Tag Archive for: biomarker testing

Thriving With AML | Advice for Setting Goals and Making Treatment Decisions

Thriving With AML | Advice for Setting Goals and Making Treatment Decisions from Patient Empowerment Network on Vimeo.

When facing an acute myeloid leukemia (AML) diagnosis, treatment decisions may feel overwhelming. AML specialist Dr. Alice Mims shares expert guidance for setting treatment goals with your team, advice for making care decisions, and explains how tests results may impact choices.

Dr. Alice Mims is a hematologist specializing in acute and chronic myeloid conditions. Dr. Mims serves as the Acute Leukemia Clinical Research Director at The Ohio State University Comprehensive Cancer Center – James. Learn more about Dr. Mims.

See More from Thrive AML

Related Resources:

Phases of AML Therapy | Understanding Treatment Options

Expert Advice | Managing AML Symptoms and Treatment Side Effects

Stem Cell Transplant for AML | What Patients Should Know


Transcript:

Katherine Banwell:

One part of thriving with AML is finding a treatment approach that manages your disease and fits with your lifestyle. Before we talk about therapy, can you tell us how treatment goals are established for an individual patient? 

Dr. Alice Mims:

Sure. So, for individual patients, I think it’s very important that there is an initial discussion that doesn’t feel too shortened that you can have time with your care team to really go into depth about the diagnosis, about the specifics of your particular subtype of acute myeloid leukemia, understanding the treatment options, and then being given time allowed to reflect on all of that information. So, then you can come back and have your questions better answered that may come from that initial discussion. 

And then help you with your team make a decision based on that information that works best for you.  

Katherine Banwell:

Outside of patient preference, what other factors do you take into account when working with a patient to decide on a treatment plan? 

Dr. Alice Mims:

Sure. So, there are multiple different factors that we try to take into account. Again, yeah, most importantly what patients’ goals are like you mentioned, but those include overall health, including different comorbidities, so what other healthcare diagnoses, medications are you taking, what are the patients’ age, thinking about that for long-term goals, overall support from loved ones, family to — just because care can be really involved. And then in particular, thinking about specific features of that individual patient’s AML, including molecular, genetic features of the leukemia. 

Katherine Banwell:

Well, let’s talk more in depth about the test results you just mentioned. 

What is the test for genetic markers? And how is it conducted? 

Dr. Alice Mims:

So, there are a few different tests that we use under that scope of genetic markers. So, those include looking at chromosomal abnormalities of the DNA. So, with cytogenetics, and then also more specific prose where we call FISH testing. And then also we look for specific gene mutations through next-generation sequencing, or PCR testing. And so, we use all of those results together to give us the most information we can about that individual’s leukemia. 

Katherine Banwell:

How has molecular testing revolutionized AML care? 

Dr. Alice Mims:

Oh gracious. It’s really done such – so much for leukemia. And just things are so different even where they were five years ago because of having molecular mutations, that information available. 

So, it helps with discussing prognosis. So, we know that different molecular features can tell us about curative intent and what are the treatment steps we would need to take to give the best chance long-term. And then also now, we’ve evolved to where we have directed therapies that can target mutations or the proteins that arise from those mutations with therapeutic options. 

Katherine Banwell:

Is this testing standard following an AML diagnosis? 

Dr. Alice Mims:

It is standard following an AML diagnosis. That’s recommended within all of the guidelines with patients and really should be done for all patients at initial diagnosis. 

Katherine Banwell:

Can genetic markers or mutations change over time? For example, if a patient relapses, should molecular testing be done again? 

Dr. Alice Mims:

Yes, absolutely. Mutations can evolve. It’s something we call clonal evolution of the leukemia. 

And so you can have mutations that could be present at diagnosis that may no longer be present. Or the opposite can occur where you have new mutations that can appear. And that can lead to different options for treatment. So, it’s very important to retest at time of relapse.  

Katherine Banwell:

What advice do you have for patients who want to ensure that they’ve actually undergone molecular testing? What questions should they be asking their healthcare team? 

Dr. Alice Mims:

I think it’s definitely important to bring this up with the healthcare team. And it should be something at diagnosis and relapse to ask, what are the cytogenetics, what do they look like now, what do the gene mutations, and really as mentioned before, it’s so crucial in talking about prognosis, talking about treatment options that if it doesn’t come up, it’s really something that you should take a pause and try to go back to readdress with your team.  

Why Test Results Matter | Accessing Personalized Non-Small Cell Lung Cancer Treatment

Why Test Results Matter | Accessing Personalized Non-Small Cell Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

Can test results affect non-small cell lung cancer treatment options? Dr. Erin Schenk reviews essential lung cancer testing, discusses how the results may influence treatment approaches, and explains why it’s important for patients to take an active role in their care and treatment choices.

Dr. Erin Schenk is a medical oncologist, lung cancer researcher, and assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center.

Download Program Resource Guide

See More From INSIST! Lung Cancer

Related Resources:

An Expert Explains Predictive Biomarker Testing for Lung Cancer

An Expert Explains Predictive Biomarker Testing for Lung Cancer

Advances in Non-Small Cell Lung Cancer Testing

Advances in Non-Small Cell Lung Cancer Testing

What Biomarkers Affect Lung Cancer Care and Treatment

What Biomarkers Affect Lung Cancer Care and Treatment?


Transcript:

Katherine Banwell:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss the latest advances in lung cancer including the role of genetic testing and how this may affect treatment options. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Erin Schenk. Dr. Schenk, welcome, would you please introduce yourself? 

Dr. Erin Schenk:

And thanks so much, Katherine. I’m Dr. Erin Schenk. I’m a medical oncologist at the University of Colorado and I have a great position where I’m able to take care of patients with lung cancer in the clinic and also, do laboratory-based research on new and different therapies for lung cancer. Thanks so much for having me. 

Katherine Banwell:

That’s so great. Oh, I’m so glad you were able to join us today. Because this program is part of our Insist series which empowers patients to insist on better care. Can you tell us why you think it’s important for patients to speak up and engage in their lung cancer care decisions?  

Dr. Erin Schenk:

Absolutely, and I think as a physician it’s important not only to partner with patients but as well as their loved ones and their caregivers who help navigate this diagnosis of lung cancer. There are some diagnoses in the world, cancer being one of them and lung cancer especially that can turn everything upside down. So, it completely changes your world. Suddenly the life as you’ve been living it, the plans you had they all have to be paused or halted in some way to get care for the lung cancer diagnosis.  

One of the – and one of the really hopeful parts about being a doctor who cares for patients with lung cancer is just the speed of the advancements and the speed of the changes in the treatment options that we have for patients diagnosed with really any type of lung cancer.  

And so, I think it’s really important when you’re meeting with your team and you’re talking with your cancer doctor to really try to understand what is the information that they use to make some of these decisions or referrals on your behalf? And also, think about, is there an opportunity for me to get another opinion about what might be the best options? 

Katherine Banwell:

Thank you for that Dr. Schenk, that’s helpful as we begin our discussion today. I’d like to start with some basics. What are the various subtypes of lung cancer, and how are they identified?  

Dr. Erin Schenk:

Absolutely. So, there are a number of different subtypes of lung cancer that are important for us to identify, because it helps to stratify or helps to select the right treatment approaches for a patient. So, usually when someone is diagnosed with lung cancer there was a scan done at some point that noticed a mass or masses in the body. 

What happens next is a biopsy happens where a needle is used to sample the tissue, and that could be in the lung, that could be in lymph nodes or other parts of the body and that tissue that’s sampled is first sent to my colleagues in pathology.  

And they’re a group of doctors who look at tissues underneath the microscope and try to identify what those are. And based on that initial pathology analysis, we can identify usually pretty straightforward, what is the type of cancer that they see under the microscope.  

And so, in very general terms there are non-small cell lung cancers, there is a group called small cell lung cancers, and there’s also a group called neuroendocrine cancers as well. Oftentimes, times we’re able to differentiate these types of tumors, these types of lung cancers based on how different markers show up, and these are called stains. 

And these stains can differentiate non-small cell between adenocarcinoma versus squamous cell carcinoma. And then they can also help differentiate small cell lung cancer. And then, of course, they can also help to identify if this is a neuroendocrine tumor. 

Katherine Banwell:

Okay. Thank you so much for explaining that. Today we’re going to focus on non-small cell lung cancer. Are there specific tests that patients should ask their doctor for following a diagnosis?  

Dr. Erin Schenk:

Absolutely, and I think it’s sometimes helpful to understand what are all the pieces of information I need when I first meet a patient to make decisions about treatments? So, we just went over the histology or another word, the pathology, what does the cancer look like underneath – under the microscope? That can help and that’s one of the pieces, understanding what type of non-small cell lung cancer is present. 

Additional information that’s needed includes certain tests, and you might hear say like, molecular testing or sequencing. Those pieces of information can be really important for treatment selection. So, whether there’s a diagnosis of adenocarcinoma or squamous cell lung cancer, we always try to know the PD-L1 status. And that’s actually a surface marker that’s present on the outside of the cancer cells and is able to help us select immunotherapy treatments as appropriate.  

Oftentimes, patients with lung adenocarcinoma will get further sequencing of the tumor itself. And again, you might hear of this called molecular testing or next-generation sequencing, NGS. There are a lot of terms we use for it, but fundamentally, what we’re trying to do is understand the vulnerabilities of the cancer cells. 

And these vulnerabilities can be identified by these molecular tests. They often are able to recognize mutations or fusions or genetic changes within the cancer cells that are present. This is critically important, because we have a whole number of oral targeted therapies that can go after these mutations or alterations, and in other words, they go after the vulnerability in the cancer cells. That’s the adenocarcinoma histology.  

That’s the majority of non-small cell lung cancer diagnoses but I think also if you have been told your diagnosis is of squamous lung cancer, classically we don’t often think of those driver alterations or those fusions or mutations that I just spoke about. But I think it’s also quite important for patients in that situation to also undergo molecular testing.   

As we learn more and more, sometimes those squamous lung cancers can also bear those same alterations. Not to the same frequency, but they can be present, and I think it’s important as you’re thinking about a patient to try to understand what are all the tools I have for them to do that sequencing just to make sure you’re not missing something. So, that’s a really in-depth look to molecular testing.  

I’d like to transition to some of the other tests that would be necessary to help put that molecular testing in context. Another important piece is something called staging. And staging is a way to determine if the lung cancer has traveled elsewhere in the body.  

Sometimes it can be involved in the lymph nodes of the middle of the chest. Sometimes it can go outside the chest. For example, to the bones or the liver or the brain, and understanding that information, understanding that lay of the land before we start treatment, is really important, not only for treatment selection, like the treatments, the medicines I would give as a medical oncologist.  

But also, in thinking about which other colleagues of mine who help take care of patients with lung cancer should I also involve in some of these treatment decisions. So, staging can often involve CT scans of the chest, abdomen, pelvis. A PET scan can be done. As well as an MRI of the brain. 

