Managing Pancreatic Cancer Through Risk Factors, Diagnosis, and AEs

Kelly A. Rone, DNP, RN, AGNP-c

Mayo Clinic

Pancreatic cancer is rare and largely uninformed among the public. Kelly A. Rone, DNP, RN, AGNP-c, an advanced practice nurse in gastrointestinal oncology at the Mayo Clinic in Phoenix, AZ spoke with CancerNetwork® about how that gap can be bridged.

Rone discussed the risk factors, modifiable and non-modifiable, associated with pancreatic cancer, the ways to educate patients about them, the challenges caused by the rare nature of pancreatic cancer, and the challenges with diagnosing patients as pancreatic cancer does not easily present.

The conversation also dove into her role in the treatment of pancreatic cancer as an advanced practice nurse, the ways she manages patient expectations and adverse effects (AEs), as well as her perspective on palliative care. She also looks towards the future; at ways the management of pancreatic cancer can improve.

CancerNetwork: How do you assess and counsel patients regarding modifiable or non-modifiable risk factors for pancreatic cancer?

Rone: We need to start with education. A lot of people don’t think about pancreatic cancer as something that they will ever get. Most people think about the more common types of cancer: colon, breast, prostate, etc., so education about modifiable vs non-modifiable [risk factors] is the starting place.

Once people know what those [risk factors] are; the usual things like you shouldn’t smoke because that increases your risk by 2 times [compared with] the risk of non-smoker. You have double the risk if you’re a smoker; obesity can also be a risk factor, if [a patient] has diabetes. A lot of people don’t realize that when they’re newly diagnosed with diabetes, their risk of developing pancreatic cancer increases. We don’t know how much, but it is something that people should be aware of.

Patients who have chronic pancreatitis are also at a greater risk of developing pancreatic cancer. If someone has recurrent pancreatitis, one of their providers should tell them they need to control it better or they’re going to develop cancer. They’re at risk, so modifying the behaviors, like excessive drinking, that cause them to develop pancreatitis [is important]. Patients should be aware that pancreatitis increases their risk [of pancreatic cancer].

There is some information on exposure to chemicals. If you work in a workplace that exposes you to chemicals, sometimes that can be difficult to control, but talk with your employer about ways to protect yourselves from the use of these chemicals.

For patients who have non-modifiable risks, a lot of the genetic syndromes that predispose you [to pancreatic cancer] should be screened differently, and people need to be aware of how the screening should proceed.

What are the most common diagnostic challenges in differentiating pancreatic cancer from other pancreatic diseases, and how has the role of imaging and biomarkers evolved in staging?

Rone: That is one of the great difficulties with pancreatic cancer. There are no good screening tools that have been proven to be highly effective. One of the difficulties with pancreatic cancer is that a lot of patients are diagnosed at a later, more advanced stage; and a big area of study is how we can find these cancers earlier, and there isn’t a clear answer.

We do know that some patients have certain genetic risk factors, like patients who have BRCA2. Some other genetic abnormalities predispose patients; patients who have PALB2 are at higher risk; some patients have Lynch syndrome. There’s Lynch syndrome 1 and Lynch syndrome 2. Patients with Lynch syndrome 2 are at a greater risk [of pancreatic cancer]. Patients with Peutz-Jeghers syndrome are at a higher risk of developing pancreatic cancer along with a lot of other health issues. Those patients should be screened a little bit more closely.

For patients with pancreatitis, there hasn’t been a definitive answer on what’s the best way to monitor those [with genetic predispositions or higher risk factors]. It could be because [pancreatitis] is invasive. If someone has chronic pancreatitis, their pancreas is inflamed all the time and that makes imaging a lot more difficult. If you have all this inflammation, how do you see past it to find a tumor? The question is: do we do CT scans regularly on these patients? Do we do an MRI? Is that better? I don’t think anybody knows. A lot of patients are not entirely interested in going through an endoscopic ultrasound, which is an invasive procedure that requires sedation. Some patients are not willing to sign up for that.

Biomarkers are also a challenge. We have difficulty with that, even in patients who have a known diagnosis of pancreatic cancer. The most common tumor marker that we use for pancreatic cancer is CA19-9. Sometimes, we have patients who have a normal CA19-9 when they have pancreatic cancer. It causes anxiety for patients who have these erratic tumor markers when we’re treating them for pancreatic cancer, or if their tumor marker may be up for reasons that we don’t understand.

