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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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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.

 

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

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.

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

Newly Diagnosed with Prostate Cancer? Consider These Key Steps from Patient Empowerment Network on Vimeo.

For those who are newly diagnosed with prostate cancer, figuring out what to do next can be overwhelming. Prostate cancer survivor Jim Schraidt outlines advice for patients to encourage self-advocacy and to access resources and support.

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

Related Resources

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?

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

How Can You Insist on Better Prostate Cancer Care?


Transcript:

Jim Schraidt:

If you’re newly diagnosed, get a second opinion on your biopsy slides. Because reading those slides is as much an art as it is a science. And we’ve had people who will come to our support groups who then went on to have their slides reviewed on a secondary basis. And it’s changed their diagnosis. In one case, a guy discovered that he actually did not have prostate cancer.

And in other cases, it’s changed the grading of the cancer that’s identified in the biopsy, which of course then impacts treatment decisions, whether it’s active surveillance, surgery, radiation, or systemic therapy. So, that would be the first thing. I think the other thing, and I that think this is true for most medical issues, is to get a second opinion, take the time to get a second opinion.

And in the case of prostate cancer, try to do it at a medical center that takes a multi-disciplinary approach to the disease. So, you would be meeting at the outset with a urologist, a radiation specialist, and perhaps a medical oncologist who can really take you through the options, the treatment options for your situation.

And then I guess the final of three items that I would say is find a support group. And even if you want to just join one of the virtual groups and listen and learn, that’s perfectly fine. But learn about the disease you have, and learn about the treatment options, and learn the things that you need to ask your medical practitioners to help you get the best outcome.

Because the happy patient is going to be the one that knows what he’s getting into and makes and accepts that as part of his decision and can focus after treatment on healing and not on treatment regret.

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.

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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. Learn more about Jim Schraidt here.

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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.

Caregiver Support: Taking Care of YOU

Caregiver Support: Taking Care of YOU from Patient Empowerment Network on Vimeo.

Prostate cancer caregivers support patients in many ways, but also need support for themselves. Social worker Linda Mathew details the role of caregivers and shares resources to help them maintain their own self-care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

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Transcript:

Linda Mathew:

So, caregivers have a really important role in caring for their loved ones, so whether it’s their spouse, or a sibling, or a child, they – their role 1). Is to advocate as well for the patient in terms of saying, “Hey, you know what? Let me call the doctor’s office. This side effect was on the list, but I’ve noticed that it’s ongoing, so let me reach out to the office for you if you’re not feeling well.”

They are the eyes and ears for their patient or for their loved one in terms of just saying, “Something is not right. Let me call.” And, most of our nurse practitioners or nurse office practice nurses will say to the caregiver, “You are our eyes and ears when you’re at home. When the patient is here, we’re the eyes and ears for that person to assess what’s going on.”

But also, the caregiver really – sometimes, what happens is there’s a role reversal, so they become that emotional support for the loved one, the financial support, practical support, and also the spiritual support for their loved one, and we remind them that is your – that is a huge role to play, and there’s no handbook for it, but we have resources for you, so you’re not alone in that process.

And, the one thing we really stress is here at Memorial Sloan Kettering Cancer Center, we recognize the important role of our caregivers and how important they are to the loved one that they’re caring for. So, with that resource-wise, the social work department has a program called Reach for Caregivers, and it’s a hospital-wide program that we offer support groups as well as educational workshops.

And then, in November, being Caregiver Month, we put on a lot of different programs just for our caregivers to know we recognize you, we know you need the support, so here it is. So, in terms of support groups we offer, it’s all online because we know that sometimes, the caregiver is also working outside of the home, so to help meet them where they are, we’ve offered an online support group that they can tap into during their lunch hour, or even after work.

Why You Should Speak Up About Your Prostate Cancer Care

Why You Should Speak Up About Your Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What are the benefits of prostate cancer patients speaking up about their care? Linda Mathew discusses the impact of patients taking an active role in their care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

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Transcript:

Linda Mathew:

Our medical team is really open about having discussions. So, 1). Our team is not blind to knowing that our patients may want a second opinion just to validate “Hey, is this – do I have all of the information laid out in front of me?”, and we always say it’s like – it’s always good to have that second opinion just to say, “Ah, what’s been told to me is correct, and it goes in line with what I’m reading on the different websites for these places that I’m going to for possible treatment.”

