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As a Lung Cancer Patient, What Information Do I Need to Make the Best Choices?

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Published on July 12, 2016

What information does a lung cancer patient need for testing and treatment? Janet Freeman- Daily of (grayconnections.net), a stage IV lung cancer patient, leads a discussion with Emma Shtivelman, PhD, Chief Scientist with Cancer Commons, Mary Williams, a metastatic lung cancer patient, and Mary Ellen Hand, RN, BSN, Nurse Coordinator with Rush University Medical Center. Together, they share information on self-education resources, collective decision-making, networking, liquid biopsies, and why clinical trials are the best option for stage IV patients.

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Transcript | As a Lung Cancer Patient, What Information Do I Need to Make the Best Choices?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Janet Freeman-Daily:

Welcome to today’s program. I’m Janet Freeman-Daily, a metastatic lung cancer patient.  I have a blog at Grayconnections.net. I co-moderate the lung cancer social media Tweet chat, which is hashtag LCSM, and I work with patients, researchers and doctors to improve outcomes and quality of life for lung cancer patients. And I’m very privileged today to be joined by Dr. Emma Shtivelman, Chief Scientist at Cancer Commons, Mary Ellen Hand, Nurse Coordinator at the Rush University Medical Center, Mary Williams, a stage IV lung cancer patient who was diagnosed in September 2015.  Welcome to all of you.

Group: 

Thank you.

Janet Freeman-Daily:      

Today we’re going to be talking about patients, what patients and their caregivers can do to help themselves get the right testing and treatment for their lung cancer.  Now my first question, and I’ll ask each of you to respond, is when someone is faced with lung cancer diagnosis, what information do they need to make the best choices?  So, Emma, I’ll start with you.  Should I expect my doctor to run molecular testing on my tumor as part of my diagnosis?

 

Emma Shtivelman:            

If you are unfortunately diagnosed with advanced lung cancer or metastatic lung cancer, absolutely. You should expect and demand that you have molecular testing.  There are guidelines that say that at least three genes should be tested: I would suggest to get a more comprehensive testing if possible. 

It becomes a little more difficult in lucky situations when cancer is diagnosed at the early stage. That’s not in the guidelines. In most places, in most clinics and hospitals, testing is not done.  There are experts who argue that it shouldn’t be done, because many patients with stage I and stage II never recur, so there is no point of knowing if they have certain molecular alterations.  

So there are clinical trials that actually explore molecularly targeted to drugs for patients with early stage lung cancer, but there are very few, and the biggest one of them for the most. It is unfortunately randomized, which I don’t think is a good option for a patient in stage III to have the tumor resected and get into a trial where the chances are that he or she will get a placebo. 

So there is a bit of a complicated question, and I don’t want to talk too much about it.  I obviously have strong opinions on the topic, but we can return to it if time allows.

Janet Freeman-Daily:      

Mary Ellen, you have some thoughts on this?

Mary Ellen Hand:              

Patients come to this new diagnosis of cancer and sometimes don’t completely understand what testing’s been done, and it’s completely overwhelming for them. And so I think that gathering information about what’s been done, I think that in some, I work in a market where there are several academic medical centers, so reflux testing is often done on most people’s tumors. And so we have that information up front.          

But if they originally diagnosed at the smaller hospital, that might not be done, and so we might assist them in getting that done, especially the actionable markers that were just talked about. We can guide them to what they need to get. 

Janet Freeman-Daily:      

Mary, should you expect your doctor to do molecular testing when you’re diagnosed?

Mary Williams:  

I just wish that they would have let me know that that’s what was taking so long after the biopsy and everything, because I had no idea what was taking so long after the initial diagnosis of lung cancer, because we kept on waiting.  You know, we’re so anxious to get treatment started that we felt the more time we’re waiting, the worse it’s going to get, which wasn’t the case. But I, if my first oncologist would have said we’re waiting for all the molecular testing to come back, I think I would have relaxed a little bit more.  And if I would have known a little bit more information about it, I think it would have helped to calm those nerves, to understand what was going on.

Janet Freeman-Daily:      

Well, so that raised the next question. How can patients learn more about these tests and which tests to ask their doctors about? Do you have some sources you went to to learn more about molecular testing? 

Mary Ellen Hand:              

We had, when I got the diagnosis, my one friend, she has a couple doctors in the family, and they automatically got right back to me and says you know, make sure that you get genetic mutation testing done, and that’s reason, and make sure you maybe do immunotherapy, or targeted therapy is the way they put it.  Try to get targeted therapy. 

You’re going to be a lot better off and things like that and when it ended up, when my doctor finally came back and said I was ALK positive. And she says you’re going to go on targeted therapy plus immunotherapy in a clinical trial, then it all started clicking, what my friends had said that were doctors that told me to check into, which they weren’t real knowledgeable about it. But they knew people that had it done, and it helped.  

That’s the only thing I wish. I wish I would have a little bit more information up front. Because if you go on the Internet, you just scare yourself when you first get that diagnosis.

