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Which Prostate Cancer Treatment Is Right for You? What You Need to Know

Which Prostate Cancer Treatment Is Right for You? What You Need to Know from Patient Empowerment Network on Vimeo

What do you need to know before deciding which treatment is best for YOUR prostate cancer? Dr. Maha Hussain discusses the role of key tests in choosing therapy, including biomarker testing, provides tips for partnering with your care team and reviews recent research news.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

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Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’re going to discuss how to access the most personalized prostate cancer therapy for your individual disease and why it’s essential to insist on key testing. Before we meet our guest, let’s review a few important details. 

The reminder email you received about this program contains a link to program materials. If you haven’t already, click on that link to access information to follow along during this webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars.  

Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. 

All right, let’s meet our guest today. Joining me is Dr. Maha Hussain. Dr. Hussain, would you please introduce yourself? 

Dr. Hussain:

Sure. Thank you, Katherine. 

It’s my pleasure to join you. And to the audience, nice to meet you all virtually. My name is Maha Hussain. I am a genitourinary medical oncologist with a focus on prostate cancer and bladder cancer. And I am a professor at Northwestern University Feinberg School of Medicine, Department of Medicine, and endowed professor there. And I also serve as the deputy director for the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. 

Katherine:

Wonderful. Thank you so much for taking time out of your busy schedule to join us today. 

Dr. Hussain:

My pleasure. 

Katherine:

I’d like to start by asking about developments in prostate cancer research and treatment. Experts recently gathered at the annual American Society of Clinical Oncology meeting, also known as ASCO, to share their research. 

So, what were the highlights from that meeting that you feel patients should know about? 

Dr. Hussain:

I think probably perhaps I can focus on two major – what I would consider major highlights, and those were the results from two randomized Phase III clinical trials. 

One of the trials is called the VISION trial. And the VISION trial was a Phase III randomized trial evaluating lutetium-PSMA-617 treatment in patients with metastatic castration-resistant prostate cancer. And the delightful thing about this study is that that study was positive. The PSMA story has been really going on for a few years now. And there’s the PSMA for purposes of scans, imaging, to assess the cancer. And the FDA just approved a PSMA PET imaging this year. 

I think it was in May when it was approved. And that would help better define if the cancer is spread or not, and it help with the decision regarding treatment. But the second part is treatment purposes, so identifying the cancer location and trying to attack it with a specific sort of targeted attack to the tumor is really important. 

And so, the FDA is currently looking at this particular agent. And I am hopeful that we will hear soon from the FDA, hopefully before the end of the year, and maybe – who knows? – maybe by summer, middle summer or end of summer. Because I do think that would be a major benchmark in there. And so, that’s one thing. 

The other clinical trial that I thought was interesting from a data perspective – and for disclosure, I am one of the investigators on this study. And this was an intergroup Southwest Oncology, or SWOG, sponsored clinical trial. So, it’s a federal study that Dr. Aggarwal presented. And this was a study that was aiming at maximizing, again, the anti-tumor therapy with the use of a drug which I call is the younger brother of abiraterone. 

So, abiraterone is a drug that is FDA-approved and has been around for several years right now for both castration-resistant prostate cancer and certainly hormone-sensitive metastatic disease. And so, TAK 700 (Orteronel) is a younger brother, I call it, of abiraterone. And one of the potential advantageous when this trial was designed was the fact that you don’t need to use prednisone. And the trial was completed. It was a national clinical trial. And what was interesting is that there is certainly what appears to be a potential benefit, but not in terms of the conclusive based on the way the study was designed.

Having said that, what I thought was remarkable is that patients who basically were only on the control arm was LHRH therapy, so this could’ve been like Lupron, Zoladex, or something like that plus bicalutamide, which is what we call combined androgen deprivation. And that was sort of like the strongest control arm we could do at the time when the trial was designed. 

Remarkably, the patients who were on that arm had a median survival of basically 70 months. That’s the median. That’s the bell-shaped curve with the number in the middle. Seventy months is probably the longest ever in any other randomized trials in this disease space, in the hormone sensitive space. So, that tells us is that men are living longer with prostate cancer, even though it’s metastatic disease; and, yes, it’s not necessarily curable, but men are living longer. And it’s a function of all of the better treatments that are supportive care and everything that was going on.  

And so, the control arm, as I mentioned, was the 70.2 months. The actual experimental arm was about 81.1 months. And again, I don’t know where things will go from this. Obviously, I’m not the sponsor not the FDA. But the point here is that men are living longer, and so wellness and health become even more so important than we ever did. And as I tell my patients, every day you’ll live longer. The odds of living longer is there because of better treatments coming on. 

So, to me – not to take too much time from the interview – to me, these were the two highlights: new, approved – I’m sorry, new treatment that I’m hoping will be FDA-approved and, obviously, the fact that men are living longer.  

Katherine:

How can patients keep up to date on the research that’s going on? 

Dr. Hussain:

I’m a bit biased, obviously. I’m a member of ASCO. 

And what I would recommend to my patients is to look at the cancer.net website. The cancer.net is a website that is an ASCO-generated website specifically for patients and families to review. It is vetted. The committees are not run just by physicians, oncologists, a multidisciplinary team, but also patient representative. So, the lingo and the presentation are lay-friendly, I call it, there. 

The other part I would say, the NCI website, and the American Cancer Society, the American Urological Association. I would say there’s a lot of stuff on the media. The difficulty is vetting what is sort of fake, what is not so accurate, or bias versus there. I also think that the NCCN has also some resources for patients. 

And one thing I always tell patients: explore, look, but make sure that you talk to your doctor about the meanings of everything because sometimes it can be not – it could be misleading, I should say, or maybe not very clear on what the implications are. 

Katherine:

Right. One thing that’s a topic on the mind of many people right now is COVID. 

Dr. Hussain:

Yeah. 

Katherine:

Is the COVID vaccination safe and effective for prostate cancer patients? 

Dr. Hussain:

The answer is yes and yes. So, I have to say, by default, I deal mostly with older men. Age brings in other comorbidities. And certainly, while I see all kinds of shades of gray in terms of the disease extent, going all the way from newly diagnosed all the way to end-stage disease, the bulk of the patients I end up seeing tend to have more systemic disease and have other issues going on. And I have to say, surprisingly, less than a handful of my patients had the infection. 

