John’s Story

In January 2016, I was referred by an AHN ENT to a top ENT oncologist at UPMC where I was then diagnosed with squamous cell carcinoma in my throat. At the start, the team felt my cancer to be quite curable but during a pre-radiation PET scan used to create a mask to administer radiation through, it was discovered that my cancer had metastasized into my lung. This changed everything, as my team was now telling us that my cancer was stage 4C and, in their words, there is no 5 and no D. We were told that on average, without treatment, I had maybe six months; with treatment maybe a year. Now radiation would no longer be helpful. They got us into a clinical trial for an immunotherapy drug, and I was randomly selected to receive the immunotherapy drug and two chemo drugs every three weeks. It was an extremely tough therapy. But an amazing thing started to happen …. the spot on my lung disappeared quickly and the every-six-week scan showed the throat tumor shrinking and shrinking until they couldn’t see it anymore. The doctors were even surprised by this, and told me that I was all alone on an island with these results. The chemo stopped in August of 2016, but the immunotherapy drug continued every three weeks until in early February of 2018, when an enlarged lymph node showed up on the scan. This node was surgically removed on February 28, 2017, and the team scheduled a five-week course of chemo radiation (which was supposed to happen at the start before the metastasis was discovered), which ended in May 2018. Three months later, a clean scan happened that was followed by another last month. Clearly, I will continue to need scans and follow-up for some time into the future. However, UPMC will no longer accept my Highmark insurance; my benefits are provided by my employer so I have no option to change it. My file fills up at least two binders that are two feet thick. I have no idea how another new doctor could possibly continue my care. My family and I are terrified for June 30, 2018! I don’t want to lose my life-saving care and am told that there are no comparable specialists in the AHN. Please help.