I always tell our patients also that you are your best advocate, so you know what your needs are, and if it means that you need more information before you make a final decision, then do it.

So, if it means talking to other people or going for a second opinion, then go ahead and do that, but I also tell our patients if you’re scared about asking a question, if you’re not – that’s a huge issue. If you’re scared to ask a question to your medical team, that means that, in itself, says, “Hey, is this the right fit?” So, I always encourage our patients, “Our team knows that you want to ask a question. Just go ahead and ask it. You’re not going to embarrass them; you’re not going to embarrass yourself. That’s what your physician and the nurse are there for.”

I think the one thing I would want to stress is that you, the patient, knows themselves. They know what their needs are more so than anybody else, so if that means that you feel like something is missing, then speak up, let us know, and if you don’t feel saying it to the nurse at the moment when you’re in a visit, you can always reach out to the social worker, who can help direct that question back to the team or help you find a way to ask that question either via the portal or an email to the medical team.

Tools for Managing Prostate Cancer Fear and Anxiety

Tools for Managing Prostate Cancer Fear and Anxiety from Patient Empowerment Network on Vimeo.

Fear and anxiety are common feelings that arise while living with prostate cancer. Social worker Linda Mathew explains how she helps patients improve quality of life while living with prostate cancer.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

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Transcript:

Linda Mathew:

The common fears and worries that they have are – form the support group itself, the main ones that we always hear are the incontinence and erectile dysfunction. So, we really focus on what that means for them as men because it is their manhood, and their biggest concern is “No one told me I was going to have incontinence for this long. I thought it was going to end after a couple months of recuperation from surgery.”

And, we remind them your body has just gone through a shock in terms of having a prostatectomy, and so, it’s your body having to realign and remember what to do again in terms of taking care of itself. Just the same way as in erectile dysfunction, that is possible after having a prostate surgery – prostatectomy, so we remind them there are resources we have here to help address sexual health. So, I am obviously going to refer our patients to our men’s sexual health clinic, which is run by Dr. Mulhall and his team. So, those are the two areas that they really bring up, and it’s also in terms of “Can I have a relationship?” if they’re single, or “How do I let my significant other know that I’m having these issues?”

And, I always – I’m always encouraging our patients “Let’s talk about how to have that conversation if you’re scared of having it. What does that look like for you? What do you think is the worst thing that would be said to you? Let’s approach it from that end in terms of saying here’s some tools for you to have that discussion with your significant other.”

I start off with validating their feelings. I think that’s really important for our male population, is just that it’s okay to feel anxious, and anxiety is real, and with this population, PSA anxiety is very real. So, it’s going in for those three-month checkups to say, “How is my PSA doing? Am I in the right track?”, and just giving them that validation like, “It’s normal. What you’re feeling is normal.”

It relieves a lot of their anxiety because then, they’re thinking, “Okay, I’m not the crazy one here. Yes, what I’m going through – this uncertain journey that I’m on – everyone’s feeling this, no matter what the diagnosis is.” And then, I just – we talk about what it means for them, like what does this cancer diagnosis mean for them. Most of our men are always like – they want something that can be like there’s a solution-oriented process to it, and there’s no solution-oriented process to this, so it’s about how do you sit in that ambiguity, that uncertainty of this journey, and what can you do for yourself that you feel like you’re in control of?

So, for our prostate cancer patients, knowing that there are other people out there that they can talk to is a relief for them, that they’re able to know that there might be a group of men who can say, “Hey, I was there right where you were when I was initially diagnosed in terms of anxiety, in terms of not knowing how to make a decision about treatment plans or treatment options, but maybe my two cents can help you.”

A lot of patients that come to my support group, which is through the Resources for Life After Cancer program, really find that connection helpful because you’ve been given so much information, and you’re feeling overwhelmed by “How do I make this choice – a good choice – for myself?”, connecting with other men who’ve been given the same options, and made a decision, and see where they are now in treatment helps release – decrease the anxiety, but also gives them some relief in terms of not feeling like there’s pressure to how to choose the right answer, or the right recommendation, or the right treatment plan.