Only one required hospitalization with supportive measure, but not even needed incubation; however, he needed a lot of CPAP and other respiratory support. I’m not aware of any of my patients or my colleague’s patients who deal with prostate cancer that have died from COVID. So, I would say that’s the good news and that we have not seen a big hit in the population that I deal with. 

I also know that I would say 99.9 percent of my patients have opted to be vaccinated, and they have tolerated the vaccine just fine. There’s only one case, which I actually even saw just this week, who had been vaccinated but have a very, very severe end-stage disease with significantly compromised bone morrow, who got infected but hospitalized for a few days and is recovering. 

And so, I would say just by the pool of patients I see, my answers are yes and yes. 

Katherine:

Very good. Thank you. 

Dr. Hussain:

And I would encourage all the audience to go get vaccinated. I myself am vaccinated. And I’ve advised all my family members to be vaccinated, just to clarify that too. 

Katherine:

Good. Good to know. Dr. Hussain, we’re going to spend most of this conversation talking about advanced prostate cancer. But before we move on, would you give us a brief overview of the stages of prostate cancer? 

Dr. Hussain:

Absolutely. So, with any cancer, we count sort of like four stages. But I would say in prostate cancer the biggest thing is when the cancer is newly diagnosed, which could be confined to the prostate or locally advanced, meaning the cancer has gotten outside the capsule of the prostate but still within that pelvic region. 

There is the group of patients who have pelvic lymph nodes at time of diagnosis. And of course, that is the patients who have systemic disease, which would be technically stage four. Now, the systemic disease implies any abnormality that is found on scans that is beyond the public region. So, that could be lymph nodes in the back of the belly. That could be thoracic lymph nodes. That could be neck nodes. That could be lung lesions, of course, or bone, or liver. 

Now, the most common area where the cancer goes to is really – when we talk about metastatic disease – is the bone. And then lymph is another area where the cancer goes to. Prostate cancer that is confined to the prostate is curable in the vast majority of patients. There is a category of men who undergo surgery or radiation, and then their PSA begins to go up afterwards. 

And this is what we call biochemical relapse. And this is a situation where we know that, in all likelihood obviously, especially of the patients who have had their prostate out, that the cancer has spread. With the current imagine, a good chunk of times, we do not find anything because we’re able to pick up PSA that goes from undetectable to 0.2 to 0.3, but there’s not enough cancer to show up on the scans. We’re hoping, obviously, the better scans, the PET Axumin scan, the PSMA scans are going to help us to identify sites of metastases. 

But this is a group of men where if there is no cancer visible and the only thing we’re dealing with is PSA that’s going up, if they’ve had surgery, then there’s room for what we call salvage therapy with radiation and hormonal treatment. The case is a bit different if there’s only just the prostate – if radiation was given previously. And of course, we talked about metastatic disease. 

Katherine:

Yeah. Once someone has been diagnosed, what tests are used to help understand the aggressiveness of their disease and their overall prognosis? 

Dr. Hussain:

Well, I think there is different basic things, as in, what was the extent of the cancer? How did it look under the microscope? And what is the PSA levels? So, these are the general things. There are different sort of genomic panels that the urologist will use to kind of decipher and other things to kind of help with figuring out aggressiveness and things like that. What I would say is this, is a patient who is diagnosed and has a cancer, and at a minimum has what we consider a Gleason 7 prostate cancer – so, that’s the scoring system that is done with the original Gleason score, or the new patterns where it’s talking about intermediate risk to high risk – to me, this is a cancer that needs to be treated. 

And again, that’s all to do with if a person has other comorbidities, they have some other terminal condition that’s a separate story. But talking generically, that would be when we would recommend. And these are the patients that are generally not seen by the medical oncologist. They’re seen by the urologist, and then they can refer them to radiation oncology also for consultation. 

Katherine:

Now that we understand how test results can help inform a patient’s cancer and how it may behave. Let’s discuss how they can affect treatment options for men with advanced disease. First, let’s do a brief review of the treatment types currently available. There’s hormone therapy, right. What else? 

Dr. Hussain:

Perhaps, it’s simpler if we focus on advanced disease, specifically metastatic disease. 

So, if that’s the deal, then the backbone of treatment is hormone treatment. And it really is. We call it hormone, but technically it’s an anti-hormone. What we’re trying to do is shut down the hormonal pathway that stimulate the testes, which is the factory that makes testosterone. So, we are looking at shutting down testosterone production from the testes in order to starve the cancer. 

Now, the male hormone is produced predominantly – somewhere about 95 percent of it is made by the testes, and then there are about 5 percent-ish that comes from other sources. These are, again, male hormones like the adrenal gland and so on. And there was a while ago some research – I want to say from the MD Anderson crowd, but this is two years ago – that suggested also that the tumor may start to make sort of in-house production of male hormone to support itself. 

Now, having said that, again, testes continue to be the source of the majority of the male hormone. And so, historically, the first data that showed benefit was actually by surgically removing the testes, which is what we call orchiectomy or bilateral orchiectomy. And then medications began hitting the market and were evaluated in the late ’80s and then 1990s, beginning with Lupron – which by the way, in the ’80s, it was an injection that the patient had to give themselves every day, which is remarkable. 

But even then, there is a personal preference by patients to go and take injections as opposed to go through surgery with orchiectomy. But still, I would say for some patients it may be an option until it ought to be discussed as an option. Then what we know is this, is because of the potential other sources for the male hormone, the concept of what we call combined androgen depravation was being evaluated. 

And again, this goes back to the ’80s when the first drug was flutamide and then bicalutamide, and there are other drugs that became. And they kind of added a sprinkle, I call it, to survival. But it wasn’t dramatic, huge differences in survival. And so, generally, while we used it, everybody believed in using it. Moving forward, the drugs like abiraterone, enzalutamide, apalutamide are the three hormonal drugs that have demonstrated conclusively really an advantage in terms of prolonging life when added to the Lupron. 

So, what I tell my patients is that, when it comes to hormone treatment there is really no way around it. You can delay it. Some people are exploring for some patients who don’t have a lot of cancer, maybe a couple of areas, maybe just do targeted radiation and then leave the person alone to buy them some treatment-free time. 

