Please Be Aware, Medical Institutions Are A Business Too.

I can’t agree with this post more.

When my mom was first diagnosed with cancer, she was in Nashville. She was told that she had adenocarcinoma with unknown primary after a liver biopsy. That prompted us to move to New Jersey, where she has been getting treated at MSKCC (Sloan-Kettering). Up until we saw Dr. Fong here, everyone (even at Sloan-Kettering) told us that her primary cancer was unknown. Dr. Fong confidently told us that she had cholangiocarcinoma even though he did not have any additional information. We were so grateful for finding the primary that we never thought to get a second opinion (his stellar reputation also made us trust him completely, and we would have done anything for him to perform a surgery on my mom).

When we got to Mass General for a second opinion after her tumor grew and her cancer spread, the doctors there told us something we had never heard before, which was that there was something about her biopsy report and CEA numbers that suggested that her cancer could be colon-related (my mom’s father had colon cancer as did her sister and half-brother). They are waiting for the pathology slides to make a more conclusive statement, though they said they are 80% sure that this is cholangiocarcinoma. We were also recommended to get a genetic testing in addition to the one that they are already doing for the clinical trial for Cabazantinib. (And based on the 80% diagnosis, we tentatively agreed to start her on Cabozantinib.)

Based on this experience, I’m realizing that yes, not only are hospitals businesses, but that their doctors and tests are also not infallible. This is why this forum is so invaluable. My family has been making the decisions that we think are the best based on the information that we have, mainly thanks to the tireless effort of many of you on this forum.

For those who are just starting on this journey, I would suggest, in addition to getting a second opinion, asking lots of questions. I for one am more than happy to answer questions off the forum about some of the more personal aspects of my mom’s experience so far — on getting treated at MSKCC, on getting gem/cis, the financial aspect of her treatment (which is rarely discussed on this forum), the emotional toll of the illness on the patient & family, etc., etc.

Thank you Percy for this post.

Caroline