Katherine Banwell:

Dr. Schenk, I just want to confirm that you’ve been speaking about molecular testing, that’s the same as biomarker testing, right?  

Dr. Erin Schenk:

Exactly. Exactly.  

Katherine Banwell:

And how is it performed? 

Dr. Erin Schenk:

So, biomarker testing, molecular testing, NGS, there’s a whole range of synonyms we use, that is done primarily on the tumor tissue.   

So, the first test that usually comes back is a marker on the cancer cell. 

That’s PD-L1. That is an IHC test that is able to be done pretty quickly and we’re able to have a turnaround time of just a few days to understand that first biomarker. But the PD-L1 status does not make sense unless we have all of the other information to get the best context, the best understanding of the tumor and what drives the tumor. That additional testing is actually the next-generation sequencing where the genetic material of cancer cells, the DNA and RNA is sequenced in a laboratory to look for those mutations or fusions or other alterations that can drive the cancer cells. And again, it helps me identify additional vulnerabilities in the cancer cells to allow me to pick the optimal therapy for the patient in front of me. 

The tissue testing is the gold standard and we try to get all of our answers from the tissue. Sometimes we’re also able to get additional information from the blood, and that’s what’s called a liquid biopsy. Cancer cells – in some patients, cancer cells shed their genetic material into the bloodstream.  

And these specialized tests are able to pick up that genetic material, have the sequencing done on that, and then report back to me about what may or may not be found.  

Now, as I mentioned, not all of lung cancers shed this information into the blood, so it’s not – if the blood does not reveal an answer or information, that’s – we still need to look closer at the tissue, but occasionally if the blood reveals certain alterations, that can be acted upon, and we don’t have to wait for the tissue testing. 

I think one of the challenges that I absolutely sympathize with their biomarker or molecular testing is that it can take a series of weeks to really get all of the information necessary to make the best choice for the patient in front of us.  

And I have a saying I like to share with patients that is really important and I think really fundamental to the treatment choices for patients with lung cancer and that is, it’s better to get started on the right treatment rather than the fast one, and that’s true. We know through a series of clinical trials that if I were to start a patient on a treatment that wasn’t appropriate to their biomarkers I actually hurt them. So, I actually reduce how well their later therapies will work. 

And so, it’s a tough wait and I anxiously wait with all of my patients but it’s a really important – it’s really important to get all of that information together. 

Katherine Banwell:

Well, would the cancer change dramatically over a period of three or four weeks? 

Dr. Erin Schenk:

That’s it, you know, that’s a question I hear a lot from patients, and, again, to empathize with the agony of waiting, it’s hard to wait but I can tell you as a doctor who’s taken care of many, many patients with lung cancer the weeks do not make a difference in terms of will have – will it hurt me? So, it will not in general it does not hurt to wait. It’s better to get started on the right treatment because the right treatment has the highest chance of being effective. 

So, the two to three weeks very rarely in my experience has that changed a situation for a patient, but that’s also why we frequently do the liquid biopsy testing at the same time as the tissue testing, because we too want to try to get the answer as quick as possible. So, we try to exhaust all of the routes that we have to get the answer that we need for our patients. 

Katherine Banwell:

What about the latest advances, is there anything in lung cancer testing that patients should know about? 

Dr. Erin Schenk:

Yes, absolutely. I think more and more we’re using these liquid biopsies in different situations for patients with lung cancer. So, Katherine, you and I have mostly been talking about patients who’ve been diagnosed with metastatic disease or a disease that’s been spread outside of the lungs. The liquid biopsy testing, though we’re starting to use in patients who have tumors we can remove with surgery or tumors we can try to cure with a combination of chemotherapy and radiation therapy. 

And we’re using more as a marker of response, and what I mean by that is let’s say someone with a cancer that can be surgically resected or removed by surgery, we can check their liquid biopsy. And if we see a marker in their liquid biopsy, we can then follow that over time in conjunction with scans to try to understand is the cancer – you know, with all the information we can, is the cancer completely gone or are we starting to see that marker again? Do we need to think about doing different scans or different tests to look for a potential area of recurrence of the cancer? 

Katherine Banwell:

What sort of questions should patients be asking about their test results? 

Dr. Erin Schenk:

I think the primary question is “Have you sent my tissue for biomarker testing?” 

And this is true – in my opinion, this is true regardless of the stage of diagnosis, again in the non-small cell lung cancer space, and that’s because we are starting to use some of our targeted therapies as well as our immunotherapies in patients with cancer that can be resected by surgery or maybe would get chemotherapy and radiation therapy. So, these biomarkers are also important in that decision-making for patients that have an earlier stage of disease. And so, I think the first question is, “Has my tissue been sent for biomarker testing?” because I think that’s a part as a necessary part of care given the advances that we’ve made.  

That’s the first question, two, “When do you expect the results? When did it get sent off?” and then three, you know once that has been sent off and whether that’s tissue testing, liquid biopsy, or both, talking with your doctor and your team about what it means.  

How they incorporate this data into your treatment decisions, and then occasionally, asking about did they get all the information they need? Because while we’ve been able to do this biomarker testing for lung cancer for years now, you know, no test is perfect and sometimes cancer cells aren’t the best material to start with when you’re trying to get a really definitive answer.  

So, occasionally patients might need to be biopsied again to really and truly get the full spectrum of information necessary prior to making treatment decisions.  

Katherine Banwell:

Yeah, great suggestions. Great ideas, thank you. We’re hearing the term personalized medicine a lot these days. Would you define the term for our audience? 

Dr. Erin Schenk:

Absolutely, and I think the treatment of non-small cell lung cancer is one of the poster childs for children – for personalized medicine because based on the result of the biomarker testing that’s what drives my choice of therapy because the biomarkers help to tell me what is this cancer most likely to be vulnerable to and that in my mind that’s a wonderful application of the promise of personalized medicine.   

Katherine Banwell:

Okay. Let’s move on to treatment now, Dr. Schenk. Would you walk us through the current treatments being used to treat non-small cell lung cancer? 

Dr. Erin Schenk:

Absolutely, and there are a broad range of options, and thankfully we have so many choices in how to best help patients. And it’s often why visiting with a center that sees a lot of patients with lung cancer can be beneficial so that you have all of the parties at the table that need to be there as we’re making these treatment decisions. So, I would start thinking about patients with early-stage disease. Often surgery if tumors are small enough and there’s not you know, no lymph nodes are involved with the cancer and it’s not anywhere else.  

Sometimes surgery is all that patients might need in terms of their treatment. Those are for patients with smaller tumors and really early-stage disease. As we move forward in the stages, meaning going from stage one to stage two, so a little bit bigger of a tumor, lymph nodes might be involved.  

That’s when really the multi-disciplinary approach happens, and what I mean by that is for example, at my institution where people like me, medical oncologists, radiation oncologists, and surgeons all sit down together to talk about a patient, their scans, you know, what is their health status, what is their biomarker testing, to try to come together to form a treatment approach. And so, at our institution, you know, frequently in stage two to stage three tumors based on biomarker testing we either select upfront surgery followed by chemotherapy followed by sometimes targeted therapies or TKIs.  

Those are the medicines, the TKI, those are the medicines that are really dependent on the presence of biomarker testing. So, the biomarkers often tell us for example if there’s an EGFR mutation. If that’s present then I would use an EGFR TKI, for example. 

But if those biomarkers don’t show a alteration where I have TKI to use, then we frequently are giving patients chemotherapy plus immunotherapy before surgery. This approach is called a neoadjuvant chemoimmunotherapy approach, and it’s one of the newer changes to lung cancer care within the past year that I think really is going to have a positive impact on outcomes for patients with lung cancer.   

So, just again in broad strokes, and then as we move into stage three patients where we can’t resect the tumor, that’s where we give chemotherapy medicines plus radiation therapy. Oftentimes followed by immunotherapy and then when patients have disease that spread outside of the chest, outside of the lungs, the metastatic setting or stage IV, that’s when we think about the whole host of therapies available through medical oncology, systemic therapies is another way to call them.  

And there we think about immunotherapy-based treatments plus or minus chemotherapy or we think about targeted therapy-based approaches with those TKIs. And again, it’s all based on those molecular markers, those biomarkers. 

Katherine Banwell:

Do clinical trials play a role in lung cancer treatment? 

Dr. Erin Schenk:

Clinical trials are incredibly important for the treatment of lung cancer. These are the tests and the procedures that we do that have continuously advanced our ability to care for patients with lung cancer. You know, it was clinical trial data that helped us get alerted to doing chemotherapy and immunotherapy before surgery really can help patients do better. And similarly, clinical trials have helped us define when do we use TKIs or targeted therapies. 

So, I think that’s another great question to ask your team of, “Based on all of the information you know about me and my cancer are there clinical trials options that are available here where I’m at or ones that are really interesting or appealing elsewhere that might be worthwhile for me to consider?” So, clinical trials are a critical part of how we help patients do better.  

Katherine Banwell:

Personalizing therapy involves taking into account a number of patient factors. What should be considered when deciding on a treatment regimen for a given patient?   

Dr. Erin Schenk:

Yes. That’s a great question and one that is really important in formulating a treatment plan. So, some patients because of their health status, for example, aren’t able to undergo surgery, and that happens. And so, occasionally sort of their health status maybe their lungs don’t work as well as they used to or the heart doesn’t pump as well as it used to. 

You know, those sorts of health concerns can help us tailor and personalize treatments to what would be the most – the safest but also the most effective approach. Occasionally patients have another long-term chronic disease where using immunotherapy might be more dangerous than helpful because they’re sometimes autoimmune diseases.  

Especially ones that affect the brain, so for example multiple sclerosis can be one of those or disease that affect the lungs, you know, interstitial lung diseases. Those would put a patient at great risk of receiving immunotherapy, but outside of the health status, it’s also important I think to talk about what your preferences are as a patient as well.  

Because sometimes we will come to you and say, “Here are these multiple different choices and what’s important to you or maybe what you’re worried about or what you’re concerned about are considerations that we want to hear about and understand so that we can talk you through the process and help make some of these decisions.” You know, for example, if you’re receiving chemotherapy plus radiation together for your cancer care that can be a huge time commitment.  

What I mean by that is when patients get radiation in certain circumstances, that can be once a day every day, Monday through Friday for six weeks at a time and sometimes patients have challenges with transportation. Or sometimes they have you know, challenges balancing a job or childcare or other things like that. So, these are all part of the – just part of bringing it all together and putting together a treatment plan that makes sense for what we understand about the lung cancer itself, but also what we understand about you as our patient. 

You know, how can we make changes or make suggestions that would best fit for you and your needs? 

Katherine Banwell:

You’ve brought up some really good points and of course, patients should be involved in these decisions. If a patient is feeling uncomfortable with their care plan, why do you think it’s important for them to speak up? 