And, to me, this is where the discussion that has to happen with the patient. What is the objective? Is the objective to kind of be ahead of the game and maximally treat the cancer with the hope of prolonging life? Or is the objective to delay treatment? And I would tell you that, with these types of conversation, nine out of 10 or 9.5 out of 10 men opt for moving aggressively up front with management. So, that’s that. 

Now, the one thing I should point out, one of the trials that also was a landmark trial in this disease was the study CHAARTED, which was an intergroup clinical trial at the time it was designed, led by ECOG, and the PI was Dr. Chris Sweeney. I was part of the team that worked on the design also of the study. 

And that was a trial that looked at adding docetaxel to hormone therapy, versus hormone therapy alone, to try to see if it adds something. Historically, all the chemotherapies prior to that that were added to hormone treatment for patients with newly diagnosed metastatic disease had not delivered. And docetaxel did. 

However, one thing I should point out, based on that trial – and I don’t want to go into too much details for the sake of time – the patients that seemed to be benefiting were the patients that had more aggressive, more disease in their system. And so, liver metastases, lung metastases spread in the bone at different areas, not like few isolated areas in the spine or the pelvis, but much more than that. 

And so, for the patients who have what we call high-volume prostate cancer based on scans – and I’m happy to explain what that means if it’s needed – these are the patients that I would offer either the docetaxel plus hormone treatment, which is the injection, or the injection plus the hormonal pills that I mentioned earlier. 

Katherine:

What about targeted therapy? How is that used? 

Dr. Hussain:

Okay. So, let’s begin with the molecularly targeted therapy. So, as we speak right now, for patients who have newly diagnosed metastatic disease that we call hormone sensitive, molecularly targeted therapy is not standard of care. So, I would encourage patients who may qualify for clinical trial to be involved in those. The flipside is – we can talk about it – is that molecularly targeted therapies, specifically with PARP inhibitors have pretty much entered in the space of prostate cancer with a couple of drugs that were FDA-approved. 

The other way of targeted treatment, which would be what we refer to targeted radiation, this would be a different story. This is not systemic treatment. This is a local treatment. And what is done is basically if patients do not have a lot of cancer in their body based on scans, and only certain areas, and they are starting systemic therapy, they can certainly consult with a radiation oncologist to target radiation to areas that are visible on scan. So, if somebody has a couple of, let’s say, pelvic bone lesions, maybe a lymph node, and they are already starting systemic therapy, they can consult with a radiation oncologist focal radiation. And so, that would be the general scheme. 

Katherine:

Many patients are confused about the role of genetics and biomarker testing in prostate cancer care. 

For people who haven’t heard of some of these terms before, let’s go into the definitions. So, what is genomic or biomarker testing, first of all?  

Dr. Hussain: So, I think there’s one thing. Maybe I can explain because the wording can be confusing. So, there is the genetics, and there is the genomics. The genetics would be what we inherit from our families. So, this would be present in our body. The genomics testing would be to look for what the structure of the genes of the cancer itself, cancer cells itself. Now, that doesn’t mean that this was inherited. It’s just that this is a renegade, and it evolved. And that is what is going to show up. 

The reason these two are important, both of them have implications potentially for treatment or perhaps clinical trials. And again, with the PARP inhibitors, the BRCA-like genes will have implications for treatment sort of for resistance cancers. 

With regard to the genetics, the implications are for, again, inheritance of family and potential risk for blood relatives. Now, there are panels that are FDA-approved for the purpose of genetic testing. And the requirement or the indications right now, anybody who presents with metastatic disease or an aggressive disease and diagnosis, the recommendation is to proceed with the genetic testing, certainly counseling and testing, because there are some people who prefer not to be tested. And that’s something else. 

What I tell my patients is this, even if the testing is done and it was negative for inherited genes that might put the patient family at potential higher risk, the fact that a person has prostate cancer by default puts potential, adds risks to family, to blood relatives. 

And the risks aren’t just for the males with regard to prostate cancer, but certainly breast cancer, ovarian cancer, pancreatic cancer potentially, and things of that sort. So, this is where I think a patient needs to be discussing with their doctors. And certainly, there are many centers that have genetics counselor, and so that’s where I generally refer my patients to. I counsel them myself, and then refer them also for more discussions with genetics counselor. 

Katherine:

What exactly are genetic mutations? And how do they impact a treatment path? 

Dr. Hussain:

Well, I think, again, it’s the changes that happens in specific genes that may promote the aggressiveness of a cancer. And so, the BRCA gene is one of the oldest genes that have been identified in breast cancer. And essentially, the body regulates itself. 

And when cancer cells come up and they sort of – the body no longer sustains that regulation, the genetic regulation in those cancer cells. Those cancer cells will behave the way they want to. That means that they’re going to grow faster. That means they could be resistant to treatment and things like that. And so, that’s what we check for, these alterations. And there are certain medications that would allow – and again, in prostate cancer, it’s not a lot. It’s just, as I said, right now the only things that are proven is the PARP inhibitors. This is essentially to kinda gang over the cancer cell, preventing from allowing it to repair itself so it can continue to grow. 

Katherine:

Some patients may not know if they’ve received these important tests. So, for patients that aren’t all that sure, what key questions should they be asking their physician or their specialist? 

Dr. Hussain:

So, I would say when it comes to the genetics testing, I believe a patient has to consent. 

Because again, we live in the U.S., and this is a private matter for the patient. So, this generally has to be the case. Otherwise, depending on the institution, sometimes some tests will require for the overall testing for looking for any genetic alterations, general tumor alternation. Different centers have different things. But the patient should ask and say to their doctor, “Have my cancer genes been tested? Have my genes been tested? And if they have, what are the results?” Because we generally share with the patients once it’s been done. 

The other things I should point out, some of the good things that have happened recently. Up until recently, when it comes to the tumor genomic testing, tissue was required. Nowadays, the FDA has approved blood tests that several companies now run that can actually collect blood sample and basically test it for circulating tumor cell genes there. 

Now, no testing is 100 percent perfect. But in situations like patients with prostate cancer who may not have recent tissue or adequate tissue for testing, certainly doing the blood test to verify if there is anything reflective of the genes of the cancer, and that may allow for potential actionable-type treatments. Again, up until now, this is more going to apply for potential clinical trials or resistant metastatic disease. 

