Getting the right treatment for your neuroendocrine tumor (NET) starts with a little fact-finding. The most important thing you need to figure out is where the disease started and if it's spread to a new spot.
If your tumor is small and is growing slowly, you may not need treatment. If you have to take action, surgery, drugs, and radiation are three options to destroy NETs and ease your symptoms.
A team of doctors works with you to create a treatment plan, says Jaffer Ajani, MD, professor of gastrointestinal medical oncology at the University of Texas/MD Anderson Cancer Center in Houston. It's OK to ask questions and get a second opinion if you're unsure about the recommendations they've made.
It's usually the first step for treating NETs, says Eugene Woltering, MD, neuroendocrine tumor program director at Ochsner Medical Center-Kenner in New Orleans. Your doctor will remove the tumor and any affected nearby lymph nodes, small organs throughout your body that help fight infection.
Your surgeon may remove more tissue if your cancer has moved from its original location. He may also use one of these techniques to stop it from spreading more:
- Radiofrequency ablation. Energy heats and kills your tumor.
- Hepatic artery embolization. Drugs go through an artery in your liver to block blood that's feeding your tumor.
- Fulguration. An electric current kills cancer cells.
- Cryosurgery. Intensely cold liquid or gas freezes your tumor.
After surgery, you may have pain, fatigue, or feel weak for a few days.
Talk to your doctor if you have unusual symptoms like flushing skin on your face or neck, stomach pain, diarrhea, or shortness of breath. Your NET could be causing them.
"You want to find out if the patient has any clinical symptoms that says the tumor is making hormones," says Diane Reidy-Lagunes, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center in New York. NETs in your pancreas can make insulin, for example.
You may need treatment with hormone therapy, which can slow or kill your tumor, Ajani says. Somatostatin drugs like octreotide and lanreotide can ease symptoms caused by too many hormones.
You could need medicine to kill cancer cells that are still there after surgery, or to treat your NET if surgery isn't right for you.
If your doctor suggests chemotherapy, you'll get drugs that go through your whole body to kill cancer cells. Chemo may be taken as pills or through intravenous (IV) drips. You may have side effects like nausea or hair loss during your treatment.
Targeted treatments are newer drugs that attack the exact proteins or genes in your type of tumor. Imaging scans can help your doctor decide which ones you should use.
Biologic drugs can also be used to treat NETs. These meds boost your immune system -- your body's defense against germs -- to fight your cancer. They're also called immunotherapy.
This treatment uses energy waves like X-rays to destroy your cancer cells. Some people with NETs get traditional "external beam" radiation. You'll lie still while a machine aims radiation at the area of your tumor.
You might use a special form of this therapy to treat your tumor, Woltering says. "We can use a 'smart bomb' of radiation sent to your tumor with a sneaking molecule we create for the job." Your doctor can guide radioactive treatment right to your tumor with the help of an imaging scan machine, he says.
You'll probably need a few treatments of any type of radiation to kill the tumor and cancer cells. Some side effects that you may get include fatigue, skin reactions at the site of your treatment, upset stomach, or loose bowel movements. They should go away soon after you're done getting radiation.
If you have a NET that makes hormones, you may need to change your diet to ease or prevent symptoms. A nutritionist can come up with an eating plan for you, including which foods to avoid, Woltering says.
After you have surgery to remove some of your pancreas, for example, it can be hard to absorb fats in your diet. This can cause diarrhea and make it hard to absorb some vitamins, like B12 or D, that you need for good health. Your nutritionist can come up with a plan to add some vitamins back in, as well as minerals like calcium to keep your bones strong.
Don't try high vitamin doses to treat your disease on your own, Reidy-Lagunes says. "Some vitamin treatments may make cancer worse, and have been shown to not be helpful, but actually harmful. Eat a whole orange instead of taking vitamin C tablets."
While you get your treatment, don't neglect your mental and emotional health. NETs, like any cancer, may make you anxious or depressed. Meet with a therapist or join a support group to talk about your feelings, Reidy-Lagunes says. Meditation and other mind-body techniques may help you ease stress too, she says.