|
| |
Compiled by: Susan L. Anderson
http://www.carcinoidinfo.info
HOW TO DIAGNOSE AND MONITOR
CARCINOID (NEUROENDOCRINE
TUMORS) WHICH TESTS AND HOW
OFTEN?
Permission granted from: Dr. Lowell
Anthony, Dr. Richard R.P. Warner
and Dr. Eugene A. Woltering.
Review the information that follows, print what you need,
AND do additional research
on each of the tests, if you desire.
PLEASE do not copy any of this information to post
on another web page without getting specific permission from the doctors listed
above.
Please remember each patient's Carcinoid is different.
We are all distinct individuals and
our cancer must be treated on an individual basis. There are many factors that
influence
how to diagnosis and monitor Carcinoid, a few are: where our Carcinoid tumor(s)
is located,
our health before diagnosis, other health problems we may be experiencing; and
age.
Thus how our bodies and minds react to Carcinoid vary a great deal. Due to
the differences in each case a protocol for how to monitor Carcinoid needs to be
“tailor-made” for each patient – there is NO one protocol for diagnostic and then surveillance that
fits all persons.
How to monitor Carcinoid is not as simple as just
testing for blood sugar levels if you suspect
Diabetes and to follow with blood sugar levels to make sure it is controlled.
Only a physician
knowledgeable and experienced with neuroendocrine tumors/Carcinoid can make the
decision
about what to test for initially, how to follow up, and then how to interpret
changes once
treatment(s) are started.
I have prepared a summary from information provided
by Drs. Anthony, Warner and Woltering. After my summary there is additional information from each of
these doctors based on their own experience. These are some of the few physicians
in the USA with decades of interest and experience with neuroendocrine tumors.
Compiled by Susan L. Anderson
http://www.carcinoidinfo.info
SUMMARY - In General
INITIAL WORK-UP – dependent on the type and location of
tumor(s):
every patient does NOT need all of these tests. Only a physician
knowledgeable and experienced with Carcinoid can determine what is right for each patient.
- At the time of initial diagnosis, biomarkers should be measured
dependent upon site of the primary tumor:
There should be tumor stains for Chromogranin-A and Ki-67 (also known as
MIB-1).
-
Pancreatic primary: Chromogranin-A, Pancreatinc Polypeptide,
Substance P, and specific markers depending on clinical signs and symptoms 5-HIAA, Serotonin, Gastrin, Glucagon, Insulin, VIP, Somatostatin.
- Lung primary: Chromogranin-A, Neuron Specific Enolase (NSE),
5-HIAA, Serotonin, Substance P, ACTH
-
Gut primary: Chromogranin-A, Substance P,
5-HIAA, Serotonin, Urinary Methyl-Histamine (gastric primaries only)
- Rectal primary: alpha and beta subunits of HCG.
Unknown primary: urine 5-HIAA, Chromogranin-A, Serotonin, Neuron
Specific Enolase (NSE), Substance P, Neurokinin A and alpha and beta subunit of HCG
(human chorionic gonadotropins).
More from each individual doctor further down in this article.
FOLLOW-UP every 3 to 4 months or 6 months, each patient is
different:
Review of clinical symptoms: flushing, diarrhea, fatigue, weight
loss and others.
What markers to test for depends on each individual patient, which
markers were elevated initially, and where the Carcinoid is/was located.
More from each individual doctor further down in this
article.
IMAGING: Every 6 to 12 months, each patient is different:
- CT with contrast or MRI with contrast.
- OctreoScan initially (to have as a baseline) and then later ONLY if it
influences therapy.
- Echocardiogram: (to have as a baseline) and then annually for early detection
of Carcinoid heart disease. (Only if serotonin and/or urine 5-HIAA increased.).
+++++++++++++++++
From: Dr. Eugene Woltering, July 30, 2002
- Initial tumor-stain for chromogranin-A and Ki-67.
