Erik noticed a bump on his left hip about the middle of July. Since he's had Neurofibromatosis 1 all his life, he's used to bumps, and didn't think much about it. The bump started getting bigger, and getting sore, so on Friday 7/28/17 he went into Urgent Care after work. Urgent Care sent him to the ER at Providence. They admitted him and took a CT scan. He spent the night there, then because of the concerning results of the scan, Providence sent him over to OHSU. OHSU admitted him and scheduled an MRI for Sunday. The MRI showed a large mass in his hip and pelvis, so they scheduled a biopsy. He stayed in the hospital, bored out of his mind, until the biopsy was done. About a week later, he had another CT scan, this time of the chest, because the original scan had included part of the lungs and had shown some spots.
The results of all the tests indicated Neurofibroma Sarcoma or Malignant Peripheral Nerve Sheath Tumor (MPNST.) Sarcomas are a rare form of cancer that make up less than 1% of all cancers in the US. There are more than 50 different kinds of sarcoma, and Neurofibroma Sarcoma is only a very small portion, so we're so grateful that Erik's doctor recognized it right away. There are only a handful of specialized sarcoma centers in the country, and one of them is at OHSU. He has a whole team of doctors who work on sarcomas every day and have years of experience. We're really confident in his surgeon and the combined knowledge and expertise of his team.
Unfortunately, the MPNST has spread to his lungs, so the treatment will likely include chemotherapy at some stage. Surgery is scheduled for Thursday, August 24th to remove the tumor, then there's a possibility of radiation to follow, and if the tumors in his lungs continue to grow, some form of chemotherapy.
The cancer is incurable at this point, but his medical team said they're going to keep his quality of life "as good as possible for as long as possible!" The goal is to keep it under control until they find a cure. Since OHSU is a research hospital, we're confident that they'll be at the forefront of any advances, and a cure.
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