Janet Freeman-Daily:      

Well there, there are actually several really good resources on the Internet. LUNGevity.org has a great page that explains about genomic testing with a list of questions to ask your doctors. And there’s the Lung Cancer Foundation of America and the NCI: National Cancer Institute all have sites that have good information where you can learn more about your diagnosis.  But I agree there are some places on the Internet that can give you more information than you’re ready to handle.  Mary Ellen, do you have some…

Mary Ellen Hand:              

Well, the other thing I would say is that people need per, in understanding how sick someone is.  Some people present with their lung cancer very ill, and they need to get on to aggressive treatment, because they may have an obstructing airway or some bleeding or some serious problems.  Other people just need permission that it’s a time to gather information and that their first treatment should be the right first treatment.

And so, rather than rushing to starting something, it’s gathering more information and knowing that its, the cancer that it is today, it is two weeks from now. And let’s gather this information and make a collective decision what the best treatment is for you and whether that’s a targeted therapy, whether that’s a clinical trial, whether that’s, you know, potentially having, you know, a surgery that maybe someone else told them they couldn’t have. 

So I think that it’s about just getting permission from people that you trust to take care of you, to guide that. 

Janet Freeman-Daily:      

All right, thank you. So, Emma, when a patient comes to Cancer Commons asking about targeted therapies, what do you share with them? 

Emma Shtivelman:            

I try to share information that’s relevant to them.  Patients come, you know, at very different stages.  I would say that more patients turn to when they are becoming interested in clinical trial, so they obviously self-educated themselves a little bit about it. I would try to explain to people what does it mean to have a tangible molecular alteration. 

How does it change treatment options, and are clinical trials indicated in their particular, you know, stage of disease, stage of treatment, etc.?  So there is a whole variety, and sometimes I’m amazed at how well-educated patients are, how much they read, how much they understand. And sometimes I am very disappointed with people who are probably in a state of shock initially after diagnosis, and they just cannot muster the wealth of information that’s available.

So I use different approaches in those two sort of extreme situations.  I would say that I always encourage people to participate in clinical trials, and I am very sorry that it is such a difficult process for most people to enroll into a trial where they really get very little help in the doctor’s office, unless the doctor himself is involved in relevantclinical trials. 

So that’s, I see this is one of my most important functions, to try and direct people to the relevant clinical trials that could be really beneficial for them.

Janet Freeman-Daily:     

Well, I’m very glad that you’re available to help with that.  Mary Ellen, are there other resources patients can turn to to learn more about clinical trials?

Mary Ellen Hand:              

Well, they can go to the National Cancer Institute to see what might be available to them. I think that, you know, individual hospitals have on their website what might be eligible.  I think that very often patients are directed to our clinical trials from community hospitals or even, you know, in a several state area of, you know, a physician knows that we have a clinical trial eligible, we’ll encourage a patient to participate in it.  

And I think that it’s important to, for patients to know that they’re not just helping themselves, but certainly they’re helping the community of knowledge understand how to advance cancer care. And I think that, you know, the excitement in lung cancer is that so many drugs have been approved in the last several years, and so this is an exciting time. So to be able to participate in a clinical trial that we won’t know an answer for for many, many years, it may impact them, and it may impact other people. 

Where, where I work in Chicago, there, you know, we, if patients are traveling a distance, you know, they may be able to stay with relatives.  They may, we have some housing nearby where patients can stay very affordably, so they’d have an opportunity to participate in a clinical trial that wouldn’t be available to them if they lived more remotely.

Janet Freeman-Daily:      

Well, I have to say one of the big pluses for getting more extensive genomic testing beyond that recommended in the guidelines is so that you can find out if there is a clinical trial for which you might be eligible.  I was at ASCO this year, and there was big news on testing for additional mutations for RET, METS and NTRK1, and there are clinical trials going on with those that have some good results. 

Mary Ellen Hand:              

I know we, we’re currently doing a small cell study with using immunotherapy after initial therapy, so we’re seeing people new to us from, because there haven’t been many trials on small cell lung cancer.  So think there’s excitement in the physician community to kind of be able to enroll patients in these important trials.

Janet Freeman-Daily:      

Well, I am alive due to clinical trial. When I was diagnosed, I was negative four, mutations in 10 different genes.  I got them tested.  But after I’d gone through my first two lines of treatment, I was tested and found positive for the ROS1 mutation and got in that clinical trial, and I’m still here five years after diagnosis and no evidence of disease. 

So clinical trials are really a viable option.  I did, however, learn that the different academic cancer centers tend to focus on different aspects of lung cancer, so you might have a center that’s got lots of trials for immunotherapy, but it might not have as many for targeted therapies.  So this is one place, I think, where the online networks are really valuable, because patients who are involved in these trials and in research freely share their information about how they learned about the trials and help other patients.  

Mary, did you have any experience with exploring clinical trials or you just went on?

