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ARF1974's Message Board Messages

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It's difficult to find information here about nasal cancer.  I realize it's rare, but I was hoping I might find a few survivors on here if I started a new post.  I've been diagnosed with an even more rare subtype large cell neuroendocrine carcinoma, although the biopsy of tumor after surgery called it large and small cell.  I had surgery at UCSD because I found a surgeon with experience removing these tumors and an excellent reputation.  He completely removed the tumor with margins and I thought the worst was over.  I'm planning post-surgery treatment at CIty of Hope and finding they want to do aggressive chemoradiation that will cause me a ton of side effects, some of them permanent, and I'm scared to death.  I already have a number of disabilities on the right side of my brain after surgeries to remove an anoustic neuroma in 2009.  The nasal cancer was on my left side and I'm afraid to lose anymore hearing, vision, balance, not to mention sense of smell, taste and all the other terrible side effects that can happen and are more likely when you combine chemo and radiation.  There is so little information out there on rare nasal cancers and even pathology is sometimes unclear.  Some people consider large cell the same as SNUC.  City of Hope seems to be having a hard time distinguishing neuroendocrine large and small cell from estheioneuroblastoma, SNUC, and any info I can find online clearly states that treatment depends on subtype.  All my doctors tell me this is rare, aggressive, likely to recur and spread, so they are recommended max treatment, but they can't provide me evidence that it's effective.  Any medical articles I can find and docs have sent me claim radiation is effective, but not chemo.  So why add the chemo?  One article they sent me said there was better surivival for patients with surgery and radiation only than all three.  I am seriously questioning chemo now and the hospitals, my family and friends act like I'm crazy.  How is it crazy when they can't provide fact based evidence that it helps?  There are huge risks with all of these treatments and the patients have to live with the side effects.  Even if I suffer through all three treatments, there are no guarantees.  I've never felt so much stress or alone in my life.  If anyone has info/experience with any of this, please let me know.  Thanks!

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