“A PNET is very different from the more common adenocarcinoma and, as such, is treated completely differently,” says Andrew Hendifar, MD, medical director of pancreatic cancer at Cedars-Sinai in Los Angeles. PNETs are far slower to develop than adenocarcinomas and can often be cured through surgery. Depending on the type of tumor you have, as well as its size and location in the pancreas, there are also a number of other treatment options, including traditional chemotherapy and targeted molecular therapies, like peptide receptor radionuclide therapy (PRRT). If you’ve been diagnosed with a PNET, you may have worked quickly with your care team to develop a treatment strategy. But you may well be wondering what to expect after treatment. Will you continue to suffer from GI issues? If you have surgery, how soon will you be able to get back to your normal life? And will surgery actually cause you to develop diabetes? Knowing what to expect can make it easier to anticipate and plan for setbacks and complications as you get one with your life. Here are nine post-treatment after effects to be aware of:
1. If You Have PRRT, You’ll Need to Follow Radiation Safety Precautions
PRRT specifically targets neuroendocrine tumor (NET) cells and exposes them to radiation, leaving healthy cells relatively unaffected. This exposure can be dangerous for others. “PRRT is a first-in-class medicine that delivers systemic radiation therapy, and patients may have some radiation coming from their body for a few days after treatment,” says Dr. Hendifar. The radiation safety professional at your hospital will give you a primer about rules regarding your contact with loved ones, as well as people in public, and give general hygiene advice so others can stay safe too. It’s something to think about and prepare for ahead of time, as loved ones may have to change how they offer their help and support post-infusion.
2. You’ll Be in the Hospital for Quite Some Time
PNET surgery involves usually either a distal pancreatectomy (removal of the tail or portion of the body of the pancreas; sometimes the spleen is also removed) or Whipple (removal of the head of the pancreas, the first part of the small intestine, gallbladder, and bile duct). If your cancer has spread to your liver, surgery may also remove lesions here. “Patients recover faster with distal surgery versus the Whipple,” says Richard Schulick, MD, the chair of surgery and director of the University of Colorado Cancer Center in Aurora. Expect to spend anywhere from three or four days to 9 to 10 days in the hospital. RELATED: Recovering After Pancreatic Cancer Surgery: 5 Top Tips
3. If You Have Surgery, Expect Weight Loss
It may be alarming to you to know that you’ll likely lose 10 percent of your weight following PNET surgery. Why? Surgery is stressful, and you’re probably not eating much during initial recovery, says Dr. Schulick. You may continue to lose weight for a couple weeks following surgery, says Hendifar. This is normal, and during recovery you should start to gain it back. Working with a registered dietitian can help you identify foods that you find palatable and sit well with you. The fortunate news is that “in general, patients with PNETs are in pretty good physical shape to start,” says Hendifar.
4. Recovery From Surgery Takes Time
It’s not only that the surgeries for this condition can be complex, it’s that your body has to adjust to a new anatomy living with a partial pancreas and, in some cases, the removal of other organs involved in digestion. Patients say they feel pretty good after one month, says Schulick, but may still feel run down. They usually get their energy back two months following surgery.
5. You’ll Continue to Have GI Issues, at Least for a While
Removal of some of your pancreas may mean the organ can’t produce enough pancreatic enzymes needed to digest your food, which may mean that you experience diarrhea. The risk is that if you can’t properly digest your food, you won’t get the nutrients you need. The good news is that you can take pancreatic enzymes when you eat, which will help manage symptoms. “Post-surgery, we have all of our patients take enzymes because we don’t want to take a chance,” says Schulick. One warning: Doctors recommend the prescription version of these enzymes, as they’re more effective than those available over the counter. That said, they can be expensive; ask the nutritionist you’re working with if they have samples available in office or if there are any discount programs available to you. You may not need to take these forever. Schulick says most doctors will try to taper you off your dose over time.
6. You May Develop Diabetes
Your pancreas has another important job: to produce insulin. When it’s not producing enough, you may develop diabetes and high blood sugar. “We ask patients to monitor their blood sugar at home with a glucose monitor, which are easy to find and inexpensive at the drugstore,” says Schulick. The more pancreas that is removed, in addition to having other risk factors for diabetes (high BMI, family history), the greater your likelihood of developing the disease. (It happens in about one-third of patients.) RELATED: The Best Blood Sugar Monitors to Help You Manage Diabetes
7. Watch the Heavy Lifting
Depending on if surgery was done via open incisions or laporoscopically, you may have small or large incisions, says Hendifar. These may be closed with stitches or staples. In some instances, you may have an incision that runs down the length of your abdomen. The look of it can be shocking, if you’re not prepared. Talk to your surgeon if there’s anything you need to be mindful about while you heal, like heavy lifting (grocery bags or grandchildren). “Sometimes actions like heavy lifting can create problems involving your incision, like a hernia,” he says.
8. Plan to Nap
When you go home from the hospital, you’re not likely to be up to knocking off tasks from your to-do list or catching up on projects. Surgery can leave you completely wiped, so don’t be afraid to embrace napping during the day. “There is nothing more healing than rest. The more sleep you can get at this time, the better,” says Hendifar.
9. A Little Exercise Is a Good Thing
That said, while you shouldn’t overextend yourself, you also do need to fit in activity when you are awake, says Hendifar. “In the process of getting surgery, you’ll lose a lot of your muscle. Being active will help you get stronger,” he says. If necessary, your healthcare team can refer you to a physical therapist to rebuild strength so you can get back out there faster — and even better than before.