Mary Ellen Hand:              

It just worked out where the doctor, my oncologist here, knew the doctor up at University Hospital in Cleveland that was looking for somebody like me. And my husband always tells the story about we’re waiting to see the doctor, Delatte in University. And they put me in a room, and they left the door open, and I always take my books wherever.

I read.  I read a Nook, and I had my head down. But my husband kept on saying people would go past, back up, look at me and smile and keep on going, and we found out later I was the first one to do this targeted immunotherapy clinical trial.  I was the first human to get them both together.  So it’s like, here’s the big guinea pig, and he just kept on seeing, people would walk by, nurses, doctors and that just wanted to take a look at me, of who was going to be doing this. And it just, we laugh and think, and somebody else said, some of my friends say how could you let them do that, and I said how could not let somebody do this when I had stage IV, you know, cancer, and this was my hope. 

They’re not going to, you know, just use me to see something bad happen.  I know that and my doctor up in University, he was just wonderful explaining everything and took it down to our terms and really did well. And it was just, we just walked out of there so uplifted and so happy that we were going to be in this trial, and I wish more people would consider clinical trials, because they are well worth it.

Janet Freeman Daily:       

I think especially stage IV patients need to realize that clinical trials might actually be your best treatment option and that it’s very important to look at that and think about that as a treatment option.  While you might get into a randomized trial, stage IV lung cancer treatments don’t use placebos on stage IV patients.  You at a minimum get the best standard of care.  So it’s not like someone is not going to treat you.  It is a good option. 

Mary Ellen Hand:              

But when I first got the pill, the first week, and we got up there the next, because we were going every week, sometimes twice a week. And my husband and I, because I had no side effects at all for that first week and my husband and I looked at Dr. Delatte, and we said okay, are you sure you didn’t give us a placebo?  He goes, oh no.  We won’t do that, and then I had the immunotherapy.  

Well, the following week, I had, I broke out, from my neck down to the bottom of my feet, rash, which was horrible, from me being out in the sun and not thinking about it and the sun reacted to the drug, and it was pretty bad.  I said oh, I guess I’m not having a placebo.  We knew that right then and there that we’re getting a real drug.

Janet Freeman-Daily:      

Okay, well, so another question.  Most of this testing so far is based on people analyzing tumor tissue, but the FDA recently approved a liquid biopsy that can test for EGFR using blood.  So what does this mean for patients?  Emma, do you want to start?

Emma Shtivelman:            

I think this is a great test. I know that at the ASK Conference this year, the liquid biopsies in general for cancer diagnosis and also follow-up of the treatment efficacy were very extensively discussed. There was some disagreement amongst the experts, but, in general, I think it’s a great technology. It, the, the approaches for patients, it’s a no-brainer. 

It’s much easier to donate to the lab a few drops of blood than having a biopsy, which could, you know, for lung cancer, it’s not a trivial procedure.  It can have some serious consequences like infections, pain, etc. So it’s a great thing to have these particular tools in the arsenal of diagnostics and treatment. The great thing is you can do it repeatedly and follow up the presence of mutation. 

Also, the other fact that I would mention is that when a biopsy of tumor is tested, you only get a little area from one of the tumors.  In a metastatic patient, there would be many tumors present, so you only test one. It’s already well-known that different tumors, even in the same patient, could have evolved in different ways and have different mutations. 

When you test blood for presence of some mutations, you cover them all because if they are metastatic, you just assume that all of them produce cells, metastatic cells that get into the bloodstream.  So I think having liquid biopsies is great.  The corbus test that was just approved last month by FDA for EGFR-mutant lung cancer is a first tiny, tiny step, but there are also many other tests in development and some of them are used.  There is a test called Guardant360. 

Janet Freeman-Daily:      

Mary Ellen, I know that a lot of patients are very excited about liquid biopsies, and they know there are many products on the market. How do you talk to patients about this when they come in and want to use liquid biopsies as part of their treatment?

Mary Ellen Hand:              

We prefer to get a definitive biopsy because we have more tissue. We may be able to have that available to the patient to direct their therapy now, and have that information for later. But, I think there are people who are not medically strong enough to undergo a biopsy of any sort. An FNA is enough material to make a decision, especially if you are looking for something like an actual mutation.

Janet Freeman-Daily:      

I need you to define what FNA means.

Mary Ellen Hand:              

A fine needle biopsy. So, say someone has a lymph node that you can feel, and you can put a needle in it, but you can't put a big enough need to get enough information. So, it would be better for those people to proceed to a liquid biopsy, so that it's easier on them, and it can direct their treatment.

Janet Freeman-Daily:      

I did her at ASCO, some doctors say that when a patient—when they're unable to get sufficient tissue, they will try a liquid biopsy such as the Guardent 360.

Mary Ellen Hand:              

Right. And, some people have had a biopsy that was non-diagnostic, but it's very concerning for cancer. So, to have this as a back-up option is very helpful as well because you can't treat someone with presumptive cancer. You need to have proof of cancer.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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