How to Prepare for Pancreatic Neuroendrocine Cancer Treatment
Pancreatic cancer doesn’t have to be a death sentence. That’s especially true if you have a pancreatic neuroendocrine tumor (PNET), a rare type of the disease that’s vastly different from the more common form of pancreatic cancer, adenocarcinoma.
“Pancreatic cancers come in many forms, and there is a totally different approach to treating PNETs from adenocarcinomas,” says Richard Schulick, MD, the chair of surgery and director of the University of Colorado Cancer Center in Aurora.
The five-year survival rate for a PNET is a remarkable 95 percent if the tumor is localized (has not spread), according to the American Cancer Society. That’s because PNETs behave differently than adenocarcinomas, which are fast to grow and often metastatic (meaning they have spread to other organs in the body).
“What I tell patients with a PNET is that the great majority move very slowly. If they’re localized and there’s no evidence anywhere else [that they’ve spread], the great likelihood is that surgery will either cure (if caught in an early stage) the cancer or, if not, the patient will still live a long time. That’s a very different mindset from someone who has an adenocarcinoma,” says Dr. Schulick.
There are many different types of treatments available for a PNET, including surgery, chemotherapy, hormone therapy, and targeted therapies, according to the National Cancer Institute. Peptide receptor radionuclide therapy (PRRT), a new infusion therapy that specifically targets and puts radiation into neuroendocrine tumor (NET) cells, is one such option, per University of Chicago Medicine. The type of treatment, or combination thereof, that is best for you will be determined by your treatment team.
As you’re preparing for treatment — especially surgery — here are six things you can do to set yourself up for a strong recovery:
1. Make Sure You Have a Team
“A patient that has an NET needs to be treated by a multidisciplinary clinic. They should not go to one practitioner who tells them everything they need,” says Schulick. That’s because the treatment plan involves many moving parts, including diagnostic workups, scans like computerized tomography (CT) and ultrasound, endoscopies to perform biopsy, and (perhaps) surgery on the pancreas and surrounding organs, such as the liver.
Your team may then consist of multiple surgeons, medical and radiation oncologists, radiologists, pathologists, gastroenterologists, dietitians, and more. “The goal with therapy for people with a PNET is to either cure them or make sure they live a long time with a great quality of life. You need these specialists to not just come up with the next step, but to develop a long-term approach to management,” says Schulick.
2. Ask if the Tumor Has Been Typed
There are several different types of PNETs, like gastrinomas, insulinomas, and glucagonomas, which may require different management and treatment approaches, according to the Pancreatic Cancer Action Network. That’s why it’s important that you receive specific tumor testing, says Andrew Hendifar, MD, medical director of pancreatic cancer at Cedars-Sinai in Los Angeles.
3. See a Surgeon Who Specializes in the Pancreas
This sounds like a no-brainer — of course you want a surgeon who knows what they’re doing. But the reality is that there are just 1,000 new cases of PNETs per year, according to the National Cancer Institute, and surgical removal is a very specialized thing. “The surgeon you choose should be someone who is known in the community for operating on the pancreas,” advises Dr. Hendifar. Good questions to ask, says Schulick, are “How many patients like me do you see in a year?” and “How many of these procedures do you do in a year?” You should feel satisfied with the answer they provide.
4. Rein In the Fat
Not everyone has GI symptoms when they have a PNET, but it’s possible that you may be experiencing them. “There are three telltale symptoms: cramping and bloating after you eat; fatty, foul-smelling oily diarrhea; and, despite eating a lot, you’re not gaining weight,” says Schulick. In some cases, tumors can cut off the pancreas’ ability to make enzymes needed for digestion.
To best manage these symptoms, “I tell people to eat a healthy, medium-fat diet. If you’re losing weight, don’t stress so much about trying to gain a lot of weight before the surgery, because the reality is that it probably won’t get fixed until we operate,” says Schulick. Your doctor may also recommend taking prescription pancreatic enzymes (these are more effective than those available over the counter), which will help alleviate digestive issues as you approach treatment.
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5. Maintain Healthy Habits
If you are having surgery, you’ll want to reduce your risk of getting ill before your operation. You don’t have to avoid friends and family completely, but practice common-sense prevention strategies, like staying away from sick relatives, washing your hands regularly, and keeping out of high-risk situations. (For instance, now is not the time to attend your grandchild’s preschool party.)
6. Stay Optimistic
The news that you have a PNET no doubt rocked your world, and it will change your life — cancer has a way of doing that to people. But your mindset matters. “It’s key to be positive and look at all the new therapies that just came out in the last couple of years that are game changers,” says Schulick.
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