Why Getting a 2nd and 3rd Opinion Made a Difference In Her Cancer Treatment, With Sasha Denisova

This podcast was originally publish on WE Have Cancer by  on May 7, 2019 here.


Sasha Denisova – WE Have Cancer

Seeking out a 2nd and 3rd opinion in her cancer treatment resulted in a dramatic improvement in Sasha Denisova’s quality of life.

Sasha first appeared on this podcast in Episode 83 where she shared the struggle she faced getting doctors to take her colorectal cancer symptoms seriously.

During our latest conversation she discussed why she made the decision to forego treatment at the Mayo Clinic in Minnesota to seek treatment at Memorial Sloan Kettering in New York City. We also discussed:

  • How she got the courage to challenge the initial treatment recommendations made by her doctor and why it’s important for everyone to advocate for their best care.
  • The importance 0f seeking out opinions from the top rated cancer facilities in the U.S.
  • How she eased herself back into working out in the gym and why working with a guided fitness instructor was important.
  • Why exercise is vital to her well-being and how most cancer patients can find an exercise routine that works for them.

Take Control Of Your Care When You’re Seriously Sick via NPR

This podcast was originally publish on NPR by John Henning Schumann, Mara Gordon, and Chloee Weiner on September 7, 2019 here.


Finding out you have a serious medical condition can leave you reeling. These strategies from medical and lay experts will help you be in control as you navigate our complex health care system and get the best possible care.

Here’s what to remember:

1. Your primary care doctor is the captain of your health care team.

With any serious diagnosis, there will usually be more specialists to see. Having a primary care doctor you trust helps coordinate the information flow and keep track of the big picture. Your primary is on her toes for possible medication interactions. Regular preventive measures shouldn’t be overlooked, either.

2. Don’t be afraid to get a second opinion.

If you’re offered treatment such as chemotherapy or surgery that can be life-altering, it’s crucial to get more than one opinion, ideally from a doctor working for a different institution. Oncologists and surgeons expect patients to seek second opinions — many provide them as a major part of their practice. If your doctor resents you seeking more opinions, that’s a red flag.

3. Get organized, stay organized, and find someone to help you if you can’t do it yourself.

Make a list of what you hope to accomplish at the doctor’s office. If for some reason you aren’t able to take notes, bring someone along who can act as an advocate and make sure your concerns aren’t overlooked. Ask for copies of your medical chart and test results so that you are part of the conversation — you have a legal right to see your records.

4. If you need a procedure, go to someone who does it all the time.

It’s true for medical care as it is in life: The more a doctor does a procedure, the better at it she’ll be. This means fewer complications and better outcomes. It’s OK to ask your doctor how many times she’s done a procedure; a high volume means competence when things go as planned, and calmness for unforeseen complications.

5. Use the Internet, but use it wisely.

Contrary to what you may think, your doctor wants you to be well-informed and engaged with your health. There’s more medical information available online than ever before, but a lot of it is garbage. Stick with trusted sources like the National Library of MedicinePubMed.gov, or learn about and use the U.S. Preventive Services Task Force.

6. Figure out what matters to you, and fight for it

Our default setting for health care is that more testing is always good. But that’s often not the case, as tests have side effects and can cause undue anxiety because of false positives or incidental findings. Have a frank conversation with your doctor about your values and what you want (and don’t want!) and you’ll be an empowered patient with a doctor as your advocate, not your adversary.

Learning How to Simplify Cancer With Joe Bakhmoutski

This podcast was originally publish on WE Have Cancer by Lee Silverstein on June 18, 2019 here.

Joe Bakhmoutski – WE Have Cancer

Joe Bakhmoutski was diagnosed with Testicular cancer in 2016.He founded Simplify Cancer  to provide support and advice to those touched by cancer. During our conversation we discussed:

  • Why he created Simplify Cancer
  • How he came to be diagnosed with Testicular cancer
  • How people perceive various cancers and how some are deemed “embarrassing”
  • What patients can do to prepare for their first oncologist appointment and the free tool he offers on his website to assist with this.
  • The book he’s writing to help men dealing with cancer.

Links Mentioned in the Show

Simplify Cancer – http://simplifycancer.com/

Facing a Cancer Diagnosis: Advice From An Expert

Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.

Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key.

Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.

See More From the The Pro-Active AML Patient Toolkit


Transcript:

One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.  

 So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.  

 So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.  

So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.   

And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources. 

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

Advice For Newly Diagnosed Patients #patientchat Highlights

Last week, we hosted an Empowered #patientchat on advice for newly diagnosed patients. The #patientchat community came together and shared their best advice and tips.

The Top Tweets and Advice…

 

Ask Questions

 

 

 

 

Seek a Second Opinion

 

 

 

 

Stay Informed


Full Chat

Finding Your Voice #patientchat Highlights

Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.

A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:

The Top Tweets…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Full Chat

Finding the Funny When the Diagnosis Isn’t

It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition like multiple sclerosis, or HIV, or diabetes?

I have a number of friends dealing with the life-long aftermath of an MS diagnosis. One of them tipped me off to Jim Sweeney several years ago. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been wrestling with the impact of that diagnosis – finding the funny most of the time – ever since. Jim’s body of work includes decades of live improv, and his one-man show “My MS & Me,” which you can hear on the BBC Radio 1 site. His MS has progressed to the point that he’s now in a wheelchair, and his public presence is mostly limited to Twitter, where his profile says he “can’t complain but sometimes do,” and YouTube.

Some other sterling examples of funny-or-die in managing chronic disease are Mark S. King’s fabulously funny My Fabulous Disease blog. Mark is HIV+, so he shares information, resources, and myth-busting about all things HIV in his posts and videos. He’s brutally honest about pretty much everything, with plenty of humor to soften the impact of what it’s really like to live with what anti-retroviral treatments have made a chronic illness, not the death sentence it too often was in the first two decades after the viral epidemic started in 1980.

Then there’s the “laugh out loud at the absurdity” Six Until Me site from Kerri Marrone Sparling, who writes about her life as a Type 1 diabetic. She covers everything from exceedingly random TSA security agent behavior when confronted with diabetes-related medical devices, to “pregnant while diabetic” to dealing with the emotional impact of living with a busted pancreas, all with a good dose of highly-readable snark.

How much courage does it take to laugh out loud, in public, at an incurable disease? Jim, and Mark, and Kerri certainly have courage – and comedy chops! – at the level required.

On the provider side, there are a number of docs who are breaking up the waiting rooms and wards.

The most visible of these comedic clinicians is Dr. Zubin Damania, a/k/a ZDoggMD  – “Slightly Funnier Than Placebo” was his tagline for years, before he shifted to “The Voice of Health 3.0.” ZDogg is a hospital medicine specialist who’s built an empire of snark over the last decade plus, some G-rated and some most definitely NSFW. His videos alone guarantee hours of laughter, and he’s one of the best users of Facebook Live around.

I’ve even found a scholarly article entitled The Use of Humor to Promote Patient Centered Care – be warned, though, that (1) it’s a “scholarly article,” meaning that it’s had all the laughs surgically removed and (2) they want $42.50 for it. You have been warned.

What’s my point here? I actually have two:

1. Laughter really is the best medicine.

Humor keeps us in touch with our humanity, and – unless it’s insult comedy, which I do not recommend in the health care arena, unless it’s insulting bad health care – it helps to comfort others in the same situation.

2. Patients and providers need to work together to help each other find the funny.

If you’re a doctor, don’t just say “you’ve got [insert dread diagnosis here], here’s the treatment plan, call if you have any questions, … NEXT!” Look your patients in the eye, and channel your inner comedian whenever it’s appropriate. If you’re a patient, connect with other people in your situation and see how they’re finding the funny. And help your doctors find their funny. If they can’t find it, you should find another doctor.

We all need to work together to break each other up. Laughter can comfort, can calm, it can even heal.

That’s real disruptive health care, no prescription required.

Nancy’s Lung Cancer Journey

No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

ASCO 2018 Lung Cancer Roundtable

A Lung Cancer Roundtable: Takeaways from ASCO 2018

Lung cancer experts Dr. Jeffrey Crawford from Duke and Dr. Edward Kim from Levine Cancer Institute speak about key take-aways from this year’s ASCO meeting including immunotherapy updates, newly identified genes, the role of liquid biopsies and specific questions patients/care partners should be asking as the lung cancer landscape continues to evolve.


Transcript

Andrew Schorr:

Okay.  Here we go.

Hello and welcome to this Patient Empowerment Network program produced by Patient Power.  I’m Andrew Schorr from Patient Power, and we’re discussing an update from the big American Society of Clinical Oncology meeting, ASCO, and what it means for patients and family members dealing with lung cancer today.  I want to thank our financial supporters for making grants to support this program, Celgene and Pfizer.

