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Lung Cancer Treatment Decisions: What’s Right for You?

Lung Cancer Treatment Decisions: What’s Right for You? from Patient Empowerment Network on Vimeo.

When choosing an lung cancer treatment, what should be considered? Dr. Jessica Bauman, a lung cancer specialist, reviews treatment types and key decision-making factors, including how test results influence options and provides advice to help you advocate for better care.

Dr. Jessica Bauman is assistant professor in the department of hematology/oncology and as associate program director of the hematology/oncology fellowship training program at Fox Chase Cancer Center in Philadelphia. Learn more about Dr. Bauman here.

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See More From the The Pro-Active Lung Cancer Patient Toolkit

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The Pro-Active Lung Cancer Patient Toolkit


Transcript:

Katherine:                  

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’ll discuss how you can be proactive in your lung cancer care to partner with your healthcare team to make the best care and treatment decisions for you. Joining us today is Dr. Jessica Bauman. Welcome, Dr. Bauman. Would you please introduce yourself?

Dr. Bauman:              

Absolutely, thank you so much for inviting me here today. My name is Jessica Bauman, and I am a thoracic and head and neck oncologist at Fox Chase Cancer Center.

Here I am also the associate program director for our hematology/oncology fellowship program as well as one of the disease site leaders of one of our research teams.

Katherine:                  

Excellent, thank you. A reminder that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.

Dr. Bauman, from my understanding, there are two main types of lung cancer – small cell lung cancer and non-small cell lung cancer. Would you provide a brief overview of how these two types of lung cancer differ?

Dr. Bauman:             

Absolutely. So, I think it’s important for any new patient who’s coming in, to see me or any medical provider. The first thing we need to establish when we are thinking about a lung cancer diagnosis is what the cells look like under the microscope. And the simplest way to think about this is either they look like small cell lung cancer, or they look like non-small cell lung cancer.

And that really can decide what kind of treatment we need to pursue. For small cell lung cancer – small cell lung cancer can be a more aggressive lung cancer that certainly can spread throughout the body and requires more urgent treatment in general when we’re thinking about the speed in which we need to start to treat patients for this cancer. For non-small cell lung cancer, in general, we don’t have to start treatment as quickly as we need to for small cell. And there is a lot more information right now that we need other than just the simple non-small cell lung cancer diagnosis. We need to know whether it is adenocarcinoma or squamous cell carcinoma, which are further subdivided.

And then we often need even more information about those subtypes to be able to decide ultimately what the best treatment plan is.

Overall, I would say about 15% of lung cancers are small cell. So, they’re more rare. And about 80% to 85% of lung cancers are non-small cell. And the most frequent kind of non-small cell lung cancer right now is adenocarcinoma. It didn’t used to be that way. Squamous cell carcinoma actually used to be more common, but in more recent years, adenocarcinoma is becoming more common. And interestingly, it’s also becoming more common in women.

Katherine:                  

Why is it becoming more common?

Dr. Bauman:              

So, part of that is we think that the demographics are changing somewhat in terms of lung cancers. So, the traditional risk factor, of course, of lung cancer is smoking, however, not all patients who have lung cancer were smokers. And we are seeing, in fact, more people being diagnosed with lung cancer who have never smoked or, in fact, are light smokers. And so, we think that that is likely playing a role.

Katherine:                  

Before we move into testing and staging, are there any common misconceptions you hear when you see new lung cancer patients for the first time?

Dr. Bauman:              

Sometimes I see people think, “Oh, lung cancer is a death sentence.” I certainly see people say that. But I think that one of the wonderful parts about being a lung cancer oncologist right now is our treatment options have really been revolutionized in the last 10 to 20 years. And we have more options right now, and we have a better understanding of this cancer, then we ever have had.

And so, I do think that I look with more optimism at this diagnosis, obviously, which is still quite devasting to patients and their families.

Katherine:                  

Right. Dr. Bauman, what testing should take place following a lung cancer diagnosis?

Dr. Bauman:              

So, this very much depends on how the cancer was diagnosed initially. So, some cancers are diagnosed on screening – lung cancer CTs right now – but other cancers are found incidentally, for other reasons. Or there are some that are diagnosed with a scan because somebody’s developing a symptom. So, in general, what I would say is that we always need good imaging essentially of the entire body when a lung cancer is suspected. Often this includes CAT scans, but this very commonly also includes a PET scan. And it will often include a brain MRI as well because the best way to the look at the brain is with an MRI.

Obviously, that can vary a little bit depending on what studies people have already had and what radiologic techniques are most accessible.

Katherine:                  

What about molecular testing and biopsies?

Dr. Bauman:              

So, sorry, I was sort of going on the imaging. But so, of course, you need full imaging. But the first thing you need to do that is paramount is establishing a histologic diagnosis, which goes to this initial thought of, “Is this small cell? Is this non-small cell? What is it?” So, if there is a lung mass that is suspected to be lung cancer, the first thing that happens is a biopsy as well as imaging. The imaging helps us establish, “Has this gone anywhere else? Does it involve the lymph nodes?” and helps us with the initial staging workup. Often there is a biopsy of the mass itself.

But there are often biopsies as well as the lymph nodes that are involved, in particular in the center of the chest called the mediastinum, because that also helps us establish the stage of the cancer.

And then if the cancer does look to have spread to somewhere else, we sometimes biopsy only that area or that area in addition to establish that it, in fact, has spread to a different place such as the liver or the bone. Once that biopsy is done, and once we know what type of lung cancer it is, then we also send more studies on the biopsy itself that help us determine what the best treatments are, in particular when we’re talking about what I call “systemic treatments.”

So, treatments that are going into the body and all over the body that involved immune therapies, chemotherapies, or targeted therapies. So, that extra testing that we do is something that’s called molecular testing.

It’s also called next generation sequencing. There are a bunch of different terminology that we use.

Katherine:                  

Okay. Dr. Bauman, would you walk us through how lung cancer is staged? And is it different for small cell vs. non-small cell lung cancer?

Dr. Bauman:              

Absolutely. So, as we talked about, the first thing that we do is we do get a biopsy to establish the diagnosis. The second piece is often if it looks to be a cancer that is only limited to the chest – so there is a mass and maybe some activities in lymph nodes that we’re concerned about but nowhere else – not only do we want to biopsy the mass itself, but we also want to know whether those lymph nodes are involved. So, those are biopsied because that will tell us the stage of the cancer. Staging very much depends on the size of the tumor itself, and then it also depends on, “Has it spread to lymph nodes in the center of the chest, and has it spread outside of the chest to other places?”

And so, early-stage lung cancers are just the primary cancer itself that has not spread anywhere else. More advanced stage lung cancers – things like Stage IIs and Stage III lung cancers – are ones that also involve the lymph nodes. And then a Stage IV lung cancer involves a lung cancer that has spread to somewhere outside of the body. And depending on the stage is really what determines the way we approach treatment for these patients.

Katherine:                  

And that is actually my next question. What do the results of these tests tell us about prognosis and treatment choices?

Dr. Bauman:              

So, they tell us stage, and, ultimately, prognosis and treatment choices are completely linked to the stage of a cancer. So, an early-stage lung cancer, often a Stage I or Stage II lung cancer, primarily our first choice of treatment is surgery. And if surgery is feasible for the patient – because, of course, it also depends on their other medical comorbidities and whether they can withstand a surgical resection of the cancer.

But usually, early-stage lung cancers we start with surgery. And then depending on what the pathology shows us, we sometimes include a course of chemotherapy afterwards to decrease the risk of the cancer coming back. More advanced lung cancers, so Stage III lung cancers, often involved what we call “multiple modalities.” So, for some patients we do a combination of chemotherapy and radiation in an attempt to cure the cancer. Often that is followed by immunotherapy. There are other patients who have Stage III lung cancer where we do chemotherapy and radiation and follow that with surgery.

So, it’s a very case-dependent decision algorithm, where it really depends on where the tumor is, the type of tumor, what the surgery would be, what the patient’s underlying health status is, etc.

And then if it is a Stage IV cancer, often we are really approaching this with systemic therapies. So, once a cancer has spread outside the lung, we traditionally think of this often as an incurable cancer. And there is a much more limited role of surgery and radiation, though I wouldn’t say that they’re absolutely off the table. Again, we sometimes think of these in sort of a case-by-case scenario. But in general, our approach for a Stage IV cancer is with some kind of systemic therapy. And that completely depends on all those special tests that we do that we were talking about that we send on that initial biopsy.

Katherine:                  

What about the significance of chromosomal abnormalities?

Dr. Bauman:              

So, what I would say is, what we do for, in particular, in the setting of a Stage IV lung cancer diagnosis right now, is we send molecular testing on the biopsy samples of these patients, in particular if they have adenocarcinoma.

And the reason we do this, what this gives us, is it tells us about the DNA of the tumor, and whether there are genes in the tumor that are changed in some way that are affecting the cancer’s ability to grow. And the reason that’s so important, is there are new treatments that really capitalize on those changes in the tumor to be able to stop the cancer from growing. The best example of this is for people who have something called an EGFR mutation.

