Finding out that I not only had one rare cancer, but two

The story of Kristin

In early September of ’18, I was diagnosed with appendix cancer after an appendectomy. After going back in the hospital a few weeks later removing 13” of colon and stripping out lymph nodes, I spent a couple months healing before going on a 6 month course of FOLFOX IV Chemo therapy in early ’19.

Once chemo was complete in the summer of ’19 a series of scans revealed a 3 CM tumor had developed in the mediastinum area of my chest. Initially this was diagnosed as metastasized appendix cancer that had travelled through the blood stream (bleak outlook), but after several weeks of further testing revealed it was actually a paraganglioma tumor. Although this was better news, it was still not good being a very difficult location to get to – surrounded by windpipe/spine/aorta/lung/larynx.

After inconclusive meetings with thoracic surgeons at Grandview, UAB, and Emory, it was decided that MD Anderson might be a better option for this rare surgery. After meeting with them in October of ’19, we returned in December for two weeks to have the tumor resected. Unfortunately, as the surgery was about to begin, I went into cardiac arrest. Because the surgeons were working around the aorta, a heart team was on stand by and was fortunately able to resuscitate me after about 60 seconds. For the remainder of surgery and over the next couple days, I had to be monitored closely for a potential cardiac relapse.

Four years later, and I am doing great. I have scans yearly to check for any reoccurrences or new cancers, due to a rare gene mutation (sdhb).