How Can a Prostate Cancer Social Worker Help You?

How Can a Prostate Cancer Social Worker Help You? from Patient Empowerment Network on Vimeo.

How can a prostate cancer social worker help patients and their families? Linda Mathew, a senior social worker, shares how she provides support for patients and their loved ones after diagnosis, during treatment, and beyond.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

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Caregiver Support: Taking Care of YOU

 


Transcript:

Linda Mathew:

Hi, I’m Linda Mathew, and I am a senior social worker here at MSK. I am a supervisor in the Department of Social Work, but I also have a service, and I work with the urology service, so, both medicine and surgical patients.

 And, really, it’s just – I’m here as clinical support to our patients in terms of individual counseling, couples counseling, family counseling.

So, what we really do is we provide supportive counseling to our patients. So, in terms of when we say “supportive counseling,” if patients are anxious, or have some depression around the diagnosis, or have just fears around what that – what it means to have a cancer diagnosis and the uncertainty about what that journey will look like, they are referred to me to just process that out loud in terms of questions about themselves and how – how are they going to manage a diagnosis if they’re going to be on chemotherapy or questions about how to support their family around this diagnosis if they don’t even know how to have this conversation with their family.

Most times, if it’s a couple that come in, it’s around how do I support the patient as well as the caregiver through the trajectory of this patient’s treatment. So, the patient is dealing with their own diagnosis and treatment and what all that means, and the caregiver is also having a parallel process with this where they are caring for the loved one, but also have their own fears about “How do I navigate being a support to them? I don’t know what it means to be a caregiver for somebody who’s going through medical treatment.”

So, we help slow that down for them and say, “These are the things that you need to look out for. Just – you are their extra advocate. You are that person – their eyes, their ears – when they are not able to call the doctor’s office to be able to say, ‘I can call the doctor’s office with this information. Just tell me what you want me to say.’”

But, you’re also just there as a support, so it’s a really weird kind of…reminding our patients the tools that they already have, but because they feel like they’re in a crisis, they forget what those tools are.                

Please don’t feel like you have to figure this out on your own. Your medical team is here for you, social work is here for you, we have an ancillary service – like, services available in terms of the men’s sexual health clinic integrated medicine counseling venture, all in terms of supporting our patients. So, when in doubt – and, if you don’t know who to turn to, just turn to your social worker and ask them. Say, “I need help,” and we’ll guide you through it.

Lung Cancer Treatment: What Is Immunotherapy?

Lung Cancer Treatment: What Is Immunotherapy? from Patient Empowerment Network on Vimeo.

Dr. Erin Schenk, a lung cancer specialist, provides an in-depth explanation of what immunotherapy is, and its role in treating lung cancer.

Dr. Erin Schenk is an assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk and her lung cancer research here.

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Transcript:

Dr. Erin Schenk:

Immunotherapies are powerful new medicines that we available to us as medical oncologists and especially within patients with lung cancer. Immunotherapies are medicines that help to activate your body’s own defenses to go seek out and kill the cancer cells.

So, immunotherapies prevent stop signs on the cancer cells.

What happens is that as the cancer cells grow and as they become more resistant to your body’s natural defenses, it puts up certain stop signs. And these stop signs prevent your body’s immune system from attacking them. Immunotherapies, basically, it cuts off that stop sign so that your immune cells can go and attack the cancer cells.

Immunotherapies play a role in the treatment of many lung cancer patients, nearly all. So, immunotherapy has recently found a role in curative-intent therapy meaning we give these treatments to you to try and cure you of your cancer completely. And that’s in patients who have advanced lung cancer that they can’t surgically resect, or it’s not safe or feasible to cut out, but it hasn’t spread to anywhere else in the body.

So, often, those patients receive chemotherapy and radiation together, and then they receive immunotherapy for a year. So, that’s one set of patients we treat with immunotherapy. And then most other patients with lung cancers especially metastatic lung cancer or cancer that’s spread elsewhere in the body, immunotherapy plays a role in treatment regardless of what type of lung cancer that you have with a couple exceptions which I’ll get to.