Dr. Erin Schenk:

In my experience, when people are worried about certain things or they say they definitely don’t want this therapy it’s because they have seen other loved ones or family members suffer because of that particular type of treatment in the past. And I think bringing up those concerns can be helpful for me as someone’s doctor to talk them through, okay, this is what chemotherapy looks like. This is what we do to help reduce your side effects.  

These are the resources we have to support you through treatment if any of these side effects come about and I think I also impress upon them that receiving treatment is ultimately their decision now. My bias of course, I think we can help patients quite a bit with their treatments, but I think it’s also important to recognize you know, they have autonomy to say no at any point in time. And I think just acknowledging those fears, acknowledging those concerns, putting together a plan you know, before any of those potential worrisome side effects happen can be really powerful to help reduce some of the stress and worry around treatment. 

Katherine Banwell:

Dr. Schenk, when should patients consider a second opinion or even consulting a specialist? 

Dr. Erin Schenk:

I think any time it’s appropriate. We – at our institution, we’re one of the main lung cancer centers that – you know, within several hundred miles, so we frequently see patients and sometimes it’s just to check in and say you know, the patient says, “Here’s what my team has started me on. You know, what do you think should be the next approach?” and we talk about that, but really anytime I think is appropriate for reaching out for another set of eyes to look at things. I would say perhaps some of those most critical times would be prior to treatment starts especially if – yeah, I would say prior to starting a treatment with that new diagnosis.  

That would be a really critical time because often again, sometimes once we start down a treatment path, we’re in some ways we’re committed, but if that maybe isn’t the optimal treatment path based on, you know, the tumor and the biomarkers and the patient preference starting on that less optimal treatment path could potentially hurt patients in the long run. So, I would say at – you know, potentially at diagnosis when a treatment course is recommended and then if there is a need to change treatments.  

So, for example, especially in the metastatic setting there are certain therapies widely available. People are very familiar with them, can start them no problem, but when those treatments stop being beneficial that might be a time to also meet with a specialist or go to a lung cancer center of excellence to get their opinions on what to do next.  

Katherine Banwell:

You know, one thing patients are often concerned about is the financial aspect, the financial burden that is involved in their treatment care. How do they deal with that? Are there resources available for them? 

Dr. Erin Schenk:

There can be and this definitely can vary based on what treatment you’re being given and where you are, at what institution and what state you’re being treated at since resources are different. But for example, the targeted therapies or the TKIs I made reference to earlier, those can have some significant out-of-pocket costs and most of the,  if not all of the manufacturers of those various TKIs have patient assistance programs that help to reduce the out-of-pocket costs for those specific medicines.  

When I prescribe a TKI for a patient often what’s part of that is a prior authorization to try to understand what’s the out-of-pocket cost for the patient and then kind of get on top of whether or not we need to apply for patient assistance to help pay for the cost of that medication. So, that’s one way that we can help. 

I think, in again, this is specific to my institution and our clinical practice, but we often have – we work very closely with other cancer doctors in the community. So, if traveling to our site is a major burden we can usually have them visit with a oncologist who’s close to them so there’s less travel, there’s less costs in you know gas and staying somewhere. But they still can be connected with us. So, while they can get most of their care under a doctor that’s closer to them, every so often they come back and see me and just talk about how things are going and what you know might be worthwhile to consider down the road.  

And I would also recommend that if there are other costs or concerns you know, kind of above and beyond these things that we’ve touched on, connecting with a social worker through the cancer center can be helpful in dealing with paperwork for disability or retirement or sometimes connecting to resources if there’s a childcare need. 

Or you’re caring for a spouse and you need additional help at home. You know all of the different burdens that are present in life that just get magnified with a cancer diagnosis and you know, we can – there’s usually a really big attempt to try to find a way to help figure out navigating those so that you can get the care you need.  

Katherine Banwell:

Yeah. Before we close, Dr. Schenk, I’d like to get your final thoughts. What would you like to leave the audience with? Are you hopeful? 

Dr. Erin Schenk:

Yes. There are tremendous – there has been tremendous growth and change in the practice in how we treat patients with lung cancer, even just in the past handful of years and it’s made marked improvements in how well people do and for how long they do well. 

And that – you know that trajectory I anticipate continuing based on the clinical trials I’ve been involved with as well as the data I hear about from other clinical trials thinking about new and different medicines that we could use in the diagnosis of lung cancer. As well as applying some of the medicines we already have in different ways and different situations you know, to help better control the cancer or help even increase the cure rate in certain situations.  

So, I think there are a number of reasons to be hopeful and if you visit with your team of doctors and that you don’t get that sense of hope or you don’t hear about all the different ways that they can help you, you know that might be a time to really think about, “Perhaps I need to get a second opinion and hear about some of these developments or some these other ways that potentially I could be treated with my new diagnosis of lung cancer.”   

So, I think there are a lot of reasons to be hopeful. Lung cancer, of course, is still a serious life-changing diagnosis, but there are ways we can help regardless of what the stage is or where you’re at in life. I think there are opportunities for us to still help you. 

Katherine Banwell:

It sounds promising, Dr. Schenk. Thank you so much for taking the time to join us today. 

Dr. Erin Schenk:

Absolutely. Thank you for the invitation.  

Katherine Banwell:

And thank you to all of our partners. To learn more about lung cancer and to access tools to help you become a proactive patient visit powerfulpatients.org.  

I’m Katherine Banwell, thanks for being with us today.   

Empowering Providers to Empower Lung Cancer Patients

Empowering patients is at the heart of efforts at Patient Empowerment Network (PEN), and work toward reducing health disparities is part of conversations among healthcare professionals. Precision medicine and the use of biomarker testing is one area of interest in efforts to eliminate healthcare disparities

With this in mind, PEN has taken on a new initiative, the Empowering Providers to Empower Patients (EPEP) initiative. Starting in lung cancer, the program expands PEN’s reach to healthcare professionals with the goal of improving physician-patient communication; shared decision-making; and the role that lung cancer patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.

The EPEP initiative includes the following resources:

  • Needs Assessment outlines key factors that enable patient empowerment, attributes of an empowered patient, and advice for healthcare professionals to perform a needs assessment for each patient.
  • EPEP Roundtables with lung cancer experts Dr. Heather Wakelee, Dr. Lyudmila Bazhenova, Dr. Leigh Boehmer and Dr. Jessica Bauman as they discuss a range of topics including ways to improve physician-patient communication, learnings from tumor boards, collaboration between academic and community oncologists, biomarker testing, and addressing barriers to biomarker testing.
  • EPEP Vignettes where lung cancer clinician Dr. Jhanelle Gray from Moffitt Cancer Center shares her experience in biomarker testing, personalized combination therapeutics, and best practices in treating and empowering patients toward more equitable and culturally sensitive care.
  • EPEP Biomarker Testing Resource Guide that covers benefits of biomarker testing, when to test, dos and don’ts of biomarker testing, perspectives from a patient and a clinician, and resources for patients.
  • EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources. PEN delivers a curated PDF according to your interests and delivers it efficiently to your inbox.
  • Infographics that address the differences between cultural competence versus cultural humility and key steps to work toward practicing cultural humility to help empower your patients in their lung cancer care.

Dr. Jhanelle Gray quote

Key Takeaways to Help Empower Lung Cancer Patients

PEN had the opportunity to interview experts Dr. Jhanelle Gray, Dr. Heather Wakelee, and Dr. Leigh Boehmer to learn about some of their expertise. They shared their perspectives about vital ways that they work with patients to help empower them and to work toward the best personalized care for each patient.

Dr. Boehmer shared the importance of biomarker testing to identify driver mutations, “…more than half of patients who’ve developed lung cancer who have never smoked or have a light smoking history are going to have an actionable driving mutation, and even in people who do have a smoking history, of any ethnic background, they’re still 10 to 20 percent or maybe more as we identify more of these driver mutations, where that’s what’s really the force in the tumor.

And if you find it and you can start someone on the appropriate targeted therapy, usually across multiple trials, the toxicity is less than you would get with chemotherapy or immunotherapy…the probability of response is over half, you know, if someone’s going to have a benefit that that’s going to help them feel better for a period of time in controlling their cancer, it really drastically changes their whole tumor outcome, they’re going to be living longer, feeling better, and ultimately that’s our goal when we’re helping someone with metastatic disease…You have to have the physician aware of the importance of finding the mutation, altering the treatment as necessary, and giving that patient the best possible option for care.

Dr. Gray and Dr. Boehmer also have preferred medical terms when they explain to their patients about biomarker testing. Dr. Gray prefers to steer away from terms that have to do with genomics or genetics and uses the terms “biomarker testing” or “comprehensive biomarker testing” instead. While Dr. Boehmer shares, “I think that’s really important that people always remember to talk about the tumor and not about the mutation in the person, that’s really, really critical.

Physician Best Practices for Biomarker Testing

With her experience in using biomarker testing in planning personalized combination therapeutics, Dr. Gray shares advice for other healthcare providers. “I think for a provider it is going to be very important when a patient is newly diagnosed with non-small cell lung care especially when they have advanced and later stages as this should be a comprehensive test. This should be a certified assay. I think they should also look at turnaround time for this testing, does the assay include a liquid biopsy portion and a tissue biopsy portion? Is there one that you want to run before the other?

Many times what I will do when I meet a patient initially and they have an advanced or metastatic stage non-small cell lung cancer, I’ll send off the liquid biopsy right then and there, the same day in the hope that I can get the test results back within 7 to 10 days. I will also order the tissue testing. Should the liquid biopsy results from the blood specimen come back sooner, then I can cancel the tissue testing if I feel confident enough in the results. This will then preserve tissue for later analyses. It can also preserve tissue should they need to enroll in an innovative clinical trial and expand their therapeutic options.”

HCP Roundtable

Advocacy for Biomarker Testing

Dr. Wakelee speaks to advocacy for biomarker testing, “…many organizations, including IASLC, including ACCC, including NCCN…I mean, you could name any organization that’s involved in cancer care and education, is really focusing on this issue of making sure that every oncologist knows the importance of doing biomarker testing for patients with non-small cell lung cancer, that we are trying to expand that not just to the oncologist, but also to the folks making the diagnosis, so they can be aware as well…The more people who are aware that’s a standard of care in treating lung cancer, the more that’s going to happen, and then continuing to explore those financial barriers, and as more agents are FDA-approved, where that becomes a preferred first sign option, but you only know that if the testing’s happened, that leads to campaigning to make sure that the testing is being covered as well.”

Dr. Boehmer further explains about the logistics of advocating for biomarker testing. “ACCC…recognizes that a lot of community programs don’t have kind of operational best practices for how to incorporate biomarker testing into a patient’s journey…we’re working on creating care pathways which will help multidisciplinary clinician teams integrate discussions of biomarker testing and its impact at various critical time points along a patient’s diagnosis to treatment, to survivorship or end-of-life care…talking about when and how to have meaningful conversations, and then doing it with health-literate, vetted resources and through a lens of equity and shared decision-making, because you look like me, you had success with it. I’m going to do it for my at-risk patients as well, because one, it’s the right thing to do. And two, you taught me how to do it, and three, you told me what success looks like so I can measure myself against you, and that’s a successful model for scalability.”

