I talked to the doctor earlier and the final word is that the liver biopsy DID come back negative meaning there are no medullary TUMORS in my liver. The Octreotide scan showed that the tumor in my small intestine isn't medullary either. So THAT is good news and I'm very happy with that.
He confirmed though that I have medullary cancer "seeds" throughout my body meaning this will be a lifelong battle. We will be testing me regularly and watching for WHEN new tumors form. Most likely places for them to form will be the lungs, liver, bones/spine, and brain.
My next surgery date is May 10th. I will travel to Tampa on May 9th for my pre-op and then start the operation on the 10th. What we will be doing this time is the total thyroidectomy (removing ALL of the thyroid and the tumors there), a selective neck dissection (meaning we will remove all lymph nodes that LOOK diseased as well as the ones directly around the thyroid) and could remove upwards of 70 lymph nodes, and also we will remove ALL of my parathyroid ( here is a picture for you...). We will take one of the parathyroids that isn't diseased and reimplant it in my forearm. This is so that if it fails later they don't have to go back in my throat and do surgery again.
The funny thing though is that Dr BC said we will be doing SEVERAL neck surgeries on me to remove more lymph nodes in the future "as they become cancerous". So we're not doing "if" but "when". Most times they try to do only one surgery on your neck because the more they do the more risk there is to the patient. We don't have a choice though on this.
The sucky parts are that my 5 year anniversary is on May 6th and Mother's Day is on the 8th. LOL. These surgeries and scans seem to be sucking all the fun out of my year. At least this time I can be with my family on those days and hopefully have something nice (mentally) to take with me into the OR.
I'm okay with this. I figure that we thought the tumors were medullary already so I had already accepted that. So knowing that it has spread and will show up later is no surprise and I'm not worried about it. Shit happens and I had already accepted that it happened to me. This way I just have more time and that is a VERY good thing. I won't lie and say I'm not scared because medullary cancer is known for showing up as lung, brain, or bone mets mostly but I won't think of that right now.
So that's the next step. After that we will figure out what is going on with that tumor in my small intestine because Dr BC doesn't know WHAT it is. That's a little scary as well- not knowing what this other tumor is and if it's something to be worried about.
One day and surgery at a time. I guess that's the best we can do.