Nasal Cancer Neuroendocrine-Large, Small cell (possible SNUC)

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Nasal Cancer Neuroendocrine-Large, Small cell (possible SNUC)

by ARF1974 on Fri Mar 15, 2019 10:48 AM

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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!

RE: Nasal Cancer Neuroendocrine-Large, Small cell (possible SNUC)

by Sdurnell on Sat Mar 16, 2019 04:57 AM

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ARF,

I am not familiar with this cancer, but I can tell you a bit about radiation for head and neck cancers andwhat to expect.  First of all, the effects of radiation are almost always far worse than those of chemo.  Even with the platinum-based chemo drugs most people do OK.  Their big scary side effect is hearing loss, so if you go with this be sure to have your hearing tested before starting and after each session.  Some people are only able to do one or two sessions, instead of the three.

I'm pretty sure radiation that high will do a number of saliva and taste.  I had throat cancer, and could did not get all my taste back for 2.5 years.  Now 8 years out of treatment, and cured, my saliva is still reduced but much better than at first.  My quailty of life now is not much different than it was before cancer.  But then again, we are all different.

The bottom line may be that the huge risks implicit in this treatment are worth taking if they are your only, or best, option to be cured.  Radiation is always brutal, but we do improve afterward, although very, very slowly.

Best of luck with your decisions.

Susan

RE: Nasal Cancer Neuroendocrine-Large, Small cell (possible SNUC)

by ljayr on Thu Mar 21, 2019 03:25 PM

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ARF1974...I'm sorry you had to find this site, but from your post I want to commend you on doing so much research about your nasal cancer.  My brother had SNUC, and if you want to find out alot about SNUC, please consider joining the SNUC Family Facebook page.  It is a wealth of information for those fighting their SNUC battle, survivors, caregivers, etc. all with the common bond of SNUC.  It is a closed facebook group so you need to send a request to be accepted.  If joining this facebook group does not interest you, I may be able to answer some of you questions.

RE: Nasal Cancer Neuroendocrine-Large, Small cell (possible SNUC)

by ljayr on Thu Mar 21, 2019 03:29 PM

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PS....I was also going to tell you that if you go to the Oral Cancer page on this site and click on Nasal Cavity, there is quite a bit of information there, just in case your cancer isn't SNUC.

Keep us posted....

Best wishes,

ljayr 

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