Katherine:

Are there other important factors to consider, like a patient’s age, that can help them access the best treatment for their prostate cancer? 

Dr. Hussain:

Yes. And I think that age is one factor. What I say and what I tell my fellows, age is to be respected, but used to discriminate in terms of management. 

 We all age. And certainly, the body reserve is not the same. And so, that’s why I would say that has to be respected. But it doesn’t mean that we cannot treat patients. 

And I’ll tell you, it’s interesting. There are times where you have – I have a gentleman who used to run seven miles a day. He was 87 years old. This was in my days when I used to be in Ann Arbor at University of Michigan. And the gentleman came to me, and he said, “Dr. Hussain, I don’t feel good.” And I said, “Sir, why? What has happened?” “I can’t run like I did before.” And I said, “You’re not running?” “No, I am running. I’m just not able to do seven miles a day. I can do only four miles a day.” I’m like, whoa, that’s about 100% more than I do. 

Now, again, I’m bringing this as an extreme example. But for some of the oral agents, like the Olaparib trial, there were men in there literally late-’80s, early-’90s that were included in the clinical trials. Same thing goes for several of the other trials. 

I do think that functionality is important. So, if somebody comes to you so sick they are in a wheelchair, you really have to be very careful. And again, I’m just using kind of extremes. And so, you have to be careful by what you are able to do. And any time the doctor thinks the odds are going to be more harm than good, this is really where absolutely a situation where the physician needs to be careful about it, and the patient needs to understand it also. At the end of the day, it’s a shared decision. 

Katherine:

Before we close, Dr. Hussain, how do you feel about the future or prostate cancer research, and what would you like patients to know? 

Dr. Hussain:

First, let me say that I would love for the patients to know that they are a partner, a most critical partner in the process.  

That we need to continue the research and investment in research. It is research that will end up curing cancer. Wishful thinking will not do it. And patient volunteering, which I think is remarkable across all cancers. The business I’m in, the way that drug discovery and evolution often happen because patients volunteered. And without testing these new treatments and combinations, we will not be able to get better results.  

And I will tell you that, when I started my training, the median survival for patients with resistant prostate cancer was on the magnitude of about nine months. Now it is three years-plus. Now, you could argue, well, that’s not huge. But that is a huge change because, again, we’re picking up the cancers much earlier. And the patients who had, as I mentioned, metastatic disease, again, the longevity then at the time I was in training, but even afterwards, was give and take in the three years. And now we’re talking six-plus years. 

And so, there’s been tremendous progress. And really partnership with the patients and their families and supportive others is very critical, and investment in research. So, yes, advocate constantly for more investment in research. 

Katherine:

All sounds very promising, Dr. Hussain. Thank you so much for taking the time to join us today. 

Dr. Hussain:

My pleasure. And be well, all of you.  

Katherine:

Thank you. And thank you to all of our partners. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about prostate cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us. 

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia (CLL) patients, telemedicine has emerged as an option that requires new ways of working with their health team. Watch as CLL expert Dr. John Pagel shares his advice to patients and caregivers for getting the most out of telemedicine visits.

See More From the CLL TelemEDucation Empowerment Resource Center

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Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

What CLL Symptoms Can Be Monitored via Telemedicine?


Transcript:

Stephanie Chuang: 

You had mentioned, patients need to be prepared when they come to their telemedicine visits, doctors have limited time, of course. So what are your top three tips or so for patients and their caregivers who are preparing for their telemedicine visit?

Dr. John Pagel: 

So here’s a good important thing to say around that. Number one, you know, what happens is you’ll get told you have a telemedicine visit at 10:00 AM on Tuesday. And so you’re looking forward to 10:00 AM on Tuesday. And 10:00 AM comes around, and you’re waiting by the phone, and it doesn’t ring immediately, or the Zoom doesn’t come up immediately, please understand you have to be a little bit flexible with your physician. Just because it says that time…it’s the same thing kind of like in the clinic, it all kind of flows and works together. And so please be flexible and be patient. Not accepting excessive delays, that’s not really cool, we get that, but it’s often very hard to be right on the dot at 10:00 AM. So number one, be flexible. Number two, have your questions written out or focused about what you want to learn and understand that visit. It may not be a lot different than the last visit, that’s okay. But if you don’t have those, often, what will happen is that when the visit’s over the phone is hang up or the Zoom call is put away, you’ll remember, “Oh, I forgot to ask X, Y, or Z.” don’t let that happen.

And the way you don’t let that happen is to be focused there with what you want to learn. And then lastly, if it’s possible, don’t be excessive. Meaning that, focus on the things that are important, meaningful, relevant to what’s happening to your health, your disease in your interaction with your physician. There are things that we all can list that could be very, very long in the list, but many of them aren’t going to be something that the physician can get to in a very meaningful, important way. Ask though, if you can’t get to those things that are important, that you try and follow up with them very quickly, perhaps in another visit relatively soon. But keep your expectations, if you could, to a very realistic approach, directed and focused on taking care of you and managing your CLL. 

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients? from Patient Empowerment Network on Vimeo.

With telemedicine as a part of the chronic lymphocytic leukemia (CLL) toolkit, what will its role be in the future? Watch as CLL expert Dr. John Pagel shares his viewpoint of how telemedicine will play into long-term survivorship care for patients.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

What CLL Symptoms Can Be Monitored via Telemedicine?

 

Transcript:

Stephanie Chuang: 

We really haven’t scratched the surface, it seems, when it comes to using telemedicine as a long-term survivorship tool. So for the sub-group of CLL patients who never need treatment, does telemedicine still bring any major advantages?

Dr. John Pagel:

There are people, and it’s not uncommon, who actually never even get treated. I’ve had people in my clinic who have had CLL diagnosed and never treated for over 20 years or more. It does happen. And those people often can be managed with their primary care physician, even though it’s good to have a CLL focused clinician, an oncologist or even expert in their back pocket, but they may only need to have that televisit with that expert or oncologist once a year. So those are the ideal kind of patients who it’s not great to drag them in if there’s nothing going on with them, but they still need to be evaluated and have a discussion about what’s happening, at a minimum once a year in many cases. 

