Cholangiocarcinoma is a rare cancer, and almost unheard of in someone my age (typical patients are diagnosed in their sixties or seventies). For those of you who don’t think I’m one in a million, a person’s chance of getting bile duct cancer is less than 1%, and only 1.8% of those are my age. It also displays no symptoms in its early stages, so is usually not diagnosed until it has advanced, as in my case. Because it is so rare, there is very little that is known including how to successfully treat it.
In March, my oncologist, in consultation with colleagues at the University of Colorado, started me on chemotherapy. Unfortunately I was unable to complete many of the scheduled sessions as multiple complications, including severe anemia and systemic infection, interfered. Based on my most recent CT scan, the doctors are in agreement; the current chemotherapy regimen is not working. A new treatment plan which might include a different chemo treatment or immunotherapy is being discussed. Although I have not been unhappy with my treatment in Denver, my doctor is a general medical oncologist with little or no experience with my type of cancer. As this is a particularly aggressive form of cancer, I feel strongly I need to consider additional options.
Therefore, I have decided to explore MD Anderson Cancer Center in Houston, TX. As you might be aware, MD Anderson specializes in cancer care, and is generally recognized as one of the top 2-3 cancer hospitals in the United States. Available resources, including the most advanced diagnostic technology, their medical professionals' depth of experience and expertise, and access to cutting edge treatments and clinical trials, I believe afford me the best chance for a positive outcome. They employ one of the only (if not the only) oncologists in the country who specializes in cholangiocarcinoma, Milind Javle, M.D.
Unfortunately, MD Anderson doesn't accept my insurance, so I need to self pay for their services. I have already contacted MD Anderson to get the process started. The estimate for an initial consultation and evaluation is $25,400. This does not include any treatment, or the costs of travel and accommodations. And while this is a large number (especially considering this is before any treatment, which undoubtedly could be a much larger cost), I truly believe this is far and away my best option.
Please don't hesitate to contact me with any questions/comments/concerns, I am more than happy to provide any helpful information.
Thank you for your consideration.
- Jason Ott
- Ben and Sheila Siller
- Nate Ushio
- Anson Kendall
- Shannon Johnson
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