So, first, if patients have small cell lung cancer that has spread in other parts of the body, immunotherapy’s an important part of the initial treatment regimen combined with chemotherapy. That’s one of the first advances in decades for patients with small-cell lung cancer. The other situation where we use immunotherapy in metastatic disease is with non-small cell lung cancer. And here we have data and studies to support the use of immunotherapy either alone or in combination with chemotherapy medicines.

And the determinate, there’s a number of factors we use to help determine whether a patient can get immunotherapy alone or immunotherapy in combination with chemotherapy, that’s based on PD-L1 status. So, that’s the immunotherapy marker that we look for on cancer cells. If the PD-L1 status is high enough on the cancer cells, we can discuss with our patients using immunotherapy alone.

If that PD-L1 marker on the cancer cells is not high, then we can use immunotherapy plus chemotherapy in our patients. One area where we’re still not quite sure how to best use immunotherapy are in patients with driver mutations or some of these mutations that we look for with special molecular testing like EGFR, ALK fusions, ROS1 fusions.

What we’ve been learning over time is that immunotherapy alone does not appear to help patients do better for longer. We’ve also been learning through clinical trials that immunotherapy combined with TKIs which is the targeted therapy patients receive if they have one of these driver mutations, that does not appear to be effective or safe from some of these early clinical trials.

There’s some debate right now amongst my national/international colleagues as to whether or not giving immunotherapy plus chemotherapy is the right choice for these patients after TKIs or targeted therapies stop working. It’s really up to the discussions that you have with your doctor and whether or not they think immunotherapy and chemotherapy could be right in that situation.

What You Need to Know About Lung Cancer Research

What You Need to Know About Lung Cancer Research from Patient Empowerment Network on Vimeo.

As a lung cancer patient, why should you stay informed about research? Expert Dr. Heather Wakelee reviews what patients need to know.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

So, there’s so much happening in lung cancer research now, it is hard to really narrow it down to one thing to be specifically excited about. Where we have made so much progress in particular is with target treatments, and also with immune therapy. So, when we think about the targeted treatments, it’s only been about 15 years since we first learned about drugs that would specifically target the EGFR gene mutations.

And when we found a tumor with an EGFR gene mutation, we then had a medication we could give that would work better than chemo. And now we have five EGFR drugs available in the US. And then we found out about this ALK gene mutation that happen in some tumors. Now we have five drugs that work there. And the with ROS1, that was found, and now we’ve got four drugs that work there that are approved.

And it seems that we keep learning about more and more mutations, so those are mutations called NTRK and BRAF. And with all of those, we now have drug treatments, so it’s been very, very rapid discovery of specific gene mutations and drugs that work for that. And I think we’re continuing to see new targets being identified and new drugs being found.

And also, when those drugs stop working, better understanding why and what we can do to help them work longer, or what we can give next. So, that’s a very active area of research that’s exciting. And then we have the immune therapy. So, the ones that are available so far are drugs that block either PD-1 or PD-L1, and that's one of the really important stop signals for the immune system.

And tumors can use that stop signal to block an immune reaction to a tumor. But if you block that stop signal then the immune system can attack the cancer. So, that's really important, these PD-1, PD-L1 drugs.

We also know about another stop signal called CTLA-4, and there’re drugs that block that as well. And now, where there’s a ton of research is in trying to work with other parts of the immune system, other either pro-immune or anti-immune signals, and changing those in a way where we can improve the ability of the immune system to find the cancer cells and attack the cancer cells.

So, there are many, many studies being done with drugs, and especially in combinations, trying to get that response against the cancer from the immune system to be even stronger. And that’s, I think, where we’re making the most exciting headway now.

New and Improved Lung Cancer Treatment Options

New and Improved Lung Cancer Treatment Options from Patient Empowerment Network on Vimeo.

Are there new lung cancer treatment options that you should know about? Expert Dr. Heather Wakelee reviews the latest research. Looking for more information? Download the Find Your Voice Resource Guide here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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Transcript:

Dr. Wakelee:

So, the treatment of lung cancer has been changing very, very quickly. We’ve had a lot of new options that have become available in the last few years, and there’re new ones coming along all the time. When I started treating lung cancer, which was a number of years ago, we were able to treat and help people.