So we have two noted experts with us.  We have Dr. Jeffrey Crawford from Duke University and the Duke Cancer Institute in Durham, North Carolina, and Dr. Edward Kim from the Levine Cancer Institute down the road also in North Carolina, in Charlotte, North Carolina.  Dr. Crawford, welcome to Patient Power and the Patient Empowerment Network.

Dr. Crawford:

Andrew, thank you.  I’m glad to be here.

Andrew Schorr:

Dr. Kim, welcome to you.

Dr. Kim:

Pleasure, Andrew.

Andrew Schorr:

Okay.  Gentlemen, let’s start.  So I walked into the ASCO exhibit hall, which is many football fields wide and long, and I was impressed with so many companies devoted to helping doctors and their patients understand the specific biology, molecular composition of the tumor that somebody might have for example with lung cancer.  Dr. Kim, is this where it’s going, is that sort of precision medicine?  And why is it so critical for patients and their doctors?

Dr. Kim:

Yeah, thanks, Andrew.  I think it’s really important to know how the new standards are changing.  We’ve been used to a lot of therapies and how we assess folks for decease such as biopsies and histological diagnoses, and now it’s not just about that.  It’s about trying to figure out what genes exist that are unique to each person’s individual tumor.  And we know that these genes are differently made up in different folks, so just to call somebody who has a non‑small cell lung cancer, and that’s the area that myself and Dr. Crawford cover, is really not the whole picture any more.

We’ve seen this in breast cancer.  We’ve just kind of come to accept it over the last couple decades, that you’re either a hormone receptor‑positive breast cancer patient or your tumor is HER2 positive or not or you’re a triple negative, and that’s means none of those markers are present.

Well, we were never that sophisticated in lung cancer, frankly, to have the equivalent of a triple negative even though we did, and we started is seeing this in the early 2000s, especially as we looked at first the mutations like EGFR and translocations like ALK and ROS1, and now that number is just really exploding as far as the number of markers that a clinician has to check just at baseline to make the proper assessment to treat a patient with non small‑cell lung cancer these days.

And that’s exciting, but it’s also daunting in that the data and the drugs and markers are changing so frequently that it’s hard to keep up, and even as an expert it’s hard.

Andrew Schorr:

Now, Dr. Crawford, you’re in research a lot as well, and so this multiplying of genes, you keep identifying new ones, right, and then it’s a matter of finding out, well, which genes are important at which time for which patient, right?

Dr. Crawford:

Correct.  As Ed was saying, it’s a complicated task, and I think we get now a lot of information.  When we do next‑generation sequencing, we get literally hundreds of genes.  Some of them are actionable, some aren’t, and really understanding which are and which aren’t and now to interpret that is becoming a field of its own.  So molecular tumor boards have started to try to dissect this at the institutional level so people can sit down with pathologists, (?) like the pathologist‑clinicians, try to work through how to move forward on an individual patient basis.

Andrew Schorr:

So, Dr. Kim, we hear about immunoncology, immunotherapy, and drugs that are being tested in many cancers to try to help the immune system be boosted, I guess, to fight the cancer.  Maybe you could explain that because there was news about that at ASCO, wasn’t there, for lung cancer?

Dr. Kim:

Yeah.  And certainly it seems like every major meeting, Andrew, has news about immunotherapy.  And the really nice part about it, speaking very selfishly, is that there has been a lot of news about immunotherapy and lung cancer, and I get to tease my melanoma colleagues, that, yeah, you know, we know it’s been around for greater than five, six years in melanoma, but it required a large scale sort of cancer to take this into the main stream.

And lung cancer is one of the largest.  It affects so many people out there, and to have these trials testing immunotherapies and these FDA indications, has really transformed things.  What we explain to people is that it’s not like the vaccine programs in the past in that the immune system is a very sort of gray area for a lot of folks.  Some people think you can take vitamins and boost your immune system.  Other people think you just have healthy living it will do it, and all those things contribute because your immune system is really like your micro environment throughout your entire body, and a lot of things affect it, and it affects a lot of things.

But what’s really cool about these newer generation drugs that are impacting the cancer process is that cancers have become smart.  They are able to build up defenses to be sort of stealth inside the body, and so even though there were bad things happening to you your body couldn’t tell that they were cancer cells versus normal cells.  And so these new checkpoint inhibitors have focused on trying to break down the stealth or the defenses that these cancer cells have been using to invade the immune system.

And so now you’re really empowering your own body’s immune system to fight the cancer.  And that’s really exciting.  The side effects, there are some but have generally been very well tolerable.  There are always a percentage of patients who can get a hyperactive immune system, and that’s usually what causes a lot of symptoms we see, but all in all‑‑you know, we use Jimmy Carter as a poster child, he’s like 150 years old, and he’s on an immunotherapy being treated for a stage 4 melanoma and doing very well.  So that’s what my patients see out there, that’s why they’re asking about it.  We have to select the right people who is appropriate.

Andrew Schorr:

Well, Dr. Crawford, let’s talk about selection.  So we’ve alluded to testing to understand what’s at work or what sort of immune levels, we hear these terms PD‑1 and PD‑L1, and they’re even mentioned on telephones commercials for lung cancer drugs.  So how do we know whether this changing world of immunotherapy applies to an individual patient?

Dr. Crawford:

Well, that’s a good question.  So I think we’re learning as we go about biomarkers for immunotherapy, but certainly the one that’s out there most notably is PD‑L1, and so that’s a marker of this protein that Dr. Kim was talking about.  It’s an immune checkpoint, so PD‑L1 when it finds the PD‑1 receptor down regulates or lowers the immune system, and that’s a natural, naturally occurring process.  It’s important so our immune system does get overly revved up, but what happens in cancers it often gets overly depressed and suppressed, so we have inhibitors, drugs that work by inhibiting that reaction that allow the immune system to emerge and attack the cancer.

So what’s really cool about this is that the immune system itself is what destroys the cancer when you take these agents.  This is not like chemotherapy or even targeted therapy where there’s a direct cytotoxic effect on the cells.  This is really enabling your immune system to take over and attack the cancer and destroy it.  So it’s remarkable when we see an x‑ray with cancer disappearing based on restoring the immune system.

So PD‑L1 is clearly an important marker because it’s the way these first‑generation immune checkpoint inhibitors work through that process.  So one would assume that the PD‑L1 measurement would be predictive of who is going to benefit and who is not.  And in some sense it is, but it’s not at all like EGFR testing, where we are pretty confident when we have an EGFR mutation we’ll have a very high response rate, while with PD‑L1 even in patients with expression above 50 percent only about half of them get a good response.

And on the other end patients with very low response, very low levels of PD‑L1, they still have a response of 8 or 10 percent.  So it’s not a perfect marker by any means, but it has been helpful in identifying patients likely to benefit.  And what’s come out of ASCO is more and more about how to select patients for immunotherapy or a combination of chemo and immunotherapy or other options.

Andrew Schorr:

Dr. Kim, let’s talk about biopsy for a minute or how you get the information from the patient as to what’s going on and then what to do about it, if you will.  So getting a lung biopsy is not easy, and I know sometimes there’s a problem getting enough tissue to do all the analysis you want, and now we’ve been hearing about more and more companies that are doing liquid biopsy.  Okay.

So here’s Mr. Jones, you want him to have a lung biopsy.  Would there also be a liquid biopsy or‑‑and not just at diagnosis but would you be doing some of this along the way to see if treatment is working?

Dr. Kim:

Yeah, we’ve always been attracted to some of the other cancers that utilize liquid tests, ovarian cancer, CA125, PSA, prostate cancer, although we’re still not really clear on where we’re supposed to be using that to screen patients, but that has given people is principle that they like to follow things.  And that’s why cholesterol, for instance, was such a powerful sort of marker even though the relevance of it has been questioned by cardiologists.  People can see there is an effect.

So, first of all, we have to say that nothing has completely replaced tissue.  That is really the gold standard.  It still is.  I tell our interventionalists, whether it’s a pulmonologist, interventional radiologist or anyone, I don’t want a diagnosis.  I want tissue.  Because they can make a diagnosis by doing some brushings or some cytology, and they can tell me it’s an adenocarcinoma favoring lung.  That is not helpful.  We need to absolutely have data that allows us to send for these molecular tests which includes, as Jeff mentioned, PD‑L1.

We need EGFR mutation, ALK, ROS1, BRAF.  These are all very important markers now that need to be sent.  And in some cases, at some centers they send for the larger panels.  What you get are 3‑ to 500 genes.  I don’t need 3‑ to 500 genes, but there are certainly clinical trials out there that can help match patients into trials based on these genes, so it is some utility.

