Karen's Story - Bile Duct Cancer

Karen Vinci is a 57-year-old native Californian who was born and raised in the Bay Area and continues to work at her family's restaurant, The Fat Lady, a long-time landmark and one of Oakland’s finest eateries.

In 2003, after a routine physical, Karen was diagnosed with bile duct cancer (Klatskin tumor in the left & right hepatic ducts). After a biopsy confirmed cholangiocarcinoma Karen underwent 12 hours of surgery to remove the malignant tumor. The surgery was complicated. Karen's doctors at the University of California, San Francisco (UCSF) Medical Center removed 2/3 of her liver, the common bile duct, the gall-bladder and cystic, along with the hepatic artery that was grossly involved with the disease.

Due to some additional complications her doctor inserted two internal/external stent catheters to allow the bile in her liver to drain properly. Consequently, in order to avoid serious bile infections, Karen must visit Interventional Radiology at UCSF Medical Center every four to five weeks to remove and replace her bile stent/drain catheters.

For approximately three and a half years everything was going fairly well. Then in December 2006 a CT scan indicated cancer had returned in one of Karen's lymph nodes. As a standard procedure the UCSF Tumor Board met to discuss Karen's situation. The Tumor Board decided that Karen was inoperable and her only hope for survival was a protocol that included oral chemotherapy, 3D conformal radiation (external beam radiation therapy) and treatment with the CyberKnife® Robotic Radiosurgery System, a highly-accurate, non-invasive tumor treatment technology.

When Karen began treatment at UCSF she received the shocking news that her health insurance carrier had denied her coverage, citing that the 3D conformal radiation and the CyberKnife radiosurgery treatment were “experimental”, despite the fact that both the CyberKnife System and 3D conformal radiation therapy have received FDA clearance. Needless to say Karen and her family were devastated.

Several UCSF advocates, Karen’s doctors and family members wrote letters to her insurance company to no avail; they continued to deny treatment. The next step for the family was filing an official grievance with California's Department of Managed Health Care (DMHC), requesting an Independent Medical Review (IMR). Karen ultimately had to meet with the representative from the state agency to explain in detail why she needed the treatment prescribed by her doctor's and to remind them that she was only 56 years old (at the time) and wanted to live and be with her family. Fortunately, the IMR board with the DMHC overruled her insurance company’s position and Karen was able to begin her life saving radiation treatments.

Karen underwent five weeks of 3D conformal radiation therapy and had five consecutive days of one hour treatments with the CyberKnife system. Karen had no side effects from this course of treatment other than being a little tired. She was very pleased and surprised at the ease of the CyberKnife treatment, as well as her ability to get back to her day-to-day activities immediately following the treatments.

Today, Karen is doing well. She recently had her third PET/CT scan at UCSF since undergoing treatment in 2007 and her tumor is gone and her blood work is near normal. Unfortunately, Karen and her husband must stay on top of every billing issue.

“Dealing with the healthcare insurer is a full time job and when you're batting cancer....fighting for your life should be your full time job,” said Karen. “I’m lucky my husband was there to help me fight both battles!”

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