Rare cancers are always a bit tricky, but the 'questions" are the
same...............

Hello Bob,
Thanks for the update.
Steph wants me to post his Questions to Ask to you http://tinyurl.com/4akk6

After reading the other websites that I provided and those that follow...
I think I'm clear that chemo doesn't cure your mother's type of cancer and I
think I'm clear that none of the previous posters with same cancer, came back
to say "hey, I'm still here".

"Cancers that arise in the neuroendocrine system are found throughout the
body"  - I did find other body location/websites, but only included lung, since
it may be helpful for those with SCLC and/or to me.

Some of the following might help you answer Steph's Questions to Ask

http://www.clevelandclinic.org/cancer/general/glossary/n.htm
Neuroendocrine tumor refers to the type of cell that a tumor grows from rather
than where that tumor is located. Neuroendocrine cells produce hormones or
regulatory proteins, and so tumors of these cells usually have symptoms that
are related to the specific hormones that they produce. Neuroendocrine cells
have roles both in the endocrine system and the nervous system. They produce
and secrete a variety of regulatory hormones, or neuropeptides, which include
neurotransmitters and growth factors. When these cells become cancerous , they
grow and overproduce their specific neuropeptide. Neuroendocrine tumors are
generally rare. One type of neuroendocrine tumor is a carcinoid tumor. This
type of tumor can occur in the intestinal tract, appendix, rectum, bronchial
tubes, or ovary. Most carcinoid tumors secrete serotonin. When the blood
concentration of this hormone is high enough, it causes carcinoid syndrome.
This syndrome refers to a variety of symptoms that are caused by the excessive
amount of hormone secreted rather than by the tumor itself.

http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_lung_carcinoid_tumo
r_56.asp

The Diffuse Neuroendocrine System
The diffuse neuroendocrine system is made up of cells that are in certain ways
like nerve cells and in other ways like cells of endocrine (hormone-producing)
glands. These cells do not form an actual organ like the pancreas, adrenal, or
thyroid. Instead, they are scattered throughout your body in organs like the
lungs, stomach, and intestines.

Neuroendocrine cells produce hormones like adrenalin and adrenalin-like
substances. This may help control air flow and blood flow in the lungs and may
help control growth of other types of lung cells. These neuroendocrine cells
may detect decreased oxygen or increased carbon dioxide in the air we breathe
and then release chemical messages to help the lungs adjust to changes in air
composition. People who live at higher altitudes have more lung neuroendocrine
cells, apparently because there is less oxygen in the air they breathe.

Neuroendocrine Cancers
Like most cells in your body, lung neuroendocrine cells sometimes undergo
certain changes that cause them to grow too much and form tumors. The tumors
that develop from neuroendocrine cells are known as neuroendocrine tumors or
neuroendocrine cancers.

There are 4 types of neuroendocrine lung tumors. The most serious type, small
cell lung cancer (SCLC), is one of the most rapidly growing and spreading of
all cancers. It is discussed in a separate American Cancer Society lung cancer
document. Large cell neuroendocrine carcinoma is a rare cancer that, with the
exception of the size of the cells forming the cancer, is very similar to SCLC
in its prognosis (outlook for survival) and in how patients are treated.
Carcinoid tumors, also known as carcinoids, comprise the other 2 types of lung
neuroendocrine cancer: typical carcinoid and atypical carcinoid. This document
will only cover these 2 types of tumors.

http://ats.ctsnetjournals.org/cgi/content/abstract/75/2/348
Large cell neuroendocrine carcinoma (LCNEC) and large cell carcinoma with
neuroendocrine morphology of the lung are both currently classified as subtypes
of large cell carcinomas according to the World Health Organization IASLC
classification system for lung and pleural tumors. Prognosis is reported as
similar to that of small cell carcinomas. There is no consensus on management
of this subset and adjuvant chemotherapy is recommended by some for early stage
LCNEC to impact long-term prognosis. We retrospectively reviewed a cohort of
patients at our institution who had this type of tumor to determine factors
that might influence survival.