But the blood‑based markers and the biopsies are improving.  There are definitely very‑‑there are good data that show concordance when they’re positive.  So if you do a blood test and it shows a positive mutation for EGFR, for instance, you can be pretty confident that the tissue has that as well.  The problem is that when you get a negative result.  And the negative result, those percentages aren’t disconcordant because (?) really show the amount of accuracy, and so you can’t take a negative test at face value.  We don’t standardly do liquid biopsies in patients unless the patient really has a contraindication to doing a traditional tissue biopsy.

As far as the surveillance aspect, as you mentioned, we do that on research.  So on our research studies we do follow patients at every cycle with another blood draw, in addition to what they give in labs, so it’s not an extra stick.  It’s just extra biopsy.  And we do try to follow to see if we can see some of these different mutations either go up or down based on how the treatment is working or not working.  And we’re hopeful that this type of research down the road can lead to more predictive assays that are easier to gather so we can either surveil patients to see if they have cancer, if it’s gone away, if it’s come back.

You can imagine somebody who has been treated for cancer, who has no evidence of disease on a CAT scan but maybe with blood surveillance we can get an early sign if something is coming back.  These are all possibilities and are being investigated, but right now it’s really a backup plan if tissue can’t be adequately gathered.

Andrew Schorr:

Dr. Crawford, of course you’re doing research as well.  Do you agree with this, where we are now and where we’re headed?

Dr. Crawford:

Absolutely.  I think what’s happened in lung cancer is because of this need for tumor tissue, as Dr. Kim has pointed out, it’s really transformed all the interventional things we’ve been doing.  We were moving in the 90s to smaller and smaller biopsies, smaller and smaller needle aspirations just to make a diagnosis, but now we’ve gone back the other way where we’re retraining our pulmonologists to get larger cores of tissues.  They’re developing new techniques to get more tissue, endobronchial biopsies.  CT interventional people have been enormously helpful for getting core biopsies so we get adequate tumor tissue to do the molecular tests we’ve been talking about.

So that’s really fundamentally important and important to have at every institution hospital across the country.  It’s one thing for Levine or Duke to be able to do this, but it really needs to be done in smaller community hospitals and done well by interventional people who can get the tissue we need because the samples can always be tested at a central site if the pathology labs can’t do it locally.  We have to be able to get the tumor tissue.

Andrew Schorr:

Let’s pull this together for a little bit.  I want to see if I’ve got this right.  So you’re having a revolution now in more genes being identified and trying to decide what’s actionable, whether you have approved medicines or combinations or drugs in trials, that both of you have alluded to, could for research purposes you identify something and where that could offer hope to a patient where otherwise the existing therapies might not match up.

So what actions should patients and family members be talking about?  And you said, Dr. Crawford, like at the community level or if they have a university hospital as a choice to go.  What should they be doing now because obviously anybody diagnosed with lung cancer or their family member, we want the longest life and the best chance right now, and yet you have an evolving field.  So what would‑‑Dr. Crawford, how would you counsel patients and family members so that with what you have available, either as approved therapies or in trials, could be available to them?

Dr. Crawford:

Well with, first, let me back up a second to say we’ve been talking mainly about advanced lung cancer.

Andrew Schorr:

Right.

Dr. Crawford:

So it’s important that patients get diagnosed early.  It’s important that patients who are eligible for CT screening and to go that so we can detect lung cancer at an earlier stage and hopefully offer them curable surgery, and then for them to get evaluated by a multidisciplinary team if they’re in early stages to see is surgery alone the right thing, surgery and chemotherapy, a combination with radiation, so all those standards are still present in early‑stage disease.

Now, as we may talk about, immunotherapy and targeted therapy may have a role there as well, but I think our curative strategies remain intact there.  So it’s very important to have availability of a multidisciplinary team that can really assess cancer at all stages.

For the advanced cancer patients then, what’s particularly important is for every patient to get molecularly defined tumor testing being done.  So we not only need to know the pathology, as Dr. Kim has said.  We really need to know the molecular phenotype of cancer to really make the best treatment approach for patients with advanced disease.  And in most patients that should happen before they ever talk about chemotherapy.  We need to know are there better approaches for that patient, and we’re not going to know that without these tests being done.

Andrew Schorr:

How about you, Dr. Kim?  I mean, still chemotherapy is still around, still in combination.  People understand there are side effects, not that there are not side effects with the new immunotherapies, but people would like to skip to the most effective treatment first.  So what recommendations would you have for our listeners?

Dr. Kim:

Yeah.  You know, we’re talking strictly about the advanced lung cancer patients.  The new standards in non‑small cell, both nonsquamous and squamous, now contain an immunotherapy combined with chemotherapy in markers that are lower selected or unselected.  I agree with Jeff.  You know, the biggest struggle we always want to tell our patients is be patient.  Do not let the chemotherapy start without having the results of your markers.

And that’s where sort of this new diagnosis of cancer comes in, the fear of it growing while you’re waiting a couple of weeks for the results of these markers, but we have to reassure patients it’s okay because if you just wait the extra one to two weeks.

And I understand it could take longer getting the biopsy to get enough tissue, sending it away, taking three weeks, and then your doctor, who is maybe not as sophisticated at reading these very, very, 18‑page reports, take some time to evaluate it.  It could be five weeks right there very easily, and we don’t like to wait that long.

But if you do have a marker present, and if it is‑‑and now almost 50 percent of the patients with non‑small cell have this, have a marker, maybe we’ll be able to give you something in lieu of chemotherapy that’s not a pill, single‑agent immunotherapy.  And certainly as a default now we’re seeing again new standards of care.  New standards of care are combination therapy, chemotherapy with immunotherapy based on data that’s been presented in the last couple months.

And so as a biomarker person I love seeing marker‑enriched populations receiving less therapy, but as we begin to incorporate these drugs in our standard regimens we’re seeing improvements that are undeniable and are forcing us now to readjust or new standards.

Andrew Schorr:

Dr. Crawford, so I’ve heard along the way, and I know knowledge is expanding, whether or not some of these newer approaches apply to people whether‑‑you know, whether they smoked or not, whether they had a history.  Where are we now with having the widest array of approaches for the widest array of people whether they’re smokers or not?

Oh, we lost your audio.  Go ahead.

Dr. Kim:

Am I back?

Andrew Schorr:

Yeah.

Dr. Kim:

So smoking is clearly an important factor in outcome for patients, and it’s also somewhat predictive of likelihood of different things.  We know smokers have a lower rate of EGFR and ALK translocations, mutations.  We also know that they have a higher rate of PD‑L1 expression and may be more likely to respond to some of these immunotherapies, but those are just generalized statistics.  And we have smokers who have EGFR mutations, and we have never smokers who respond beautifully to immune checkpoint therapy, so the answer is we have to do the molecular testing and sort out who has what.  Smoking may influence that frequency, but on any individual patient basis we have to have the tests to know how to best to treat them.

Andrew Schorr:

That’s good news.  So, Dr. Kim, you had referred earlier about cancer being kind of wily, if you will.  So is it possible that the molecular testing results at time of diagnosis further down the road may be different?  In other words, some other gene is driving the cancer should it come back or it’s still going, and you need a different approach.  In other words you have to change horses, if you will.

Dr. Kim:

Yeah, that’s a great point, Andrew.  You know, back in 10 years ago, almost 11 years ago when we initiated this trial while I was at MD Anderson called BATTLE, the whole principle was to rebiopsy patients once they completed or once the first line of therapy stopped working.  And for that very point you brought up is that these tumors change.  If you use a baseline tissue that’s a very different environment that that tissue was exposed to.  It has not been treated with chemotherapy, it’s not been under different stressors, and nor has it now begun growing after getting chemotherapy.

So a patient, just as you say, who has been treated maybe there was some success but then it‑‑with chemotherapy it’s always a little transient, and then now the tumor is growing despite being treated, that could be a different tumor.  It’s been shown also by the Boston group that you get transformation to small cell, of all things, in about 15 percent of patients.  And so different histologists altogether.  So who knows what will evolve out of the cancer that’s been treated that is now beginning to grow.

And so I think it’s really important to have a repeat biopsy when this occurs to help again drive the appropriate treatment.  And, as we talked about earlier, if it’s difficult sometimes a liquid biopsy can even be done at this setting if it’s difficult or the patient is has a difficult area to get tissue.

Andrew Schorr:

So, Dr. Crawford, you have lung cancer meetings throughout the year, but the ASCO meeting with like 40,000 people across all cancers from around the world, it’s a big meeting.  You’re involved in research and, of course, with existing therapies as well, how positive do you feel about change and even the rate of change to offer hope for people dealing with lung cancer today?

