My Mom was diagnosed with neuroendocrine cancer of the throat in October of 2006. A year or two prior, she had been having some issues with her voice, which had changed, and also had a bad odor coming from her mouth. Her weight was down from 125 lbs. to 110 lbs. or so- and didn't have much of an appetite. Several doctors prior to Oct. '06, suspected it was a post nasal drip- or allergy related.
Once her voice changed and became very hoarse, she went to an ENT guy who took a look down her throat and saw a tumor at her larynx. The biopsy came back positive and she was diagnosed with neuroendocrine cancer. More tests revealed that it had spread to her lymph nodes, and she was basically Stage 4 at the time of diagnosis. The Mayo clinic in Scottsdale, AZ., agreed with the diagnosis, and concurred with the prescribed treatment of radiation and chemo. They said if it had spread to her liver or lungs, they would not recommend any treatment at all, just care and comfort.
She began treatment at UMC in Tucson in November of 2006. The first 20 or so radiation doses were aimed at the throat. A month later, a scan of her head indicated several "spots" in her brain. Spots, as they say, are synonomous with tumors and lesions- one in the same. She did an addition 10 radiation treatments to her brain. She went on a feeding tube during the radiation.
After the radiation, she began 3 cycles of chemo, using Cisplatin. Near the end of the 1st treatment, her hearing began to worsen, and the doctors recommended one more cycle of Chemo, using Carboplatin. After this second cycle, she was going to have more scans to determine if any progress was being made. At this point the prognosis was very poor, and in late February of 2006, she was given 2-3 months to live. She didn't know she was dying- nor did she want to. We respected her wishes and carried on as though this was just a temporary sickness.
During the 3 weeks off from chemo, her airway nearly closed up completely, and she had to have an emergency tracheotomy. After the procedure, more scans revealed that her throat tumor had grown back, and she had 8-10 lesions (tumors) in her lungs as well. She was on a ventilator for 1 week, and never regained consciousness. She died 10 days later, in hospice with family at her side. She was 64 years old.
Neuroendocrine cancer is very rare, and not much is known about it. She smoked from 1960 to 1985 or so- but lived a very healthy lifestyle after that. I suspect it was related to smoking, but that's just my guess.
Please email me if I can be of any help or answer any questions.