Diagnostic Timeline

Jon found a small marble sized mass on his inner thigh (above his right knee) on September 21st, 2012. This mass would later prove to be inconsequential. After the advice of a family friend/physician, Jon decided to have this potential "lipoma" removed at an outpatient surgery center at Kaiser Sunset. On Friday September 28th, Jon noticed his lymph nodes were swollen in his neck; and he complained of chest tightness and myalgia in his legs. He also had a small angioma on his chest. We were betting on the fact that none of these symptoms were related, but we went into Kaiser that evening to see Dr. Garis, a primary care physician. Jon checked out fine.... The next morning after my cycle class at the Annex, I drove home and Jon showed me the "other mass" he had just noticed on his left glute. I was concerned, but Jon was convinced it was a muscle knot. Monday morning, October 1st, Jon went into the surgical outpatient center at Kaiser Sunset to have the mass on his leg removed. The surgeon looked at Jon's leg mass and advised that we wait to remove it. He said there was inflammation and it was located near a major vein. It wasn't a lipoma, but the surgeon wasn't concerned. Jon then showed the surgeon his gluteal mass. Jon was immediately advised to have diagnostic imaging done on his glute. The following few days were chaos. We were both concerned given Jon's other symptoms. On Tuesday October 2nd, we enlisted the help of a radiation oncologist from church. Our primary doctor agreed to refer us to him so he could open Jon's case...He ordered a stat CT scan which was done on Thursday October 4th. Within 30 minutes of having the CT scan, surgical oncology called and said the first available appointment with Dr. Difronzo was Monday October 8th. Both of our hearts sank because Dr. Difronzo was the chief oncological surgeon at Kaiser Sunset. We weren't sure whether all masses (benign and malignant) went through him.... On Friday October 5th, we were called in to meet with Dr. Girvigian, our Radiation Oncologist friend from church. He told us Jon had a clearly differentiated 4x3x2 cm mass in his left gluteus (coming from the muscle). A biopsy would be needed to assess the mass. He ordered blood tests, which were completed that day. On Monday October 8th, Dr. Difronzo offered an "on the spot" core needle biopsy. Jon jumped at this opportunity to find out the pathology of this mass. The core biopsy was completed within the hour; and we both went home to wait. The next day, Tuesday October 9th, Jon went to Baldwin Park to have an MRI with contrast. Jon's case was mentioned in the sarcoma meeting at Baldwin Park that afternoon, but there wasn't enough diagnostic information to discuss it. The results of the MRI were hopeful--the mass lit up on the boundary but the inside was dark. This could have been an indicator that the mass was benign. The pathology process began, and many words came across our lap (ganglion cysts, Myxoma, etc.) Most of the pathology hypothesis were benign. By Friday October 12th, Jon and I were resting in the fact that the mass was likely benign. On Monday October 15th, Dr. Girvigian called to say that all the hypothesis that were stained came back negative. This put us back at "square one". Jon's slides were then sent to a soft tissue specialist at Baldwin Park named Dr. Syed. On Wednesday October 17th, we met with Dr. Helmsteder, an oncological surgeon at Baldwin Park. He told us that the pathologist was leaning towards Pleomorphic Rhabdomyosarcoma. We held on to this preliminary diagnosis loosely...hoping for a miracle or another "oops...not it".... Jon walked into my office at 12:11 pm on October 19th and told me it was confirmed. We both were turned upside down...