Dr. Crawford:

I’m as excited about lung cancer as I’ve ever been, and I’ve been doing this for quite a while.  The rate of change is, as Ed has pointed out, is dramatic.  The number of new agents that we have seen over the last year, both targeted therapies and immunotherapies, and the rate of change, it’s not just ASCO every year.  AACR, a meeting that’s normally more basic research, had major breakthrough discoveries (?) inaudible, as well I’m sure this year, and Europe will have additional new discoveries as they did last year.

So it’s really changing every few months, our guidelines through NCCN have to be changed almost monthly, and I think that’s a good thing.  It’s telling us that new knowledge is really being moved very quickly into the patient care arena.

Andrew Schorr:

Dr. Kim, so we’ve talked largely about non small‑cell lung cancer, and you’ve rattled off some of the different types.  There’s a percentage of people, smaller percentage, but people with small cell‑lung cancer.  Were there things you were hearing there at ASCO that could offer hope or in research to help this population as well?

Dr. Kim:

And certainly Jeff is the expert here.  He’s had a long career with it.  Small cell has always been that tough cancer where you get teased a little bit.  Again, if you’re fortunate enough to find someone in limited stage you can try to deliver curative intent therapy.  If they happen to be in an extensive stage it really becomes about trying to give chemotherapy that has a high response rate, and so you feel good about that, but then the difficult aspect of it is that in fact it doesn’t last forever.  And so when it does again not respond, it’s not responding, we’ve got to figure out some things.

The immunotherapies have been very widely tested, and so there are some therapies that are coming.  There are some that are approved, nivolumab, ipilimumab have been used.  They’re trying to incorporate in combination with chemotherapy with these immunotherapies.  There are some other drug classes, (? Phonetic) roba‑T and others that are being looked at very closely in small cell.  So I love the fact that there’s spillover in the small cell because it wasn’t really a high area of importance for a lot of development of drugs, which was unfortunate because we still see those patients, but it’s nice to see that there’s a lot of studies been looking at these types of drugs.

Andrew Schorr:

Okay.  Dr. Crawford, any other comment you wanted to make about small cell?

Dr. Crawford:

I would say it’s an area that’s been difficult to see advances.  Small cell presents generally at more advanced stage, so very few patients can have surgery.  Chemo and radiation can still be curative for early‑stage patients with lymph node involvement who don’t have distant disease, but in the advanced stage setting we’ve been using the same chemotherapy for 20 years.  Our supportive care has gotten better, we’ve made some advances, but we’re hoping immune therapy and others will make a difference.

It’s kind of interesting.  Small cell, you would think, since it’s prevalent largely in smokers, people with smoking exposure, could be very‑‑a lot of mutations being present.  We know that total mutation burden is a nice predictor of benefit in non small‑cell lung cancer, so we think that would‑‑might play out here.  There is PD‑L1 expression in small cell but it’s not as intense.  And there is some separation by PD‑L1 score of benefit for immune checkpoint therapy in small cell, but the responses in general are less than they have been in non‑small cell.  So we’re going to need more, more homework to figure this one out, but I think we’re taking some steps in the right direction.

And as Dr. Kim pointed out, roba‑T is a targeted therapy, maybe one of the first targeted therapies we’ve had in small cell that attacks antigen present on a lot of small cell called (?) B L L 3, and there are other therapies being developed against that B L L 3 because we know that’s an important marker.  So I hope we will see agents that are truly targeted therapies in small cell in the next few years.

Andrew Schorr:

Okay.  So I think as we pull this together, and I think you were rattling off some acronyms, and that’s sort of what we’ve been seeing a lot in lung cancer now.  We’ve talked about EGFR and ALK and ROS1, and we talked about also PD‑L1.  So I know for patients it can be confusing, but look back, review this program with Dr. Crawford and Dr. Kim were saying about if you have someone diagnosed with advanced lung cancer to get that molecular test (? Inaudible) and make sure that the experts like this in your major center like this, that they have the information.  And then if you need to (? Inaudible) you may get (? Inaudible).  So (? Inaudible) but there’s help in second opinions from people like this.  Dr. Crawford, did I get it right?

Dr. Crawford:

I think you did.  You’re a good student.

Andrew Schorr:

Okay.  All right.  Well, we have two professors with us, Dr. Edward Kim from the Levine Cancer Institute in Charlotte, North Carolina, my old home down, and Dr. Jeffrey Crawford from Durham and Duke University.  I’ll say that even though I went to the University of North Carolina eight miles down the road.

Dr. Kim:

You had to say that.

Andrew Schorr:

Yeah.  Thank you.  Thank you both for your work in treating patients and in researching, helping give us a window into this ASCO conference, but I get the sense you‑‑you said it, Dr. Crawford‑‑you’re having meetings every couple of months and talking to your peers all the time, and this is a faster changing field.  Thank god, right?  So thank you so much.  Dr. Crawford from Duke, thank you so much for being with us.

Dr. Crawford:

Andrew, thank you so much and thanks to all the patients who are joining in today.  It’s for you we do all that.

Andrew Schorr:

Yeah, thank you.  And Dr. Kim, thanks.  I interviewed you years ago, and you were at MD Anderson.  Now you’re in Charlotte and you have a wonderful program there.  Thank you for being with us.

Dr. Kim:

Thank you, Andrew.  It’s our pleasure, and again, we’re just as excited as the patients because we get to offer them these really cool therapies and research studies.

Andrew Schorr:

Right.  Okay.  All right.  All the best to our patients and family members watching.  For the Patient Empowerment Network, I’m Andrew Schorr from Patient Power.  Remember, knowledge can be the best medicine of all.

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.

What Does It Mean To Be An Empowered Patient?

The term “patient empowerment” is among the top buzzwords in health care circles, but as with many buzzwords, they can mean different things to different people.  The term is most often used to emphasize the value of having patients assert greater control over their health and health care.  WHO defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health” (WHO 1998).  This shift is due in large part to the use of technology that facilitates increased patient access to information via the Internet, peer-to-peer sharing, consumer health devices, and mobile apps.

In a recent Twitter chat, I set out to explore what it means to be an empowered patient today.  The global participation of those who shared their views on the topic shows that patient empowerment is something of universal interest.

Seven Essential Components of Patient Empowerment

1. Information

Information is fundamental to the process of patient empowerment.  Rare disease advocate and parent, Anne Lawlor (@22Q11_Ireland) believes that “an informed educated parent is an empowered one.”  Patients make the best decisions when armed with the right information.  To make genuinely informed decisions about our treatment we must have access to the relevant information needed to make those decisions. “Being informed is key to empowerment for me,” says specialist palliative care social worker, Deirdre McKenna (@KennaDeirdre). “Accurate information, clearly communicated and an available space to discuss and explore options and choices.”

Research shows that access to the right information, at the right time, delivered in the right way, leads to an increase in a patient’s desire and ability to take a more active role in decision-making.  Open and transparent communication and access to a patient’s own medical records is a key driver of patient empowerment. Medical Director and Consultant Surgeon, Dermot O’Riordan (@dermotor) believes to truly empower patients “we should be aiming for the “Open Notes” principles of default sharing of all documents.”    As patient advocate and CEO of Medistori Personal Health Record, Olive O’Connor (@MediStori) points out, “the patient is at the very core of every single service they use – they know everything there is to know about themselves, in the home and outside of it. Yet patient records are not kept with them!”

The OpenNotes initiative began in 2010 as a year-long demonstration project, with 105 primary care physicians at three diverse U.S. health care centers inviting 20,000 patients to read visit notes online through patient portals. Findings from the study suggest that shared notes may improve communication, safety, and patient-doctor relationships, and may help patients become more actively involved with their health and health care.  Evidence also shows a sixty percent improvement in the patient’s ability to adhere to medications, a major problem with managing chronic pain conditions. What is key to the discussion on patient empowerment is that this initiative “demonstrates how a simple intervention can have an enormous impact, even absent advanced technology” (my emphasis).

2. Health Literacy

While access to information is a key driver of patient information, health literacy is  defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” (National Library of Medicine).  Health literacy should come before digital literacy. “Health literacy is crucial,” says healthcare analyst, Matthew Loxton (@mloxton), “and you cannot get empowerment without health literacy.” Soo Hun (@soo_cchsc), Programme Manager at the Centre for Connected Health and Social Care, believes “digital is a key aspect but health literacy, even basic literacy is a must. Not all things digital requires tech know-how but all health information requires basic literacy. An app for meds reminder is no use if a patient lacks understanding of why medication is needed in the first place or why they need to be taken promptly.  We spend too little time transferring knowledge to patients.”

This transfer of knowledge is crucial to the empowerment process, according to Olive O’Connor. “At the first point of contact with the patient,” she says, “education on how, what, why, where and when in relation to a condition or medication should be talked through fully. All other tools (digital, leaflets etc.) should come after the conversation which is key to empowerment.”