- Initial work up---CT of area - Octreoscan - blood for chromogranin A
-sub P - 5HIAA (i.e.) a 24 hours urine-consider if weird symptoms-and I do mean weird----consider
sending off a tube of blood to the Ohio State University Core Peptide Lab at 614-293-8423 ask
for Mr. Brent Howe he will give your doctor the instructions on how to get blood collected
spun and frozen/ sent to the OSU. Ask them to do a "peptide profile".
- Follow up --- I recommend the chromogranin-A (sub -P if initially
elevated) every three months and the 5HIAA urine every six months and I really recommend that you graph the
results to look at the trend. The trend is much more important than the specific value.
- I recommend the Octreoscan and the CT scan once a year but I space
them six month apart so you do some form of scan every six months
- What I don't recommend - Serotonin in blood or urine unless you know
your lab and you know that reference lab - also I don't recommend PET scans unless you are going to
see Dr. Oberg's group in Sweden who do very special testing with radioactive compounds not generally
available.
Eugene A. Woltering, MD, FACS
The James D. Rives Professor of Surgery and Neuroscience
Chief, Section of Surgical Endocrinology
Director of Surgical Research
Louisiana State University Health Sciences Center
New Orleans, LA 70119
telephone (504) 488-8121
fax (504) 488-5953
+++++++++++++++++
From: Dr. Richard R. P. Warner, August 26 &
September 7, 2002
1. Chemical markers are important to measure and follow since they
change before imaging tests do and before physical conditions (symptoms) do. They are useful
early indicators of the tumor status.
2. The tempo of the disease varies from one patient to the next and hence the
frequency the tests should be done may vary from yearly to every 3 months. The average is
twice a year.
3. Chromogranin A (CgA) is the most stable and dependable marker in 90% of
cases. In many cases it can be supplemented by other markers which should have been tested
originally and those found abnormal can also be followed subsequently.
In carcinoid we initially include: Urine 5HIAA, Blood serotonin,
Neuron Specific Enolase, Pancreastatin, Substance P, Pancreatic Polypeptide and Atrial Naturetic hormone (ANH) (fasting). The latter (ANH) helps indicate development of carcinoid heart disease in
patients with functioning tumors.
In other neuroendocrine tumors, depending on type we measure
Gastrin, VIP, Calcitonin, CEA, Insulin, Glucagon, Alpha/Beta subunits of HCG and ACTH.
In all cases we check blood CgA which is most often positive in most
tumors regardless of presence or absence of any specific endocrine function. When
ascites is present we measure ascitic fluid CgA also.
4. Appropriate imaging tests such as CT-scan with contrast, MRI with
contrast and OctreoScan are also included in monitoring with frequency customized for each case.
5. Included in the initial work up is also tumor-stain for
Chromogranin A and Ki-67 (MIB-1) and in aggressive tumor we also measure for P-53 and C-kit..
6. Echocardiogram initially and yearly
thereafter if ANH(Atrial Naturetic Hormone also sometimes known as ANF=Atrial Naturetic Factor) is
increased above normal.
Richard R.P.Warner M.D.
Medical Director
The Carcinoid Cancer Foundation, Inc.
Clinical Professor of Medicine
The Mount Sinai School of Medicine, New York City
The Carcinoid Cancer Foundation, Inc.
333 Mamaroneck Avenue #492
White Plains, NY 10605
Tel: 888-722-3132 Tuesday - Thursday (for general questions only)
Fax: 914-683-5919
Office Tel: 212-722-2100
URL:
http://www.carcinoid.org Carcinoid Cancer Foundation check for
tests: in the FAQs section (frequently asked questions):
+++++++++++++++++
Since attending the first Carcinoid Seminar in Sarasota, FL, in March 1999, I
have included
the following lists from Dr. Anthony’s talk at that Seminar on my web page. He
has now
expanded this information, see below:
How to Monitor Carcinoid - from Dr. Lowell Anthony's
lectures at the first Carcinoid Seminar in Sarasota, FL, March 1999, and other carcinoid "experts"
1. Clinical symptoms: flushing, diarrhea, tiredness, weight loss, other;
every 3 - 4 months
2. Biochemical markers: 24-hour 5-HIAA; plasma chromogranin A; substance P;
others, every 3 - 4 months
3. Imaging: CT/MRI; every 6-12 months
4. OctreoScan: baseline and with clinical / radiographic changes ONLY IF it
influences therapy.
