, these are very encouraging results.
Doctors can’t operate on the liver (least desired outcome)
Because the cancerous lesions on Adam’s liver aren’t all showing up on the scans, it’s possible that there are enough “invisible” tumors that the doctors will open Adam up for surgery, discover there are simply too many to operate, remove one for grading purposes, and leave the rest. In this case, removing the cancerous lesions would mean compromising his liver function so much that it would basically be nonfunctional. As you’re probably aware, livers perform a number of critical functions related to not dying, so a nonfunctional liver is a no go. As far as prognoses go, this would be in “cross that bridge when we come to it” territory, but obviously not great.