3. Digital Literacy

Cornell University defines digital literacy as “the ability to find, evaluate, utilize, share, and create content using information technologies and the Internet.”  It’s interesting to note that opinions vary on whether digital literacy is essential to patient empowerment. RN turned patient advocate and health activist, Kayoko Ky Corbet (@kkcorbet) doesn’t believe that “digital literacy is an absolute requirement, but the ability to find accurate relevant information, and understand the information is.” Breast cancer advocate, Jennifer (@vitalfrequencis) agrees that “digital literacy is not fundamental and should not be part of the equation. Empowerment needs to be across all socioeconomic groups. Otherwise…a whole bunch of patients may never be empowered.”

Dermot O’Riordan is convinced that “whilst it sounds nice to say that digital is not ‘necessary’ for patient empowerment, in practice it is going to be pretty tough to do it properly/completely without digital.” Transplant recipient and rare disease patient, Carol McCullough (@Imonlyslightly ) also believes “digital literacy strengthens the empowerment process.” She too points to “access to your medical information online” as a key component of the empowerment process. “Knowing your personal medical data is strength, as is education about your illness,” she says.

Maternity campaigner, SeánaTalbot (@SeanaTalbot) believes that “those with long-term conditions and access to technology have a better chance of accessing information and support.”  Indeed many patients have found in the online world of peer-to-peer healthcare an environment in which they are supported to become a more empowered participant in their healthcare. As I look back on my own empowerment journey, my progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches, and most helpful of  all  through patient peers online. Finding and being part of a patient community can be an important step on the path to empowerment.

4. Self-Efficacy

Self-efficacy, as it relates to healthcare, is belief in your ability to effect change in outcomes so that you can achieve your personal health goals. The patient empowerment definition which comes to us from the European Patient Forum describes empowerment as a process that “helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.”

Developing a sense of personal control over your health is in itself empowering. The empowered patient is confident in their ability to manage their condition. When unsure about where to go or what to do next they will feel confident to ask questions of the healthcare professionals providing their care.  This confidence comes easier to some than others, and even the most confident may need guidance from their doctors in managing their disease. Endocrinologist, Iris Thiele Isip Tan, MD (@endocrine_witch) points out that “some of my patients are surprised when I teach them how to adjust/titrate insulin doses. Apparently not all MDs ‘allow’ this. Some need handholding because they get anxious about the responsibility.”

Digital leader and physiotherapist, Linda Vernon (@VernonLinda), believes “for authentic patient engagement to occur, we need to establish what the patient brings to the table, something akin to an individual, personal take on Asset-Based Community Development – perhaps we could think of it as Asset-Based Personal Development, supporting the patient to tap into their own internal, community or environmental resources to improve their health and wellbeing.  Engaging patients should be as much about exploring what they can do for themselves and to help the health and care system, as what we professionals can offer to the patient.”

5. Mutual Respect

The healthcare professional is the most important contact point for the patient and the system and (dis)empowerment often manifests in the patient/professional relationship. At the heart of the empowerment approach is seeing the patient-professional relationship as a partnership of equals.  Carol McCullough describes it as a reciprocal process of “mutual respect for what each person knows and being allowed to make informed choices. It is not about command and control.”

This is a partnership approach that seeks to balance clinician expertise with patient preference. It recognizes that while healthcare professionals are the experts in their knowledge of a disease, patients are the experts by experience. The empowerment process is about sharing both knowledge and experience to set new goals and learn with and from each other. Dr Kit Byatt (@Laconic_doc) agrees. “Many patients are experts”, he says, “especially rare disease patients.  I’ve learned from many in my career.”

Building better relationships and seeing the patient as more than ‘just a patient’ was a recurring theme in the Twitter chat. Elena Vaughan (@StigmaStudyIE), who is researching the impact of HIV-related stigma in Ireland, believes that “an empowered patient is treated with respect, involved in shared decision-making regrading care and treatment, and is not patronised. For people with chronic conditions, effective communication, continuity of care and establishing a relationship of trust is very important.” Sometimes, as ME blogger and patient advocate, Sally Burch (@KeelaToo) points out, “not all patients are lacking confidence to speak. The problem is being heard.”

Patient and community advocate, Triona Murphy (@Murpht01) advises doctors to get to know your patients as individuals.  “Know your patient!!…and their family,” she says. “No one size fits all! BUT there was/is still a culture of the ‘person’ stops at the door of the hospital and that person is now a patient.’”  As antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) says, “I might be a patient but I am also a creative director by profession. No one recognises me on that level. They see me as an underdog.”

6. Shared Decision Making

This partnership approach allows for Shared Decision-Making (SDM) – the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. There is ample research which suggests that health outcomes are better in patients who are more involved in decisions about their treatment.

In the SDM model, the clinician provides current, evidence-based information about treatment options, describing their risks and benefits, and the patient expresses his or her preferences and values. Matthew Loxton points to how seldom we have metrics to track whether patient goals are being met. “Yet this,” he believes, “is THE most important part of quality.”

7. A Facilitating Environment

Linda Vernon defines patient engagement as “activating the person’s inner assets and supporting them to make the best use of them.” Being supported is a key component of patient empowerment. Many patients would like to take more responsibility for their own health and care, given the opportunities and support to do so. Empowerment does not happen in a vacuum: it is a two-way process. The patient needs a counterpart in the health professional who welcomes the patient’s involvement and knows how to create an enabling healthcare environment. Kayoko Ky Corbet states she became an independent patient advocate when she realized most doctors simply do not have the time (and often skills) to take this facilitating role and promote shared decision-making that patients desperately need. As Patient Critical Co-op (@PatientCritical) puts it, “if you have a patient who wants to advocate for themselves, and become informed, you also need a doctor that respects the patient’s right to share decision making.”

Is It Empowerment or Participation?

Not everyone likes to use the term “empowerment”, as it implies that it is an authority given to someone to do something. “I balk at the idea that professionals can ‘give’ (usually on their terms) power to the powerless,” says Alison Cameron (@allyc375). “We need to create conditions whereby people can “empower” themselves.” Seána Talbot agrees that patient empowerment “doesn’t mean ‘giving’ people power.’ Rather it’s about ‘enabling’ them to recognise and use their power.”

Perhaps the term ‘participation’ (which is a more active state) is preferable? This distinction is important because empowerment cannot be imposed ‘top down’ (although it can be facilitated).  Sharon Thompson (@sharontwriter) believes that “patients should not be pressurised or need to be in a position of ‘power.’ It should be automatic that a patient is central and key to their care. Patients are automatically empowered when they are respected as being people who are entitled to understand and know about their care.”

Neither is patient empowerment about the patient taking full control or shifting responsibility to the patient.  “If the empowerment amounts to abandonment”, says Matthew Loxton, “then the patient’s health goals are not being met. Patient empowerment should never be an excuse for abandoning or burdening the patient.”

Rather, the empowerment approach, as defined by the European Patient Foundation (EPF) “aims to realise the vision of patients as ‘co-producers’ of health and as integral actors in the health system.”  Caregiver Reinhart Gauss (@ReinhartG) agrees that “patient advocates want to work with not against doctors – to share experiences and to grow in knowledge.”  Vanessa Carter is clear that “we still want our doctors, but they are not there 24/7 so patients need the right tools to make self-care possible.”

Equally, it is about recognizing that there are degrees of involvement and not all patients wish to be ‘empowered.’  There is a spectrum of interest in wanting to assume an active role in care – from being passively receptive to fully engaged. It is up to the patients themselves to choose their own level of engagement. Pharmacist Chris Maguire (@chris_magz) sees this choice as the essence of empowerment. Patients “get to decide how much they want to look into things and take control. Or they want to be guided on the journey and have trust in their healthcare providers. But the key is that they decide the level of interaction and are not dictated to.”  Kayoko Ky Corbet agrees that “true patient empowerment should be about helping patients get involved at their highest potential or at the level they choose.” However, she says “it’s also important to keep the option of involvement open. Ideally patients should get opportunities to change their minds to participate in decision-making later.”

Empowerment as an Ongoing Process

Empowerment is a non-binary, non-linear process. Your needs may change over time. You might feel empowered in a certain context, but disempowered in another. Healthcare communicator, Michi Endemann (@MichiEndemann) makes the distinction that “talking about empowerment as a healthy person is quite different than talking about it as a patient.”  As patient advocate, Rachel Lynch (@rachelmlynch) puts it, “it can be quite tiring being empowered when all you want to be is well.” A sentiment echoed by Kathy Kastner (@KathyKastner), founder of Best Endings, who clarifies how “to me ‘empowered’ assumes I’m feeling physically and mentally up to the task of ‘being engaged’. I’ve seen powerhouses who cannot bring themselves to take responsibility for their own health.”

