Tess Johnsen Testimonial

Tess Johnsen, Wife of Robert Johnsen - "In 2000, I attended a co-worker’s wedding party and was told by a co-worker that Bob’s abdomen appeared extended beyond reason. This prompted us to visit a primary care doctor who uncovered the accumulation of fluid in Bob’s stomach.  We were referred to a GI specialist to rule out cancer.  This doctor decided that Bob had cirrhosis of the liver and that the fluid accumulation was of an unknown cause. Yet, over the next three years we were not seeing much medical improvement and faced with an operation or possibility a liver replacement.  Since this was the case, we were encouraged by our son to obtain a second opinion.  We were referred to Dr. Cooper, a hepatologist at Stanford University, who discovered a tumor on Bob’s lung.  We were then referred to Dr. Rosen, a pulmonologist, for a biopsy that conclusively reported cancer in the upper lung.  Dr. Rosen then referred us to the Stanford Cancer Clinic for further analysis.

Finally, we met with a team of seven oncologists who discussed removing the tumor, providing Bob passed three prerequisite tests. The tests were a stress test, pulmonary function test, and P.E.T. test.  The stress and pulmonary tests were no problem but the P.E.T. turned out to be a major problem.  Bob’s entire abdomen lit up everywhere which was indicative of cancer everywhere.  A laparoscopy was ordered and the result of that operation plus the subsequent radiology report concluded that Bob had malignant peritoneal mesothelioma.  After the report findings, we were told that Bob’s case was untreatable and incurable, and that they believed Bob only had six- to nine-months to live.  The doctor explained the reason for the problem in diagnosing mesothelioma was because Bob had no tumors, but a spider web appearance across the entire abdomen.  In these first fours years, access to healthcare was difficult for us - both very costly and totally time consuming.

Our access to healthcare issue was resolved when we called. He was able to refer us to Mr. Jerry Paul of Paul & Hanley so that Bob could join the Mesothelioma Research Foundation of America to receive a phase I clinical trial at Stanford which was being conducted at Stanford and the Mayo Clinic by a fledging pharmaceutical company.  Jerry and Phil referred us to the USC program with Dr. Gill.  Bob received immediate treatment in the clinical trials.  It is difficult to say how much the program is helping, but Bob’s quality of life continues to improve.  It has been one year and six months since we received the grim prognosis for Bob, so something seems to be working.  We have noticed significant improvements to date.”