And Dr. Gray shares advocacy organizations and ways to move toward biomarker testing equity for all patients. “For those again who are having some difficulty with getting biomarker testing for their patients, I would strongly encourage you to find an advocacy organization such as American Lung Association, LUNGevity, GO2 Foundation, there are many many others out there that are very much interested in improving access to patients with non-small cell lung cancer. This is really a critical area of need and that we really have to drive forward with healthcare equity in this setting…And so, I think putting all this together and coming together as a field is where we can move together and with the patients, the providers, and the advocacy organizations I think that we should all feel empowered to move the needle forward for our patients.”

The bottom line is, while oncologists have more tools to treat lung cancer, access and language remains a big factor in biomarker testing. Comprehensive biomarker testing can play a very important role in the personalized treatment for patients with non-small cell lung cancer (NSCLC), but many questions remain. How do we improve clinician-patient conversations in biomarker testing? And how do we remove barriers that can impede an HCP’s ability to treat patients with personalized care? As the lung cancer field continues to experience tremendous growth in precision medicine, we hope healthcare providers can take advantage of these timely resources of the EPEP initiative to work toward equitable and culturally sensitive care for lung cancer patients. 

Download Resource Guide

How Can You Access Personalized Medicine for Gastric Cancer?

How Can You Access Personalized Medicine for Gastric Cancer? from Patient Empowerment Network on Vimeo.

What is the right therapy for your gastric cancer? This animated video reviews treatment decision considerations, how results of essential testing may impact therapy, and advice for engaging in your gastric cancer care. 

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How Do Biomarker Test Results Impact a Gastric Cancer Treatment Plan?


Transcript:

Advances in gastric cancer research are leading to more targeted treatments and giving patients access to personalized care. Personalized medicine – or precision medicine – is a type of care that is based on the genetic makeup and individual characteristics of your disease.  

Biomarker testing identifies key markers such as genes, proteins, or other molecules in a sample of tissue, blood, or other bodily fluid. The test results help the healthcare team better understand your cancer and may influence treatment options – leading to more tailored options with potentially fewer side effects.  

For example, if the PD-L1 receptor is detected during biomarker testing, you may benefit from immunotherapy. The tumor’s HER-2 status or mismatch repair protein expression status may indicate that you may respond well to a targeted therapy. And, treatment targets continue to be identified as research moves forward.  

When deciding on a treatment approach, physicians may consider factors such as: 

  • Your age, overall health, and any pre-existing conditions. 
  • Your type and stage of gastric cancer. 
  • And your test results, including biomarker testing. 

So, how can you partner with your doctor to guide a personalized treatment approach for YOUR gastric cancer? 

  • First, seek a gastric cancer specialist to lead your care. A second opinion consultation with a specialist can confirm your diagnosis and treatment plan. 
  • Ask your doctor if you have had, or will receive, all essential testing, including biomarker testing, and discuss if there are any markers that impact your risk, prognosis, or treatment options.  
  • Inquire about clinical trial options suited to your specific cancer and biomarker test results. 
  • Discuss the potential side effects of each treatment option and ask if any of your existing health conditions may impact your choices. 
  • Include a care partner, such as a friend or loved one – someone you trust – in discussions, so you can feel confident in your decisions.  
  • And finally, always speak up and ask questions. Remember, you have a voice in YOUR gastric cancer care. 

To learn more about your gastric cancer and to access tools for self-advocacy, visit powerfulpatients.org/gastric.  

How Do Biomarker Test Results Impact a Gastric Cancer Treatment Plan?

How Do Biomarker Test Results Impact a Gastric Cancer Treatment Plan? from Patient Empowerment Network on Vimeo.

What impact do biomarker test results have on gastric cancer care? Expert Dr. Matthew Strickland explains how the identification of biomarkers affect treatment choices and why patients should insist on this essential testing. 

Dr. Matthew Strickland is a medical oncologist at Massachusetts General Hospital. Learn more about Dr. Strickland.

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Should Gastric Cancer Patients Be Treated Immediately?


Transcript:

Katherine Banwell:

Dr. Strickland, how do biomarker test results impact gastric cancer prognosis?  

Dr. Matthew Strickland:

So, biomarkers will directly guide our treatment decisions in how we can assemble the best treatment plan for our patient as an individual. That will have direct ramifications for how well and for how long that therapy can work for.  

So, I would say that there’s a direct correlation between the biomarker analysis to prognosis.  

Katherine Banwell:

Dr. Strickland, how do biomarker test results impact gastric cancer treatment options?  

Dr. Matthew Strickland:

So, for example, depending on the stage…if a patient has a stage IV cancer, PD-L1 expression will guide our treatment decision whether to include immunotherapy typically with a chemotherapy background or not. To say that a different way, if the expression is very low or absent, we know that patient likely will not benefit from immunotherapy and could actually be harmed, because there is some toxicity that comes with these treatments. That’s one example. But similarly for HER2+ patients, we’ll similarly assemble a treatment regimen with a targeted therapy that is included.  

That certainly guides treatment options, specifically based on a HER2-positive result or negative. The next biomarker I want everyone to know about is called PD-L1. That stands for programmed death ligand 1. This is also a protein that’s expressed on the surface of cancer cells.  

That usually leads to a better outcome than for patients that we can’t include a targeted therapy and left relying on chemotherapy only.  

Katherine Banwell:

Dr. Strickland, what questions should patients ask their healthcare team about testing and test results?  

Dr. Matthew Strickland:

Because biomarker status is so critical for treatment decisions and leading to outcomes and prognosis, I would encourage patients to ask their provider if all standard biomarkers have been obtained at the time of their diagnosis. Sometimes that answer is no, but they’re working on it. That’s okay. But I would highly encourage patients to just ensure that standard biomarkers are being tested for, that they will directly guide the treatment recommendations.  

Katherine Banwell:

Dr. Strickland, is there developing research or treatment news that gastric cancer patients should know about?  

Dr. Matthew Strickland:

I think it’s a very exciting time for the treatment of gastric cancer. Now, we still have a lot of work to do. I don’t want to minimize. This is still a tough and can be an aggressive cancer. It’s no time to let up.   

That being said, if we use immunotherapy as an example alone, there’s been a flurry of new approvals for standard of care in the last three to four years. Our understanding is only increasing of how to select the right patients that will benefit as well as how to avoid some of the toxicities. Beyond immunotherapy, there are new and emerging targets that we can design targeted therapy for.  

We don’t yet have mainstream approvals for targets like Claudin 18.2. But this is a very exciting new target that I think will lead to an approval in the short future.  

How Is Gastric Cancer Biomarker Testing Conducted?

How Is Gastric Cancer Biomarker Testing Conducted? from Patient Empowerment Network on Vimeo.

Biomarker testing is essential for gastric cancer patients, but how is it conducted? Expert Dr. Matthew Strickland explains the methods of biomarker testing and the common biomarkers associated with gastric cancer.

Dr. Matthew Strickland is a medical oncologist at Massachusetts General Hospital. Learn more about Dr. Strickland.

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Transcript:

Katherine Banwell:

So, how is biomarker testing conducted? Is it via a blood test?  

Dr. Matthew Strickland:

This is also an excellent question. Biomarkers can often be tested in different ways. Most of the biomarkers that I’ve outlined start by being tested via cell surface expression of those proteins. Basically, that translates to once the biopsy of the tumor is taken out and is now in the pathology lab, a pathologist can apply different stains to identify these proteins and biomarkers.  

Then, they can assess, in other words, quantify the level of expression. This method is called immunohistochemistry. I would say it’s a fair statement to think this is a first pass method of detecting biomarkers.  

But it’s not the only one. Beyond that…there’s, for example, HER2 can sometimes reflex to assessing the copy number of the gene. So, we’re no longer talking at the protein level. Right now, we’re talking about using a method…the acronym is FISH, which stands for fluorescence in situ hybridization. This is a method to quantify the number of copies of the gene.  

If the cancer has indeed overexpressed HER2 to gain a growth advantage, then often we’ll see a very significantly high copy number. Then, to address your question regarding biomarkers detected in the blood, this is also a new area, relatively new. We know that there are fairly effective tools to test for circulating tumor DNA.   

Backing up for a moment, cancer cells can – let me rephrase. Cancer cells will to some degree shed their DNA into the bloodstream. We are able to detect that unique DNA to some degree. So, these tools, which are generally called circulating tumor DNA assays, there are different companies. The names of their products can be different. But they’re becoming increasingly effective at detecting tumor DNA in the blood.  

So, there are several approvals for these tools. But this can get a little bit tricky. Because the tools are so new, they’re not yet integrated into our standard management. So, perhaps, at larger cancer centers you might see providers utilizing these tools, but it might not be offered at every location.  

Essential Testing Following a Gastric Cancer Diagnosis

Essential Testing Following a Gastric Cancer Diagnosis from Patient Empowerment Network on Vimeo.

What testing should newly diagnosed gastric cancer patients undergo? Expert Dr. Matthew Strickland discusses what is analyzed in biomarker testing and how immunotherapy works against cancer.

Dr. Matthew Strickland is a medical oncologist at Massachusetts General Hospital. Learn more about Dr. Strickland.

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Transcript:

Katherine Banwell:

Dr. Strickland, what biomarker testing is standard following a gastric cancer diagnosis?  

Dr. Matthew Strickland:

This is a very active area both for approved targets as well as from a research side of things. We’re trying to discover new biomarkers. I think it’s a critically important question. There are really three major biomarkers to help us make conventional treatment decisions. I’ll list them off first. Then, perhaps, I’ll break them down. The first is HER2. That’s H-E-R-2. Typically, folks have heard of this biomarker who are more in the cancer.  

But the truth is that the same molecular alteration happens at a relatively high frequency for gastric cancer. It’s a critically important biomarker because if we determine that the tumor is HER2-positive, what this tells us is that the cancer is thriving based on this protein in the signaling machinery downstream of this protein. The reason we like to know that is we can then target it as a vulnerability of that cancer.  

That certainly guides treatment options, specifically based on a HER2-positive result or negative. The next biomarker I want everyone to know about is called PD-L1. That stands for programmed death ligand 1. This is also a protein that’s expressed on the surface of cancer cells.  

What we’ve come to understand is that high expression of this protein will interact with immune cells in such a way that it tells immune cells to turn the dial down on their activity. From the cancer cell standpoint, this is a very clever mechanism. Because in normal circumstances, our immune system actually can detect cancer and eliminate it to some degree.  

However, when cancer cells choose, if you will, to overexpress this protein on their surface, it can act as a cloak. Suddenly, the immune system can no longer effectively detect and, of course, attack that cancer cell. This is critically important to know because if indeed a cancer cell is using this mechanism to survive, then we can also take advantage of this vulnerability. 