5. Echocardiogram: baseline and annually: Early detect carcinoid heart
disease.
From: Dr. Lowell Anthony, August 29, 2002 &
September 3, 2002
Expanded #2, August 2002
- At the time of initial diagnosis, biomarkers measured dependent upon
site of primary as follows:
- Pancreatic primary: nonspecific markers (chromogranin A, pancreatic
polypeptide,
substance P) and specific markers depending on clinical signs and symptoms
(5-HIAA /serotonin, gastrin, glucagon, insulin, VIP, somatostatin).
- Lung primary: chromogranin A, neuron specific enolase (NSE), 5-HIAA /
serotonin,
substance P, ACTH.
- Gut primary: chromogranin A, substance P, 5-HIAA / serotonin,
substance P, urinary
methyl-histamine (gastric primaries only).
- Rectal primaries: usually have NO elevated markers.
- Unknown primary: chromogranin A, 5-HIAA / serotonin, NSE, substance
P.
- For longitudinal follow-up: 5-HIAA or CGA every 3-4 months or, if WNL
at presentation, any other elevated biomarker.
- Substance P is a more "labile" neuropeptide meaning that it is more likely to
be affected by
conditions of sampling (temperature, processing time, etc.). In my own
experience, I rarely
use this marker to serially follow someone's disease since it is more likely to
give confusing
information (going down when the CGA or 5-HIAA is rising or vice versa) rather
than the
meaningful data we need. The general principle I follow is to identify the
best marker at the time of diagnosis and stick to it, as best as possible, over time.
If substance P
is the only elevated marker, then I would consider following it. Rarely, is it
an isolated
elevated marker.
Dr. Lowell Anthony, M.D.
Louisiana State University Medical Center
1542 Tulane Avenue
New Orleans, LA 70112-2822
Tel: 504-899-8401
FAX: 504-899-8417
+++++++++++++++++
From web page of Dr. Kjell Oberg in Sweden
In this section you can see the different tests and examinations that we use
to evaluate each
patients disease.
All patients do not have to do all tests and for each individual patient an
individual work-up schedule is designed.
http://www.medsci.uu.se/fogrupp/
endocrineoncology/endocrineoncology.htm
DIAGNOSTIC PROCEDURE FOR:
- MIDGUT CARCINOID TUMORS
- Ordinary blood parameters including haemathology tests, liver and kidney
function tests and electrolytes
- U-5HIAA - mean of two 24-hour urine collections during dietary restrictions
- p-chromogranin A
- p-neuropeptide K
- Histopathological examination of surgically removed tumor specimen or from
a 1.2 mm needle biopsy from a metastasis stained with Grimelius and Masson sliver
stainings and immunohistochemical investigation for chromogranin A and serotonin.
- Tumor biology program including Ki67 (cellproliferation), celladhesion
CD44, angiogenesis with bFGF and VEGF and somatostatin receptor subtype expression.
- Abdominal ultrasonography
- Magnetic Resonance Tomography
- Abdominal computerized tomography
- Somatostatin receptor scintigraphy (OctreoScan)
- Positron Emission Tomography (PET) with specific tracers including
11C-5-HTP
- Chest X-ray
ENDOCRINE PANCREATIC TUMOR
- Ordinary blood parameters including hemathology tests, liver and kidney
function tests and electrolytes.
- Specific hormones including gastrin, insulin, proinsulin, calcitonin, VIP,
glucagon, ACTH, cortisol, PP.
