Neuroendocrine tumor of esophagus

Jenn W
Jenn W Member Posts: 1
in Esophageal Cancer #1

My mother-in-law was diagnosis April 11, 2016 with nueroendocrine tumor of the esophagus that has spread to the lymph nodes and liver. Can anyone heard of this cancer or help with treatment, trials or doctors (second opinion).

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #2
    Jenn~Web links that may be helpful

    Dear Jenn,

    Looks like your mother-in-law has been dealing with this cancer for about 10 months now.  First let me say that I’m writing as the wife of an EC survivor (T3N1M0) now into his 14th year of survival.  I always want to make that notation for those who are so disheartened to learn they have cancer, especially Esophageal Cancer.  They certainly can’t envision “years” added to their life.  And, my first thoughts after hearing of my own husband’s cancer was, “Is my husband going to die?”  We’ve been so deluged with cancer diagnoses that we tend to automatically equate cancer with death.  But, even if the diagnosis is a terminal one from the start, it doesn’t mean that with proper care that we can’t have a period of quality life. 

    All of us know the “sickening feeling” we get deep down inside when we hear the words cancer, and it is a member of our family or close circle of friends.  So Jenn, while there are not any members posting here presently who have that diagnosis, you can perform a “content search” on this site, and you will find an abundance of persons who’ve posted here in the past and were enquiring about Neuroendocrine tumors.  So I suggest you go there for “personal testimonies.”  Those entries could prove enlightening and informative.

    As for 2nd opinions, I would ALWAYS get a second opinion from a reputable hospital or medical facility who had expertise in handling this specific cancer.  Don’t be intimidated as some are.  They are fearful of “hurting the feelings” of the physician.  Well, what about the feelings of the patient?  So if your mother-in-law hasn’t sought one, I should think that would be one of the next things to do. 

    The only way I feel I might be of help is to provide you with some reputable sights that have specific info relative to Neuroendocrine tumors.  Hopefully, you can find something to help her.  Naturally, all we on this site commiserate with another cancer patient, and wish we could all “find a simple fix.”  Short of that, we want to at least be certain, we’ve explored all possible places that could help.  In that regard, I will list first the University of Pittsburgh Medical Center because that is where my husband had his successful Ivor Lewis Minimally Invasive Esophagectomy back in May of 2003.  We have the highest regard for UPMC.

    Sincerely Loretta

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    1. http://www.upmc.com/Services/neuroendocrine-cancer/Pages/default.aspx

    “UPMC Neuroendocrine Cancer Treatment Center

    The UPMC Neuroendocrine Cancer Treatment Center's multidisciplinary group of health care professionals are leaders in methods for early detection, innovative treatment strategies, and cutting-edge research for this rare cancer.

     

    We also are a regional and national educational resource for patients with neuroendocrine cancer and their families, as well as for future physicians and other clinicians.

    Neuroendocrine cancer is a rare type of cancer that starts in the neuroendocrine system – the part of the body where the nervous system and endocrine system work together.

    While neuroendocrine accounts for less than one percent of all cancers in the United States, it can cause severe symptoms. If it spreads, or metastasizes, to other parts of the body, it can be life-threatening.

    Some of the different types of neuroendocrine tumors that we treat include:

    Jenn~This is a search of contents on this ACS site.  They are entries from different people who have written concerning Neuroendocrine Tumors.  That will give you an idea of how they coped and/or were treated.

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    3.  http://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/neuroendocrine-tumors-care-at-mayo-clinic/ovc-20208362

    Mayo Clinic always has a “user-friendly” site which is often more easily understood than others.  As of this writing, it is temporarily being “revamped” and the info was not available, but by the time you read this letter, it may be back up and running.

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    4.  https://www.oncolink.org/cancers/carcinoid-neuroendocrine-tumors/all-about-carcinoid-and-neuroendocrine-tumors

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    5. http://www.hopkinsmedicine.org/liver_tumor_center/conditions/cancerous_liver_tumors/neuroendocrine_carcinoid_tumors.html

                                                “…How are neuroendocrine/carcinoid tumors diagnosed?

    When you see your physician, you will have a routine examination. Your doctor will ask you questions about your general health and your family history of cancer and liver disease. You will also be asked about your lifestyle and habits, including drinking and smoking.

    Your physician may order the following tests:

    • Blood work. Blood tests may include a complete blood count, hematocrit, platelet count, liver function tests and chromogranin A, which will be elevated in patients with neuroendocrine/carcinoid tumors.

    • CT scan. This test identifies the tumor(s) and pinpoints their size and location in the liver, as well as their relation to the vascular/biliary structures. It also helps the doctor to determine the overall health of the liver.

    • MRI. This test identifies the tumor(s) and pinpoints their size and location in the liver, as well as vascular/biliary structures. It also helps the doctor to determine the overall health of the liver. A doctor will determine whether to do a CT scan, an MRI or both.

    • PET scan. This is a whole body scan that looks for evidence of active cancer throughout the body.

    • Octreotide scan. This is a type of scan used specifically for neuroendocrine tumors. The scan allows doctors to see inside the body to locate the tumor and see if it has spread elsewhere.

    • Liver biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. The sample removed from the biopsy is analyzed by one of our expert pathologists. Depending on the size of the tumor or mass, your physician may recommend the biopsy be taken one of several ways:

      • By using a minimally invasive surgical technique known as laparoscopy

      • By fine needle or thick needle aspiration (a core biopsy), using a computed tomography (CT or CAT) scan or ultrasound to guide the needle placement.