It's not like a prostate-specific antigen [PSA] test where we know, if you have an elevated PSA, something’s wrong with your prostate. It’s not that clear in patients who have pancreatic cancer. There’s lots of research looking for circulating tumor DNA. Will we be able to find the golden ticket that tells us if a person has a greater risk, so they can be followed more closely? We haven’t found it yet.

There are multiple studies underway that are using the fluid from fine needle aspirations for patients who have known pancreatic cancer to see if they can identify markers that may be used for screening, or for following these patients. One of the great difficulties with pancreatic cancer is that it’s a fairly rare cancer, and we don’t have a lot of patients to do this study on, so it takes a lot longer to get the quantity of data that we need to prove something. It may take a while.

What is your role in the treatment planning phase for patients with pancreatic cancer?

Rone: By the time I get to see the patient for the first time, they have seen the oncologist and are, most likely, started on treatment. The management of patients is different based on whether they’re diagnosed as metastatic or if they are thought to be resectable.

The patients who have this designation of what’s called borderline resectable are in the hardest place to be because they’re working towards surgery to be potentially cured, but only about 25% of those patients make it to resection, which means 75% of them don’t. I spent a lot of time trying to educate patients, both the possibly resectable and the patients with metastasis, that cancer is a mutating entity and that we don’t know how their cancer is going to respond. Pancreatic cancer is typically not overly responsive to chemotherapy, in that when we treat patients who have colon cancer, breast cancer, or lung cancer, those cancers tend to shrink dramatically when they start treatment. Pancreatic cancer doesn’t do that.

I manage patients’ expectations. I try to let them know not to be disappointed if their cancer only decreases by 10% because we think that’s good. It’s better than the cancer being larger. A lot of patients come in thinking that their cancer is going to shrink away to nothing, and we have to educate patients that it’s unlikely.

If a patient has imaging, a CT scan, or a PET scan, and their cancer looks worse, then I discuss with the oncologist what the next step in their treatment might be, and then educate patients on the new treatment and what the new AEs might be.

Are you able to go into a little bit more detail about how you manage AES for those patients?

Rone: There’s a variety of AEs. Sometimes patients will have upper abdominal pain or mid back pain, and that’s what leads to their diagnosis. A lot of times, just treating their cancer will make [the pain] better, but it may take a couple of treatments before their symptoms have improved. We do management of pain. It is something that has to be treated with an opioid or other analgesics, or we can send them for what’s called a celiac Plexus block, a procedure that numbs the cluster of nerves that are located near the pancreas.

A lot of patients have appetite issues. There’s something about pancreatic cancer that just crushes a patient’s appetite. One of the things that happens with a lot of patients before they get diagnosed is they lose a bunch of weight, and part of that is because their appetite is suppressed. When we give chemotherapy, that tends to not help. Chemotherapy often will make foods taste weird or make it hard to eat. We try to encourage patients to eat small, frequent meals. We might connect them with dietitians. Sometimes we use an appetite stimulant, but a lot of times, we convince patients that they need to eat when it’s mealtime because they don’t have a trigger that tells them to eat. They may have to schedule [their meals]. I often tell patients that their job now is to eat.

The other thing that sometimes occurs with patients who have pancreatic cancer is pancreatic insufficiency and there are a lot of GI issues that occur with that. They’ll get diarrhea, lots of gas, and bloating, and sometimes patients don’t know what’s happening. Pancreatic insufficiency is one of the reasons why patients have weight loss because they’re not processing the food properly. I start a lot of patients on pancreatic enzymes to eliminate some of their GI issues, or at least improve their GI issues and help [improve] their nutritional status through better absorption of the food.

Eating [sometimes] just isn’t appealing to the patients. I also tell them not to eat in the bed or at the chair watching TV. You have to make it seem like a mealtime. Go to the table and eat like you would a normal meal because that will trick your brain into thinking that it’s time to eat. Sometimes that will help patients eat a little bit more.

When they don’t eat their fatigue increases, and that can make patients feel terrible. I try to convince people to think of food as fuel. If you’re not putting any gas in your tank, you’re not going to have any energy to go.

What are some of the key components of palliative care for this population, and how do you help transition patients into this space?

Rone: Anyone with a pancreatic cancer diagnosis, whether they’re resectable or uncurable, should be connected to palliative medicine. I try to get patients in as soon as possible. One of the difficulties is that when patients are first getting the diagnosis, they have a million different appointments to go to. They go to the gastroenterologist to have their biopsy. They need to see the surgeon. They need to see the oncologist. They have to see all these people.

