Wednesday, November 25, 2009

1 to 2 percent of 1 to 2 percent = rare

I have metastatic lung cancer - carcinoid tumor in the lymph node. It traveled from the tumor that was in my lung before. Only 1 to 2 percent of all lung cancers are carcinoid tumors. Of those, only 1 to 2 percent cause Cushing's syndrome.

The oncologist we met with yesterday, and his nurse practitioner, talked about some of our options for treatment. He would like to get the opinion from 11 others who can provide information on these types of treatments for what I have. While they haven't seen someone like me before, the oncologist would like a consensus on a plan.

For now, the options are (1) surgery to remove the tumor - which would be done by my previous surgeon, but this time via a small incision at the throat area; then (2) radiation therapy, possibly in conjunction with chemotherapy. There are a few options for radiation therapy. One is a three day treatment that is extremely intensive, known as SBRT. The other option is a basic radiation therapy that is five days a week for about six weeks.

I am keeping my surgery date of Friday December 11th with Dr. Bull. I am supposed to hear from the oncologist, Dr. Akerley, within the next week with the final decision on treatment. Also, I should then hear from my endocrinologist, Dr. Jones, on the postsurgical treatment for Cushing's.

I have really tried to stay educated about my illnesses, learning about causes, treatments and recovery. Reading other people's stories, journal articles, and websites associated with hospitals and organizations. This helps tremendously when I go see doctors. I can ask questions and voice my concerns based on this information. I notice how the doctors and nurses treat me differently because of how I present myself to them. They can see I have the capability to understand and communicate in an educated way. I think this makes them more comfortable to give me more information than they may another patient. I can take it.

1 comment:

  1. As a carcinoid patient I would strongly recommend you visit the following site: