From stem cell donor to carcinoid tumor patient: My unexpected detour

I labeled the daily emails from our March trip to MD Anderson for my brother’s stem cell transplant “our adventure,” and that’s exactly what it turned out to be.

I was excited to be a stem cell donor for my brother, Dan, who has leukemia. But when the doctors performed a chest x-ray, they discovered a questionable spot on my lung. We hoped it was nothing, but scheduled a CT scan to make sure.  

The scan revealed a tumor on my lung. I cried to my sister as I told her something was wrong.

“We’ve been here for a week, and you are the first person we have seen cry,” she said to me, telling me to remain calm, be positive and toughen up.

“All these people knew they had cancer, and now I might have cancer,” I responded.

Neuroendocrine tumor diagnosed by chance
Eleven days after I arrived in Houston, I was told I had a carcinoid tumor in my lung. This is so not happening to me, I thought. I had to tell Dan I couldn’t be his donor. 

My husband arrived the next day, and the next two weeks we did follow up scans and test to make sure the tumor hadn’t metastasized.

This trip did not turn out the way it was supposed to. Or did it?

Carcinoid tumors, also called neuroendocrine tumors, are rare and slow growing. Between 11,000 and 12,000 new cases are diagnosed each year.

From talking to other lungnoids -- yes, that is what we call ourselves -- I’ve learned that a lot of us were diagnosed by chance. Many other lungnoids told me they were misdiagnosed for years since many doctors are not familiar with this type of cancer. 

My carcinoid tumor surgery
My tumor was low grade and small. I was referred to James C. Yao, M.D. The best carcinoid tumor treatment option for me was surgery, but I had time to make a decision on where to have it. Should I have the surgery back in Florida or someplace else?  My husband and I talked about it and decided to have the surgery at MD Anderson. 

My surgery went well, and my blood work was good. I didn’t have to do chemo or radiation, and the chance of this cancer coming back is very slim because it was caught so early.

A few months later my brother Dan had his transplant. The stem cells came from my oldest sister, Molly. Dan was on the 17th floor while I was on the seventh floor.  Keeping things in the family took on a new meaning.

I went to MD Anderson to save my brother’s life, but in the end, he saved mine.