      • Through an endoscope (a thin, lighted, flexible tube) inserted in the mouth, passed through the stomach, and into the first part of the intestine. A tool can be passed from the endoscope through the intestinal wall to remove a sample of tissue.

        What is the treatment for neuroendocrine/carcinoid tumors?

        Treatment for neuroendocrine/carcinoid tumors includes a combination of the following:

    • Surgery to remove the tumor(s). At our center, our surgeons perform both traditional, open surgeries, as well as minimally-invasive laparoscopic surgeries.

    • Ablative techniques. This may involve either a surgery or may be done as a procedure in radiology.

    • Intra-arterial therapies

    • Chemotherapy

      Your team of physicians will create an individualized treatment plan for you…”

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    • 6.  https://www.mskcc.org/cancer-care/types/gastrointestinal-neuroendocrine/large-cell-small-cell-gastrointestinal-neuroendocrine-carcinoma

      "...Large Cell & Small Cell Gastrointestinal Neuroendocrine Carcinoma

      A few neuroendocrine tumors found in the gastrointestinal tract are made of fast-growing, poorly differentiated cancer cells, and respond to different treatments than those used for carcinoid tumors.

      Despite their rare occurrence in the gastrointestinal tract, doctors at Memorial Sloan Kettering have significant experience in diagnosing and treating patients with the following rare types of gastrointestinal neuroendocrine carcinomas:

      Large Cell Neuroendocrine Carcinoma

      This fast-growing type of cancer represents less than 1 percent of all gastrointestinal cancers.

      Small Cell Carcinoma

      This is another aggressive type of neuroendocrine tumor that accounts for between 0.1 percent to 1 percent of all gastrointestinal tumors..."

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    • 7.  http://www.cancer.net/cancer-types/neuroendocrine-tumor/introduction

                                                           "About the endocrine system

      "...The body’s endocrine system is made up of cells that produce hormones. Hormones are chemical substances that are carried through the bloodstream that have a specific effect on the activity of other organs or cells in the body.

                                                              About endocrine and neuroendocrine tumors

      A tumor begins when healthy cells change and grow out of control, forming a mass. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body if it is not found early and treated. A benign tumor means the tumor can grow but will not spread. A benign tumor usually can be removed without it causing much harm.

      An endocrine tumor is a mass that begins in the parts of the body that produce and release hormones. Because an endocrine tumor develops from cells that produce hormones, the tumor can also produce hormones. This can cause serious illness.

      A neuroendocrine tumor begins in the hormone-producing cells of the body’s neuroendocrine system, which is made up of cells that are a combination of hormone-producing endocrine cells and nerve cells. Neuroendocrine cells are found throughout the body in organs such as the lungs and gastrointestinal tract, including the stomach and intestines. Neuroendocrine cells perform specific functions, such as regulating air and blood flow through the lungs and controlling how quickly food moves through the gastrointestinal tract.

                                                                Types of neuroendocrine tumors

      There are many types of neuroendocrine tumors. This section focuses on 3 specific types: pheochromocytoma, Merkel cell cancer, and neuroendocrine carcinoma. Other types of tumors that begin in hormone-producing cells are described in their own sections on Cancer.Net, including endocrine tumors, carcinoid tumors, thymoma, thyroid cancer, and islet cell tumors.

    Pheochromocytoma. Pheochromocytoma is a rare tumor that begins in the chromaffin cells of the adrenal gland. These specialized cells release the hormone adrenaline during times of stress. Pheochromocytoma most often occurs in the adrenal medulla, the area inside the adrenal glands. This type of tumor increases the production of the hormones adrenaline and noradrenaline, which increase blood pressure and heart rate. Even though a pheochromocytoma is usually benign, it may still be life-threatening because the tumor may release large amounts of adrenaline into the bloodstream after injury. Among people with pheochromocytoma, 80% have a tumor in 1 adrenal gland, 10% have tumors in both glands, and 10% have a tumor outside the adrenal glands.

    • Merkel cell cancer. Merkel cell cancer is a highly aggressive, or fast-growing, rare cancer. It starts in hormone-producing cells just beneath the skin and in the hair follicles. It is usually found in the head and neck region. Merkel cell cancer may also be called neuroendocrine carcinoma of the skin or trabecular cancer.

    • Neuroendocrine carcinoma. Around 60% of neuroendocrine tumors cannot be described as anything other than “neuroendocrine carcinoma.” Neuroendocrine carcinoma can start in a number of places in the body, including the lungs, brain, and gastrointestinal tract..." 

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    • 8.  https://www.nanets.net/

      "Welcome to NANETS - Our mission is to improve neuroendocrine tumor (NET) disease management through increased research and educational opportunities. Each year, NANETS brings physicians, researchers, allied healthcare providers, and students together at the NANETS Annual Symposium. This is the largest professional meeting focusing on neuroendocrine research and education in North America..."      

  • Candis81
    Candis81 Member Posts: 1
    #3
    NET

    Jenn,

    how is your mother in law doing?  We just found out my dad has this same type and also in his esophagus. I got to say right now I’d give anything for good news. I am scared out of my mind of losing him. Any info of what you found out would be greatly appreciate.

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