We can add various immunotherapy therapeutics to the treatment plan. The last biomarker of three that I think up front are very important to know about is called mismatch repair status. Mismatch repair proteins are important proteins that we have in all of our cells. Nature basically gave us these proteins to fix small mistakes in the DNA replication.  

That is to say when we’re growing and cells are dividing, DNA, which is the blueprint for our healthy cells, is copied. There’s a very low rate of mistakes, but there is a constant rate of mistakes. So, nature gave us what are called mismatch repair proteins that literally sit on the back of the enzymes that are doing the work.  

They can detect mistakes; they can snip out those mistakes. They can reinsert the right base pairs to fix the proper DNA code. Now, if these proteins are lost or their function is impaired, this can be advantageous to a cancer cell. The reason is mutations and mistakes will pile up, and they don’t get corrected. This can lead to certain growth advantages for the cancer.  

We know that gastric cancer at a relatively high frequency will utilize this mechanism to propagate itself. So, again, by knowing that the cancer is relying on this mechanism, we can directly take advantage of this as a vulnerability. We can improve the outcomes for the patients through their treatment. 

PODCAST: HCP Roundtable: Improving Clinician-Patient Conversations in Lung Cancer Biomarker Testing

 

Comprehensive biomarker testing can play a very important role in the personalized treatment for patients with non-small cell lung cancer (NSCLC). How do we improve clinician-patient conversations in biomarker testing? And how do we remove barriers that can impede an HCP’s ability to treat patients with personalized care?

Dr. Heather Wakelee, Professor of Medicine and Chief of the Division of Oncology at Stanford University School of Medicine and Dr. Leigh Boehmer, medical director at Association of Community Cancer Centers (ACCC) weigh in on this very important topic.

See More from the Empowered! Podcast

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients (EPEP) program. I’m Dr. Nicole Rochester, pediatrician and CEO of Your GPS Doc. In this Patient Empowerment Network program, we connect leading lung cancer expert voices to discuss enhancing physician-patient communication and shared decision-making in lung cancer care. Some of the topics we’re going to tackle in today’s conversation include the challenges and solutions for biomarker testing in the community hospital setting and in academic centers.

We’re also going to talk about removing barriers that can impede a healthcare provider’s ability to treat patients with personalized care, improving clinician-patient communication with regard to NSCLC biomarker testing, and we’re also going to explore opportunities to improve access to personalized care for all patients. I am thrilled to be joined by thoracic medical oncologist, Dr. Heather Wakelee, Professor of Medicine and Chief of the Division of Oncology at Stanford University School of Medicine. Dr. Wakelee is also President of the International Association for the Study of Lung Cancer. I am also thrilled to be joined by Dr. Leigh Boehmer, Chief Medical Officer at the Association of Community Cancer Centers. Thank you both for joining us today.

Dr. Leigh Boehmer:  

Thank you.

Dr. Heather Wakelee:

Thank you.

Dr. Nicole Rochester:

So we know that biomarker testing connects the right patient to the right treatment at the right time and potentially to the right clinical trial, but there also are some challenges and interventions are necessary, and that’s going to really frame our conversation today. So I’d like to start with the general landscape, so I’m going to start with you, Dr. Wakelee, what in your opinion and expertise are the existing challenges as it relates to biomarker testing in academic medical centers?

Dr. Heather Wakelee: 

Thanks for that question, Dr. Rochester. I think that the biggest challenge is making sure that every patient with a new diagnosis of advanced stage non-small cell lung cancer gets the testing done and gets the testing results back before they start treatment, right? And that’s the goal. I guess that’s more of the goal than the problem, and the challenges come in each of those different phases. First is making sure that every patient is given access to the testing, and there are barriers if the patient ends up very, very sick in a hospital setting.

There are some regulations that can make that challenging, they might be…their first encounters with the healthcare system are going to potentially be with pulmonologists, general practitioners, interventional radiology. And those people might not be aware of what needs to happen to get the tissue as quickly as possible into testing, they might not be as aware of drawing a blood test, if we’re going to do a liquid biopsy, and so if those things aren’t initiated first, when the patient gets to see the oncologist some days or even a week or two later, we’re already further down the path.

They might be starting to get symptoms, and then when you start the testing, you might have to wait longer than is really acceptable before you have the results that could inform treatment. And as you said, Dr. Rochester, the testing, when we get those molecular results back, that’s going to help us figure out what’s going on in that tumor that might change our treatment options, because there’s a driver mutation where there’s a new drug approved that’s going to be the best efficacious opportunity for that patient. And if they don’t know, they can’t start it, we also run into issues where if the patient’s symptomatic, we can’t wait, and then they get started on chemotherapy and immunotherapy, which might otherwise be a standard approach, immunotherapy is in the body, chemotherapy is in the body, the toxicity is there, and then if you later find out, oh, there was a driver mutation, your hands are a little tied, because the toxicity can be amplified if you combine agents and the immune therapy is in the system for months.

So these are some of the challenges and really the barriers…the biggest barriers from my perspective are not every patient is being tested with comprehensive testing as early as possible, right?

Dr. Nicole Rochester:

Thank you for that, Dr. Wakelee, you’ve really, really outlined how the challenges around access to testing and even the timeliness and the importance of timely testing and the fact that these patients are often kind of making their way through a series of providers before they get to the oncologist. So I appreciate that. Dr. Boehmer, I know you have a lot of experience in the community setting where we know there are a host of additional barriers, so I’d love for you to weigh in on this question, and what challenges are you seeing with biomarker testing in the community setting?

Dr. Leigh Boehmer:

Thanks very much for the question. Yeah, I think the use of precision medicine was initially touted as this opportunity to address care disparities, whether that’s in racial ethnic minorities, differences between academic and community practices, et cetera, by using the technology to try to determine treatment largely based on things like the genetic makeup of a tumor. And, unfortunately, in reality disparities have sadly only continued to grow in the setting of targeted and/or testing related to things like ability to pay and insurance coverage for testing, mistrust in the healthcare system, and historical injustices related to cancer care delivery. And there’s a significant discordance in literature between patients and clinicians understanding of the importance of biomarker testing relative to treatment planning.

So even now in 2023, as more states are passing legislation to expand coverage of comprehensive testing, we’re hearing from member programs of ACCC running up against increasing prior authorization restrictions and requirements, and there are unfortunate ramifications of that, like additional costs to programs or additional costs to patients, for example, in the setting of reflexive testing, there’s also a lot of ongoing data which suggests concerning continued racial disparities in rates of guideline concordant testing. So there’s a lot of opportunities for us to learn, yes, from what we have done in successful models of rollout of testing, but we’re still confronting some pretty major challenges and barriers, and I’ve got to say that’s true whether you’re talking about community programs and practices or academic partners as well.

Dr. Nicole Rochester:

I really appreciate you adding that layer, Dr. Boehmer. As someone who does a lot of work in health equity, I was just sharing prior to us recording that these disparities are pervasive, and now we’re learning it’s in lung cancer, and for all of the reasons that you stated, and it’s interesting that when we really start to look at our progress, and when we look at it by comparing different racial and ethnic groups, we find, as you stated, that sometimes the disparities actually widen.

And so it’s not that these aren’t great practices and precision medicine is a wonderful thing, but to your point, if we’re not ensuring that everyone has access to this new technology, then in fact, not only do we continue to see disparities, but sometimes that we inadvertently worsen them. So I appreciate you sharing that. Both of you have been on the ground floor of research in this area with regard to biomarker testing and availability and disparities. So I’d love for you to talk a little bit about the data and what does the data tell us with regard to biomarker testing? It’s important, some of the challenges that you both just stated, and so I’ll start with you this time, Dr. Boehmer.

Dr. Leigh Boehmer:

[chuckle] Thanks, I appreciate it. I’ve been privileged to work with both providers and patients’ caregivers, taking a closer look at some of the barriers and then practical solutions that might be utilized to address some of these concerns around testing. So back in 2021, ACCC used the mixed methods approach to try to understand the motivators of patients and providers, their practice patterns, their attitudes, the educational needs of patients and providers related to biomarker testing and beyond. And you know what’s really interesting, in almost 100 total provider respondents, less than half of community clinicians who responded said that they used biomarker testing to guide patient discussions.

And that was compared to nearly three-quarters of all responding academic clinicians, and it really made us start to think about…so, you know, the impetus for testing in the context of testing. In this particular research, to my earlier comments, we were actually targeting patients with non-small cell lung cancer who were uninsured, underinsured and/or covered by Medicaid. So dual eligible beneficiaries, and it was really interesting because we looked at why and how conversations were happening about biomarker testing between providers and patients, and really identified some tremendous opportunities for education around clinicians’ needs to become more familiar with guideline concordant testing and to have more practical applications of guideline concordant testing, so things like case-based examples, so then ultimately they could have optimal conversations with patients and help coordinate multidisciplinary care.

There’s also data which would suggest a disconnect between ordering testing after initial staging versus ordering testing at the time of initial biopsy. And, Dr. Wakelee, you said something that really resonated with me because if we can identify patients who need to be tested, if we can have access to testing, we still have a disconnect, and this is largely seen in community programs today where clinicians may be waiting 10 days, 14 days, even longer to receive results of testing. And you’re right, we have patients who need treatment initiated sooner than later, and you miss these opportunities because of delays, prior authorizations and a lot of other things, So the data certainly quantitatively, qualitatively is speaking to this hierarchy of problems and there’s definitely some mismatches between patient and provider perceptions of why testing happens, what it’s used for, and timing of the testing and results sharing.

Dr. Nicole Rochester: 

That is fascinating, and we’re definitely going to get deeper into that, this whole patient-provider interaction, so I really appreciate you introducing that and thank you for all the research that your organization has done in this area. So, Dr. Wakelee, you’re on the academic side of things, and you also have been deeply involved in research in this area, so what would you like to offer from your perspective in terms of the data around biomarker testing?

Dr. Heather Wakelee:

Well, thanks, and, Dr. Boehmer, you have a very comprehensive answer there, I think that the differences between academic and community sometimes are broad and sometimes aren’t that big at all, and I do think we face a lot of the same challenges. It’s just…it’s making sure that when a physician is meeting with a patient, and let’s say it’s with the oncologist, that the oncologist is really mindful that any patient with non-small cell lung cancer could have a tumor with a driver mutation. I think it’s easy to stereotype and think that only certain patients are going to, and therefore we shouldn’t be testing everybody. And that gets dangerous. I think it also is a matter of where you’re in practice, and if you’re in a practice where the prevalence of the driver mutations and the tumors is low, you might just say, “Oh, I’m never going to see it,” and you stop testing, and that’s also very dangerous because we have seen in multiple trials, as we get back to that research question, that if we can identify a driver mutation…

And we know that more than half of patients who’ve developed lung cancer who have never smoked or have a light smoking history are going to have an actionable driving mutation, and even in people who do have a smoking history, of any ethnic background, they’re still 10 to 20 percent or maybe more as we identify more of these driver mutations, where that’s what’s really the force in the tumor. And if you find it and you can start someone on the appropriate targeted therapy, usually across multiple trials, the toxicity is less than you would get with chemotherapy or immunotherapy.

