Cancer update - 12/12

Well the big day came and went and was not as much of a rousing round of success as I would have hoped. I must say that the Moffitt Center itself was wonderful. Their whole mission is based on hope, and everything about the environment and atmosphere there was very hopeful, friendly, and positive.

I wish I had more news about cancer treatment. The doctor at Moffitt had to gather all of the scans and reports that Shands sent and some were missing. Figures! So it took over an hour to get everything sent to the office so that we could talk. He was able to get the biopsy results back from Monday's procedure and the suspicious areas in my small intestine were non-cancerous. So I have been officially declared as "unknown primary". He says that with all the scans and tests I've had done, if nothing has shown up, nothing will. He did concur with some of the doctors at Shands that in some cases the primary is never found.

The doctor says that there are two major categories of neuroendocrine tumors: typical and atypical. The typical ones have a primary that shows up on octreatide scans and are metastasized to the GI tract or lung -- usually the liver. Since mine has done neither, I am classified as the atypical type.

The doctor also said something I had never heard which was a bit scary, but since he is a neuroendocrine specialist, I would assume he would know about this better than anyone. He says there are both slow growing and fast growing tumors. The main way to determine which type someone has is be reviewing the biopsy samples. Evidently they are required to preserve the slide samples, so his office is requesting that these be sent from Shands for examination. He also wants to have a new CAT scan of my pelvis done to compare with the scan I had in August to see if there has been any significant change. He also wants to check for a specific enzyme in my body, the amount of which can help etermine growth.

Depending on whether I have the slow or the fast growth type, this affects which type of treatment I will receive, so again, I must wait to get a treatment regiment going.

The doctor does want me to find a general oncologist here in town that can administer treatment locally once prescribed rather than having to go to Moffitt monthly. Immediately, he is recommending that I work with an oncologist here to begin receiving monthly infusions of Zometa. This is a drug typically used for osteoporosis patients which helps to strengthen bone. He says that it is unlikely, but that these bone lesions can weaken the bone and make it more prone to fracture, so he wants to start this asap.

I am to go back to see him on January 15 after he has looked over the specimens. He also wants me to come a day early to do the new CAT scans so that he can review them on the 15th, so we'll be heading back to Tampa on January 14 and staying overnight and seeing the doctor the following morning.

So we're again playing the waiting game for treatment. At least we're finally moving ahead again so I'm very happy with that. The doctor wouldn't give any idea of any prognosis or anything because he said we don't have enough information to make any determinations. That told us for sure that that oncologist in Gainesville was way out of line in make sweeping statements about prognosis when a neuroendocrine specialist says that there's no way to know without more scans and analysis. I asked about clinical studies. He said this may be possible, but that most studies want easily measurable tumors and since mine are growing in the bone, this makes them difficult to measure, so that I probably wouldn't be a good candidate for most studies.

Once we know the type, I can begin treatment. He also mentioned that, down the road, I would possibly receive spot radiation treatments on the pelvic lesions, but stressed that that would be later.

It was so good to see all of my family down in Tampa. I had a great visit with my step grandfather and we enjoyed a very good lunch and visit with him and my aunt and uncle, and I was so glad to get to see my grandmother. She is very weak but I was so encouraged to see sitting up and able to talk to us. She was struggling I could tell, but overall it was a good visit. I told her I was praying for her and she has been praying for me. She said that God isn't finished with her or me here on Earth and that she's doing her best to fight this and we will fight together. That was encouraging. It was difficult seeing her looking so frail, but I trust that the Lord will see her through. She is in His hands as I am.

Thanks to everyone for continuing to keep me in your thoughts and prayers. God has been so good to us, and we're trusting Him through this all. He has never let us down and I know He never will. He has helped both Cindy and me to keep our sanity through this long process and the waiting, which as you can imagine is very nerve wracking, but He is faithful. I am blessed to have such wonderful family and friends standing by me through all of this. I pray that you all have a very Merry Christmas and a very prosperous New Year!