What CLL Symptoms Can Be Monitored via Telemedicine?

What CLL Symptoms Can Be Monitored via Telemedicine? from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia (CLL) patients, some symptoms can be monitored via telemedicine, while other symptoms are best to check in-person. Watch as CLL expert Dr. John Pagel discusses getting optimal care by CLL symptom type.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

Stephanie Chuang: 

There are CLL patients on specific treatment protocols and those who need follow-up for potential adverse effects of treatment compliance and, of course, progress. And so the question is, how effective of a tool is telemedicine for this group?

Dr. John Pagel: 

I’ve been very impressed that we can meet the needs of patients, we can meet the needs for clinical trials. Clinical trials have really adopted and been flexible with the idea of being able to do telemedicine in a large degree because of COVID in CLL. And I would say clearly that a conversation and close discussion with the physician’s critically important, it comes back to what we mentioned specifically, it’s about education. Patients need to understand that if they’re not feeling well, meaning, they’re having drenching night sweats or they’re losing weight or they’re having pain, those aren’t things to sit back and just wait for your telemedicine visit, they need to contact the physician and to be able to be seen urgently or quickly if needed. 

Telemedicine is going to be a bridge to make that happen, but in general, those are people that are in a bit of a different class of what we’re discussing here today. So monitoring disease, taking care of people with regard to assessments of their blood counts can be done all again through telemedicine, but more acute problems, those patients do, of course, need to be seen. 

Telemedicine Challenges and Opportunities for CLL Patients

Telemedicine Challenges and Opportunities for CLL Patients from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia patients, some challenges have emerged with care via telemedicine. In this telemEDucation program, CLL expert Dr. John Pagel explains opportunities for patients and providers to optimize these visits.

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Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

 Stephanie: 
Let’s highlight both the challenges and opportunities that come with telemedicine. So first, it does seem to be reshaping the traditional CLL doctor-patient relationship to some extent, and you’ve touched on this. So with your experience as a CLL expert, what are the limitations of telemedicine?

Dr. John Pagel: 
Well, one of the, of course, things about telemedicine is it’s not just figuring out how to do it from the provider’s standpoint, but it’s also figuring out how to do it from the patient’s standpoint. So we can’t expect, to be honest, that this goes just like it would if you were in the clinic, sitting on the exam table with your physician there at the computer right next to you in that exam room, it shouldn’t be expected that it’s going to go like that. And unfortunately, to this point, we’re trying to figure out that. It doesn’t do that. And so that takes some alteration in our approach, on the provider’s side and on the patient’s side as well – and in particular, what the expectations are for these patients and for the providers.

So it needs to be very focused, and it needs to be concise. So what is my message there? For the patient’s side, know that the doctor’s busy, they’re doing their work all day long with lots of sick people potentially, and so they need to be very focused on what the issues are and the direction of the conversation. So come prepared to a telemedicine visit, if you’re a patient. Come prepared to know what you want to talk about and what the focus is with the priorities that you might have that are issues for you around your CLL disease. And the provider will do that hopefully as well. It’s a learning thing. But I will tell you, the first time will take a little bit of learning. By the second, third time that you’re actually interacting with your doctor, that same one-on-one relationship, it really

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

Will Telemedicine Mitigate Financial Toxicity for CLL Patients? from Patient Empowerment Network on Vimeo.

The cost of chronic lymphocytic leukemia (CLL) care can be inappropriately high for some patients. Watch as CLL expert Dr. John Pagel details how telemedicine can affect the high cost of care.

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Transcript:

Stephanie: 
Dr. Pagel, we know the stresses of paying for cancer treatment. So how can maybe telemedicine help to mitigate financial toxicity for these countless CLL patients and their families?

Dr. John Pagel: 
Well, this is an important part of medicine in general, and it’s certainly relevant, of course to the CLL patients. The cost of care is inappropriately high, not just the pharmaceutical agents, but, of course, the visits. So there are evolving ways of figuring out how reimbursement will happen for physicians and how payments happen on the side of patients. We’re still not completely clear on that, but likely what will happen, over time, is that we will be doing less and less unnecessary tests. And with less unnecessary tests, the cost of care will go down for the individual specific community and patients. It’ll be very important for us to figure out what we really need to be doing and what we don’t, and telemedicine’s going to help us figure that out. 

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future? from Patient Empowerment Network on Vimeo.

Will telemedicine play a greater role in CAR T remote monitoring and help some CLL patients avoid long hospital stays? Learn how harnessing technology could optimize care for CAR T patients.

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What CLL Population Will Benefit Most From Telemedicine?

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Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

Stephanie: 

There’s excitement around telemedicine and CAR T, so specifically remotely monitoring CAR T to help avoid patients having to deal with long hospital stays. Is this the future?

Dr. John Pagel: 

It’s clearly the future. So what you’re alluding to, of course, is a way that we are now doing to trick a patient’s own immune system cells into targeting and fighting the cancer, and of course, we’re talking about CLL here. It’s a revolutionary treatment in CLL, we still have quite a ways to go, we are doing a lot of important trials and advancing the field, but we don’t have an approved approach in CLL yet, but we will. No doubt. And the goal of that therapy is not just to eradicate the disease and keep it from coming back, but it’s also to do it in a very safe and actually appropriate way, and that’s as an outpatient.

Those patients clearly have risk for an adverse event or a side effect, that can be problematic. So they have to be in close contact with a physician and sometimes they’re required to be very close to the treating center for prolonged periods of time. Most of the time that’s very uneventful. So it’s a major disruption to a patient’s life. You could imagine that you’re traveling hundreds of miles to go to a center, and not just go to a center that provides the CAR T-cell therapy, but is actually monitoring you for a month or more, so you’re away from home for a long time, living in a hotel, that’s a problem.

Telemedicine is a way to get around that. We will evolve to being able to treat patients, get them home, and then telemedicine will work where the visits can be done in a very expeditious manner, and again, in a very appropriate way so that that will also reduce the interactions away from home, and as we said cost of care as well. 

What Subset of CLL Patients Should Utilize Telemedicine?

What Subset of CLL Patients Should Utilize Telemedicine? from Patient Empowerment Network on Vimeo.