Usually the probability of response is over half, you know, if someone’s going to have a benefit that that’s going to help them feel better for a period of time in controlling their cancer, it really drastically changes their whole tumor outcome, they’re going to be living longer, feeling better, and ultimately that’s our goal when we’re helping someone with metastatic disease. And if you don’t know that the tumor has a driver mutation, you’re never going to give them that appropriate treatment, and I think that is the real challenge that we face, and there are multiple different angles to that, right? You have to have the physician aware of the importance of finding the mutation, altering the treatment as necessary, and giving that patient the best possible option for care.

But it also is making sure that the patients are open about this, because I think there’s still a lot of misperceptions about when we talk about driver mutations and the word mutation, making sure that people understand we’re talking about the cancer and not about the person. And in a short conversation that can sometimes be missed, and then people are afraid of getting tested, afraid of what that might mean for them or their family, and so the communication around, we’re going to test your tumor because your tumor might have a mutation that’s going to allow us to give different care. I think that’s really important that people always remember to talk about the tumor and not about the mutation in the person, that’s really, really critical.

And also to avoid that stereotyping about who do we test and who do we not test, pretty much anyone with a non-squamous, non-small cell lung cancer, their tumor needs to be tested, and many people who have a squamous cytology that’s also reasonable. So that’s the people aspect of it, the insurance barriers and the interpretation of the results, those are still there as well. And even if you have perfect communication and the patient understands and you get the testing done immediately, you still have to deal with, is it going to get covered or not? And the results come back, is it going to be interpretable or not? Because that can sometimes be tricky also. 

Dr. Nicole Rochester:

Wow. I would say you two have really uncovered a lot of barriers, and it’s enough to make someone feel a little bit discouraged, I would say, however, because of the work that both of you are doing and so many others, we know that there indeed is hope. And so I’d love to shift a little bit. We’ve talked a lot about the barriers, which are many, what’s on the horizon or what positive trends have you all seen, and specifically what are the opportunities, what are some things that are either happening or that are being explored with regard to removing some of these barriers or all of the barriers that each of you have talked about? I’ll start with you, Dr. Wakelee, give us some hope.

Dr. Heather Wakelee:

All right. Great. Well, I think there is reason to have hope. Absolutely. There always is reason to have hope. And so many organizations, including ISLC, including ACCC, including NCC…I mean, you could name any organization that’s involved in cancer care and education, is really focusing on this issue of making sure that every oncologist knows the importance of doing biomarker testing for patients with non-small cell lung cancer, that we are trying to expand that not just to the oncologist, but also to the folks making the diagnosis, so they can be aware as well. Patient advocacy groups are very engaged in this as well, making sure that when someone is newly diagnosed, if they reach out to an advocacy group, one of the messages they hear is, have you asked about testing what’s happening with the tumor testing?

The more people who are aware that’s a standard of care in treating lung cancer, the more that’s going to happen, and then continuing to explore those financial barriers, and as more agents are FDA-approved, where that becomes a preferred first sign option, but you only know that if the testing’s happened, that leads to campaigning to make sure that the testing is being covered as well, you know, when you can argue, this patient isn’t getting the FDA-approved best care for their cancer because that testing wasn’t done, that’s a really powerful statement. And I think that’s what we’re seeing change happening.

Dr. Nicole Rochester:

That is incredible, thank you. Thank you so much. I can smile again.

[laughter]

Dr. Nicole Rochester:

What about you, Dr. Boehmer? I know you’re getting…your organization is doing a lot of work in this area, so tell us about some of the advances, some of the improvements and tackling some of these barriers that both of you have elucidated today.

Dr. Leigh Boehmer:

So, Dr. Wakelee, thank you for all of those hope-inducing concepts and methodologies, because I honestly believe that so many of us learn best today by seeing someone like me doing X, Y, Z, so I know I can do it as well. So I think it’s about documentation of justification of testing for prior authorization claims. I think it’s about working together with the multidisciplinary team, pharmacist, advanced practitioners, oncology-certified nurses to help manage that back and forth with testing and external pathology and laboratory companies, to make sure that results show up in the right spot in the electronic health record so that they can be interpreted, shared with patients, communicated and contextualized in real time. I think it’s about greater incorporation as we’ve seen across so many of our programs of the tenets of shared clinical decision-making, and how to have a meaningful conversation with a patient and/or their caregivers about testing and its role on treatment and drug selection, and outcomes, and progression-free survival. And there are a lot of programs out there that are doing bits of this or different points along that continuum.

ACCC, for example, building on the research I shared before, recognizes that a lot of community programs don’t have kind of operational best practices for how to incorporate biomarker testing into a patient’s journey, and so for lung, and also, for example, for breast cancer, we’re working on creating care pathways which will help multidisciplinary clinician teams integrate discussions of biomarker testing and its impact at various critical time points along a patient’s diagnosis to treatment, to survivorship or end-of-life care. And those are just examples of us not being overly duplicative, but putting all the resources in one place, talking about timing, talking about when and how to have meaningful conversations, and then doing it with health-literate, vetted resources and through a lens of equity and shared decision-making, because you look like me, you had success with it. I’m going to do it for my at-risk patients as well, because one, it’s the right thing to do. And two, you taught me how to do it, and three, you told me what success looks like so I can measure myself against you, and that’s a successful model for scalability. 

Dr. Nicole Rochester:

That is wonderful. You both have nicely taken us into the next part of the conversation, and, Dr. Boehmer, you just talked about shared decision-making, and as someone who works very closely with patient advocates and health advocates, it’s so important that any effort to improve care with regard to any disease or illness, it has to involve the patient and their family, so I really appreciate you all sharing that. So, with that in mind, and as we begin to think about how the patient-provider relationship and the patient-provider communication plays a role in addressing some of these barriers that we’ve been talking about and then making sure that patients are appropriately being tested and treated, I’d love to hear from you all regarding the role of the patient-provider partnership as it relates to biomarker testing. So, let’s see, I’ll start with you, Dr. Boehmer.

Dr. Leigh Boehmer:

So I really, really think this question is critical, and I’m going to bias by saying, an exciting new position on the multidisciplinary cancer care team that we are learning about it, some of our member programs, is that of a precision medicine steward or navigator. So if you’re at all familiar with the idea of a patient navigation service or the services provided by financial advocates or financial navigators, this is really identifying that it is getting so complex in the world of targeted testing, targeted treatments today, that it literally requires in some places and settings an FTE or multiple to try to navigate testing, pathology, external labs, medical oncology, pharmacy services, nursing administration, and then, of course, patients and caregivers, and communication and context building, working with patient advocacy groups who are out there publishing great resources on testing and what they mean and targeted treatments. But trying to put all of that together, I will admit as a community clinician, as you probably see 15, 18, 20 patients a day, sometimes with as many different discrete types of cancers, it gets overwhelming.

And so, having a support person on staff who can help you manage some of that information and the patient-provider conversations, ACCC is very, very much about recognizing multidisciplinary teams of providers, so it’s critical to have navigation, to have social work providing distress screening and psychosocial support, to have pharmacists talking about targeted therapies and how they match with, to Dr. Wakelee’s points, mutations and fusions and rearrangements and everything we’re testing for with our big panels of next-generation sequencing, right? So I really want to encourage us all to utilize as patients and as team members, everybody else on the team, which is also to say patients and caregivers, are team members too, right? They have rights and responsibilities as members of their own team. And I will end with this, I say all of this, and I feel justified in saying all of this because we’ve done research at ACCC, and without that critical infrastructure, there’s potentially a real disconnect. So, for example, we asked patients with lung cancer what resources would be most impactful for you as you embark on your treatment journey, and they said things to us like psychosocial support and financial assistance.

When we asked the provider respondents a similar question in their own survey, the number one thing they identified, they thought patients needed were educational handouts or websites to go seek information about their diagnosis. Now that’s not to shake a finger at anybody or to say that you were right or you were wrong, that’s just to say, we need people who can approach this whole patient-provider construct from different perspectives, because Leigh is going to ask different questions than Heather is going to ask, than Nicole is going to ask, and that’s the beauty of multidisciplinary care coordination. We do need to come at it from different angles, different perspectives, and always make sure we’re remaining open and inclusive and asking what patients need and want right now. Because we don’t always have the answers, we have to remember that. We’re human, we have biases, it’s always better to ask and provide and then ask again.

Dr. Nicole Rochester:

You are really speaking my language, Dr. Boehmer.

[laughter]

Dr. Nicole Rochester:

And I see, Dr. Wakelee, both of us are shaking our heads the entire time that you’ve been speaking and just around this idea of multidisciplinary teams that include the patient and the family, and ideally at the center. Dr. Wakelee, do you have anything to add?

Dr. Heather Wakelee:

Hard to add. That was very impressive, Dr. Boehmer, [laughter] and highlighting that just…we talk about multidisciplinary sometimes, the first version, some people think of it’s just it’s a team of a few different types of doctors. And obviously that’s not at all what we’re talking about, this is to provide the best possible care for a patient dealing with cancer, that physician-to-patient interaction is critical, but the patient to physicians to family is critical. And then you’ve got to also think about all the psycho-social needs and whether that’s going to be with a social worker or… We have a lot of people working in oncology who are psychologists and psychiatrists particularly focused in that because the coping with the disease is such a big part of it. And it’s also the pharmacy teams and the nursing teams. It is…multidisciplinary is many, many different levels of circles, but at the core, it’s the patient and family and the primary physician, that’s kind of the way I think at it, but I’m an oncologist, so perhaps I’m a little biased in my viewpoint there.

But it’s that communication right there where you sort of have all of the information that the physician’s holding, that’s coming from all of the different treatment disciplines, and then you’ve got all the information that the patient’s holding, that’s coming from their understanding of them and all of their other aspects of their life, and that’s sort of that interaction at the core, and making sure that both sides are seeing each other and seeing all of the other layers of that, so that you could make sure that at each point the recommendations and what the patient is actually doing, everyone’s coming from a point of understanding. I think, to me, that’s the most critical piece. And you don’t have that understanding if you don’t also have all the information you need about the tumor, and you’re not making that right decision if you don’t have all the information you need about all the aspects of who that patient is as a person, and that goes into their decisions as well, and that’s to me, that’s what we’re aiming for, right? 

Dr. Nicole Rochester:

Absolutely, you all have done such an incredible job really highlighting the importance of involving the patient and family, involving this multidisciplinary team, which as you said, Dr. Wakelee, it’s not just a bunch of different types of doctors. So before we conclude, I just want to talk a little bit about that communication, because most of you have shared how important that communication is, and we know that there are challenges, inside and outside of cancer with regard to communicating with patients, and certainly as a physician that some of the complexity of the topics that you all have discussed I would admit is even a lot for me, and so we can imagine that for someone without any medical training, this is very difficult, these topics of biomarker testing and genetics and mutations and precision medicine. So I’d love for you, Dr. Wakelee, to start by just sharing some best practices, things you’ve learned over the years with how can providers who are watching this program really engage in effective, thoughtful conversations with patients and their family members about biomarker testing?

