Cancer update - 10/5

My dad and I went to see the gastroenterology oncologist today. He says that since neuroendocrine tumors are metastatic by nature, our first course of action is to identify the primary source. This is usually the last part of the small intestine, but it can be elsewhere in the GI tract or on the lungs. I need to have an octreatide scan to help identify this. He says in some cases, the primary source is never identified, but that generally in those cases, chemotherapy would affect the primary source. If the octreatide scan reveals nothing, then a colonoscopy will be ordered. I had one back in January 2008 that showed nothing, but he said something could have come up since then. I've had some colon issues recently so that he said that he may elect to do the colonoscopy anyway even if the octreatide scan shows up something. He's not sure.

Once the primary source is identified (if it can be), he has meetings with both a gastrointestinal tumor board and participates weekly as part of a multi-disciplinary conference where cases like mine are reviewed with other specialists to come up with a game plan. He said that there is no set treatment for this type of cancer. They have to come up with a treatment plan. In some cases, they elect to address the primary source first and remove it surgically before other treatments. In other cases, other treatments will be employed first. They may also choose not to address the primary source at all and cover it via treatments.

Since he only deals with GI cancers, all systemic treatments are handled by yet another specialist, a medical oncologist. The medical oncologist will be able to answer all questions about treatment such as chemo, radiation, or other possible clinical trials that I may be eligible for either at Shands or elsewhere. He will be able to answer any questions about frequency of chemo, strength of the chemo, whether my hair will fall out, etc. (Cindy's so worried about my hair, I had to know that!).

He really can't give me a definite prognosis at this point. He said this is a very slow growing cancer, so the earlier it's caught the better. He says that generally they treat this with chemo and reduce the cancer and then keep it at bay indefinitely. He says that the chance of full cure is remote, but that they treat this type like other diseases. He mentioned diabetes, that although there is no cure, that it is manageable. He also mentioned AIDS and how it used to be a death sentence but now with newer AIDS drugs that victims can be kept going for many many years. He said that's the way this is done, that they would likely treat it and then I would have to have it monitored regularly for the rest of my life to make sure that it doesn't start growing again. I believe in God's full healing, so I believe I will be completely healed, but one day at a time.

The good news is that I have been released to resume normal activities as much as I can tolerate. Earlier I was ordered not to do strenuous things like yard work, some house work, and things like singing in the ensemble and choir at my church (which involves a lot of standing and swaying). They spoke to the orthopedic oncologist's office who released me to "run a marathon if he wants." I'm not thinking that will happen anytime soon, but I'm glad to be getting my life back and getting back to singing! Yay!

The GI doctor's nurse will be scheduling me for an appointment next week to see the medical oncologist and to have the octreatide scan. She is going to try to get them scheduled for the same day so that I don't have to make two trips to Gainesville. That would be nice.

So overall I felt the tone of this appointment was a positive one. They didn't make me any guarantees at this point, but I feel much better that I'm in good hands. Plus being in the Lord's hands too, I know I can't go wrong.