With monitoring of chronic lymphocytic leukemia (CLL), there is a subset of patients that will get the most benefit from telemedicine visits. Learn more about which CLL patients should use telemedicine and which higher risk patients should still visit in-person. 

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Transcript:

Stephanie Chuang: 

Can you share the telemedicine platforms that you, in your practice, use and maybe so far, what are some of the best practices observed?

Dr. John Pagel: 

Right, and I think that’s probably the biggest key and takeaway that we can talk about here for the audience, is to remember that telemedicine isn’t going to be appropriate for every patient. And for each individual patient, there are times where it certainly would be very appropriate and other times where it might not be. So, you know, of course, people that have active, growing, rapidly progressing disease, we’re not talking about those people, those people need to be seen by their provider, they need, of course, close attention and monitoring. But many, many patients, in fact, the majority of patients with CLL are not in that kind of group.

So we’re talking about people that don’t have high-risk genetic features, in particular, those are things like a deletion of the short arm of chromosome 17, that’s a 17p deletion, or an 11q deletion or a TP53 aberration, those are genetic risks that your doctor will know about with regard to your specific individual CLL. And most people, fortunately don’t have those features and they behave in a very indolent, slow growing, more benign-like fashion, and then those are the people where probably telemedicine would be appropriate for many visits.

I’ll just say, I would suggest that in general, telemedicine shouldn’t be something that you do with every single visit. Every once in a while, you should have that face-to-face, hands-on interaction with your primary provider. But I’ll also remind people that not everyone lives real close to their oncologist or even their CLL expert. So if you’re far away, you can connect not just with your oncologist who takes care of you, but with an expert who might be some distance away, and that’s the beauty I hear about the telemedicine.

Will Telemedicine Be Part of Routine Management for CLL?

Will Telemedicine Be Part of Routine Management for CLL? from Patient Empowerment Network on Vimeo.

With the COVID-19 health crisis, telemedicine has emerged as part of routine healthcare. Watch as CLL expert Dr. John Pagel gives his viewpoint on how telemedicine will be included in routine management of CLL. 

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Transcript:

Stephanie: 

You know, of course, COVID-19 has forced healthcare providers to use telemedicine more than ever before, so do you think this will definitely continue on past COVID-19? And if so, how quickly it will even grow?

Dr. John Pagel: 

Well, I think the federal government’s understanding that this is a part of medicine moving forward that’s important for patients, patients like it, and I don’t blame them. If I’m on that side of care, I feel perfectly fine, I have CLL, let’s say, and nothing’s going on with me, and I’m very well-educated about my disease, and by the way, that’s probably critically important to this whole conversation is to understand and be educated well about your specific disease.

Remember, each patient has to be their own best advocate. And that makes telemedicine work. And frankly, the horse is out of the barn, in my opinion, telemedicine is where we’re going, and it’s not going to come back. Patients like it, physicians are getting used to it, Stephanie, it’s something that we are reluctantly in some ways adopting, but it’s just how it is, and I think it’s going to be a major important thing for many, many CLL patients as routine management. 

How Will Telemedicine Impact Time-Limited Therapy in CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL? from Patient Empowerment Network on Vimeo.

With chronic lymphocytic leukemia time-limited therapy, treatment is delivered for a pre-determined period of time and then is stopped after remission is achieved. Learn how telemedicine impacts patients on this type of treatment. 

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Transcript:

Stephanie: 

Dr. Pagel, we’d love to ask about the time-limited therapy in CLL specifically, and how telemedicine might play a role in that?

 

Dr. John Pagel: 

Well, this is one of the things that we’re still learning about, Stephanie, and I think it’s going to evolve and change a bit over time, but we know that we need to do. Continually better for patients, of course, we need to meet unmet needs in CLL. And there are lots of unmet needs still in CLL, of course, one of them is curing the disease, and we’re not focusing on therapeutics today in our discussion about working towards that goal, but that does remain a major goal, and we’re working towards that. But really, of course, there are situations with unmet needs where people have been getting therapy continuously now for long, indefinite periods of time, and they may not need all that therapy. And so one of the things is that we’re learning about is what you mentioned time-limited therapy. So the idea of delivering therapy for some defined period of time, getting to a very good remission and then stopping therapy. And where telemedicine comes into play there, is that if they’re off of therapy and doing well, we don’t need to necessarily drag those patients back to the clinic and put them through, not only all of that exposure and that risk, but of course the anxiety that goes with it and everything else.

So again, I think that in those cases where we’re monitoring patients with telemedicine, it’s beautiful for time-limited therapy, and it also allows for us to stay even in closer contact with our patients who again, might have some difficulty getting into the clinic. 

What CLL Population Will Benefit Most From Telemedicine?

What CLL Population Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo.

Among chronic lymphocytic leukemia patients (CLL), there are some that will benefit more from telemedicine visits that have become common practice during the coronavirus crisis. Watch as respected CLL expert Dr. John Pagel explains.

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Transcript:

Stephanie: 
Now the pandemic has, of course, presented both challenges and opportunities for clinicians who are trying to manage diverse health conditions, and of course, we’re not just talking about COVID-19. So on the positive side, Dr. Pagel, what are the opportunities you see for CLL patients using telemedicine?

Dr. John Pagel: 
Well, you’re right, Stephanie, it isn’t just about COVID, but COVID has certainly changed the landscape of how we approach many patients in 2020 and now in the future moving forward and particularly with regards to telemedicine. And that’s particularly relevant to CLL patients in particular. CLL, remember is a chronic disease, it’s of course, part of the name chronic lymphocytic leukemia, and people will live with this disease for many, many years, perhaps even decades, and often not even be getting therapy but still have, of course, the disease.

And they need to be monitored, and they are commonly monitored with what we call active surveillance. And active surveillance is typically, as the audience well knows, periodic evaluations with physical examinations and perhaps even some laboratory blood work that’s done on an associated visit. And because of the need for those things over the last many years of how we follow people, with active surveillance, people. We have seen frequently in the clinic, and perhaps in some ways they’ve been seen when they perhaps could be evaluated and taken care of in a different way, and that’s where telemedicine comes in for select appropriate CLL patients. Where maybe we don’t need to bring them in to see their provider, they can get labs done perhaps locally at their primary care physician’s office, if the labs need to be done. And often the physical exam can be even done by video or — so by showing the provider what might be going on, and lots of times that physical exam may not even be important.