http://www.meb.uni-bonn.de/cgi-bin/mycite?ExtRef=MEDL/93276307
Poorly differentiated neuroendocrine carcinoma of unknown primary tumor site

http://www.cancerbacup.org.uk/Cancertype/Neuroendocrine/Overview
An overview of neuroendocrine tumours

http://www.postgradmed.com/issues/1999/05_01_99/brigden.htm
Improving survival in metastatic carcinoma of unknown origin
Poorly differentiated neuroendocrine tumors
A subset of patients with poorly differentiated neuroendocrine tumors has been
described (2,3). In the past, these tumors have been variously labeled as
poorly differentiated neuroendocrine tumor, anaplastic neuroendocrine
carcinoma, and extrapulmonary undifferentiated small-cell cancer. Patients
often have rapidly growing tumors in multiple sites and involvement of
mediastinal, retroperitoneal, or cervical lymph nodes. They may present with
diffuse hepatic or bone metastases but do not have the indolent histologic or
clinical features of typical carcinoid tumors. Results of immunocytochemical
studies are positive for neuron-specific enolase, and electron microscopy
demonstrates neurosecretory granules. Patients may have a response rate of over
50% to cisplatin-based chemotherapy; some patients have complete responses and
others have prolonged disease-free survival (7).

http://www.biomedcentral.com/1471-2407/4/23
Gastrointestinal neuroendocrine (NE) tumors represent a rare and rather
heterogeneous tumor entity. Almost half of the metastatic NE gastrointestinal
tumors release excessive amounts of biogenic amines and/or neuropeptides
thereby causing a characteristic hypersecretion syndrome. The often bizarre
clinical symptoms are generally well controlled by somatostatin analogues or
interferon-? (IFN?) [1,2]. However, further growth and spread is generally not
prevented on the long by either biotherapy or conventional chemotherapy.

These next 3 might be people/places you want to speak with.... (prognosis,
treatment, how long survived etc)
http://www.wfmynews2.com/2yh/2yh_article.aspx?storyid=44944
Neuroendocrine cancer is rarely a final diagnosis. Most of the time doctors are
able to pinpoint a particular tissue or hormone that's affected.
Neuroendocrine Cancer
Small cell lung cancer is very aggressive and very common, accounting for about
a third of all lung cancers. It also falls into a larger category of cancers
called neuroendocrine cancers.
Winston-Salem, NC -- Neuroendocrine cancers are a large group of malignant
tumors that arise in tissue throughout the body. Generally these are the tissue
that make hormones.

Dr. Paul Savage, an oncologist at Wake Forest University Baptist Medical Center
says, "It covers diseases although all of them are malignant, some of them are
relatively benign in the sense that they grow so slowly that people can live
with the disease for 10, 15, 20 and even 25 years and often don't need
treatment for sometimes as much as 5-10 years."

Neuroendocrine cancers that fall on that end of the spectrum are known for
actually making certain hormones, and often the patient loses the battle with
the increasing amount of hormone in the body and not the cancer itself.

"The other end of the spectrum is very aggressive, very rapidly growing cancer
that if untreated from the time someone has symptoms, if they opt for no
treatment, they rarely live for two months, and everything in between."

http://cancer.stanfordhospital.com/cancerTypes/neuroendocrine/default
The neuroendocrine system is made up of cells with similar properties that are
found throughout the body. These neuroendocrine cells, as their name suggests,
function as part of the nervous system and the endocrine system: they can
secrete hormones and proteins that act on both systems.

Cancers that arise in the neuroendocrine system are found throughout the body,
including in the lungs and gastrointestinal tract (e.g., stomach, intestines).
Cancerous neuroendocrine cells often flood the body with inappropriate hormones
or neurotransmitters.

http://www.csmc.edu/4085.html
The Carcinoid and Neuroendocrine Tumor Center at Cedars-Sinai

This one's so complex, I can't figure it out at all...
http://www.thedoctorsdoctor.com/diseases/lung_ca_neuroendocrine.htm

I hope some of this is helpful to you and doesn't give you a headache the way
trying to assimilate this info did to me.
Best of luck.
Keep in touch and let us know how it's going.
J