And there are multiple different kinds of mutations. I call it “alphabet soup” because there are so many different letters and numbers.

But if people have an EGFR mutation that we think is one of the primary reasons they have this cancer growing, there are pills that target that EGFR protein that stop the cancer from growing. But if they don’t have that mutation, then those pills are not gonna do them any good.

And so, that is really where lung cancer treatment and diagnosis has become so personalized based on, of course the person itself, but also the characteristics of their tumor.

Katherine:                  

How can patients advocate for a precise lung cancer diagnosis, and why is that important?

Dr. Bauman:              

So, it’s, of course, important because it changes everything that they would be able to be offered in terms of treatment. And so, I think that it is important to, one, really understand what your lung cancer is. Right? What is the stage? What are the treatment options? And if there are treatment options that are not options for you, why is that? And is that because of special testing that has been done? So, I think it’s always important to ask, “Are there other special tests that I need to have on my tumor or on the biopsy?”

And if patients have questions about what options that they have, I think it’s important for them to understand why some options are theirs, and why other options may not be good options for them, and how their physician is making those decisions. Because I do think the more you understand about this, the better you can advocate for the types of treatments you can access.

Katherine:                  

Absolutely. We just covered some of this, but when deciding on a treatment approach with a patient, what do you take into account when making the decision?

Dr. Bauman:              

So, we take into account all of the things that we’ve been talking about. Of course, the No. 1 most important part is the histology, so what the kind of cancer is. No. 2 is what the stage is. And then No. 3 is the health characteristics of that patient.

Do they have underlying health problems that would impact the types of treatment that we would consider? And then ultimately, what are the goals of the patient? Right? So, of course, we have lots of different options, but it’s going to be important to partner with the patient and their family to understand where they are in their life and what kinds of treatments are feasible and acceptable to them.

Katherine:

What about treatment side effects? Do you take that into consideration?

Dr. Bauman:              

Absolutely. So, I always talk about my two primary goals for when I’m treating a patient is 1.) is to help them live as long as they can, and No. 2 is to help them live as well as they can. And I do think it is critical to understand the side effects of our treatments and how that may impact the patient and what their underlying issues are. So, for example, if I have a patient who comes to me who already has significant neuropathy because of a prior diagnosis of some kind, we need to strongly consider the types of treatments we’re using to consider one that doesn’t cause neuropathy.

Right? And often there are different treatments that we have where we can really consider the side effects and quality of life for patients in terms of what we have. I’ll also say that treatments and the supportive care that we have to offer have become better over time. So, yes, of course, we give toxic treatments, but we definitely are able to support people better with the side effects that they have to try to minimize those and make it as tolerable as we can.

Katherine:                  

What do you feel is the patient’s role in this decision, and how does shared decision making come into play?

Dr. Bauman:              

So, I think the patient’s role is, of course, this is their body and their lives. Right? I think that it very much is a decision that we make together. And of course, as a lung cancer expert, yes, we’re gonna talk about what we recommend as what we think is, sort of, the gold standard treatment.

But you can’t make anybody do anything. Right? You want people to be their own advocate in terms of their health. And so, I need to know how someone is feeling. I need to know if they’re having significant side effects from treatment. And so, I think the more they can tell me, the more they can ask questions, the more they can understand their illness, the better we can partner to be able to face it together.

Katherine:                  

Dr. Bauman, now that we’ve discussed factors that go into the treatment choice, would you walk us through the currently available lung cancer treatment approaches and who they might be right for?

Dr. Bauman:              

So, we talked about this a little bit, but I would say, so, certainly, the different types of lung cancer treatment depends on the stage of the cancer.

But in general, I’m thinking about the broad categories that we have. So, number 1 being surgery. So, surgery is absolutely one of the most important aspects of lung cancer treatment that we have and is one of the ways in which it is possible to cure lung cancer. So, surgery can happen both as an open surgery, but there are also more minimally invasive surgeries now that have also revolutionized the way they can do surgery in lung cancer. And so, that absolutely plays a very significant role in the treatment of lung cancer.

The second broad approach that I would say is that of radiation.  So, radiation also plays a very critical role in lung cancer, often more in advanced-stage disease for patients who have, for example, Stage III disease, where the treatment that we consider is a combination of chemotherapy and radiation also with curative intent.

So, the idea behind this is that it’s cancer that is still in the chest, but it has spread to the lymph nodes in the chest, and a combination of chemotherapy and radiation may still be able to cure patients of this cancer. And so, radiation also can play a critical role. And interestingly, in small cell – which we’ve spoken a little bit less about – radiation and chemotherapy play a very important role in small cell, and often surgery plays less of a roll in small cell. And so, our treatment approach using radiation is in both of these kinds of cancers, and often we’re doing a full course of radiation also in an attempt to cure the cancer for the patient.

The last, sort of, broad category of treatment that I would say is what I call “systemic treatments.” So, that is targeted treatment. That is chemotherapy. And that is immune therapy.

And what we use of those three types of treatments completely depends on the patient’s stage and more information about that patient’s tumor, in particular, the molecular testing as well as what we say is called PD-L1, which is a marker on the tumor that tells me about the responsiveness to immunotherapy.

Often, we use a combination of many of these treatments. So, there are patients who get surgery and then chemotherapy. There are patients who get chemotherapy and radiation and then surgery. And there are patients who get only what we call systemic therapies.

I will also say it’s important to note that for radiation, although there’s a proportion of people that we use radiation with curative intent for a long period of time – so, a six-week course of radiation – we also use radiation to help with symptom management if someone’s having a specific problem that’s causing them a symptom where radiation may help.

The classic example of that is pain. So, if they have a spot in the bone that is causing them a lot of pain, a short course of radiation to shrink that tumor where that is, can be very helpful. And so, radiation we can also use to help with palliation of symptoms. The other things that I’m not getting into significantly today, but are also there, are there are other types of procedures that have become more common where you can go in, for example, with an interventional radiologist and do an ablation of a tumor.

Our interventional pulmonologists also do significant amount of ability to access the lungs and the lymph nodes to be able to help with diagnosis, but they can also do something like a debulking procedure where they can get rid of some of the cancer to stop it from bleeding.

They can also stent open the cancer to help people breathe better. So, there are multiple different other team members who also are really critical to our patient’s care.

Katherine:                  

Yeah. How do clinical trials fit into the treatment plan?

Dr. Bauman:              

So, clinical trials are very important in all of our decision making. So, there are many different kinds of clinical trials, but clinical trials are where we are offering the newest potential treatment options for patients. And there are some clinical trials where it’s a brand-new drug that’s never been in a person before, but there are also clinical trials of drugs that we use from a different disease that has been effective, and now it has good evidence, potentially, in lung cancer, and so it’s being used in lung cancer. There are also trials of new combinations of treatments.

So, for example, one of the most recent, sort of, classic treatment-changing trials was a large trial where everybody who had chemotherapy and radiation for Stage III lung cancer, then received a year of immune therapy vs. not receiving immune therapy to see if that new treatment would help them live longer or would prolong their survival.

And in fact, that trial was very positive, and so it changed the way we treat Stage III lung cancer. So, again, these are just examples of types of clinical trials. But clinical trials are where we are finding out what may be the next best treatments for patients.

And so, when I’m thinking about a treatment approach to a patient, I’m incorporating all of the things that we talked about, but I’m also then thinking about, “Are there clinical trials that may also be relevant to them for their specific situation?” whether that is a clinical trial that involves surgery in some way, or whether that’s a clinical trial that involves a new drug, whether it’s a clinical trial that’s offering a new kind of supportive care.

So, there are lots of different kinds of clinical trials that may be relevant to patients.

Katherine:                  

Are there emerging approaches for treating lung cancer that patients should know about?

Dr. Bauman:              

So, absolutely. I think that there are so many clinical trials that are going on right now for all sorts of different lung cancers.

I think one of the amazing parts about lung cancer right now is how, as I said before, how personalized it has become, and how each individual, depending all of the different factors we talked about, what treatments are best for them. But it also depends on there also may be clinical trials that are specific for that person. And so, for example, if you have a new diagnosis of Stage IV cancer, and you have an EGFR mutation or an ALK mutation, you want to know about clinical trials that are specific to that population because for you, those are what are most relevant for you.

If you have a new diagnosis of a Stage III lung cancer, then you wanna know, “What are the clinical trial options for patients who have Stage III lung cancer?” And so, there are many clinical trials that are asking, sort of, the next best question of, “How can we improve the current standard of care?” And often there really are trials in each of these different areas. So, it’s not just a one-size-fits-all.

Katherine:                  

Some patients can be fearful when it comes to clinical trials. What would you say to someone who might be hesitant in participating in one?

Dr. Bauman:              

So, I very much understand that. I think any kind of treatment can be a scary thing. But I think, as I said before, I think the more that you can understand about your cancer and understand about the science and the research, it helps you then understand where the trial fits in terms of your treatment options.

I think that if you understand what to expect from the treatment that you’re getting, and then what the plan B and plan C could look like, I think that piece of it is also important. And you know, I think that one of the hardest parts about lung cancer right now is even though we have all of these new promising therapies and multiple new approved drugs, with a diagnosis of Stage IV lung cancer, most of the time the cancer learns to grow. And so, even though we have treatments that work really well, there will be a time for most people where the cancer starts to grow, and we need to think about, “Well, why is the cancer growing?”

And often, that is the setting where clinical trials are very relevant because clinical trials are often thinking about just that, “Well, why is the cancer becoming resistant? What is different about the cancer now? And is there some change that would make it relevant for you to do one specific trial over another specific trial?”

Katherine:                  

Well, and that leads us to treatment monitoring. Once a patient has started treatment, how do you know if it’s working?

Dr. Bauman:              

So, we do regular imaging. So, once you have a diagnosis of lung cancer, a CAT scanner will become your friend. In general, depending on what stage of lung cancer you have, you will have a bunch of imaging up front, and then once a treatment plan is put into place, after that treatment has either been completed or started, you will be monitored, in general, regularly for the lung cancer diagnosis. Now, after surgery, that will be for more for surveillance to make sure that the lung cancer doesn’t come back. But if it is more in the setting of a Stage IV lung cancer, then the imaging really helps us determine, “Is the treatment working or not?”

And so, after we start a treatment, usually anywhere between six and eight weeks, we repeat imaging to see, “Is this working? Is it smaller? Is it the same? Has it grown?”

And based on that imaging, and based on how the patient is doing with the treatment, we then decide, “Do we continue this treatment, or do we need to change to a new treatment?” And so, we regularly monitor the patient’s cancer through regular imaging.

Katherine:                  

Let’s talk about patient self-advocacy. Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions. But why is it important for patients to speak up when it comes to their symptoms and their side effects?

Dr. Bauman:              

So, this, I would say, it’s a partnership. The bottom line is, and if I don’t know that something is going on, I can’t help to solve the problem. And if I don’t know about something, a new symptom that could be, potentially, majorly concerning, patients can also get really sick or even end up in life-threatening situations. And so, ignoring things or just hoping things will go away is not in a patient’s best interest.

I think that it is critical that patients are their own self-advocate. I think that I say that often, and I’ve already said that a couple of times on this, but we don’t know unless we’re hearing from them what’s going on. And so, it is so important for patients to keep us updated if they’re worried about something. Certainly, we see them very frequently, and so they can often tell us at their visits what’s going on. But overall, the in-between time is just as critical because it is often the treatments that we give can cause side effects at any time. And so, it is really important that we know about anything that’s going on and for patients to always give us a call.

I mean, that’s the bottom line is, is that if they’re worried about something, we need to know about it.

Katherine:                 

What supportive care options are there for patients who may have pain management difficulties or even emotional support?  Where do they start?

Dr. Bauman:              

So, there are often many different kinds of supportive care for patients. I would say that oncologists, of course, are one layer of supportive care. We do a lot of help with symptom management and often even pain management as well as coping and emotional support. However, there are also other people often within cancer centers that are also available to help. And this includes social workers. It also includes psychologists and psychiatrists.

And then the other thing that I think is really important to mention is that we know for patients who have lung cancer or an advanced lung cancer diagnosis, that integrating a palliative care team – a supportive and palliative care team – early into their diagnosis actually helps them live longer as well as better. They have better quality of life, and they have decreased problems with mood.

And so, we know that supportive care and palliative care, specifically in lung cancer, is particularly helpful for both patients and their caregivers. And so, it’s important for patients to also know that there is a whole team, that I think of as, sort of, an extra layer of support, that can help them with symptom management as well as with coping with the day-to-day of what can be a devastating diagnosis.

Katherine:                  

Yeah. That’s really great advice. To close, what would you like to leave patients with? Are you hopeful?

Dr. Bauman:              

So, I would say I am absolutely hopeful. I think that it is so important to know how many changes have happened in lung cancer in the last decades and how much more research is going on everyday to try to improve the care that we can deliver. And so, it’s a great time to be a lung cancer oncologist.

But we also have so much more work to be done.

Katherine:                  

Dr. Bauman, thank you so much for joining us today.

Dr. Bauman:              

Absolutely, my pleasure.

Katherine:                  

And thank you to our audience for joining us as well. Please fill out the survey that you’ll receive following the program. It helps us to plan future lung cancer programming. And thank you to all of our partners.

To learn more about lung cancer and to access tools to help you become a more proactive patient, visit PowerfulPatients.org. I’m Katherine Banwell. Thanks for joining us.

 

Navigating AML Treatment Decisions

Navigating AML Treatment Decisions from Patient Empowerment Network on Vimeo.

What factors can help determine the best treatment path for your AML? This animated video walks through important considerations that may help in navigating treatment decisions, including how genetic testing results, treatment goals and patient preference can impact your choice.

See More From INSIST! AML

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Transcript:

Hi, I’m Gina. I’m a nurse practitioner and I specialize in acute myeloid leukemia, or AML.

When diagnosed with AML, it’s important to take steps to get a deeper understanding of your disease, and the available treatment options, so that you can feel confident in your care decisions.

Before we walk through the important steps to decide on a treatment path, I want to remind you that this video is intended to help educate AML patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

OK, let’s get started.

The first step is to understand your diagnosis, so that you can find out what treatments are available to you. Unlike solid tumor cancers, such as lung or breast cancer, AML is not staged. Instead, your physician will use lab testing, including blood and bone marrow tests, to determine the subtype of your AML and if you have any chromosomal abnormalities to determine if your AML is low, intermediate or high-risk.

Knowing your risk can impact your prognosis and help establish the best treatment option for you. If you don’t know your subtype, ask your doctor for the information and if you may need further testing to reach a more accurate diagnosis.

Testing that identifies characteristics unique to YOUR AML can impact your treatment options and determine if a targeted therapy or immunotherapy might be more effective. These tests include:

  • Molecular testing
  • Cytogenetic analysis (or karyotyping), and
  • Fluorescence in situ hybridization also known as a FISH test

Before you start any treatment, it’s essential to insist that you have had relevant testing.

Next, you should understand treatment goals. The first goal of AML therapy is to get into remission. The second goal is to maintain that remission.

Induction therapy, or the first phase of treatment, is meant to induce remission. This first-line treatment kills as much of the disease as possible and returns blood counts back to normal.

Consolidation treatment, also referred to as post-remission therapy, is used to prevent leukemia cells from returning and maintain remission. In some patients, stem cell transplant acts as a consolidation therapy. In others, additional treatment options to maintain remission can be explored.

The next step is to consider your treatment options with your doctor. It’s important to understand the approaches available for YOUR individual disease. AML treatments can include:

  • Chemotherapy
  • Targeted therapy
  • Stem cell transplant
  • Immunotherapy
  • Clinical trials, which may provide access to treatments that are not yet approved.

Or, you may receive a combination of one or more of these treatments.

Once you understand the therapies that are available to you, it’s time to talk to your doctor about the risks and benefits of each option. Your doctor will also consider your age, overall health, and existing conditions before suggesting a treatment course.

So, what questions should you address when discussing your treatment goals with your doctor? Consider asking:

  • Is stem cell transplant a viable option for you?
  • Can you tolerate high-intensity therapy or is low-intensity therapy better for you?
  • How will the treatment impact your quality of life and lifestyle?
  • Are there short or long-term treatment side effects that may occur after you have completed treatment?
  • What is the plan if the first approach to treatment isn’t effective?
  • Is there a clinical trial that might be right for you?
  • Is there a member of the team, such as a social worker, that can help you understand the potential treatment costs? And is there access to financial resources that can help you if needed?

Remember that you have a role in making decisions regarding your care. Insist that all of your questions are answered when making a decision with your healthcare team. If you don’t feel supported or you don’t feel heard by your healthcare team, then it is always best to seek a second opinion.

Finally, once you have gathered all the information, it may be helpful to talk it out with people you trust, such as a partner, friend or family member, to help you make a decision that you feel confident about.

Now, how can you put this information to work for you?

  • Ensure that you have an accurate understanding of your diagnosis.
  • Make sure you have had appropriate testing to establish your subtype and risk.
  • Understand your treatment options and talk with your doctor about what’s best for YOUR AML.
  • Remember, you are a partner in your care and have an active voice in finding the best treatment for you.

Visit powerfulpatients.org/aml to learn more about AML.

Navigating Lung Cancer Treatment Decisions

Navigating Lung Cancer Treatment Decisions from Patient Empowerment Network on Vimeo.

What steps could help you and your doctor decide on the best treatment path for your individual disease? This animated video walks through key considerations, including molecular testing results, lifestyle factors and patient preference.

See More From the The Pro-Active Lung Cancer Patient Toolkit

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Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion

Why You Should Consider a Clinical Trial for Lung Cancer Treatment

Diagnosed with Lung Cancer? An Expert Outlines Key Steps


Transcript:

Hi, I’m Kendra. I’m a nurse practitioner and I specialize in lung cancer.

When diagnosed with lung cancer, it’s important to take steps to get a deeper understanding of your disease, and the available treatment options, so that you can feel confident in your care decisions.

Before we walk through the actions that can help you decide on a treatment path, I want to remind you that this video is intended to help educate lung cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

OK, let’s get started.

The first step is to understand your diagnosis—including the type of lung cancer and stage of disease—so that you can find out what treatments are available to you. Your physician will use tests, including biopsies and imaging, such as X-rays and CT scans, to ensure you have an accurate diagnosis.

The next step is to understand the approaches available for YOUR individual disease.
Depending on your stage and type of lung cancer, treatments can include:

  • Surgery
  • Radiation therapy
  • Chemotherapy
  • Targeted therapy or
  • Immunotherapy

Or, you may receive a combination of one or more of these treatments.

Other testing that can impact your treatment options is molecular testing, which is used to identify specific mutations that are unique to your lung cancer. This may help in deciding if targeted therapies are an appropriate option for you.

Before you start any treatment, it’s essential to ask your doctor if you have had relevant molecular testing.

Another option that your physician may discuss with you is clinical trials, which may provide access to treatments that are not yet approved. At different points on your path with lung cancer, it’s important to talk with your doctor about whether there is a clinical trial that could be right for you.

Once you understand the treatments that are available to you, it’s time to talk to your doctor about the risks and benefits of each option and walk through the goals of your treatment.

One of the most important factors that your healthcare team will consider is YOUR treatment goals. Remember, you are a partner in your care and have an active voice in finding the best treatment for you. Physicians also typically consider a patient’s age, overall health, and existing conditions before they suggest a course.

So, what questions should you address when you are discussing your treatment goals with your doctor? Consider asking:

  • Is the goal of the treatment to cure your disease or to obtain long-term control your disease?
  • How effective will the treatment be and how will it impact your quality of life and lifestyle?
  • What are the treatment side effects–both the short-term effects as well as long-term effects that may occur after you have completed treatment?
  • Is there a member of the team, such as a social worker, that can help you understand the potential treatment costs? And is there access to financial resources that can help you if needed?
  • Are there supportive care options that can help with symptoms and pain management at any stage of your cancer?

It also may be a good idea to consider a second, or even third opinion consultation with a specialist. And, if you don’t feel supported or you don’t feel heard by your healthcare team, then it is always best to get another opinion.

Finally, once you have gathered all the information, it may be helpful to talk it out with people you trust, such as a partner, friend or family member, to help you make a decision that you feel confident about.

Now, how can you put this information to work for you?

  • Make sure you understand your type and stage of your lung cancer and the goals of your treatment options.
  • Talk to your physician about what you’ve learned.
  • Consider a consultation with a lung cancer specialist.
  • Ask about molecular testing and what testing results mean for you.
  • Discuss whether clinical trials are an option for your cancer.
  • Visit credible online resources to stay up to date on lung cancer information.
  • Visit powerfulpatients.org/lungcancer to learn more about lung cancer.

How Can You Insist on Better Prostate Cancer Care?

How Can You Insist on Better Prostate Cancer Care? from Patient Empowerment Network on Vimeo

How can prostate cancer patients access the best care in an evolving treatment landscape? Prostate cancer survivor Jim Schraidt shares his advice for staying up-to-date about treatment developments and for accessing support and resources

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

See More From INSIST! Prostate Cancer

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How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

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Newly Diagnosed with Prostate Cancer? Consider These Key Steps

 


Transcript:

Jim Schraidt:              

The really great news is that sort of across the board, from early stage disease through metastatic prostate cancer patients, there are advances that are occurring very rapidly at this point, so rapidly that practitioners have difficulty keeping up with them.

And, honestly, those of us who do some patients support likewise have difficulty keeping up with them. I think, once again, these support groups can serve a useful function in that you have specific questions, you hear about it, you bring together a group of individuals, and somebody in that group may know something about it.

And they can tell you, they can give you information, or they can give you direct Internet links where you can find more information. The other source of information is some of the Us TOO publications, our monthly hot sheet, as well as the website.

There are a couple other websites that I personally regard as excellent. The first would be the Prostate Cancer Foundation. The second would be Prostate Cancer Research Institute. And then finally, ZERO. So, I think if you attend a support group, and talk to other guys, and look at some of these websites, I think that’s a very good starting point for research and trying to get the best and most up-to-date information possible.

There’s a lot of progress being made across the disease spectrum, and it’s very exciting. I mean, for many years, all we had was surgery, radiation, and hormone therapy. But new things are coming online all the time. There are immunotherapies that are frequently genetically based. And there’s new knowledge about the disease itself and making active surveillance available to more patients.

And this is extremely critical because many men can go on with prostate cancer, with low-grade disease, really for their entire lives, and avoid the side effects of treatment.

And even if they don’t, if they delay definitive treatment for a period of years, there may be something new that comes down the pike that is both effective and has a better side-effect profile. This is the kind of research that is a part of what Prostate Cancer Foundation is funding.

So, there’s a lot out there. There’s a lot that’s happening. And I think that should give encouragement to prostate cancer patients. In terms of somebody who is later in the process and having difficulty coping with side effects or disease progression, I think the encouragement is that there are people out there that you can talk to about it, that you’re really not alone, and there are people out there that are anxious to help you, to hear from you, and provide assistance.

For those of us who have been at it a while, we find that helping others enhances our own healing. And so, don’t be reticent about asking for help. Because it’s out there, and it can really make a difference.

How Could You Benefit from Joining a Prostate Cancer Support Group?

How Could You Benefit from Joining a Prostate Cancer Support Group? from Patient Empowerment Network on Vimeo.

What are some of the benefits provided by prostate cancer support groups? Prostate cancer survivor Jim Schraidt shares his perspective on how support groups can help patients with the emotional aspects of the disease as well as serve as a resource for information sharing.

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

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Transcript:

Jim Schraidt:              

I think there are two primary ways that support groups are helpful. In the best case, a man will come to a support group as a newly diagnosed patient. And we’re actually working with a pilot project at Northwestern in Chicago where we have a support group that’s been in existence for a little over a year at this point.

But one of things that we’re working with the urology department there on is to get the urologists to refer newly diagnosed patients to the support group. And I think the primary benefits to a newly diagnosed patient are first, sort of removing some of the anxiety by talking to people who have been through the process and reminding them that in 90 percent of the cases they have some time to do some research, talk to people, and make a good decision that they can live with.

Because all of the treatments for prostate cancer, with the possible exception of active surveillance, come with side effects that a person undergoing this kind of treatment is going to have to live with for the rest of this life.

So, it’s a decision that’s very important. And to have the best possible outcome for a patient, they need to know what those side effects are. And they need to hear from men who have actually been through it.

I think the second important function of support groups is just support; after treatment, or if a patient is unfortunate enough to have recurrence or progression of his disease. And we’re not practitioners. We’re not medical practitioners. We don’t give medical advice. But there are lots of tricks of the trade, if you will, that men who have been coping with side effects can share with other men and help them get through it.

And part of that is just having a place to talk about what they’re going through, whether it’s things that they’re embarrassed to talk with their friends about, or things where they’re having difficulty communicating with their partner. I know from experience also that anger is a big thing that many patients experience, anger, and depression, post-treatment. And for me, one of the huge benefits of a support group was finding a place where that anger could go.

Because, I mean, even the best and most well-intentioned spouse, partner, or whatever, is going to grow tired of an angry patient partner.

And that can impact communication and can isolate a patient. So, it’s really important to have a place where some of that can go. And that’s part of the second piece, as far as I’m concerned.

The whole mental health piece really is under-emphasized, under-discussed by practitioners, but is very real for a lot of men undergoing this treatment. And the good news is that, that there is help available, and you can get through this. But many, many, many times you can’t do it on your own.

And you can’t do it solely with the help of your partner many times. So, this is one way you can talk to other people who have been through it, and they may have suggestions about therapy or talking to mental health practitioners.

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones? from Patient Empowerment Network on Vimeo.

What are the ways that Us TOO International can help prostate cancer patients and their loved ones? Jim Schraidt, a prostate cancer survivor and chairman of Us TOO’s board of directors shares how his involvement with support groups evolved after his diagnosis and how Us TOO is working to improve support for both patients and care partners.

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International.

See more from The Pro-Active Prostate Cancer Patient Toolkit

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Transcript:

Jim Schraidt:              

My name is Jim Schraidt. I am now a 10-year, almost 11-year prostate cancer survivor. I was diagnosed in January of 2010 and had surgery in March of that year. Since then I’ve been involved in various support groups and some of those activities.

I found my way to a support group probably about three or four months after I was treated. And I was very active in that support group for a number of years. They helped me with a number of issues I was having at the time. And eventually I went on to become the facilitator of that group, and I’ve been in that role now for about five years.

Us TOO helped me find my initial support group. And we currently sponsor a network, a nationwide network of about 200 support groups. I became very interested in the work that Us TOO was doing, and I ran for Board, their Board of Directors. And I was elected, and I’m now finishing my sixth year on the Board and my second year as Chairman of that Board.

So, we’ve been very active in looking at the entire prostate cancer community and trying to develop new and better ways to serve patients. One of the things that we’ve accomplished in the last couple years is a partnership with a prostate cancer foundation, with is the leading private-research funder of prostate cancer research. So, we’ve worked with them to help make education about clinical trials available, for example. And they are contributing to our monthly newsletter with research news that’s actually put in laymen’s language so that people can understand it.

We’ve collaborated with other prostate cancer organizations, and we believe that this is critically important, that by working together we can amplify the patient voice and develop the best possible educational materials. So, in addition to the support groups, we have that going on. We also have a website that has a great deal of information about prostate cancer, support groups, and that sort of thing.

We are the prostate cancer sponsor for the Inspire site, which is an online community where prostate cancer patients can type in a question and have that question answered by other prostate cancer patients, or people who are knowledgeable in the field.

We actually have some practitioners that occasionally check in on that. So, then I think the final thing is that we have a couple of dial-in support groups that are for subspecialty types of patients and caregivers.

The first is called A Forum for Her, and it’s exclusively for women partners and caregivers. It gives them a separate and safe place to go and talk about the disease from a woman’s perspective. And then the second, newer dial-in support group we have is for gay men. And this is a group of men that for various reasons are less comfortable than they need to be in a broader kind of support group.

So, we’re working on that as well. One of our key initiatives as we look to celebrating our 30th year next year is support group leader education. And the goal here is to teach support group leaders best practices and make resources available to them so that they can either direct patients where to find information, or they can go back and find information and give that to patients directly.

So, the goal, once again, is to bring some standardization to the support group experience, and make sure that men are getting the best possible support and information.

Which CLL Treatment Approach Could be Right for You?

Which CLL Treatment Approach Could be Right for You? from Patient Empowerment Network on Vimeo.

Which CLL treatment approach might be best for your individual disease? This animated video walks through important considerations that help guide treatment decisions, including genetic testing results, lifestyle factors and patient preference. 

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Transcript:

Hi, I’m Christy. I’m a nurse practitioner and I specialize in chronic lymphocytic leukemia, or CLL. With a variety of available treatment options, CLL patients often wonder which approach might be best for their individual disease.

Before we walk through the information that goes into choosing a treatment approach, I want to remind you that this video is intended to help educate CLL patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

So, how is a treatment path determined?

CLL physicians will typically consider several key factors to help guide the decision.

When many CLL patients are first diagnosed, their medical team may use an approach called “watch and wait” or “active surveillance.” This means that treatment won’t begin immediately. Their healthcare team will monitor their CLL via in-person visits and lab testing. And, some patients may never even need treatment, depending on their individual situation.

But, if bloodwork indicates advanced disease, enlarged, bothersome lymph nodes develop, or, if symptoms like fatigue and night sweats are negatively affecting a patient’s daily life, then it may be time to treat the CLL.

Physicians typically consider a patient’s age, overall health, and existing conditions before they suggest an approach. There are also several tests on the CLL cells that may help guide treatment decisions.

Physicians use immune globulin heavy chain gene, also known as IGHV, mutational analysis to determine whether a patient is IGHV mutated or unmutated.

In IGHV mutation analysis testing, being “mutated” is a favorable finding. 

If a patient’s IGHV status is mutated, and, depending on other factors such as age and overall health, the physician may recommend a treatment called FCR. FCR stands for the drugs used in this approach, which are two chemotherapy drugs combined with a targeted treatment that is a monoclonal antibody.  

However, it is important to realize that due to side effects and other risks, chemotherapy is not for everybody. Non-chemotherapy treatments work very well for IGHV mutated patients as well as unmutated patients.

If a patient has unmutated IGHV, then a targeted treatment or a clinical trial might be more effective.

Molecular testing, also known as genetic testing, can identify specific genes, proteins, chromosome changes, and other factors unique to your CLL.

The results can provide your healthcare team with information related to prognosis, risk and which therapy may be most effective in treating your disease.  

One of the most widely used tests is call a FISH test and it looks for specific changes in the chromosomes of your CLL cells.  These specific changes can help understand how well certain treatments are likely to work for you. 

For example, patients with the chromosome abnormality “17p deletion” may have higher-risk disease and will not respond well to chemotherapies such as FCR. An oral targeted treatment approach or a clinical trial will be more effective in patients with 17p deletion.

There are several types of targeted treatments that are currently approved to treat CLL including:

  • Monoclonal Antibodies, which work by targeting specific proteins on cancer cells.
  • And, Kinase Inhibitors, which work by blocking proteins that tell the cancer cell to grow and survive.
  • A combination of treatment approaches may also be considered.

Before you start any treatment, it’s essential to ask your doctor if you have had relevant CLL genetic testing, including FISH testing, and what the results could mean for you.

Finally, one of the most important factors that your healthcare team will consider is YOUR treatment goals. 

It’s very important to consider a treatment’s course and potential side effects.

With the many options available today to treat CLL, you will be able to get effective treatment. How your treatment choice affects your other health conditions and your lifestyle is essential.

Remember, you are a partner in your care and have an active voice in finding the best treatment for you.

When treatment is discussed may be a good time to consider a second opinion or a consult with a specialist.  If you don’t feel supported or an active member of your team, then it is always best to get another opinion if you are able.

So, how can you put this information to work for you and help improve your care?

  • Talk to your physician about what you’ve learned.
  • Ask about testing mentioned in this video and whether you need to be retested over time.
  • Discuss clinical trials with your physician.
  • Visit credible resources to stay up to date on CLL information.

Visit powerfulpatients.org/cll to learn more about CLL.

Metastatic Breast Cancer Treatment and Research News

Metastatic Breast Cancer Treatment and Research News from Patient Empowerment Network on Vimeo.

As metastatic breast cancer testing approaches continue to expand, new and promising treatments have emerged. Dr. Lisa Flaum shares information on recently approved treatment options and the role of genetic markers in accessing targeted therapy. 

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

There are a lot of new and promising treatments for metastatic breast cancer. So, the treatments in general and the novel treatments and studies really vary based on the subset of metastatic breast cancer. So, when we’re making our treatment decisions, a lot of it is defined by those markers. So, if someone has a tumor that is hormone receptor, estrogen and progesterone receptor positive, and HER2-negative, the mainstay of treatment is typically drugs that target estrogen and often partnering drugs that target estrogen with other more novel or newer treatments.

So, just in the last five plus years, there have been a number of new drugs and even new drug categories that we didn’t have previously. So, for that population of the estrogen receptor positive tumors, the biggest breakthrough over the last number of years has been a class of drugs called CDK4/6 inhibitors. So, that includes drugs like Ibrance, Kisqali, Verzenio. And they’ve emerged as a very important and effective and often a recommendation for our first-line treatment for these patients combined with anti-estrogen therapies that have vastly improved outcomes for patients. So, a much higher percentage of patients respond to these drugs, the duration of the responses has extended quite a bit. And importantly, patients tend to tolerate this drug class really, really well.

 So, for many patients starting out with that diagnosis, this type of drug class is going to be part of the discussion. Even in the last year, another drug category has emerged with approval of a new drug called alpelisib, which is something called at PI3 kinase inhibitor. So, again, back to defining the options based on the molecular profile of the tumor. So, this newer oral drug also partnered with anti-estrogen therapy, has been an important breakthrough for the treatment of patients who harbor this specific molecular abnormality. So, important to define whether that’s an option by some of these molecular testing.

There’s also newer drugs and studies of newer drugs that affect the estrogen receptor in different ways than some of our traditional medications.

And this is an ongoing area of significant research. So, that’s the estrogen receptor positive tumors.

For patients who have HER2-positive tumors, these are tumors that tend to be more aggressive, that tend to require more aggressive upfront treatment, which usually involves drugs that specifically target HER2. So, again, defining what’s driving the tumor and hopefully having drugs available that can target that specific abnormality. So, HER2 targeted drugs have evolved quite a bit over the last couple of decades.

Initially, we just had a drug called Herceptin and then a drug called Perjeta or pertuzumab was developed. Then more recently a drug called Kadcyla. And then even in just the last six to 10 months, two new drugs that target that HER2 protein. One of them is called tucatinib, the other one is called Enhertu. They’re not necessarily appropriate for the first line of treatment, but really sort of expands our toolbox in terms of how we treat these types of tumors. And these are developments that have occurred, for one of the drugs, just in the last six months, and the other within the last year. So, a lot of progress.

And then for the third subset of tumors, which are the triple-negative tumors, those are the ones that do not over-express estrogen, do not have estrogen or progesterone receptors, and don’t overexpressed HER2. This has been historically an area of unmet need. So, tumors where we can’t use anti-estrogen therapies, we can’t use HER2 targeted drugs. And so, the main stay has always been chemotherapy. And even for this subset, we’ve had progress.

So, one of the drug classes that’s been approved in the last couple years for triple-negative breast cancers is immunotherapy. So, immunotherapy has gotten a lot of press. It’s been really breakthrough treatment for a lot of different cancers, has lagged behind to some degree in breast cancer, but has become now one of the early treatment options for people with metastatic disease, specifically those that harbor a molecular marker, an immune marker, something called PD-L1. So, another example of the tumor’s biology dictating potentially one of the treatment options.

There have been other drugs that have been approved for triple-negative breast cancers in women who have BRCA mutation, so who have germline genetic predisposition to breast cancer. And that opens another array of treatment tools that have been approved in the last few years. And then more recently, just over the last six months, another drug that’s been approved for triple-negative breast cancer, which is a drug called sacituzumab, again, not first treatment, but something that defines potentially future lines of treatment. So, big picture, there has been a lot of progress that increasingly alters our treatment tools for patients and allows us to have sequential treatments that can be effective if their given treatment is no longer effective.

Metastatic Breast Cancer Treatment Decisions: Which Path is Best for You?

Metastatic Breast Cancer Treatment Decisions: Which Path is Best for You? from Patient Empowerment Network on Vimeo.

 For each metastatic breast cancer patient, there are several variables to consider to access the best treatment path. Dr. Lisa Flaum explains key factors to consider, and discusses how the risks and benefits are weighed when making treatment decisions for an individual patient.

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

So, when we’re determining a treatment approach, there are a number of variables. So, to some degree, based on a patient’s individual characteristics, their age, their other health issues, may guide what treatments are available or indicated or even desirable from a patient’s standpoint. To some degree, the locations and extent of disease are important. So, if someone has cancer and that’s causing a particular symptom, with bony sites being a particular example, there may be a role for something targeted; Something like radiation, and in rare cases, surgery to target a specific symptomatic or worrisome spot of metastatic cancer.

In general, the mainstay of treatment for metastatic breast cancer is what we call systemic treatment or medical treatment, treatment that’s going to go everywhere and treat the cancer wherever it is. In some situations, we may be deciding between more or less aggressive treatment, and the locations and sites of disease may be important in determining that. If someone has extensive disease, for instance in a vital organ like the lung, the liver, the brain, we may start with something more versus less aggressive to try to get it better under control quickly. Whereas people with more limited metastatic disease may be able to start with something less aggressive.

And then beyond that, a lot of the decision-making is based on those molecular markers that I alluded to, which are defined by the hormone receptor status. So, whether the tumor expresses those estrogen and progesterone receptors, and whether the tumor over-expresses HER2. And then to a lesser degree, based on other markers that may be defined by additional tests.

So, every treatment discussion we have is a two-way street. So, our job is to present the data, present options, present recommendations. And often, we have an opinion on where we would fall and if there are a number of different options. But to me, it’s a collaborative discussion. And if there are options, it’s weighing what potential benefit do we get from a single option or from adding something to that particular option versus what are the downsides? And some of it is discussion about logistics. Do we do something IV versus oral? Is there a particular side effect that we’re hoping to avoid, such as hair loss? Which of course, we’re trying to avoid. Some treatments may have a higher likelihood of working, but a higher likelihood of causing hair loss. That may factor into our decision.

So, whether it’s the first decision point when we’re deciding on preliminary therapy or future decision points as we go through this journey, there is always a discussion about this is where we are, these are what our options are. Here’s how we’re going to weigh the pros and cons. And then it comes back to a collaborative decision about how we weigh the risks and rewards and where we’re going with an individual patient.

So, clinical trials are always part of at least the conversation, so they’re always a consideration at each step of our discussion. So, from a preliminary treatment standpoint, we’re always going to go through here are our standard options. Here’s, again, what we think is most appropriate. And if there’s a clinical trial that’s appropriate in that scenario, we’ll lay that out there as an option. So, a clinical trial is always worth discussing. It’s always worth asking that your doctor, “Is a clinical trial appropriate for me at this point?” But it’s not always the right recommendation.

So, there are a lot of scenarios, especially at the beginning of treatment for metastatic disease where we have so many options, and so many new and novel treatment options and drugs that have been approved fairly recently that have defined the standard of care, that the standard is going to be often what we recommend. And a clinical trial may be something that we would use if that treatment fails to work or at some future point down the line. And at other points in time, we have very good, appropriate clinical trials that could be indicated at any step along the way. So, it’s worth the discussion. Whether it’s the recommendation or not depends on the circumstances, it depends on the time. What we have today was very different than what we might’ve had available six months ago and six months from now. But clinical trials are out there, and if the location that a patient is going doesn’t have access to clinical trials, it’s always reasonable to ask too, “Should I be going somewhere else to see if a clinical trial is appropriate?”

Essential Testing Following A Metastatic Breast Cancer Diagnosis

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

Following a metastatic breast cancer diagnosis, what tests are essential? Dr. Lisa Flaum reviews the role of key tests, and the impact of molecular (genetic) test results on treatment decisions.

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

When someone has either a diagnosis or a suspected diagnosis of metastatic cancer, meaning a diagnosis of cancer that has spread somewhere outside of the breast. And the most important initial step is establishing a tissue diagnosis. So, we could have our suspicions based on imaging, based on symptoms, but the most important thing is to confirm it. And usually that confirmation involves some type of tissue biopsy. So, collecting cells, examining them under the microscope, making sure that the diagnosis in fact, is cancer. Making sure that the cancer has spread from the breast, which is something that is definable under the microscope for the most part. And then evaluating various molecular markers within the tumor itself that are critical to guiding treatment.

So, in addition to the tissue diagnosis, the other important first step is what we call cancer staging. So, establishing the extent of the tumor within the body, which typically involves some type of scans, which may be variable depending on the situation or depending on the physician often could be a CT scan and a bone scan, maybe a PET scan. There may be an MRI.

So, a number of different tests that help us establish where the tumor is at baseline, so we can better understand the anatomy, but also to follow down the road to establish whether any given treatment is working. There are also maybe discussions of other types of molecular testing beyond what we determined in terms of the traditional biologic markers. You might hear the terms next generation sequencing tests like Foundation, Guardant, Tempus, which better define the cancer’s biology, which increasingly is becoming useful in terms of targeting treatment to someone’s specific cancer.

So, the molecular tests are looking at a few different things. So, first and foremost from a breast cancer standpoint, the most important basic molecular markers are what we consider to be the four main receptors, which is the estrogen and progesterone receptor, which dictates whether a given tumor is driven by estrogen and importantly dictates whether anti-estrogen therapy is going to be an appropriate component of the treatment. The other basic marker is called HER2, which is a protein that’s over-expressed.

In about 20% of breast cancer patient cells, and it’s also very critical in terms of guiding treatment. For specific types of breast cancer, once we know those preliminary molecular markers, then there’s an array of other types of anomalies within the tumor itself that could help to guide specific treatment. So, a couple of examples, and I can talk about that when you talk about treatment. If someone has a genetic predisposition to breast cancer with a BRCA mutation, there’s a specific treatment that might be appropriate. More recently, there’s another abnormality that can be detected by these tests called a PI3-Kinase mutation that identifies a population of patients who could be appropriate for another type of targeted therapy. So, for an individual, knowing what their particular profile is, whether or not those treatments are going to be indicated right at the beginning of treatment or maybe something that we use down the road. Inevitably, they’re going to help us understand what our tools are when we’re helping to make those decisions.

What Could Advances in Breast Cancer Research Mean for You?

What Could Advances in Metastatic Breast Cancer Research Mean for You? from Patient Empowerment Network on Vimeo.

What should metastatic breast cancer patients know about emerging approaches to treatment and care? Dr. Julie Gralow reviews developments in metastatic breast cancer research, including advances in genetics, subsetting disease and personalized medicine.

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

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Transcript:

Katherine:                  

There have been so many advances in breast cancer research. What are you excited about in research right now?

Dr. Gralow:                

Well, every single drug that’s been approved, every single new regimen that’s been approved in breast cancer is the direct result of clinical trials, and this is a major part of my career, is to help patients get access to clinical trials and run important clinical trials that could lead to new discoveries – is this regimen better? What’s the toxicity?

Because until we have a cure for breast cancer, we need to do better, and we need to research better treatment options. So, doing trials, having access to clinical trials where you can participate, help move the science forward is key.

I think where we’re moving with breast cancer is the more we’re understanding the patient and the tumor, the more we’re realizing every single breast cancer is different, actually, and whereas when I started my training 20-plus years ago, breast cancer was breast cancer – we weren’t even using HER2 yet, we were just learning how to use estrogen receptor, and we kind of treated everything the same – now, we’re subsetting, and subsetting, and subsetting. Even in triple negative breast cancer now, which is about 18-20% of breast cancer, we’re subsetting.

Does that triple negative breast cancer have PD-L1, which is associated with being able to get immunotherapy drugs? Does it express androgen receptor? Because sometimes, even a breast cancer that doesn’t have estrogen or progesterone receptor can express the androgen receptor, like prostate cancer, and we can use some prostate cancer drugs. So, even triple negative breast cancer we’re subsetting and subsetting, and could that triple negative breast cancer be associated with a BRCA1 or 2 mutation, and then we can use the PARP inhibitors?

So, I’m actually really excited about that we’re learning more and more, and subsetting, and not treating breast cancer as one size fits all, and if we can better tailor the treatments to the patient and the tumor, that we are going to get to the point where I can tell my patients yes, we can get cures in metastatic breast cancer.

What Is the Role of Genetic Testing in Breast Cancer?

What is the Role of Genetic Testing in Breast Cancer? from Patient Empowerment Network on Vimeo.

Breast cancer expert Dr. Julie Gralow discusses the role of genetic testing in metastatic breast cancer care, reviewing the impact of inherited–and acquired–genetic mutations on treatment options.

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

 

What Could Metastatic Breast Cancer Genetic Testing Advances Mean for You?

What Are Essential Genetic Tests for Metastatic Breast Cancer Patients?

Metastatic Breast Cancer: Debunking Common Misconceptions

 

Transcript:

Katherine:                  

All right. Dr. Gralow, when you meet with patients, what are some of the more common misconceptions that you hear related to diagnosis?

Dr. Gralow:                

Well, I think people do confuse – especially at an early diagnosis – that the metastases, the travel to the local lymph nodes, is not the same as a metastatic breast cancer, so we spend some time talking about how it’s still curable and not considered a distant metastasis if the lymph nodes are in the armpit or up above the collarbone, and so, that’s something that we spend some time talking about.

This whole term of “metastatic recurrence” – unfortunately, when you start looking online and get your information from Dr. Google, you read right away that it’s no longer curable, and in 2020, yes, that’s true. That’s probably the most specific statement that we can make. We are not going with curative intent, which means we treat for a defined amount of time, and then all the disease goes away, and we stop treatment, and then you go on with your life, and it never comes back. That would be cure.

But, I think it’s really important to point out that much of metastatic breast cancer can be highly treatable, and what we hope to do – and certainly, at least a subset of metastatic breast cancer – we want to convert it more to what we would call a chronic disease, and so, think of it more like hypertension, high blood pressure, or diabetes. These are diseases that we generally don’t cure with treatment, but that we can control with drug therapy, which sometimes has to be adjusted, and if we don’t control it, we can get some bad complications.

So, that’s not all metastatic breast cancer, unfortunately – we can’t convert all of it to something where we can use a therapy for a long time that keeps it in check and where you have a pretty good quality of life – but we’re hoping that more and more, we’re getting targeted therapies and more specific treatments to patients so that we can convert more patients to a more chronic kind of situation.

Katherine:                  

Many people are confused about genetic testing. They often think that it relates to ancestry or physical traits like hair and eye color. What’s the role of genetic testing in breast cancer?

Dr. Gralow:                

Well, you can do genetic testing of the patient’s inheritance, which is how most people think of genetic testing, and that’s actually really important and increasingly important in metastatic breast cancer to do your own inheritance. Have you inherited a gene that was associated with how your cancer developed? Because now, we actually have a class of drugs called PARP inhibitors that are approved for tumors that have a BRCA1 or BRCA2 mutation with them. Most of those mutations were inherited, but not all. Sometimes they can develop as well.

So, now, when my patient – if she didn’t previously have genetic testing for an inherited risk for breast cancer either coming from mom or dad’s side of the family, a lot of people do have that up front, especially if they’re younger at diagnosis or they have a lot of family members with breast cancer. If she didn’t have that genetic testing done previously, at the time of the metastatic occurrence, I’m going to recommend that that be done because knowing if the cancer is associated with one of these DNA repair genes – BRCA1, BRCA2, some other genes – we have a new treatment option, which is an oral pill that actually is highly effective if the tumor has a mutation in one of these.

But, we can also – so, that’s genetic testing of the patient’s own DNA, but we can also do what we call genetic testing – or genomic testing, if you will – of the genes of the cancer. What were the changes in the DNA at the gene level that caused a normal breast cell over time to develop into a cancer cell that’s now growing without responding to our body’s checks and balances? So, what were those mutations, deletions, or amplifications in the tumor itself?

So, we’ve got the patient’s genetics, we’ve got the tumor’s genetics, and both of those come into play when we’re making our best treatment recommendations and trying to understand what the right approach is.

Katherine:                  

How is testing administered?

Dr. Gralow:                

So, for our inherited testing, those gene changes can be found in every cell in the body, so we can do that from a simple blood test where we just look at the blood cells. We can actually do it with our sputum and with a cheek swab, even. You can get enough of the DNA from the inside of the mouth to do that.

For a tumor’s genetics, we need some of the tumor, so that’s either done with a biopsy into the metastatic site or, as I mentioned before, increasingly, we’re exploring the potential for a liquid biopsy – so, drawing some blood and then trying to find pieces of the tumor that are shed into the blood.

Factors That Guide a Metastatic Breast Cancer Treatment Decision

Factors that Guide a Metastatic Breast Cancer Treatment Decision from Patient Empowerment Network on Vimeo

Dr. Julie Gralow discusses factors that affect metastatic breast cancer treatment decisions, including the cancer’s biology, the overall health of the patient, and treatment side effects.

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

 

What Could Metastatic Breast Cancer Genetic Testing Advances Mean for You?

What Are Essential Genetic Tests for Metastatic Breast Cancer Patients?

Metastatic Breast Cancer: Debunking Common Misconceptions

 

Transcript:

Katherine:                  

Well, Dr. Gralow, what other factors should be taken into consideration with a treatment route?

Dr. Gralow:                

I always like to think of the treatment decision as relying on three factors, and the first relates to the tumor factor, the cancer factor.

So, we talked a lot about the biology, the estrogen receptor, the HER2, the genomic profiling. So, that’s critical, but there are two other components that we need to really strongly consider when trying to devise the right treatment regimen. One of those is patient factors, and not just the patient’s genetics, but are they pre- or post-menopausal?

What is the age? Where are they in life? Are they young with young kids? Are they working, and is that an important priority for them? Are they older and with grandchildren, and they don’t need to work? What is it that would be critical? What are the patient’s priorities here, and what are their fears, what are the things they would – what would be really important as we plan a regimen? And so, the patient factors which would be patient priorities and where they are in life right now.

And then, there’s factors related to the treatment itself, which would include not just how effective it is, but – and, this is really important when trying to decide regimens – what are the side effects of a regimen? For some patients, hair loss is a big deal, and we can put it off as long as possible – maybe choosing the first couple regimens don’t cause hair loss sometimes.

But, for other people, that doesn’t matter to them. For some, we have oral – some regimens, and that could keep them out of the infusion room, and others actually – I’ve had patients who actually like coming into the infusion room regularly so that they can review the side effects and get the reassurance provided by it. So, we’ve got different route of administration of the drugs, different side effects. If you already had, for example, a neuropathy – a numbness/tingling of fingers and toes – from treatment that you might have gotten for early-stage disease, we’d probably want to avoid drugs where that’s their major side effect in the metastatic setting and that would increase that even further.

We’ve got some drugs that cause a lot of toxicity to our GI system – nausea, vomiting, or diarrhea – and other drugs that don’t. And so, understanding what symptoms the patient already has and actually tailoring the treatment based on some of the side effects of the drug could also be done, as well as how they’re administered. So, again, patient factors, tumor factors, and then, factors related to the treatment itself all come into play when we make decisions.

Katherine:                  

There have been so many advances in breast cancer research. What are you excited about in research right now?

Dr. Gralow:                

Well, every single drug that’s been approved, every single new regimen that’s been approved in breast cancer is the direct result of clinical trials, and this is a major part of my career, is to help patients get access to clinical trials and run important clinical trials that could lead to new discoveries – is this regimen better? What’s the toxicity?

Because until we have a cure for breast cancer, we need to do better, and we need to research better treatment options. So, doing trials, having access to clinical trials where you can participate, help move the science forward is key.

I think where we’re moving with breast cancer is the more we’re understanding the patient and the tumor, the more we’re realizing every single breast cancer is different, actually, and whereas when I started my training 20-plus years ago, breast cancer was breast cancer – we weren’t even using HER2 yet, we were just learning how to use estrogen receptor, and we kind of treated everything the same – now, we’re subsetting, and subsetting, and subsetting. Even in triple negative breast cancer now, which is about 18-20% of breast cancer, we’re subsetting.

Does that triple negative breast cancer have PD-L1, which is associated with being able to get immunotherapy drugs? Does it express androgen receptor? Because sometimes, even a breast cancer that doesn’t have estrogen or progesterone receptor can express the androgen receptor, like prostate cancer, and we can use some prostate cancer drugs. So, even triple negative breast cancer we’re subsetting and subsetting, and could that triple negative breast cancer be associated with a BRCA1 or 2 mutation, and then we can use the PARP inhibitors?

So, I’m actually really excited about that we’re learning more and more, and subsetting, and not treating breast cancer as one size fits all, and if we can better tailor the treatments to the patient and the tumor, that we are going to get to the point where I can tell my patients yes, we can get cures in metastatic breast cancer.

How Genetic Mutations Affect Metastatic Breast Cancer Prognosis and Treatment

How Genetic Mutations Affect Metastatic Breast Cancer Disease Progression and Prognosis from Patient Empowerment Network on Vimeo.

Dr. Julie Gralow explains the impact of genetic mutations on metastatic breast cancer progression and prognosis, including how DNA repair genes function. 

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

 

Metastatic Breast Cancer Staging: What Patients Should Know

What Are Essential Genetic Tests for Metastatic Breast Cancer Patients?

