In the early stages of growth, carcinoid tumors rarely present any signs or symptoms of their existence. The signs typically don’t arise until the tumor has started to grow or there is metastasis to another organ. The signs of carcinoid tumor vary based on the organ from which they arise.
So, next time you see a patient, next time someone sits in front of you, begging for help, next time you fill in that referral form, pass on medical information, complete a scan …
…next time, remember it may not mean much to you, but it is my life and to me, this is everything.
It is all I have.
PRRT is one of several experimental approaches that is expected to expand the treatment options, and improve the prognosis, for many patients with NETs. Coupled with advances in imaging and surgery techniques, a growing selection of targeted drugs approved by the Food and Drug Administration (FDA) are boosting survival times.
Although he has not talked publicly about the reason for his leave, it is because of Steve Jobs that the press has focused far greater attention on these rare cancers. Critical needs in the carcinoid and NET cancer community are awareness and early diagnosis. Over 90% of carcinoid/NET cancer patients are incorrectly diagnosed and treated for the wrong disease.
An interesting additional note is that 25% of all carcinoid patients will at some time in their lifetime develop another cancer of another type. It may have preceded the carcinoid, it may come during the carcinoid’s known presence, or it may come after the carcinoid has been removed. The most common such tumors in men and women are carcinoma of the colon or, in men, prostate cancer, and in women, breast cancer.
If you made it past the title, perhaps you’ve heard of this rare cancer. Otherwise, you’re just curious. I was introduced to this cancer when, 10 years ago, my husband received the kind of diagnosis that no one ever wants to hear: “You have cancer in the pancreas and too many tumors in the liver to count.”
You are a rare group of people. Those people who have talked to me on the phone, and there are probably very many of you, know that I call you the “Pink Zebras with Purple Polka-Dots”. To give you an example, one out of about eight women get breast cancer in their lifetimes. One in a million women get carcinoid syndrome. So, you are truly the “rare squared” group of people. To be able to get almost 200 carcinoid patients who paid their own way, are willing to network, talk with, and support one another here in this auditorium is a major tribute to all of you.
Symptoms of NET include diarrhea, wheezing, changes in blood sugar levels, flushing of the head and neck and sweating.
This review covers the diverse topic of neuroendocrine neoplasms (NENs), a relatively rare and heterogeneous tumor type, comprising ~2% of all malignancies, with a prevalence of <200,000 in the United States, which makes it an orphan disease.
Pancreatic neuroendocrine tumors (pancreatic NETs or PNETs) account for about 7 percent of all pancreatic tumors. They may be benign or malignant and they tend to grow slower than exocrine tumors. They develop from the abnormal growth of endocrine (hormone-producing) cells in the pancreas called islet cells. This is why these tumors are sometimes referred to as “islet cell tumors.”
Last week the world lost a music legend, Aretha Franklin. Many news organizations erroneously reported that she had passed away due to complications of pancreatic cancer. While Ms. Franklin was quite private about her health, she had spoken about her diagnosis on occasion. She actually did not have pancreatic cancer, but a neuroendocrine tumor in the pancreas. I see this a lot in the media – misreporting of a cancer diagnosis (but that’s a topic for another day).
Award winning "community" site. No fund raising or selling please. Blogs and up to date news about Neuroendocrine Cancer from impeccable sources. No myths. Private chat for patient support available in my group.
To optimize the care of those with neuroendocrine cancer through the education of and collaboration among physicians, health care providers, patients, and caregivers.
Around 2,000 people are diagnosed as NETs every year, and through the Foundation we aim to promote a wider knowledge of the disease amongst the general population
Our mission is to intensify awareness of carcinoid cancer in both the medical community and the general public- locally and nationally.
The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for neuroendocrine cancers.
Raising awareness of neuroendocrine cancers around the world.
An overview of my journey dealing with a rare cancer.
An advocate for Carcinoid and Neuroendocrine Tumor Awareness.
Whether you’ve recently been diagnosed with a neuroendocrine tumor (NET) or are looking to learn more about the symptoms you’re experiencing – CarcinoidSyndrome.org can help you find the answers you need most.
INCA is the global voice for Neuroendocrine cancer (NET) patients and their carers with a mission to:
raise awareness about all types of NETs;
push for scientific advancements with a focus on identified unmet needs;
and provide a platform for global collaboration to address the many challenges NET patients and the medical community face, in securing a timely diagnosis and accessing optimal treatment, support and care;
The Carcinoid Cancer Foundation is the oldest nonprofit carcinoid/and related neuroendocrine tumor organization in the United States, founded in 1968. The mission of this foundation is to increase awareness and educate the general public and healthcare professionals regarding carcinoid and related neuroendocrine tumors (NETs), to support NET cancer patients and their families, and to serve as patient advocates.
Endocrine-Related Cancer is the established global journal for basic, translational and clinical research on hormones and cancer. Endocrine-related cancers typically include cancers of the breast, prostate, pituitary, testes, ovary and neuroendocrine system as well as hormone-dependent cancers elsewhere
This journal examines all aspects of hormone action on cancer causation, progression, dependence, prevention, resistance, and treatment. It details findings with clinical applications in the prevention, diagnosis and treatment of hormonally related cancers.
Information about gastrointestinal carcinoid tumor treatment, including surgery, chemotherapy, radiation therapy, immunotherapy, and vaccine therapy
Carcinoid tumors are well-differentiated neuroendocrine tumours with secretory properties, releasing serotonin, along with a number of other active peptides. These tumors can arise anywhere along the primitive gut and are therefore found in the bronchial tree (airways) and along the gastrointestinal tract. The tumor cells can also migrate (metastasize) to the liver.