What do I mean by that? We’ll remember, there are lots of times where even if you have a lymph node or two around, we’re not going to actually institute or change treatment. So there’s a very unique important population of people with CLL who could obviously benefit from telemedicine moving forward. 

When Is a Full Mastectomy Appropriate for Metastatic Breast Cancer Patients?

When Is a Full Mastectomy Appropriate for Metastatic Breast Cancer Patients? from Patient Empowerment Network on Vimeo

Dr. Stephanie Valente discusses mastectomy for metastatic breast cancer patients, including common misconceptions around breast cancer surgery.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

See More From INSIST! Metastatic Breast Cancer


Transcript:

Dr. Valente:                

So, there are a lot of reasons that a woman undergoes a mastectomy. The first one is choice. So, anytime somebody is diagnosed with breast cancer, they actually have the choice of whether or not they want to remove their whole breast. So, even if their cancer is small, they do have the option of removing the whole breast. If the cancer is smaller, they might have the option to save the breast, which is called a lumpectomy.

Sometimes cancer is found, and it’s a little bit more advanced where saving the breast is not an option. So, the cancer is larger than a lumpectomy would allow. And sometimes that’s what’s called the extent of disease. So, the amount of breast tissue that’s involved requires a majority of the portion of the breast to be removed.

So, just because a woman has breast cancer that’s made its way out of the breast, into the lymph nodes, or beyond – so, metastatic cancer – doesn’t necessarily mean that she needs a mastectomy. So, just because you’ve got metastatic cancer doesn’t necessarily mean that the breast needs to be completely removed.

So, I think that one of the biggest misconceptions is that the more aggressive somebody is with their surgery, the better their chances with survival.

And again, taking a step back and saying you can choose a more aggressive surgery, but a more aggressive surgery doesn’t necessarily mean it gets you out of chemotherapy or it gets you out of radiation therapy. Those things are recommended, independent of a woman’s choice for the type of surgery that she may or may not pick.

Metastatic Breast Cancer: Accessing the Best Treatment For YOU

Metastatic Breast Cancer: Accessing the Best Treatment For YOU from Patient Empowerment Network on Vimeo.

How could genetic testing results impact your metastatic breast cancer treatment options? In this INSIST! Breast Cancer webinar, Dr. Julie Gralow discusses essential testing, the latest targeted therapies and emerging breast cancer research.

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.

Download Program Resource Guide


Transcript:

Katherine:

Welcome to Insist Breast Cancer, a program focused on empowering patients to take an active role and insist on better care. Today, we’ll discuss the latest advances in metastatic breast cancer, including the role of genetic testing and how this may affect treatment options. I’m Katherine Banwell, your host for today’s program, and joining me is Dr. Julie Gralow. Welcome, Dr. Gralow. Would you introduce yourself?

Dr. Gralow:   

Hi, thanks, Katherine. I’m Dr. Julie Gralow. I’m 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.

Katherine:    

Excellent, thank you. Before we begin the discussion, a reminder that this program is not a substitute for seeking medical advice. Please refer to your own healthcare team. Well, Dr. Gralow, let’s start by helping people understand how breast cancer is staged. Could we go through those stages?

Dr. Gralow:     

The staging of breast cancer has traditionally been by something we call anatomic staging, which has the tumor size, the number of local lymph nodes involved, and whether it has metastasized beyond the lymph nodes. So, that’s TNM – tumor, nodes, metastases. And so, that’s the classic staging, and based on combinations of those things, you can be a Stage 0 through Stage 4. Stage 0 is reserved for ductal carcinoma in situ, which is a noninvasive breast cancer that can’t generally spread beyond the breast, so that’s Stage 0, and then we go up for invasive cancer.

Interestingly, just a couple years ago, the big group that oversees the staging of cancers decided that in breast cancer, that TNM – the size, the lymph nodes, and the location beyond the lymph nodes – is not good enough anymore, so they came up with a proposal for what we call a clinical prognostic stage, which is a companion to the traditional TNM staging.

What they were getting at here was it’s not just how big your cancer is, how many lymph nodes, or whatever, it’s also at the biology of your cancer. So, this new clinical prognostic stage takes into account the estrogen and progesterone receptor of your cancer, the HER2 receptor at the grade, which is a degree of aggressiveness, and then, if your tumor qualifies, one of the newer genomic testing profiles that we use in earlier-stage breast cancer, such as the Oncotype DX 21-gene recurrence score or the MammaPrint 70-gene assay.

So, all of that goes into account now, and the whole point here is that the estrogen receptor, the HER2, the grade, and some of these genomics may actually make more difference than how many lymph nodes you have, where the cancer is, and how big it is, so it’s not just the size, but also the biology of the cancer that we’re trying to include in the new staging systems.

Katherine:    

In this program, Dr. Gralow, we ’re focusing on metastatic breast cancer. Would you explain when breast cancer is considered to have metastasized?

Dr. Gralow:  

That’s a great question because technically, if the lymph nodes in the armpit – the axillary area – are involved, that does represent spread beyond the breast, but if it stays in the local lymph node areas, it’s not technically called a metastatic or Stage 4 breast cancer. So, metastatic breast cancer would have traveled beyond the breast and those local lymph nodes, and some common sites would be to the bone, to the lungs, to the liver, less commonly – at least, up front – to the brain, and it could also travel to other lymph node groups beyond those just in the armpit and the local chest wall area as well.

Katherine:   

What about subtypes? How are they determined?

Dr. Gralow:   

The main way that we subtype breast cancer right now is based on the expression of estrogen and progesterone receptor, the two hormone receptors, and the HER2 receptor, the human epidermal growth factor receptor. So, to date, those are the most important features when we subtype, and so, a tumor can either express estrogen and progesterone receptor or not, and it can overexpress or amplify HER2 or not, and if you think that through, you can come up with four different major subtypes, in a way, based on estrogen receptor positive or negative and HER2 positive or negative.

When all three of those are negative, we call that triple negative breast cancer, and that’s about 18-20% of all breast cancers as diagnosed in the U.S. And then, when all three are positive, we sometimes call it triple positive, and the reason that we subtype is because we know that those different subsets act differently and that we have different drugs to treat them with, and we’ve got great drugs in the categories of hormone receptor positive and HER2 positive, and increasingly, some recently hope in a new drug approval or two in triple negative breast cancer as well.