Mental health advocate and co-founder of #DepressionHurts, Norah (@TalentCoop) calls attention to the fragile nature of empowerment. “Even the strongest can quickly feel disempowered by a deterioration in health,” she says. “Fear disempowers. Sometimes it’s a case of ‘can’t’ not ‘won’t.’”

For those who feel ready for a greater degree of participation in their healthcare (and that of their family and loved ones), Jennifer advises that “being willing to self-advocate, along with self-confidence, communication skills, compromise, research skills, and relationship building” are some of the key traits and skills you need to become an empowered patient. Terri Coutee (@6state), patient advocate and founder of DiepCjourney Foundation, adds that “empowered patients do their research, ask questions, go to appointments organized, and take a friend to help listen.”

Barriers to Patient Empowerment and Overcoming Challenges

What are some of the current barriers to involving patients more in their care? Jennifer points to a “lack of adequate time during the doctor’s visit (on both sides), language barriers, technology barriers, generation gaps, and cultural gaps.”  The solution?  “All solved by building good relationships,” says Jennifer.

Norah also calls attention to the technology barriers. “For older patients simple things like communication (hearing), or uninformed changes are extremely disempowering; as is over reliance on technology for a generation who may not have ‘tech’ understanding or access.”  Tim Delaney (@FrancosBruvva), Head of Pharmacy at a leading hospital in Ireland highlights the fact that “in acute hospitals we treat huge numbers of elderly people whose engagement with social media and new technology is lower. We need to design technology that meets their usability needs AND use whatever suits them best be it old tech or new.” Soo Hun agrees that “the tech savvy few have quicker and better access to health information and therefore can have choice and autonomy. To reverse that we need to make technology ubiquitous and make health information and choice easily accessible.”

Whilst Vanessa believes it should be “governmental policy to have digital resources in place, for example, disease specific websites / apps supported by health authorities,” Kayoko believes it can start with “tech-savvy advocates (like me) who could help patients learn to use simple digital tools.”

Matthew Loxton sees a core barrier to empowerment to be “the large knowledge/power gradients between patients and health care providers. Without access to their data, trustworthy sources of medical knowledge, and the power to execute their choices in achieving health goals, empowerment is an empty phrase.”  Triona Murphy echoes this systemic challenge by clarifying that “the whole system needs to understand the patient’s right to be equal partners in their care. IF that is what the patient wants.”

Sometimes the fear of being labelled a difficult patient can be a barrier to empowerment. “Some patients feel uncomfortable challenging the judgement or actions of their caregivers for the fear of being labelled as ‘difficult’, of offending staff and/or because of concerns of compromising their healthcare and safety,” says Tim Delaney.

Final Thoughts

Not everyone wants to be empowered in making decisions about their care, and not every doctor wants to take the time. Some doctors use medical terminology which is incomprehensible to patients, while some patients have low health literacy skills or come from cultural backgrounds that lack a tradition of individuals making autonomous decisions.  That said, Carol McCullough points out that while “not everyone may want to be empowered, for the health service to be sustainable, more people are going to have to take on more responsibility.”

Medical Doctor and Chair of Technical Advisory Board, Pavilion Health, Dr Mary Ethna Black (@DrMaryBlack) points to the inevitability of the shift towards patient empowerment. “Empowerment is an inevitable shift that is happening anyway, “she says. “We cannot turn back the tide or turn off the internet.”

Kayoko Ky Corbet agrees that we “must understand that patients making informed decisions is the ultimate way to reduce waste, pain and regrets in healthcare. It’s also morally the right thing to do!”  Patient Critical Co-op also believes in the moral imperative that “empowerment essentially means a group or society recognizing your right. Patient empowerment exists as an action patients can take to improve themselves, but the key to achieving that improvement is having a group, organization, or state enshrine and recognize those rights.” In fact, the Alma Ata Declaration defined civic involvement in healthcare as both a right and a duty: “The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.” The Declaration highlights the collective dimension of empowerment and the importance of action towards change. By working together to think internationally and act nationally we can draw on each other’s experiences so that as individuals and as a collective we can work towards better outcomes for all patients.  To quote Terri Coutee, “When we gather our collective empowered voices, we feel a strong responsibility to give voice to others.”


I would like to acknowledge the assistance of Dr Liam Farrell in facilitating the Twitter discussion on which this article is based.

Uber Health App

The Community Transportation Association estimates that approximately 3.6 million Americans miss or delay medical care because of transportation issues that cost the health care system $150 billion each year.

To help combat this issue, Uber has created a new app called Uber Health. Earlier this month Uber announced that they are working with providers to offer reliable rides for patients, care partners, and families to get to and from doctor’s appointments and the hospital.

The app will allow medical and administrative staff to either call an Uber to drive a specific patient home, or to dispatch an Uber to the patient’s house for pick up. The app also allows users to schedule the ride up to 30 days in advance, so important appointments are never missed. Planning transportation in advance enables patients to schedule rides to and from follow-up appointments even while they are still in the healthcare facility. With the ability to schedule and manage multiple rides from a single dashboard, healthcare professionals can take their level of care to the next level with Uber Health.

How It Works

Uber Health saves patients time and money, as they can focus their attention on their health instead of worrying about how they might get to their next appointment. With the help of Uber’s cost-saving methodology, patients and healthcare professionals can save money utilizing the app over hailing taxis or paying for expensive hospital parking.

Uber Health enables older patients and those with chronic pain gain independence and mobility. Because all communication with Uber Health is completed via text message, patients no longer need a smartphone and the corresponding Uber app to access Uber Health’s benefits.

The Uber Health dashboard was designed with HIPAA standards in mind, ensuring that all aspects of the service meet health care privacy and security standards.

As a part of Uber’s beta program, over 100 healthcare organizations in the U.S, including hospitals, clinics, rehab centers, senior care facilities, home care centers, and physical therapy centers are already using Uber Health.

Dashboard

 

For more information, please visit the Uber Health site: https://www.uberhealth.com

Patient Advocacy: Understanding Your Illness

The news that you, or a loved one, has a serious illness can be a terrible blow.  You may be faced with an array of emotions ranging from shock to fear to anxiety. You will likely have many questions and concerns about what the coming days and months will bring, and the impact living with this illness will have on your life and the lives of your family. Although you may be reeling from the news, it’s important that you learn as much as you can about your diagnosis, its symptoms, how it may progress and what treatment options are available. In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.

1. Obtaining Information From Your Doctors And Healthcare Team

Having answers to your questions can help you understand your illness better and feel more in control about your treatment decisions.  How much information you want is up to you. Some patients feel overwhelmed by too much information at this stage.  Others say they didn’t receive enough information.  While information upon first diagnosis is vitally important, you may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information you are given. If possible, bring a trusted friend or family member to appointments with you to take notes. If this is not possible, ask your doctor if you can record the consultation so you can focus on listening, and go back and review what was said later.

Medical care is a conversation and to have influence in that conversation you have to speak up. Never be embarrassed to tell your healthcare team if you don’t understand something they’ve said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed.

Some questions to ask your doctor about your diagnosis:

  • What are the symptoms of this illness?
  • What should you do if you notice new symptoms or if existing symptoms worsen?
  • Do you need any further diagnostic tests?
  • What are your treatment options?
  • What are the side-effects of the recommended treatment?
  • What are the benefits vs the risks?
  • What happens if you do nothing?
  • Are there other treatment options available?

Finally, ask your healthcare team if they can recommend further reading, support groups and other resources to help you learn more about your illness.

2. Finding Reliable Information Online

As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not keep pace with your increased needs. This is the point where many patients turn online to seek more information. While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online. Always discuss what you find with your healthcare team and ask them to put the information into context for your particular situation.

Here are some questions to help you determine the trustworthiness of online sources of information.

  • Who has produced the information?
  • Does the organization have commercial interests or another reason they are promoting this information?
  • Is the name of the organization and their aims in setting up the website clearly shown?
  • Does the site provide contact details if you have any questions?
  • Is the information on the website up to date?
  • Does it cite the source of the information that is being presented?
  • Does the site link with other reputable sites that give similar information?

3. Evaluating Medical News Reports

Whether it’s published in hard copy or online, medical news reports can mislead people into thinking a certain drug or treatment is the next breakthrough in a disease.  As patient advocates we must learn to read beyond the headlines to filter out the good, the bad, and the questionable.

The following questions will help you evaluate the reliability of medical news reporting.

  • Does the article support its claims with scientific research?
  • What is the original source of the article?
  • Who paid for and conducted the study?
  • How many people did the research study include?
  • Did the study include a control group?
  • What are the study’s limitations?
  • If it’s a clinical trial that is being reported on, what stage is the trial at?

