Hello fellows,
I'm creating a thread to discuss this specific cancer, which I didn't know much about and seems not so common, and not much studied either.
A friend of mine has it, but I was not sure what kind of cancer it was, I just knew the liver and pancreas were involved, we never really went into the details as we don't see each other so often nor are we so proximate, the situation was sort of steady from an external point of view.
Today I saw her father, then her husband too, they just had terrible news, she was having abdominal pain, so they checked, and actually the tumors have grown over the intestines, pancreas and liver, ovaries and clavicle. They're going to do a puncture because she has a lot of water in her intestines, hoping that this liquid doesn't contain cancerous cells. The oncologist is quite concerned this time, and they are considering switching from drug-based chemotherapy to intravenous chemotherapy, as well as surgery for the ovarian tumors.
I did a search over here and was going to try to find solutions or ways to help. They'd like to at least understand the root cause of it, and it seems not so easy to find out.
It was diagnosed two years ago, but you wouldn't know she had cancer if you saw her. It was a slow progression and sometimes people discover they have it when they end up doing other exams, if they have chronic stomach ache for example.
Here is a description :
I'm creating a thread to discuss this specific cancer, which I didn't know much about and seems not so common, and not much studied either.
A friend of mine has it, but I was not sure what kind of cancer it was, I just knew the liver and pancreas were involved, we never really went into the details as we don't see each other so often nor are we so proximate, the situation was sort of steady from an external point of view.
Today I saw her father, then her husband too, they just had terrible news, she was having abdominal pain, so they checked, and actually the tumors have grown over the intestines, pancreas and liver, ovaries and clavicle. They're going to do a puncture because she has a lot of water in her intestines, hoping that this liquid doesn't contain cancerous cells. The oncologist is quite concerned this time, and they are considering switching from drug-based chemotherapy to intravenous chemotherapy, as well as surgery for the ovarian tumors.
I did a search over here and was going to try to find solutions or ways to help. They'd like to at least understand the root cause of it, and it seems not so easy to find out.
It was diagnosed two years ago, but you wouldn't know she had cancer if you saw her. It was a slow progression and sometimes people discover they have it when they end up doing other exams, if they have chronic stomach ache for example.
Here is a description :
Endocrine disruptors are probably to blame, eliminating lectins and taking iodine seem like reasonable choices, but I will abstain myself from making any recommendation now. We just hope to support them in this trial and will do our best to be on their side. I will propose prayer and faith first.Neuroendocrine tumors (NETs) are a rare but complex type of cancer that can arise in many parts of the body. Because NETs are uncommon, it’s important to get care from doctors with expertise in this condition.Neuroendocrine Tumors (NETs) | Knight Cancer Institute | OHSU
Learn about treatment for neuroendocrine tumors (NETs) and neuroendocrine cancer at the OHSU Knight Cancer Institute in Portland, Oregon.www.ohsu.edu
The OHSU Knight Cancer Institute is one of the few hospitals in the nation with a team focused on NETs. We offer:
- A multidisciplinary approach, in which experts from different specialties work together. You benefit from their combined knowledge.
- The latest diagnostic techniques.
- The latest therapies, including radiopharmaceuticals like PRRT.
- A wide range of clinical trials for promising new therapies.
- A full range of support services for you and your family.
Understanding NETs
Despite their name, NETs don’t usually occur in the brain. They start in the neuroendocrine cells. These cells are found in many organs throughout your body. They listen to signals from nerve cells and respond by making hormones that they release into the bloodstream.
Sometimes these cells begin to divide and grow out of control, forming tumors. Sometimes these tumors disrupt your hormone levels and throw your body out of balance.
Most NETs grow slowly and don’t spread. But some grow faster and can spread to other parts of the body.
About 95% of NETs develop in the digestive tract, the pancreas or in the lungs. They can be difficult to diagnose because they may cause no or few symptoms.
We use the term NETs to describe a vast range of tumors, but each NET is as unique as each patient. This means we tailor your treatment to your specific tumor.
Functioning and nonfunctioning NETs
Most NETs are nonfunctioning, which means they do not produce hormones.
But some NETs are functioning, which means they can disrupt your hormone levels. These NETs cause hypersecretion, or over-production of hormones. Here are some examples:
Who gets NETs?
- Gastrinomas: These tumors make gastrin, which causes the stomach to make acid to digest food. Too much gastrin can lead to stomach ulcers (open sores) and pain.
- Insulinomas: These make insulin. Too much can lead to low blood sugar, which can cause confusion, fatigue, irritability, weakness and lightheadedness.
- Glucagonomas: These make glucagon, which raises blood sugar levels. Too much can cause diabetes, with symptoms such as thirst and frequent urination. Patients can also develop other symptoms, including a red blistering rash on the face, stomach or legs.
- Somatostatinomas: These tumors make somatostatin, which controls other hormones. Symptoms of too much somatostatin include high blood sugar, diarrhea, gallstones, jaundice, weight loss and foul-smelling stools.
- VIPomas: These produce vasoactive intestinal peptide. Too much can cause symptoms such as severe watery diarrhea, thirst, headaches, dizziness, fatigue, weight loss, muscle weakness and belly pain or cramps.
- PPomas: These make pancreatic polypeptide, which helps regulate the pancreas. Symptoms can include watery diarrhea, belly pain and an enlarged liver.
NETs are rare. Roughly five in 100,000 people in the U.S. are diagnosed with a NET each year. But incidence rates are rising, in part because tests are getting better.
What causes NETs?
Researchers are still trying to figure out the cause of NETs. A small portion of NETs are linked to inherited genetic conditions such as:
We offer genetic counseling if you think you might have a family history of cancer.
- Multiple endocrine neoplasia Type 1, or MEN1
- Neurofibromatosis Type 1
- Von-Hippel Lindau syndrome
Types of NETs
- Gastroenteropancreatic NETs (also called GEP-NETs): These are the most common NETs. They include both small intestine NETs and pancreatic NETs.
- Pancreatic NETs (PNETs): These arise in the pancreas, the gland that controls digestion and blood sugar levels. PNETs may disrupt the hormone system that governs digestion, thirst and hunger. They are sometimes known as islet cell tumors because they form in cell clusters that resemble islands.
- Small intestine NETs (also known by the older term carcinoid tumor): These slow-growing tumors are found in the lining of the gastrointestinal tract, which has more neuroendocrine cells than anywhere in the body. About 8,000 cases of this type are diagnosed in the U.S. every year.
- Bronchopulmonary NETs: These are tumors that develop in the lungs and airways.
- Neuroendocrine carcinomas (NECs): These are rare but often aggressive cancers that require prompt treatment.
- Merkel cell carcinoma: This uncommon skin cancer typically grows in areas with high sun exposure. Symptoms include firm bumps that are usually red, pink or purple. About 1,500 cases are diagnosed in the U.S. every year. More than 9 in 10 people affected are older than 50, and more than 9 in 10 cases are found in white people.
- Medullary thyroid carcinoma: This cancer develops in the cells that produce calcitonin, which controls the amount of calcium in the body.
- Pheochromocytomas and paragangliomas: These extremely rare tumors form in the adrenal glands or along the spinal cord. They release hormones that cause high blood pressure, elevated heart rate and other issues.
- Rare NETs: NETs can also arise in the kidneys, the thymus and the thyroid.