Dr. Heather Wakelee:  

So that’s a great, great question. And really, the communication is to me, like I said, the core there, when I’m talking about biomarker testing with the patient, I usually try to frame it from the context of what makes the cancer different than the rest of you. And what we’re trying to figure out is what is it about the cancer that makes it different than the rest of you, so we can then target what’s different, and hopefully with that, being able to control the cancer without harming the rest of you. So that’s sort of one framework of it, and depending on the patient’s level of understanding, and then sort of layer in different levels of…for people who are understanding DNA and mutations, then you can start talking about those specifics, and for folks who don’t necessarily want to think about it that way, or haven’t had the education about it that way, then just starting from that framework. And I think about it this way too, is how is the cancer different than the rest of the person? And what can we do to therefore attack the cancer differently than we would the rest of the person?

And then from there, if there is a mutation or a translocation or something else that we found, can use the name of that gene and say, “This is different in the cancer than in the rest of you, and this is a targeted therapy that’s going to go after that, and it’s going to work for a period of time, but the cancer is always evolving.” And so we kind of plant that seed from the beginning also, that it’s not curing, that the cancer continues to evolve, and eventually it’s going to change in a way where that doesn’t work, but for right now, that’s the best treatment. So that’s how I’m going about with that communication with people on it. And then, again, I practice in Silicon Valley, so a lot of people will come in with books, practically, of all the research that they’ve done, and so that’s a very different conversation than someone who comes in and says, “Whatever you think is best, doc.” And even when I hear that, which I don’t happen to hear too often anymore, I really feel it’s critical that the patient is still understanding, why are we picking this treatment for your particular cancer, and what are our expectations from it?

Dr. Nicole Rochester:

I really appreciate the plain language, and I think that’s important, and also your acknowledgment that patients come to us with different levels of knowledge and expertise, and so really it’s about meeting them where they are, so I really appreciate that. And, Dr. Boehmer, we’re going to allow you to wrap up on this topic, I know that the Association of Community Cancer Centers has done research about what patients want to hear and some of the biases around providers, maybe thinking that patients don’t want or don’t need some of this information, that it may be too confusing for them, so I’d love for you to share some knowledge around your experience in this area and some best practices around communicating with patients.

Dr. Leigh Boehmer:

Thanks very much, I appreciate the opportunity, I’ll try and keep it targeted. I think number one, Dr. Wakelee, you’re correct. We have visual learners, auditory learners, we have people that want more direction and less direction, so simply starting by asking, how do you prefer to learn? It’s a wonderful place to start. It could be drawing pictures, it could be giving them that academic print out of literature published in a cutting-edge journal. But we need to know how patients learn and respect the fact that we’re all individuals and we as providers talking to patients may need to alter our approach based on different patients’ characteristics. I also think our research has shown that consistent terminology must, must be utilized, biomarker testing, molecular profiling, next-generation sequencing, mutation analysis, whatever it is, that you have decided to make your consistent terminology, please in your teams, then in the next level of teams, then in your health system, and then with your colleagues, talk about what it is, why it is, does it go against another group or is it in agreement with A, B, C groups. Because we have to, as a collective, really agree on and start utilizing consistent terminology, because until we do, we’re just continuing to stir the pot and cause confusion amongst patients, caregivers, other patient advocacy organizations and ourselves.

The other thing I’ll say, at ACCC, we’ve got a lot of resources aggregated in one place about shared decision-making, what it is, how to do it, how to assess yourself, health literacy, how do you evaluate your program to make sure you’re asking the right questions before you ever, ever have a conversation with a patient about biomarker testing or different targeted treatments for patients with non-small cell lung cancer? There’s little things that you can do today that’s so important. Little things you can do today that will make a positive influence on your patients’ outcomes and experience just by asking, addressing your own biases, being inclusive with your language and using consistent terminology. All of that is on our website and it’s truly incremental. Go easy on yourself, we’re all learning here, and acknowledging your bias and trying to be more inclusive is very, very worthwhile, and it’s okay if it’s small steps every single day made.

Dr. Nicole Rochester:

A wonderful way to end this program. I have learned a lot as always, I’m sure that those of you watching have as well. We have talked about the challenges around biomarker testing on the clinician side, on the patient and family side, we’ve explored some amazing solutions to some of these challenges and barriers, and I just want to really thank both of you for being here, and lastly, give you an opportunity if there’s something that you really feel like we should have talked about that we didn’t get to. Any closing thoughts or anything that you want to leave the audience with. And I’ll start with you, Dr. Wakelee.

Dr. Heather Wakelee:

Thanks. I think just to make sure everyone is always thinking, if you’ve got a patient and they’re coming to see you and they have lung cancer, that you’ve done the biomarker testing, that the patient understands about it, that you’ve had an opportunity to include that as part of the conversation whenever you’re talking about treatment.

Dr. Nicole Rochester:

Thank you, Dr. Boehmer.

Dr. Leigh Boehmer:  

The only thing I would add is that if you’re thinking about creating resources, if you’re trying to target at-risk populations or communities in your area, please always, always remember to invite those individuals as you are talking, creating and disseminating. Because we don’t have all the answers, and that’s okay. I give you permission, but please invite people in and let them be a part of the discussion and the proposed solutions.

Dr. Nicole Rochester:

Wonderful. Well, thank you again to both of you, Dr. Wakelee, Dr. Boehmer, this has been an amazing conversation. And thank you again for tuning in to this Empowering Providers to Empower Patients program.

Dr. Leigh Boehmer:

Thank you.

Expert Advice | Shining a Light on Equitable AML Care

Expert Advice | Shining a Light on Equitable AML Care from Patient Empowerment Network on Vimeo.

While treatment options are improving, there are still many factors impacting equitable care for AML patients. Dr. Ann-Kathrin Eisfeld shares advice for improving research and clinical trials for underserved AML populations.

Dr. Ann-Kathrin Eisfeld is Director of the Clara D. Bloomfield Center for Leukemia Outcomes Research at The Ohio State University and a member of the Leukemia Research Program at the OSUCCC – James. Learn more about Dr. Eisfeld.

See More From INSIST! AML

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Advances in AML Research: Where Do Clinical Trials Fit In?

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How Does the Presence of Molecular Testing Affect AML Care?

Transcript:

Katherine Banwell:

Dr. Eisfeld, we’ve covered a lot of information related to AML care. As a researcher, what other topics are currently top of mind for you in the field of AML? What are you passionate about? 

Dr. Eisfeld:

Again, so many parts. I think there are probably three main things that I’d like to name. And I think about it as a little bit outside the box. Most of what we know about AML, we have become so much better. It’s because we have been studying patients who were treated over the past decades on clinical trials and very often here in the U.S. or in Europe.  

But all clinical trials have a bias in that most of them have been done A) on patients who are younger than the age of 60. And B) fewer patients of other races and ethnicities included. And had patients not included that have AML, for example, not only in the bone marrow but on extramedullary sites – how we call it – up to 10 percent of their patients. And also, very often have not been done on very old patients where the AML is very common. So, all the patients – patients from other race, ethnicities, or underrepresented minorities, and patients who present with extramedullary disease are currently in my – underserved.  

And these are exciting areas and opportunities of research and of active clinical practice. Because those are the patients we need to include if it’s possible now to include them in clinical trials. 

If there are no trials available, then make sure any other additional molecular testing it done to understand them better and to advance our disease knowledge that we make sure that we can give the best possible care.  

I think that the most important part is to get the molecular testing, and to enroll into clinical trials, and then to very often biobanking 

Why am I saying that is because our knowledge AML comes from patients who donated some tissue so that we could learn – researchers decades ago could learn about the genes. We know that leukemias differ so much in between patients.  

So, I am worried that we are yet missing out on potentially important genes that need to be discovered and where we could develop docs for. This will only be possible with these additional testing. 

 The second part is to really consider going to larger treatment and larger treatment cancer center. And there are support systems in case that can help in here.  

And the third part is to get involved even as early as possible even if you’re not personally affected, with Be The Match – with bone marrow transplant because there’s a paucity of donors, of people of color that makes it harder for these patients to get a potentially curative treatment in here.  

We have other options now in bone marrow transplant where one can use only half-matching donors and or other availabilities. But again, that doesn’t outweigh that the bone marrow and donor registry that we need to get better at.  

And I can – there are just so many factors – such a high degree of structural racism that affects people from every corner. And I think we as physicians, as society, and everybody need to acknowledge that. And we have to make sure that we get better to, again, give every patient the best care and keep the patient in mind and see what’s right for them at the right moment.    

Katherine Banwell:

Where can patients or people who are interested find out about being a donor? 

Dr. Eisfeld:

There is the website called “Be the Match” that one can put in. This is probably the best way to get first information.  

And usually, at all the cancer sites. And sometimes, there is information at lab donation places, universities, either or the American Red Cross. Usually those places have information laid out there as well. 

What Are the Types of Breast Cancer?

What Are the Types of Breast Cancer? from Patient Empowerment Network on Vimeo.

Breast cancer expert Dr. Bhuvaneswari Ramaswamy shares an overview of breast cancer types and explains the standard biomarker testing that occurs following a diagnosis.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

See More from Thrive Breast Cancer

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Thriving With Breast Cancer Tools for Navigating Care and Treatment

What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care?


Transcript:

Katherine:

Let’s start with an essential piece that helps people thrive, understanding their breast cancer. First, what are the types of breast cancer?

Dr. Ramaswamy:          

Yeah, and I think that’s extremely critical.   Empowering you, the patient, with the knowledge of the type of breast cancers and what’s the   outcomes and why they’re getting some treatments,  and what to look for is probably one of the most important things to do. And part of it lies primarily with the providers to ensure that education   empowerment. But part of it also lies on the part of the patient to make sure they ask the right questions and learn about their breast cancer.

So, the type of breast cancers you have that are hormone receptor -sensitive breast cancer, that means your tumor would be positive for estrogen and or progesterone receptors. And it depends on estrogen and or progesterone for its growth and well-being. And then there is a HER2-positive breast cancer, which means the HER2 protein is high in your tumors and that drives the cancer cells.

And so, it’s important to understand that subtype and why we have certain treatments to improve the outcomes. And then the last one is when all those three are not there, ER, PR, and HER2. So, hence the word triple-negative breast cancers. These are the large subtypes of breast cancers that are based on these biomarkers, which are proteins that drive the growth of breast, the cancer cells. There is of course different types of breast cancer based on histology that is invasive ductal cancer, that’s very most common. The less, slightly less common is the  invasive lobular cancer, about 10 to 15 percent.

But then there are also very less than 3 percent called   metaplastic breast cancers and other types of  breast   cancers that could also be histological different subtypes.