Always try to read an original study (if cited) to critically evaluate the information presented. Understanding research literature is an important skill for patient advocates. For tips on how to read a research paper click on this link.

4. Learning From Peers

From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our peers can make all the difference in how we live with our illnesses.  Much of this peer-to-peer learning takes place through social media discussions on patient blogs and in Facebook groups and Twitter chats. On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or health condition. On Twitter you have a greater mix of patients, physicians, healthcare professionals and medical researchers coming together to discuss healthcare matters. It is becoming increasingly popular for attendees at key medical conferences, such as ASCO, to “live-tweet” sessions. You can follow along on Twitter using the conference hashtag which you should find published on the conference website. Another way to learn on Twitter is to join a Twitter chat related to your health condition. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project.

Final Thoughts

Understanding your illness is the first step on the path to advocating for yourself and others.

Being an advocate involves asking lots of questions, conducting your own research, and making your preferences known to your healthcare team. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you. If this feels overwhelming to you right now, go at your own pace, and reach out to others who have walked this path before you. There is an army of patients who are standing by, ready to share their healthcare wisdom and practical coping tips with you. Seeking their advice will help lessen the fear and isolation you may be feeling, give you a sense of shared experience and connection, and help you feel more in charge of your healthcare decisions.

Living Well With Lung Cancer: What Are the Best Actionable Resources Available for Lung Cancer Patients?

Living Well With Lung Cancer: What Are the Best Actionable Resources Available for Lung Cancer Patients? from Patient Empowerment Network on Vimeo.

What resources are available to me during and after lung cancer treatment? What financial resources are available if my insurance doesn’t cover costs? Can having second-opinion conversations actually be good for your health? Can the role of faith help? Meet lung cancer patient Matt Ellefson, oncology nurse Katie Michelson, and social worker Sandra Manley-Eichler, as they join forces to share how you can most the most of resources available to you today.

[Editor’s note (11/2018): Matt Ellefson passed away after a long battle with lung cancer. Matt was the epitome of what it means to live a purpose-driven life. His work has impacted thousands of people across the world.]


Transcript:

Andrew Schorr:

And greetings from near San Diego—Carlsbad, California. Welcome to this Patient Empowerment Network program produced by Patient Power. I’m Andrew Schorr, your host for the next hour. We have a lot to cover, as we discuss what are the best actionable resources available for lung cancer patients? I’m very excited about our guests today and to bring you the information that you need. I want to thank our financial supporters for this program, and they are, of course, Celgene, Helsinn, Novartis and Genentech; and also, our partners in this program, SURVIVEiT, and the Lung Cancer Awareness Month Coalition. And as you know, as we do this program, this is the very end of Lung Cancer Awareness program. But that needs to go on, day by day, month by month, year after year. And hopefully, as therapies are improved, you can live longer and live better, even if you’ve had a diagnosis of lung cancer. And let’s all pray for cures.

But what resources are available for you as you proceed? That’s what we’re gonna be discussing. Now, if you have a question, or a comment, or a suggestion of something that’s worked for you, send it in now or anytime during the program to lung@patientpower.info. Again, that’s lung@patientpower.info, and we’ll do our best to answer your questions and include your comments. And remember that there will be a replay of this program available soon thereafter, within a few days, and video clips discussing the individual topics that we’ve covered.

Should we get started? Okay. So, I’m in California, but now let’s go all the way over near Sarasota, Florida, Longboat Key, and connect with my friend Matt Ellefson. And he’s been on our programs before. I know Matt really well. And man, Matt, you’ve been living with lung cancer for almost eight years now, the end of this month, with six recurrences along the way.

And of course, you founded SURVIVEiT back in 2013. First of all, thank you for being with us, and you’re looking good. 

Matt Ellefson:   

Well, thank you, Andrew. It’s always a pleasure to be part of your organizations. They’re so informational and helpful to those who need to hear it. Thank you for that.

Andrew Schorr:

Now, we’re talking, Matt, about resources, and certainly, SURVIVEiT is a resource. And you’ve worked with so many other organizations, and you’re aware of it. People with lung cancer today should not feel alone, should they?

Matt Ellefson:   

No, no. Never, never. And that’s one of the biggest things that SURVIVEiT stands for, is nobody should ever face cancer alone. And I don’t care if you have lung cancer or what cancer you have. You should never face it alone. And it’s our goal to be sure that nobody ever faces a cancer diagnosis alone.

Andrew Schorr:

Well, we’re gonna talk more about it. We were dealing—I was talking earlier today with someone else who’s a mentor in the lung cancer community with a more rare subtype, Janet Freeman-Daily, who has the ROS1 mutation. And not everybody knows whether they have that mutation or another. And so, we’ll talk about that. How do you connect with others, and maybe, then, there’s a subcommunity that can help you as you move things forward. So, Matt, it’s a family affair in your family.

There is another guest we have, and I want to go to Katie Michelson, who is with the Cancer Care Institute in Rapid City, South Dakota—your home state, Matt. And Katie’s your niece. Katie, welcome to our program.

Katie Michelson:               

Hi, guys. Thanks for having me.

Andrew Schorr:

Katie, you are very devoted to cancer patients that you see in South Dakota. Would you agree, though, that patients need to speak up when their care team works with them, and that often, there are resources that can help—sometimes financially, emotionally, connecting with other patients and other families that are going through it, and the right care?It’s that relationship, but the resources are there, wouldn’t you agree?

Katie Michelson:               

Right. It’s about building the relationship and having that open communication with your provider and the nurses, pharmacists—everyone within the system.

Andrew Schorr:

Great. Well, communication is important. Now, there are emotional things that go along with it. And that’s where our next guest really comes in, an oncology social worker from our partner, the Lurie Cancer Center, Sandra Manley-Eichler. Sandra, welcome to our program, an oncology social worker. When someone’s diagnosed with lung cancer, it’s a pretty heavy load for the family, and certainly for the patient. And people like you are there to help, right?

Sandra Manley-Eichler:

Certainly. I think it’s a really great part of my job. I really enjoy the work that I do. And I encourage all patients and families to reach out for the support that they need.

Andrew Schorr:

Well, let’s get started. So, first of all, Matt, how did you find out what might be available? I mean, you were diagnosed, you were coughing up blood, right?

Matt Ellefson:   

Yes.

Andrew Schorr:

Oh my God, what’s that? And then how did you go from the terror of that to getting grounded again and starting to see who could you network with, what, where do you go? How did you do that?

Matt Ellefson:   

You know, Andrew, the first thing I did was say a prayer. And I believe God answered that prayer. And he was able to call me to the point where I was able to—okay, it’s battle on now. I’m in battle mode. And I did—I researched, and I searched, and I looked. And my wife and my brother-in-law helped. And we were on three laptops. We kind of divided and conquered, and we just tried to learn as much as we could about cancer, about lung cancer, and my specific type of lung cancer, and what I needed to do to treat it effectively—where I needed to go for a second opinion.

Who should I talk to? And the biggest thing, though, that I wanted to do was talk to somebody, a stage IV survivor, that was living a happy and productive life. I wanted to see them, and I wanted to ask them, what did you do? How did you get through it? But I couldn’t find anyone. I couldn’t find anyone. And so, I said, you know what? If they aren’t out there, maybe I’ll be the first one, because I’m not giving up. I’m going through this. And God answered a prayer, and away I went for a second opinion. And I ended up at that cancer center in a clinical trial that proved to save my life.

Andrew Schorr:

Right. And then of course, you’ve been continuing to get informed about did you have certain mutations, what tests did you need. If one medicine pooped out on you, and you’ve had that, was there another medicine approved or in research, a trial, that you could benefit from? So, let’s talk about that for a minute. Katie, you’re at a community cancer center, where most people are treated, community cancer centers.

How do they connect with the information? And let’s face it, lung cancer, aging, there’s been a lot of research. There have been a number of new treatments, immunotherapy, all that. So, what—we talked about communication. What should patients be saying, rather than just feeling so forlorn that they’ve been diagnosed with such a life-threatening condition?

Katie Michelson:     

I think, again, having open communication with your provider. It’s important to listen to what they have to say about your diagnosis and treatment options, but instead of just listening, also ask a lot of questions. Ask what are other treatment options? What are genetic testing that I can do? People are well informed if they ask questions. I feel like that’s the most important part.

Andrew Schorr:

Right. Sandra, you’re in an academic medical center, and so, you have a lot of research trials going on too. So, first of all, people say, oh my god, I’ve been diagnosed. Does anybody else have it?

So, maybe you can talk about how do we make connections for patients, and how do also they make sure that the full range of treatment options are available to them? How do you coach people about that?