Metastatic Breast Cancer: Debunking Common Misconceptions

 

Transcript:

Katherine:                  

You’ve been referring to a number of terms. Patients may have heard the BRCA or “braca” that relate to breast cancer in genetics. Would you give us an overview of common mutations in breast cancer?

Dr. Gralow:

So, of the mutations that we can inherit, the first two that were discovered were BRCA1 and BRCA2, and for all breast cancer – not just metastatic, but all breast cancer – we think that maybe 5-10% of breast cancer is the direct result of the inheritance of a strong gene that gives you a high – not 100%, but a high likelihood of developing breast cancer.

So, for BRCA1 and 2, these two genes are associated predominantly with breast and ovarian cancer, and if you live out your normal lifespan, you could have up to a 75-80% chance of getting one of those two cancers, and breast cancer being more common. Also, some association with some other cancers including, interestingly, prostate cancer, which we’re learning more about.

So, BRCA1 and 2 are the most common, and they tend to be found – because they have such a high association with the risk of breast and ovarian cancer, they tend to be found in families that have a lot of other breast cancers, and also breast and ovarian cancer presenting at a younger age. So, you’ve inherited a gene that leads to a high predisposition, and the cancer occurs earlier.

So, whereas the average age of diagnosis of breast cancer in the U.S. is 61-62 most commonly, in a patient who’s inherited a BRCA1 or 2 gene mutation, it’s closer to 40-42 – so, a lot younger. And then, there are a variety of other genes that can be inherited that are either much less common or have a weaker link. So, for example, there are genes called CHEK2 or PALB2, ATM, P53 – I just mention that because some of the listeners will potentially have one of those mutations or have heard it. Those are either rarer or they’re associated with a weaker chance of getting cancer.

So, those might be more commonly found in a family that doesn’t have a lot of cancer in it because a carrier – the mother or the father – and their other relatives would have maybe only a 30% chance of getting breast cancer in some cases. So, there would be a lot of carriers who don’t get cancer.

So, as I mentioned earlier, I think it’s really important – especially right now in metastatic breast cancer – that pretty much everybody, even if you didn’t have a strong family history, even if you weren’t diagnosed at a young age, get tested because if we find one of these inherited mutations, we now have some additional treatment options, especially right now, approved for BRCA1 or 2, but clinical trials going on for many of these other genes.

Katherine:                  

How do these mutations affect disease progression and prognosis?

Dr. Gralow:                

So, most of the genes I’ve mentioned – in their normal state, they’re critical, actually. They’re called DNA repair genes, and their job in our life is when we accidentally make a mistake when we’re replicating our DNA and two cells are dividing, if there’s a mistake in the DNA, they go in and repair it. And, we’ve got all kinds of mechanisms to try to prevent mutations from happening as cells divide, and BRCA1 and 2 are a key part of that, and so, they’re fixing it.

So, if you inherit a mutation in one of those genes, you still have some ability to repair any routine mistakes that are being made, but over time, you have less ability, and then, if you get a cancer that has a deficiency in BRCA1 or 2, those cancers can be more sensitive to certain kinds of chemotherapy that affects DNA repair.

So, for example a class of chemotherapy agents called the platinum drugs – carboplatin and cisplatin – may be more effective in BRCA1- or 2-mutated cancers, also more generally in triple negative breast cancer because they can be more similar to BRCA1-mutated cancers in a lot of ways.

So, to go back to your original question, once a cancer has developed in a patient who has a BRCA1 or 2 mutation, we treat that cancer for what it is. So, it might have developed estrogen – have estrogen receptor on the surface or HER2, so we treat it as the subtype that developed, and actually, the chance of cure is just the same for BRCA1-associated breast cancer as it would be for one that doesn’t have a BRCA.

But, the chance of getting a second breast cancer – a totally new breast cancer – would be higher unless you chose to remove both of your breasts and the bulk of your breast tissue. So, decisions like surgery – if you had a known BRCA1 mutation, we’d treat the cancer you have now aggressively and for cure, but when you talk about your surgery options, we’d say doing more aggressive surgery, like removing both of your breasts – that’s not going to improve your chance of surviving the cancer you have now, but it will markedly reduce the chance of getting a second breast cancer.

So, you could consider that as an option for surgery – not to improve your chance of this cancer, but to reduce the chance of another breast cancer. So, your surgery decisions might be impacted by knowing your BRCA1 or 2 mutation. And then, clearly, if you had metastatic breast cancer, knowing if you had the option of a PARP inhibitor, one of the drugs in that class could be – you could have a different treatment option for drug therapy.

What Could Metastatic Breast Cancer Genetic Testing Advances Mean for You?

What Could Metastatic Breast Cancer Genetic Testing Advances Mean for You? from Patient Empowerment Network on Vimeo.

How do genetic testing advances impact metastatic breast cancer patients? Dr. Julie Gralow discusses these advances, including treatment developments, and the importance of retesting over time. 

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance. More about this expert here.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

 

How Genetic Mutations Affect Metastatic Breast Cancer Disease Progression and Prognosis

Factors That Guide a Metastatic Breast Cancer Treatment Decision

How Can You Advocate for the Best Breast Cancer Care?

 

Transcript:

Katherine:                  

What advances have there been in testing?

Dr. Gralow:                

Well, it used to be – just going back a couple of years ago – that we didn’t do a lot of this genetic testing or genomic profiling of the tumor because we didn’t have many – the term is an “actionable mutation.” So, if we found something, would we do something with it? Did we have a drug we could use to do it? But, more and more and more, even in breast cancer, we’re finding actionable mutations that would drive therapy.

For example, in estrogen receptor positive breast cancer, we have a new class of targeted therapies called PI 3-kinase inhibitors – a drug called alpelisib or Piqray was approved in the last couple of years in that category – and it only is effective in estrogen receptor positive breast cancer that has a mutation in the PI 3-kinase gene. So, that would be something we’re looking for in the tumor’s genes, and actually, we need to know that there’s a mutation to even get the drug approved for treatment because it doesn’t work if you don’t have that mutation.

Increasingly, we’re finding some changes that can happen in the estrogen receptor gene and the HER2 gene, interestingly, so that you can have estrogen receptor expressed on your tumor, but over time, that tumor might develop an estrogen receptor mutation so that it stops responding to certain drugs that target the estrogen receptor.

And so, that’s called an ESR1. That’s the name of the estrogen receptor gene – an ESR1 mutation – and that would tell me probably not going to respond as well to a drug in the class we call aromatase inhibitors, but might respond better to a drug in the class that we call the selective estrogen receptor degraders like fulvestrant or Faslodex, is the name of a drug in that class.

We’re also finding that you can have what we call activating mutations in HER2, and they can be present whether the tumor overexpresses HER2 or not, and we’ve got some ongoing clinical trials looking at if the tumor doesn’t have extra HER2 on its surface – so, it doesn’t have extra HER2 protein, but at the gene level, it’s got an activated HER2 gene – we can use certain types of HER2 therapy to treat it, and we’re testing that right now in clinical trials.

So, could we even use some HER2 drugs even though technically, the tumor would be classified as HER2 negative? So, fascinating increasing information that we’re understanding, and I also mentioned before we can inherit mutations in genes such as BRCA1 and 2, but fascinatingly, the tumor can acquire those mutations. Even if we didn’t inherit a mutation, we can see mutations in the BRCA1 and 2 gene – we call those somatic as opposed to germline mutations. So, “germline” means it’s in every cell in your body, but “somatic” means the tumor somehow acquired this over time.

And so, we’ve done – we just presented some very early results of a trial, and we’re expanding this trial, looking at if you didn’t inherit a BRCA1 or 2 mutation, so technically, you don’t qualify for a PARP inhibitor, but if the tumor acquired a mutation and we can prove that with testing the tumor’s DNA, then we have seen responses from these PARP inhibitors, so that opens up another whole class of treatments, and there are other DNA repair genes that actually may be qualified as well that we can inherit or that can be acquired by the tumor.

So, more and more, we’re doing this genomic profiling, and it is leading to results that would give us possible treatment options.

Katherine:                  

Dr. Gralow, the goal of this program is to provide the confidence and tool for patients to advocate for the essential tests to get best care personalized to them. Are there specific tests that patients should make sure they have?

Dr. Gralow:                

Well, there are a lot of assays out there to do this genomic profiling or genetic testing of the tumor, so I don’t promote any one. Various institutions do it and do it well, various companies do it, but I think every metastatic patient should have the tumor looked at in this kind of profiling.

I also think every metastatic patient should advocate for having a biopsy of their cancer, and if a biopsy cannot be done safely in the recurrence, then see if they could get a liquid biopsy – have blood drawn to find it. So, I think that patients should be asking about this. Sometimes, insurance won’t always cover it, and so, my job as a treating physician is to advocate for that, to do an appeal.

More and more, because we have so many actionable mutations in breast cancer now, I’m not having insurance decline, but occasionally, it does, and then it’s our job as the healthcare providers to make the case that yes, this will impact the patient, and yes, it should be covered by insurance.