And it’s important for you to know what type of subtype of histological or how does it look under the microscope is important for you to know as well. So, these I would say are the most important understanding of our breast cancer subtypes, at least  this much to definitely educate the patient and patient having the understanding of their cancer.

Katherine:                     

What biomarker testing is standard following a breast cancer diagnosis?

Dr. Ramaswamy:          

So, the three biomarkers that we definitely test for at this point are the estrogen receptor for strong receptors and the HER2. And, of course, there’s also  the grade that your pathologist would grade your tumor. And grade is different from stage. And that is looking at how quickly your cells are growing. And these are the basic understanding that you should have about your cancer at this point.

Dr. Leigh Boehmer: Why Is It Important for You to Empower Patients?

Dr. Leigh Boehmer: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can healthcare providers help with patient empowerment? Expert Dr. Leigh Boehmer from Association of Community Cancer Centers (ACCC) shares her perspective about patient empowerment and methods they have used at ACCC to help empower patients.

See More from Empowering Providers to Empower Patients (EPEP)

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Dr. Heather Wakelee: Why Is It Important for You to Empower Lung Cancer Patients?

Transcript:

Dr. Leigh Boehmer:

At ACCC, we’ve made a commitment to including patients and patient advocates in all of our ongoing educational initiatives, we no longer want to create or disseminate resources that weren’t first designed and vetted within communities for which they’re being built, and we also believe in rooting all of our work in health equity. Because all people deserve to be offered safe and effective cancer care, and I think…I feel so passionate about patient empowerment because I identify as a cancer survivor myself, I have my own patient story, and, unfortunately, cancer has touched the lives of so many across the globe, and so I advocate for recognizing patients and caregivers as vital components of any care delivery team, and I  think it’s so critical because to be honest, we’re always going to be stronger together.

Dr. Heather Wakelee: Why Is It Important for You to Empower Lung Cancer Patients?

Dr. Heather Wakelee: Why Is It Important for You to Empower Lung Cancer Patients? from Patient Empowerment Network on Vimeo.

How can healthcare providers continue improving patient-provider communication? Expert Dr. Heather Wakelee shares methods she has used to help empower her patients and to improve communication with her patients. 

See More from Empowering Providers to Empower Patients (EPEP)

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Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

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Transcript:

Dr. Heather Wakelee: 

So, to me empowering patients is about having a two-way communication with patients at all times, and never coming in and telling them that we’re doing something and walking out of the room, but coming in and asking, first, how they’re doing, questions they have, and then going through, these are the things I’m thinking, and why I’m thinking about them and what I’m suggesting. And then turning it back to them so that they can respond and ask additional questions.

So that to me, it’s that two-way communication is how I empower patients, and it’s absolutely critical, because if you have someone on a cancer journey and they don’t know where they are, why they’re there, or where they’re going, then they’re feeling lost, and it’s really important for people to understand the journey as they’re going on it, at least the parts that we can’t understand, there’s plenty that you can’t, it’s still a scary journey, but what we can do as care providers is to give patients the power of understanding and that free communication, that’s how I look at it.

MPN Essential Testing | How Results Impact Care & Treatment Options

MPN Essential Testing | How Results Impact Care & Treatment Options from Patient Empowerment Network on Vimeo.

How could molecular testing affect MPN treatment decisions? Dr. Raajit Rampal explains the purpose of this essential testing and how the results may impact prognosis and care. 

Dr. Raajit Rampal is a hematologist-oncologist specializing in the treatment of myeloproliferative neoplasms (MPNs) and leukemia at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Rampal.

 

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Understanding and Managing Common MPN Symptoms and Side Effects


Transcript:

Katherine Banwell:

Let’s talk about what sort of tests should be done following an MPN diagnosis. Can you tell me about those? 

Dr. Raajit Rampal:

Yeah. Fundamental to the MPN itself, the things that we really want to know is, in most cases, a bone marrow examination is needed because that will tell us really what the disease is that we’re dealing with. It will tell us about the genetics. I strongly believe we have to be comprehensive in our genetic assessments because that does prognosticate and sometimes gives us an opportunity in terms of treatment. Chromosomal analysis. These are the basic bread and butter hematology tests we want to do from the bone marrow to really understand what the patient’s disease is. 

Beyond that, I think that particularly in patients with PV and ET, it’s important that we partner with their primary care physicians to make sure that they’ve had, for example, testing for diabetes, a recent lipid profile, any cardiovascular tests, particularly measurements of blood pressure because these things are all important in terms of an ET or PV patient’s risk of having a blood clot. So, there are, again, things that are within hematology realm but then, there are other general health things that become really important in somebody who is diagnosed with PV or ET. 

Katherine Banwell:

How often should lab tests of blood work be done? 

Dr. Raajit Rampal:

It really depends on the patient. For some patients with PV, for example, they need to have their blood checked every three weeks because they’re having frequent phlebotomies. Whereas some patients with ET could probably go forward to six months between blood tests. So, it depends on the individual. 

Katherine Banwell:

How can results of biomarker testing affect treatment choices for patients with MPNs? 

Dr. Raajit Rampal:

Great question. The genetics are becoming increasingly important in our treatment decisions. So, let’s take a simple example, which is patients with ET. Calreticulin and JAK2 and MPL are the three most common mutations that we see. But they have very different invocation. So, somebody could have a calreticulin-mutated ET and based on them having that calreticulin mutation and no other factors like no history of clotting, that patient may never need to go on a medication aside from aspirin. And even early on, it’s debatable whether or not some of these patients really need aspirin at all. 

Whereas somebody who had a JAK-2 mutant ET, our guidelines and data suggests that that person, once they reach a certain age, should probably be on medication. So, that’s kind of perhaps one of our more clearcut examples of a genetic biomarker telling us how to approach treatment. 

And then, it gets more nuanced from that and more exciting and interesting in the sense that there are mutations, for example, that occur in myelofibrosis and in patients whose disease is progressing towards leukemia, such as IDH mutations. And these are things that are now targetable with FDA-approved drugs.  

And there are now clinical trials combining JAK inhibitors and IDH inhibitors for patients who have more advanced disease who have these IDH mutations. So, you go from on one end, these genomic markers being of prognostic significance and now, on the other hand, we’re getting to a point where, in some cases, they might tell us how to best treat a patient.  

Katherine Banwell:

Dr. Rampal, should all patients diagnosed with MPNs undergo molecular testing?  

Dr. Raajit Rampal:

I strongly believe that. I think that we’ve learned so much that these tests have prognostic value. 

And in some cases, it may suggest a slightly different diagnosis. I definitely think that should be the case. 

Katherine Banwell:

What should patients be asking once they have the results? 

Dr. Raajit Rampal:

What does it mean? That’s the most basic and fundamental question. It’s one thing to get a list of mutations. But the real bread and butter question is what does this mean to the disease and my prognosis and my treatment?  Those are the key questions. 

The Importance of Molecular Testing Following an AML Relapse

The Importance of Molecular Testing Following an AML Relapse from Patient Empowerment Network on Vimeo.

Why do you need molecular testing following an AML relapse? Dr. Sanam Loghavi emphasizes the importance of this essential testing and why it’s necessary following relapse.

Dr. Sanam Loghavi is a hematopathologist and molecular pathologist at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Loghavi.

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Transcript:

Katherine Banwell:

Unfortunately, relapse can happen following a course of treatment for AML. Should patients undergo molecular testing again before choosing another round of therapy?  

Dr. Sanam Loghavi:

100 percent yes, that is always a yes. So, like I said, at baseline there are certain recommendations and the standard of care is to perform genetic testing.  

But I cannot emphasize this enough, that AML or any cancer, for that matter, cancers tend to be smart, so they bypass the mechanisms that we try to eliminate by our targeted therapies.  

So, oftentimes the genetic landscape of disease will actually change upon relapse or what we refer to as clonal evolution, and you may hear this terminology in the literature. So, it’s very important to molecularly or genetically characterize the disease at relapse before you decide how you are going to alter the course of treatment at that point. 

Katherine Banwell:

Dr. Loghavi, what are you excited about in your research right now? 

Dr. Sanam Loghavi:

Sure. So, I’m a pathologist, so I do a lot of molecular testing, and I also do a lot of measurable residual disease testing, and measurable residual disease tends to be one of the most informative factors in the care of patients with acute myeloid leukemia. So, these are the things that we’re very excited about, again, identifying better molecular targets of therapy, being able to measure residual disease at a more sensitive level that allows us to make better informed decisions for the care of our patients. And also, again, identifying the mechanisms of how AML develops in order to be able to eliminate the disease.  

Metastatic Prostate Cancer Treatment Sequencing: Emerging Research

Metastatic Prostate Cancer Treatment Sequencing: Emerging Research from Patient Empowerment Network on Vimeo.

What do metastatic prostate cancer patients need to know about developing treatment sequencing research? Dr. David Wise shares research updates about combination treatments and timing of treatments that have shown encouraging results.

Dr. David Wise is Director of Genitourinary Medical Oncology at the Laura and Isaac Perlmutter Cancer Center at NYU Langone Health. Learn more about Dr. Wise.

See More From INSIST! Prostate Cancer

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Why Prostate Cancer Patients Should Consider Participating in a Clinical Trial


Transcript:

Katherine:

Dr. Wise, is there developing research or treatment news that prostate cancer patients should know about? 

Dr. David Wise:

Yeah. I think in terms of other research, I think where we’re seeing a lot of excitement is in boosting the treatment at the time of initial diagnosis for men with metastatic prostate cancer, right?  

So, what we’ve found is that for prostate cancer – and this has been true for some other cancers, but not all – it seem that when we use our best treatments early, we get a greater and greater return. We get a greater and greater durability of our effect and a more prolonged benefit of treatment effectiveness, of quality-of-life preservation, and a life span. That has really been, I would say, one of the key take-home points from the last five years.  

And so, what’s exciting in the field is that we’re continuing to go in that direction. So, for example, there are clinical trials now testing some of the new CDK4/6 inhibitors like abemaciclib or Verzenio, which is a clinical trial that we have here for men who are initially diagnosed.  

There are clinical trials testing lutetium PSMA 617 at the time of the initial diagnosis rather than waiting until treatment resistance develops. I think it’s a principle that’s emerged. I don’t know that I would call it a law. If it were, we wouldn’t have to do clinical trials, and that’s because with more exposure to these treatments, there is potential for more cumulative side effects with more combinations of treatments. There’s more potential for additive side effects that can occur from that combination.  

So, we need to see and really prove to ourselves that treating earlier is better than treating in a one-treatment-at-a-time sequential approach. But I think that the lesson from many other cancers has really been that combination treatments have been the most effective treatments. And I think that now that we have additional effective treatments that have been approved as a standalone strategy. 

What’s exciting now is that we’re now seeing the combination of these strategies into one, two, three, four drug regimens. And can we cure? And that’s, of course, what we’re really hoping for. That’s what we’re all striving for in oncology. So, that’s, I think, were a lot of the excitement is in oncology right now.