- p-chromogranin A
- hCG-alpha and-beta
-
Histopathological examination on surgically removed tumor specimen or from
a 1.2 mm needle biopsy from a metastasis stained with Grimelius and Masson
sliver
stainings and immunohistochemical investigation for chromogranin A and
specific hormones.
- Tumor biology program including Ki67 (cellproliferation), celladhesion
CD44, angiogenesis with bFGF and VEGF and somatostatin receptor subtype expression.
- Abdominal ultrasonography
- Magnetic Resonance Tomography
- Abdominal computerized tomography
- Somatostatin receptor scintigraphy (OctreoScan)
- Positron Emission Tomography (PET) with specific tracers including
11C-5-HTP
- Endoscopic ultrasonography
- Chest X-ray
MULTIPLE ENDOCRINE NEOPLASIA TYPE 1
- Ordinary blood parameters including hemathology tests, liver and kidney
function tests and electrolytes.
- S-Ca levels, urinary calcium and PTH
- Meal stimulation test with measurements of PP and gastrin
- Specific hormones including gastrin, insulin, proinsulin, calcitonin, VIP,
glucagon, ACTH, cortisol, PP, prolactin, GH.
- p-chromogranin A
- hCG-alpha and-beta
-
Histopathological examination on surgically removed tumor specimen or from
a 1.2 mm needle biopsy from a metastasis stained with Grimelius and Masson
sliver stainings and immunohistochemical investigation for chromogranin A and
specific hormones.
-
Tumor biology program including Ki67 (cellproliferation), celladhesion
CD44, angiogenesis with bFGF and VEGF and somatostatin receptor subtype expression.
- Abdominal ultrasonography
- Magnetic Resonance Tomography
- Abdominal computerized tomography
- Somatostatin receptor scintigraphy (OctreoScan)
- Positron Emission Tomography (PET) with specific tracers including
11C-5-HTP
- Endoscopic ultrasonography
- Chest X-ray
Professor Kjell Öberg
Dean of The Medical Faculty,
Uppsala University.
751 85 Uppsala
Sweden
Telefon/Phone: +46 18 611 49 17
Fax:+46 18 510133
Akademiska sjukhuset Phone : +46 18 53 36 98
E-mail: Kjell.Oberg@medicin.uu.se
President of ENET
ENET (The European Neuroendocrine Network) - A European project between
different centers working with these tumors with the aim to set up
guidelines for tumor biology program, radiological work-up, and randomized trials of
both new and established therapies.
+++++++++++++++++
OF SPECIAL INTEREST FOR THE PHYSICIAN:
General Information About Carcinoid and Related Neuroendocrine Tumors --
WITH A BIG THANK YOU TO THE Carcinoid Cancer Foundation (CCF) Click here:
Information and Published Papers for the MEDICAL PROFESSIONALS
General Information About Carcinoid and Related Neuroendocrine Tumors.
This section contains links to websites and
full-text and abstract versions of published papers that focus on general
information (reviews) of diagnosis, treatment and current research in the field
of carcinoid and neuroendocrine tumors.
Thank you to the
Carcinoid Cancer Foundation, Inc. (CCF), for giving me permission to link
directly to this important consensus report below.
Consensus Report on the Use of Somatostatin Analogs for the Management of
Neuroendocrine Tumors of the Gastroenteropancreatic System
By K. Öberg, L. Kvols, M. Caplin, G. Delle
Fave, W. de Herder, G. Rindi, P. Ruszniewski, E. A. Woltering, and B. Wiedenmann Annals of Oncology 15: 966–973, 2004.
"This
consensus report gives a detailed description of the use of somatostatin analogs
in the management of neuroendocrine tumors of the gastroenteropancreatic system.