But our only real option when the cancer was metastatic was chemotherapy. Chemotherapy is still an important part of treatment for many people, but now we have other options. So, starting about 15 years ago, people were able to identify that some tumors had specific genetic changes. We also call these molecular changes, or gene mutations, or just mutations in the tumor. They have a lot of different names.

But when we do find them, these are things like EGFR or ALK or ROS or BRAF or MET, we actually have different treatment options that only work for tumors that have those specific genetic changes, and don’t work in tumors that don’t have those. So, when we talk about genetic changes a lot of people think, “Oh, that’s something that I’ve inherited.”

These are not things that are inherited. This is not something that’s in the whole person. It’s just in the tumor. So, it’s a mutation that happened in the DNA of the cell, and that cell then became the cancer. And depending on what that mutation or mutations are, we still can have chemotherapy, and that can work.

But for specific ones, and specifically EGFR, ALK, ROS, BRAF, we know that there are pill drugs and oral medication that actually is gonna be better than chemo, at least for a period of time, if a cancer has that specific mutation.

So, it’s really, really important to figure that out. It’s not something a doctor can sort out just by looking at the patient or looking at the tumor under the microscope. We have to do special testing, looking at the tumor DNA.

And we now have ways of looking for those mutations, not just in the tumor tissue, but also sometimes with blood. So, we can draw a blood test and look for those as well when there’s a tumor that’s shedding the DNA. So, it’s really important to think about that. And we now have a whole host of medications that we can offer people when we the find these mutations that we didn’t used to have, even a few years ago.

And, actually, if you think back over the last five years, we’ve had new drugs approved, a few of them every year, for these specific gene mutation tumors, so that’s really, really exciting. The other thing that’s changed dramatically just in the last five years is what we call immune therapy.

So, when we think about the different types of treatment, chemotherapy works by poisoning DNA. And in order to make a new cell, you have to make new DNA. Tumors are doing that more than a lot of normal tissue, and so we’re able to give chemotherapy and specifically hurt tumors and not the rest of the person very much.

With the targeted treatments where we find a gene target and where there’s a gene mutation in a tumor, those are medications that specifically hit that altered gene, that altered protein made by the gene. And then they work really, really well. What immune therapy does is it actually changes the way your body’s own immune system interacts with the tumor. So, we have a lot of types of immune cells, but the ones that are involved in really fighting the cancer directly are called T cells.

And so, normally, a T cell would recognize something that’s foreign like an abnormal-looking cell that’s a cancer, and attack it. But we have a lot of different systems in our body that stop the T cells from recognizing normal tissue and attacking it.

And one of the best systems for that is something called PD-1 and PD-L1. And so, if you have a T cell and it sees a PD-L1 signal on tissue, it assumes that that tissue was normal tissue and it doesn’t attack. But if you can hide that PD-L1 signal, then if it’s a T cell, a part of the immune system comes in and doesn’t see the PD-L1, it doesn’t get the stop signal. It’s not told to not attack. So, it could attack the tumor better.

And I’m not describing it well because it’s so complicated. There are a lot of different factors that help a T cell know whether to attack or not to attack. But, again, one of these key stop signals is the PD-1, PD-L1 interaction. And so, scientists were able to develop medications that can block PD-1 or PD-L1. And when those medications are in the body, if a tumor is using that particular stop signal as a way to hide from the immune system, when you give the medication that blocks it then the tumor is no longer hiding.

And then the immune system, those T cells, can come in and attack. So, these immune treatments, and there are now a lot, and so these are drugs, like pembrolizumab, also called Keytruda; nivolumab, which also called Opdivo; durvalumab, which is called IMFINZI. And there are many, many others. Those medications have now been shown to really, really help to fight cancer, particularly when the tumor is using that PD-L1 signal. But they can also be combined with chemotherapy and then they work even if there’s not a lot of PD-L1 in the tumor. So, again, it’s a very complex story.

But where we’ve seen dramatic improvements in treatment is we have targeted treatments when the genes are – there are specific genes mutating in tumors. We have immune therapy, which worked for a lot of other people. And sometimes when there’s also gene mutation, but not always, we still have chemotherapy. And then there’s ongoing research with a lot of different medications. Many of them are focusing on better ways to get the immune system to work against cancers beyond what we can already do.