When you say to them that they would benefit from seeing a palliative care specialist, they say they don’t want another doctor or another visit. Some patients come in and want to do anything to make their lives better. Those patients are easy, and we get them right into palliative care, but we have to ease some other people into it.

We are doing a lot of their palliative care from the beginning. There’s a lot of education that has to be done to explain to patients what palliative care is. A lot of times when you say to someone that they should be seen by palliative medicine, they think they’re dying or that they aren’t going to survive. We have to educate patients that palliative care does a lot more than end-of-life care.

There is a lot of research that shows patients who get involved with palliative care early have a longer and better life expectancy. I try not to say to people, “Hey, you might live longer if you go into palliative care,” but, especially for patients who are metastatic, we know that if we get you involved early in palliative medicine, it will extend your life. In that regard, most people are interested in going.

How do you help address those unique psychosocial needs for patients and their families when dealing with pancreatic cancer?

Rone: I have to assess what their situation is. I had an interesting experience with a patient recently. He’s not a patient with pancreatic cancer, but this interaction highlighted an aspect of caring for patients that I hadn’t thought of before. This patient gave me something called a challenge coin, which I had never heard of before, and it’s this little disc that people in the military will hand out. This patient gave me this coin because he appreciated all that I did for him.

It's important that we realize that patients were people without cancer before they got to us. This is what’s hard because when you learn more about your patients, then you care more about them. Not that we shouldn’t care about our patients, but for patients who have metastatic disease, it’s a lot more difficult because we know the trajectory, but it’s just as important that you guide the patient through that.

We’re seeing more and more patients that are young and, if they have young kids or a wife who doesn’t work, we need to address the financial aspects of someone passing away from their cancer. One of the things that palliative medicine does well is letter writing and legacy building.

We can’t think of patients as just their cancer, but as how their cancer is affecting their lives. I don’t know that everybody is disclosing [their disease]. They might have to keep working because if they don’t, they’ll lose their insurance. We’re very lucky, where I work, that we have excellent social workers who help us with those issues. We have child life specialists if a patient has young children. We need to ask if there are any issues and, as you see patients for longer, they disclose more of their issues. We have to remember that our patients are people, not just their cancer.

Looking ahead, how do you hope to see this field evolve within the next 5 to 10 years?

Rone: I hope that we can find a way to detect [cancer] sooner. In one of the studies that I was looking at for the development of biomarkers, one of the things they pointed out was that, because pancreatic cancer is so rare, a primary care doctor may only see 1 or 2 patients who have pancreatic cancer in their entire medical career, which is not very much. A lot of the symptoms of pancreatic cancer are so vague that you can attribute it to a lot of stuff. If a patient is having lots of heartburn or if they have a weird feeling in their stomach, [a primary care doctor] may think it’s reflux. So, they’ll give the patient a proton pump inhibitor and move on.

There was one article where they were working on a program for shifting patients from primary care into a clinic using decision support tools [that map out how to respond to different situations], like if this happens, then do this. They were developing a clinic to send people to do a further workup. I don’t know if that’s feasible.

One of the other areas that was interesting is, that they found in the last several years that people who have diabetes later in life have an increased risk of developing [pancreatic cancer] within the next 2 to 3 years. They’re looking at how we screen patients who have newly diagnosed diabetes for pancreatic cancer. They haven’t figured that out yet, so we need to figure out how we can find it sooner. The patients who I found do the best are the ones who found their cancer by accident. At an early stage, patients do the best. We know patients who get diagnosed at stage 1 or 2 do better. We need to figure out how to make that happen [more often], but we also need to figure out how to make chemotherapy work better. Pancreatic cancer is not super responsive to chemotherapy. How do we make the cancer that people develop respond better?

Is there anything else you wanted to highlight today?

Rone: A lot of patients don’t know there are different kinds [of pancreatic cancer]. There is a distinction between pancreatic adenocarcinoma and pancreatic neuroendocrine cancer, or neuroendocrine tumors. At our institution, we have a pancreatic cancer support group. We let anyone who has pancreatic cancer come, so there’s a mix of people who have neuroendocrine cancer and adenocarcinoma.

I’ll have patients who have been told they’re going to die to their cancer, and then go to this cancer support group, and there’s somebody in there who’s been getting treated for their pancreatic cancer for 10 years.

Adenocarcinoma is much more difficult, much more rapidly growing, and much harder to treat, than neuroendocrine tumors. Not that neuroendocrine tumors are a good cancer, but they are more indolent and a little bit easier to treat. There are more treatment options than for patients who have adenocarcinoma. It’s also important that people be educated on the differences between the 2 cancers.