As background information we have outlined critical aspects of the pathology,
the use of tumor markers, a definition of functional and non-functional
digestive neuroendocrine tumors, different imaging modalities, surgical
considerations, liver embolization and the use of cytotoxic drugs as well as
interferon. Included in the report is an overview of somatostatin, somatostatin
analogs and its receptor expression in different neuroendocrine tumors. It will
also define the binding affinities of different somatostatin analogs to the five
different subtypes of somatostatin receptor. We compare the efficacy of
octreotide and lanreotide in reducing diarrhea and flushing. Side-effects are
described and we provide practical information on somatostatin analog
treatment."
NATIONAL COMPREHENSIVE CANCER NETWORK
http://www.nccn.org
The National Comprehensive Cancer Network (NCCN) is a not for profit,
tax-exempt corporation that is an alliance of the world's leading cancer
centers. The NCCN Practice Guidelines in Oncology presents statement of consensus from
some physicians dealing with neuroendocrine tumors regarding their view of
currently accepted approaches to treatment and surveillance.
Under the heading "Guidelines for Treatment of Cancer by Site"
these guidelines include a section on Neuroendocrine Tumors (Version 1.2001) (including Carcinoid
), which contain algorithms of Initial work up, Clinical Presentation , Treatment
and Surveillance.
ACCESS THE EXPERTS:
(This is for medical professionals only.)
- Your local doctor can get in touch with a recognized carcinoid expert
for a consultation on treating an individual case.
http://www.acromegalyinfo.com/
res_center/access_oncon.html
-
Benefit From This Unique Opportunity to Discuss Management of Cancer
Induced Diarrhea and Carcinoid Disease With One of the Countries Leading Experts.
-
Information provided by this program is designed to offer general
guidelines, based on current published research for the management of patients with cancer
treatment-induced diarrhea or carcinoid disease.
-
Drs: Ajani, Benson, Anthony, O'Dorisio, Woltering and Venook. This program
is supported by an unrestricted education program honorarium from NOVARTIS PHARMACEUTICALS CORPORATION.
* * * * * * * * * *
Since
1996 --- when I first located others with Carcinoid --- I have answered
every email sent to me, although some replies were delayed longer than I liked.
I am NO longer able to reply to all e-mails due to the volume and other things
going on in my life (all good). I do love hearing from others, but an unable to
reply to all individually. This web site was 10 years old on April 27,
2007, and my plan is to keep it updated for many many years to come.
Since my husband "retired" I am away from my computer for days, and
sometimes, weeks at a time. Yes, there is wireless internet and we have
tried that a number of places. But, if I deal with email when we are away
from home then it is not a "restful vacation" for me.
PLEASE use the SEARCH
capability at the top my pages. You may search for a word, a phrase, a
drug, a treatment, a book title or anything you can think of. You may search
this site only, or search the complete World Wide Web.
To speak with
a person
please know you may call the “telephone information and support line” of the
Carcinoid Cancer Foundation, Inc. (CCF), Tuesday through Thursday 10 a.m. to 4
p.m. Eastern Time at 1-888-722-3132 (free) or 1-914-693-1001. “The
information and support line” is staffed by medical professionals. Mondays and
Fridays are research days, if you call then and do not reach a person do leave a
clear message. The Carcinoid Cancer Foundation’s (CCF) superb web site is at
http://www.carcinoid.org
+ + + + + + + + + +
CCF - Serving the
carcinoid/NETs patient and medical community for close to forty
years (chartered in 1968)
“Meets Extensive Standards of America’s Most
Experienced Charity Evaluator”
Better Business Bureau
* * * * * * * * * *
-
DISCLAIMER: I am a patient
and NOT a medical doctor or health care professional. I share
information and links to information that has been helpful to me and that I
believe to be correct and good, but I cannot guarantee the accuracy of this
information, except for MY stories. I urge you not to rely only on
this information but I believe you should discuss your situation and
information with your medical doctors and/or other medical professionals.
"Sunny" Susan Anderson
-
Copyright © 1997-2007 Susan L. Anderson. All Rights
Reserved.
Susan L. Anderson,
Tempe, AZ, USA
Email: SunnySusan@Cox.Net
(Please see above)
|