Being Empowered: The Benefits of Learning About Your Lung Cancer

The Benefits of Learning About Your Lung Cancer from Patient Empowerment Network on Vimeo.

As a lung cancer patient, why should you stay informed about research? Expert Dr. Heather Wakelee provides her advice. Find your voice with the Pro-Active Patient Toolkit Resource Guide, available here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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


Transcript:

Dr. Wakelee:

So, as a patient living with lung cancer, you have many options today that you wouldn’t have had 5, 10, 15 years ago, which is wonderful.

Because things are changing so quickly, it’s very hard for physicians and other care providers to keep up with all of the latest information. It’s especially hard if you are seeing an oncologist who not only has to keep up with everything that’s happening in lung cancer, but also everything that’s happening in breast cancer, and colon cancer, and melanoma, and so many other diseases.

And so, while everybody does their best to know the latest and greatest in research, and all of the new drug approvals, sometime that’s just possible. So, as a patient, you wanna make sure that you, focused on your particular disease, are up-to-date on what you can possibly know about the best ways to treat your disease, so you can talk to your physician and make sure that he or she also knows about those, and is using that latest information to help you get the best possible care.

There’s also a lot of ongoing clinical trials. And being able to ask about those and know what may or may not make sense for you, is also a reasonable thing to be able to talk with your doctor about.

And sometimes that involves continuing your care with your doctor, but also getting another opinion, particularly at a research center where they might have access to more trials, new drugs, some of which might be better than what’s available, and some of which might not be. But without talking to people about that, you’re not gonna be able to know that.

And that’s why it’s really important to do what you can or your family can do to be educated and know what is going on in the field of lung cancer, so you can get the best possible care.

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

Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion from Patient Empowerment Network on Vimeo.

Should you seek a second opinion? Lung cancer expert Dr. Heather Wakelee explains when to consider seeing a specialist. Looking for more information? Download the Find Your Voice Resource Guide here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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

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Transcript:

Dr. Wakelee:

So, when facing a new diagnosis of lung cancer, one of the questions that often comes up is whether one should go get a second opinion or see a lung cancer specialist. And that is a question that obviously is gonna vary quite a bit by where a person is, where they’re getting seen, and what they’re facing.

I think a time that it’s really critical would be if someone has a Stage III lung cancer or told it might be Stage III. That’s a really good time to get a second opinion and make sure that the group that is taking care of you has had a multidisciplinary discussion. And when I say multidisciplinary, I mean, a thoracic surgeon, a radiation oncologist, and a medical oncologist have altogether looked at what’s going on with the particular case of that patient to decide up front what’s gonna be the best approach.

Because sometimes surgery is the right first approach. And sometimes it’s not. And sometimes radiation’s important, and sometimes it’s not.

So, it’s really critical to have a big team looking at what’s going on for Stage III. And if you’re in a hospital that really doesn’t see a lot of Stages III lung cancer that might be a good time to think about getting a second opinion outside of where you’re being treated.

I think, otherwise, if someone is newly diagnosed and we know the cancer is early stage where surgery might be involved, it’s good to check in that the surgeons who would be doing your operation are surgeons who know about lung cancer and have done lung cancer surgeries frequently. Sometimes in smaller hospitals there are surgeons who do both heart and lung surgery. And we know that the outcomes are not always quite as good in that setting.

Sometimes there’s no choice, and that’s okay. But if there is an opportunity to talk to a dedicated thoracic surgeon who’s used to doing lung cancer surgery, that’s another good time to get a second opinion. When we’re dealing with a more advanced stage of metastatic lung cancer, if someone is newly diagnosed and their tumor ends up having an unusual gene mutation or translocation.

And the molecular changes in lung cancer are really important to know about. And things like EGFR and ALK and RAS, where most medical oncologists will be familiar. But there’re others, like BRAF and RET and MET, and those can really change treatment outcomes as well, but not everybody who sees lots of different kinds of cancer as an oncologist will know everything there is to know about those.

So, if you have an unusual gene mutation, that’s another good time to get a second opinion with someone who’s a dedicated lung cancer expert. And usually those folks are at the larger academic medical centers, so oftentimes in cities, or affiliated with universities.

Another time is if someone does have a tumor with an EGFR, ALK, or one of the more common mutations, but the main drugs have stopped working, that’s often a time where someone who has specialized just in lung cancer might have some other options.

