Topic: Mayo protocol has 65% BDC cancer free at 5 years
It looks like there is a cure for those who qualify. The Mayo Clinic created a treatment in 2002 that produces a 65% cancer-free survival for bile duct cancer at 5 years. Dr. William C. Chapman at Washington University in St. Louis, MO has been doing this treatment successfully at Barnes Jewish Hospital and other centers in Ireland and Europe since 2005 and has cured a number of patients with unresectable Klatskin and other BDC tumors (intrahepatic cholangiocarcinoma). The treatment protocol is now performed at 12 US cancer centers.
Gastroenterology. 2012 Jul;143(1):88-98.e3; quiz e14. doi: 10.1053/j.gastro.2012.04.008. Epub 2012 Apr 12. "Efficacy of neoadjuvant chemoradiation, followed by liver transplantation, for perihilar cholangiocarcinoma at 12 US centers."
Read that article and become your own advocate. The problem is that most oncologists do not inform their BDC patients of this option and most cancer centers that do not perform the protocol do not tell their patients about it. Why not? There are numerous peer reviewed papers on the subject all showing very favorable outcomes and high cure rates. Even on this website the treatment is mentioned but only with a lot of negative commentary that a patient may not qualify and no clear simple direction on what to do to find out if you qualify.
With a 5-year survival rate of less than 10% for standard treatments, shouldn't every person diagnosed with cholangiocarcinoma be immediately told about the protocol and told to send their scans and records to one of the 12 cancers mentioned in the above article to find out if they might qualify? It won't cost anything other than postage to do that and Dr. Chapman and others like him who are curing this devastating disease will quickly review the case at no charge to see if there is hope.
My wife died of BDC in 2008. We were not told about this treatment at any of the centers I contacted even though the studies have been widely known in the cancer oncology community since the first major peer reviewed paper was published in 2002 by Dr. Steven Rosen at the Mayo Clinic in Rochester, MN. I will admit it angers me that the first thing a BDC patient hears when they get the dire diagnosis and prognosis from their doctor, is NOT a reference to this protocol and to the 12 cancer centers, and an offer to assist in immediately transmitting the file to one of those centers for review. What is happening is that the treating oncologist withholds the information from the patient and gives the patient (very expensive) treatments that have little more than a 10% chance of success.
We all know at the outset that this diagnosis is a tough one. If the BDC has metastasized outside the liver the treatment is not available. If a person is old and has other complications it may be difficult to get a liver for transplant. But many BDC patients are in the 35 t0 60 years old range and healthy. There is hope and there is a cure and I know people who are cured today because they got the liver transplant after specialized "cleansing" chemo and radiation at one of these centers. Call Dr. Chapman in St. Louis or any of the Mayo Clinic Centers and they will quickly get your case evaluated. Or call me at 808-753-0290 and I will share my experiences with you and connect you with patients who have been successfully treated.
For the doctors who don't give their patients this information they will have to live with the knowledge that, if that patient dies of BDC, the doctor let it happen perhaps unnecessarily.