Katherine:     

For a patient to get diagnosed, what are the essential tests?

Dr. Gralow:  

So, we’re talking about metastatic breast cancer here, and in the U.S., maybe up to 10% or slightly less of breast cancer is technically Stage 4 or metastatic at diagnosis. That means at the time we first found it in the breast, it had already spread beyond. So, an important thing that we’ll do with a newly diagnosed breast cancer is especially if there are a lot of lymph nodes are involved or the patient has symptoms that might say there’s something in the bone, liver, or lung is staging.

So, we’ll use scans – maybe a CAT scan, bone scan, or PET scan – and we will look at whether the disease has gone beyond the breast and the lymph nodes, and if so, where. So, maybe 8-10% of breast cancer diagnosed in the U.S. already has some evidence that it has spread beyond the breast, but the most common way that metastatic breast cancer happens is that a patient was diagnosed possibly years and years ago, treated in the early-stage setting, and now it comes back, and that is the most common presentation for metastatic breast cancer, and sometimes that can be due to symptoms.

As I said, if it comes back in the bone, maybe that’s bone pain. If it’s in the lung, it’s a cough. There are symptoms. Sometimes, it’s because we’ve done a blood test or something and we find some changes there.

And so, when a breast cancer has recurred, it’s really important to document that it’s really breast cancer coming back, first of all, and so, if we can, we generally want a biopsy, and we want to stick a needle in it if it’s safe to do, and look and verify that it looks like breast cancer, and also, it’s really important that we repeat all those receptors that we talked about from the beginning because it can change.

So, a cancer up front 10 years ago could have been positive for estrogen receptor, but the only cells that survived – mutated, changed – were estrogen receptor negative, so what comes back could be different. So, it’s really critical to get that biopsy, repeat the estrogen/progesterone receptor and HER2, and also, in an ideal world, now that it’s 2020 and we’re moving more toward genomics, to do a full genomic profile and look for other changes and mutations that could drive our therapeutic options.

So, staging, knowing where the cancer is, getting a good baseline by understanding where it is and how big it is so that we can follow it and hopefully see that it’s responding to treatment, and then, repeating all of the biology components so that we know what the best options are for treatment are really critical.

Katherine:  

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

Dr. Gralow:    

Well, all those things I just mentioned are key. Knowing exactly where it is so that we can monitor it – for example, if the cancer has come back in the bones, we would add what we call a bone modifying agent, a drug like zoledronic acid or denosumab – Zometa or – which can suppress bone destruction from the cancer, but if it’s not in the bone, we wouldn’t add that.

And, we want to have a good look everywhere so that we can see if it’s responding because sometimes, the tumor can respond differently in one area than another. Also, I think it’s really important to know what your treatment options are by doing that biopsy, getting a full panel, and looking at potentially hundreds of genes that could be mutated, deleted, or amplified so that we know what our treatment options are.

And, we’re not going to use all the treatment options up front, so it’s helpful for knowing that if this treatment doesn’t work or is too toxic, what are the second-line or third-line options? So, we make sure that there’s what we call good staging up front so we know where the cancer is, and then we make sure that we’ve looked at it as best we can in 2020 with all the genomics.

That would give us the best chance of being tailored – individualized – to the tumor. Sometimes, if we can’t biopsy it, like with a needle that would go into a liver spot, then increasingly, we’re looking at what we call liquid biopsies, and that can be drawing the blood and seeing if we can find parts of the tumor, whether it be the DNA or the RNA that’s floating around in the blood, and sometimes we can get that information out of the blood as well.

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 do 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:

So, it’s something that patients live with.

Dr. Gralow:  

Right.

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.

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.

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 gonna 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.

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.

Katherine:    

For patients who may be hesitant to speak up – to advocate for themselves in the process – I’m gonna start again. For patients who may be hesitant to speak out for themselves and advocate for their own care and treatment, what advice do you have?

Dr. Gralow:   

You have a whole team who’s behind you, and I’m the MD on the team, but I’ve got a nurse practitioner, and a nurse, and a scheduler, and a social worker, and a nutritionist, and a physical therapy team, and financial counselors. I’ve got a whole team who works with me. And so, a patient might be hesitant to speak up during the actual appointment with their physician. It’s a short amount of time. I would recommend come into it with written-down questions because things go fast. You don’t get a lot of time with your doctor.

Things go fast, but don’t come in with 25 questions, either. Pick your top few that you want to get taken care of this visit because if you come in with 25 or 30, you’re gonna lose the answers to most of them. Maybe bring somebody with you who’s an advocate and a listener for you who could be taking notes, so you can process and you don’t have to write it down, or ask if you can record it. It’s really important if you’re newly diagnosed or maybe there’s a progression and you’re going on a new treatment. That’s okay too.

But, I would also say you have a whole team behind you, so sometimes, if you don’t have time or if you’re hesitant to speak up in your doctor’s visit, you can ask the nurse, or maybe you can ask the social worker for help, even. See if there’s support groups around.

Interestingly, we’ve got a peer-to-peer network where patients can request to talk to somebody else who’s matched to them by some tumor features, and their stage, and things like that. Maybe finding somebody else who’s gone through something similar, and somebody independent to talk to instead of relying on your family.

It can also be really helpful to talk to a therapist or a psychologist about your fears, and sometimes, you want to be strong for your family, strong for your children and all, but you need a safe space with somebody that you can just express your fears and your anger if that’s what’s going on, or your depression or anxiety to while you’re trying to hold a strong face for others in your family. So, I would encourage patients to look at who is the whole team and talk to the other members of the team as well, and sometimes, they can help advocate.

Also, find somebody who might be able to come to your appointments with you, somebody who will help you advocate or remind you – “Didn’t you want to ask this question?” – or be another set of ears that you can process it with afterwards.

Katherine:     

Dr. Gralow, we’ve covered a lot of useful information today for patients. Thank you so much for joining us.

Dr. Gralow:    

Thank you, Katherine.

Katherine:       

And, thank you to all of our partners. To learn more about breast cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell.

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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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.