It’s also something to think through when someone’s newly diagnosed, if they know that their doctor has looked at the immune markers like PD-L1, and looked at the genetic changes in the tumor, and has a clear plan that’s gonna involve chemotherapy, or chemotherapy plus radiation, or chemotherapy plus immune therapy.

Then there might not be something that’s gonna be different in an academic center. But before you start treatment, if you’re still feeling okay, don’t have to start treatment tomorrow, and wanna know maybe that there’re clinical trial options, that’s another time to think about getting a second opinion. And a lot of academic centers will work to get people in very, very quickly if they knew they’ve just been diagnosed and they really need to get started on treatment right away.

Diagnosed with Lung Cancer? An Expert Outlines Key Steps

Diagnosed with Lung Cancer? An Expert Outlines Key Steps from Patient Empowerment Network on Vimeo.

Dr. Heather Wakelee outlines key steps that patients should consider taking following a lung cancer diagnosis. Find your voice with the Pro-Active Patient Toolkit Resource Guide, available here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

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

Related Programs:

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

Trustworthy Resources to Help You Learn More About Lung Cancer

Critical Questions to Ask Your Lung Cancer Doctor


Transcript:

Dr. Wakelee:

For a patient who is facing a new diagnosis of lung cancer, there are a lot of really important things to keep in mind. But really thinking about top three of them, the first one is that you wanna know what stage the cancer is. And when we talk about stage, we’re talking about how far the caner has spread. So, sometimes a cancer is found at Stage I when it’s still just a mass, a tumor in the lung.

Stage II means that it’s spread into some of the lymph nodes that are still in the lung. And for Stage I and II, for most people, we know that that means surgery is the treatment option. The next stage is Stage III, and that means that the cancer has started to spread into these lymph nodes.

And lymph nodes are just normal part of the body, but it’s a place cancer often will go. And if it goes into the lymph nodes in the center of the chest, called the mediastinum, then it becomes Stage III. And that changes the treatment. It’s usually more complicated. You wouldn’t normally just have surgery. There’s still sometimes surgery, and sometimes radiation, and almost always some sort of treatment like chemotherapy.

But it’s very complex. And usually we recommend that if you know it’s Stage III that you have a team that’s surgeons and radiation oncologists and medical oncologists to think about it. And then Stage IV means that’s it’s spread. So, knowing – meaning that it’s spread in a way where treatments are gonna involve chemotherapy or targeted treatment or immune therapy, and sometimes radiation, but not normally surgery.

And so, because it’s such a big difference in how things are treated based on stage, that’s the most important question to talk to your treating team about. The next most important question, assuming that it’s metastatic or Stage IV because that’s the most common way that we find lung cancer.

If it is metastatic or Stage IV then you wanna find out well, are there any markers, any tumor markers or cancer genetic changes, that are gonna help pick the treatment. And when I say that, I’m talking about gene changes in specific genes. The ones we think about a lot is something called EGFR, or epidermal growth factor receptor; or ALK, which is A-L-K; KRAS. There’s a whole list of them. But the most important are EGFR, ALK, and ROS, and BRAF.

And why that’s so critical is that if you have metastatic cancer and the tumor has one of those mutations then instead of chemotherapy, the best treatments are gonna be pill drugs, so basically, medications that you take my mouth. And we know that when the tumor has one of those specific mutations, the pill drugs are gonna be more likely to shrink the tumor and have that last longer. So, that’s why it’s so important to know about that. And then the other thing that we look at a lot is something called PD-L1, and that helps us determine about the immune therapy.

So, there’s been a lot on the news about this new class of treatments called immune therapy. And those can work for a lot of different people with a lot of different kinds of cancers. But they don’t always work. And this PD-L1 test can help us know a little bit more about when it might be the best choice, or when it might be something we can add to chemotherapy. And so, getting that information back is important, too.

And I’m gonna add a little bit extra to that. A lot of times that PD-L1 result will come back faster than the gene changes of the tumor, the molecular changes to the tumor. And it’s important to have the whole picture, so you wanna know not just what stage, not just the PD-L1, but also if there are any gene changes in the tumor, so that the best treatment choice can be talked about with the care team.