DanaG

Hi All,

I hope I’m posting in the right place, but if not, please feel free to redirect me.

My mother, age 70, was recently diagnosed with cholangiocarcinoma. We are heartbroken and looking for the best place for her to receive care.

My parents live in Fort Lauderdale, Florida, but we are trying to get her to MD Anderson in Houston, however the insurance company is still reviewing the out-of-network financial agreement, which apparently is much higher than they typically pay.

It took 5+ weeks from when we first saw her oncologist in Florida to get the CC diagnosis. In the mean time, he thought she had metastatic colon cancer to the liver and has been treating her with the associated chemo regimen. He said she is “responding well”, but that it’s the second- versus first-line treatment for CC. He wants to look at one more round of labs before deciding whether to switch her to first line. I’m thinking that first-line is the way to go since I haven’t read great things about second-line. This is one of the many reasons that we’re eager to get her to a cancer center with a multidisciplinary team and CC specialists.

In case we’re not able to go to MDA, I’m wondering if anyone could provide some alternatives within Florida. Do you know which is the best place in Florida to receive care for cholangiocarcinoma? Since it’s such a rare cancer, we want to make sure we go somewhere with the best possible specialists.

Thanks so much,

Dana