What Nurses Need to Discuss With Patients With Metastatic Colorectal Cancer

A multistakeholder roundtable discussion, moderated by Nilofer Azad, MD, of the Johns Hopkins University Sidney Kimmel Comprehensive Cancer Center, focused on the colorectal cancer treatment, management, and care. Dr. Azad was joined by Rachel Klein, MSN, CRNP, and Fatemeh Youssefi, PhD, RN, OCN.

In the first segment of the roundtable series, the panelists discuss how they talk to patients with metastatic colorectal cancer about their treatment options, survival outcomes, and more.

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Dr. Azad: How we’re going to structure our conversation today is to talk about a few different important areas in terms of how we take care of patients with metastatic colorectal cancer, and we really want to focus today on metastatic disease. There are a lot of nuances to taking care of different stages of colorectal cancer, but today we’re going to really focus on some of the challenges and opportunities that have come up in terms of taking care of patients with more advanced disease. I’m just going to start with a little bit of background about metastatic colorectal cancer.

As many of you know, colorectal cancer is the second leading cancer killer in the United States. It has been a cancer where the mortality has been slowly decreasing, mostly because of improved screening over the course of the last decade. But unfortunately, 20% of patients are still diagnosed with metastatic disease, and metastatic disease is generally considered incurable for the vast majority of patients, though of course there are a small number of patients with metastatic disease that we can still treat with curative intent. What I’d like to start with is to talk a little bit about how you approach a patient who comes into the clinic with a new diagnosis of metastatic disease.

Rachel, you’ve been involved in taking care of a lot of patients and seeing them from the very beginning of their cancer journey. Can you speak a little bit to how we talk to patients with their first diagnosis and what things we’re thinking about when we’re making some choices?

Ms. Klein: It’s a great question. I think with anyone who’s coming in with presumed or confirmed metastatic colorectal cancer, I think the first thing is really to ensure that the staging has been completed. Sometimes patients are coming in without a complete set of testing that would confirm, whether it’s biopsies or different modalities of testing, to just really understand the extent of what we’re dealing with and also the specific molecular diagnostics that would be pertinent to how we would treat them. Once we have that information, and I’m sure we’ll expand on that a little bit more, I think that setting expectations to the best of our ability is a really important concept from the onset.

Striking that balance between optimism and also realism can be a challenge, and even for us as experienced practitioners, we can’t always tell someone their true prognosis right away. Oftentimes, we are honest with patients that we won’t actually know how long they can survive with this. It might be years if we’re able to treat them effectively for a prolonged period of time with systemic therapies or localized therapies in conjunction or even surgery down the line, but it may be unfortunately a shorter timeframe, but it really depends on how they respond to therapy. Again, trying to just express our optimism that we’re part of their team no matter what, express that we care about them, we care about their lives and their goals within their lives because we don’t want them to miss important events, and we want them to focus on what is truly aligned with their values in their life alongside treating this cancer as hopefully a chronic disease for as long as medicine will allow.

Dr. Azad: I think you brought up a lot of really important points about that first visit that I’d love to talk about just a little bit more. The first thing you mentioned was molecular testing, and this is a cancer where a patient’s molecular testing really guides first-line therapy. The most important things that we need to know for a patient is number one, do they have microsatellite instability? That is a test that’s done on their pathology specimen, and if a patient has microsatellite instability, which is only present in about 5% of patients that have advanced disease, their first-line therapy is actually going to be immunotherapy. I think we can talk a little bit; I really hope we’re going to be able to flesh out side effects of some of these, especially with you, Fatima. I think that’s an important consideration because it’s a different side effect profile where immunotherapy is very effective for those patients, and they may have a genetic syndrome, and that’s an important thing that as a care team between nursing, physicians that we need to make sure to remind ourselves of, that any patient who’s on immunotherapy for colon cancer needs to also undergo genetic testing.

That’s one test, and then the other group of tests is looking for KRAS and BRAF and NRAS mutations. Those mutations, if patients have them, means that they should not get an EGFR inhibitor in their first line of therapy. That’s another key piece of information that we need to know.

The third part of making the decision is around whether or not their cancer is left versus right-sided disease. Patients with left-sided colon cancer that don’t have a mutation in any of these genes like KRAS, NRAS, BRAF, they can get treatment with chemotherapy plus an EGFR inhibitor, but if they have right-sided disease, they also don’t get an EGFR inhibitor. One of the things that is particularly interesting to me is that when we have a patient with left-sided disease and we say, “You have an option between getting the EGFR inhibitor therapy or not,” sometimes patients will choose to not do EGFR inhibitor therapy.

Fatima, could you talk a little bit about that side effect profile that patients experience on chemotherapy with colon cancer; one, if they get the EGFR inhibitor therapy and if they don’t? Just because it’s such an important part of the conversation as patients are making up their mind.

Dr. Youssefi: I think right off the bat, for the patients to understand their disease process. We talk about health literacy; we talk about understanding those terminology. What does that mean to have a right side versus left side? As nurses, some of our role is to reinforce what the providers have talked to the patients about it and the options that they have, as well as reinforcing the adverse effect or side effect that these patients may experience. We know, and I’m just going to use a regimen such as FOLFOX, the long-term impact of the patients, they have a chronic neuropathy. How is that going to impact their life? Also, we talk about the mouth sores. We talk about the fact that these patients have to come for the disconnect of the pump and go home on a pump. All those lifestyle changes that’s involved, it’s extremely important when someone is making a decision to stay on a chemotherapy.

When we talk about EGFR receptors or such things that if they have any underlying, have they disclosed all their medical history to their providers? Because it’s so funny how often in infusion, the patients open up to nurses, and it’s amazing that how much they share some of their other medical comorbidity or anything they may have that they failed to share that with the physician. As a nurse, it’s going to transition that. When we talk about the fact that they may have some high blood pressure when they come for the treatment or passing the protein in urine basically, or when we talk about the immunotherapy; we know immunotherapy has its own set of side effects and how the providers would choose to treat those side effects.

At what point they continue the treatment, where such as when we talk about the rash and diarrhea, and what point is the immunotherapy causing the diarrhea versus actually the disease? It’s just an open dialogue and encouraging your patients to report their symptoms to the providers. As Rachel said, meet them at the goal that they’re at and the expectation that’s realistic. As registered nurses, we don’t go on talking about the prolonged survivals and all those, but we definitely help the patients to make a decision for themselves, open up the information, providing them accurate information to make the right decision for themself.

Dr. Azad: I think that’s a really important point that you brought up and that Rachel mentioned as well, is that it’s very important for patients to know and for us that are taking care of patients to know that when a person is diagnosed with metastatic colorectal cancer, their average life expectancy at the time of diagnosis is 3 years, and they tend to actually do well in terms of quality of life and performance status for most of those 3 years. I think that’s probably a very important consideration as part of a care team and especially for the nurses that are taking care of them in terms of how you talk with them and are realistic with them compared to some of our other cancers that are more difficult and that may not have that same life expectancy. I think that’s a really important point that you bring up.