Sandra Manley-Eichler: 

So, I often work with patients, and I recommend kind of like what Katie was saying, asking a lot of questions of their physician, and not necessarily asking about the resolution from their physician. So, asking where can I find a resource to connect with other lung cancer survivors? And that connection could be, like what Matt was referring to, something specific related to your own diagnosis. I wanted to know – I want to hear from somebody else who has stage IV disease who’s living their live. Where do I go for that? The same thing with treatments, clinical trials, etc. We are fortunate that we are in an academic medical center where we can get connected with a lot of different groups of people with clinical trials, as well as the physicians.

But I think that it’s more than that. It’s sort of you figuring out what is your next step? Because I think when you’re first diagnosed, I think as we know, it can be really scary. And so, at first, it may be a little too intimidating to go right into it. So, sort of taking time and being patient with yourself, and figuring out, is the next step that you want more information, or is it more support? And only you as the patient could know that.

Andrew Schorr:

Go ahead, do an ad for oncology social workers like you. And when I was first diagnosed with leukemia many years ago, it was a social worker who sat down with me pretty quick at the major cancer center I was at, and we chatted. And I think if you’re consumed by fear—you, or your spouse, or family members that are with you—you can’t—you start talking about resources, and you’re not even there. So, I think dealing with the emotional overlay—how do you get that out of the way first, Sandra? How do you lift that cloud a little bit?

There’s still tremendous uncertainty, but how do you lift that cloud so then when you say, well, you can call this number, and you can apply for this, go here and go there, you can think about it?

Sandra Manley-Eichler: 

I always joke with my patients that I feel like I have a whole stack of papers that I just throw at them. And I say, “Well, here you go.” And obviously, the joke is that that’s not gonna be helpful, right? Like you said, you’re sort of consumed with fear. There’s a lot of paralysis, I think, that comes in. And what I recommend is trying to just take one thing at a time. And that’s easier said than done, of course. Something that’s actually evidence-based for cancer-based stress and anxiety is mindfulness practice. Mindfulness-based stress reduction comes in many forms for many different people, whether it’s meditation, or one-to-one mindfulness practice, or even a lot of electronic resources and apps available for that, local courses.

And so, finding some way that makes it easier for you to focus on one thing at a time. And that can be through soliciting the help of friends and family to do that, or through working with a counselor, or, like I said, just engaging in an actual mindfulness practice. There’s a really good book—you can find it on Amazon—Mindfulness-Based Cancer Recovery. You can get it at your local library as well. And I recommend it for all my patients for exactly that, that anxiety that comes in and that overwhelming feeling.

Andrew Schorr:

Okay. So, first resource besides that book is wherever you were being treated, ask if there’s a social worker you can talk to, and they can help guide you through that. We’re gonna talk about other things social workers can do. Related to the jargon of lung cancer—so, I used this word “mutations” before. Somebody’s diagnosed with lung cancer. They’re terrified, and they have had no training. Nobody goes to school, if you’re not in the medical field, to learn about any of this.

And the doctor starts talking about this mutation, and that test, dadada. How do you, Katie, recommend people cut through the jargon to begin to understand?

Katie Michelson:               

Well, in our practice, we utilize nursing navigators a lot to kind of take the time to go over what each targeted therapy would be for their specific diagnosis. It’s important to break it down into layman’s terms so that you understand what’s going on better. And specifically in our practice, we rely a lot on the nurse navigators and on the social workers to help us with that. Obviously, if patients have more specific questions, we can sit down and talk about that further, and talk about it in more detail. But initially, I think it’s important to just kind of keep things simple at first.

Andrew Schorr:

Right. But ask. Ask.

Katie Michelson:               

Right.

Andrew Schorr:

So, Matt—so, you talked about, of course, your faith. But how did you lift the cloud or the terror of the diagnosis for you and your family, and then have this plan? You said, well, we’re gonna get a second opinion. What does that mean? What are they gonna do? What’s gonna happen to me? Where should I go next? How do we pay for it? How did you march through that with you and your family?

Matt Ellefson:   

You know, you just do the best you can. You said it well, and so did Sandra and Katie. The patient does not know. None of us are studying lung cancer ahead of time in anticipation of receiving this diagnosis someday. So, it’s something that’s new to us. And cancer is very complex. It is not something you can learn in two days. And you feel as a patient that you have to make decisions really quick. You have this disease in your body that’s doing its best to kill you. I mean, it is terrifying.

And so, I think one point that I want to make to patients is it’s okay to just calm down, give yourself a couple of weeks, and really understand all of your options, and not be so terrified to jump into something immediately. And that was really my most difficult, most difficult time, was from the point when I was diagnosed until I began treatments, I was going—it was terrifying. It was just horrible for me. I think my oncologist handled it really well, because at that time, I was really not convinced with this treatment plan. It didn’t fall into line with what I had researched. And I wanted to ask around a little bit. I wanted to check—I wanted to get a third opinion. And he said, “That’s perfectly all right. You do that.” And I said, “How much time do I have?” And he said, “You go ahead and take a couple of weeks, but I wouldn’t take any more than a month, because we want to get started.”

And I thought that was handled really well, because it did allow me then to slow down a little bit. I realized that cancer, it may be aggressive, but it isn’t something that’s gonna change overnight. And that’s the fear that a lot of us patients have. We think that, boy, by the end of the week, it’s gonna be growing so bad, we’re not ever gonna be able to stop it. And that’s just—that’s not true. So, people need to really need to be sure that they understand their diagnosis fully, ask all the questions. And SURVIVEiT provides a great tool called “21 Questions to Ask Your Oncologist.” It’s a free, downloadable tool at surviveit.org. Go through that list in detail with your oncologist, and just be sure you understand what your options are available to you, and that you’re making the right choice.

Andrew Schorr:

Well said. I want to tick off some other resources people—Matt, you and I know, in the lung cancer community, there’s some other groups. There’s the Lung Cancer Alliance. There’s Free to Breathe. There’s the Lung Cancer Foundation of America, the Bonnie J. Addario Lung Cancer Foundation. There are all these groups that you can call or go on their websites, and they can often connect you with other patients, and they can also help you—guide you, for instance, if you’re trying to seek a second opinion, where is maybe a center you might go to where there’s a lung cancer specialist? Maybe even, if you’ve been identified and had the right diagnostic testing, where there might be research into that mutation you have, that type of lung cancer, or is there a specialist in small cell lung cancer, if you have that, right?

Matt Ellefson:   

Right.

Andrew Schorr:

So, you’re gonna—what we’re finding out now is different subtypes of lung cancer. And then I just want to put in a plug for Facebook, because there are a number of lung cancer Facebook groups as well. And I mentioned this more rare mutation earlier, ROS1. So, there is a group of people with this rare ROS1 mutation worldwide. There are groups for small cell lung cancer. And there are certainly many groups for lung cancer and all this, and advocates. So, we kind of triangulate this.

So, Sandra, it sounds like a lot of work, though. I mean, a lot of people might say, “Oh my God, I’ve been diagnosed with this life-threatening condition. I just want people to just take care of me.” But it sounds like today, if you can martial family and friends around you, though, you do have a lot of horsepower to be a knowledgeable consumer. I mean, you want to say, heal me, but on the other hand, you want to make sure that all your needs are taken care of.

Sandra Manley-Eichler: 

I think it’s such a balance that when you have a diagnosis of any cancer, that you sort of struggle between wanting to be as independent as you were before, and how much do you elicit help from friends and family? It can be a struggle. And I think what’s nice is that you have an opportunity to delegate tasks to friends and family who, like you said, are fostering support for you. And I have a lot of patients who will send somebody else to speak with me. They’ll say, I’m too dizzy from chemo. I’m too tired. I’m trying to figure out, maybe, how to manage childcare, or going back to work at some point during treatment. And then they’ll ask maybe a friend, or a sibling, or a parent, or a spouse to reach out to me for those resources instead, and sort of filter through those resources.

So, you have many resources, that you have a lot of people who can help you sort of narrow down what’s the best one for you, including your social worker.

Andrew Schorr:

How do you coach people on asking for help? So, Matt, you have five kids, and you have a pretty large family, and a big community in South Dakota where you live. But Sandra, first I’ll start with you, is how do you give yourself permission to say, this is all I can do. My job is to try to get well, but I need help with communication, with food, with asking questions to the doctor, financial resources, transportation.

Sandra Manley-Eichler: 

Sure. With a lot of my patients, I think that that’s a very common problem, so I want to validate that that’s something that I’m sure a lot of our listeners are struggling with, is at what point do I ask for help? And for what? And does that make me appear weak or like I can’t handle it, right? Never a good way to feel.

And I often say, think of somebody that you care about a great deal, whether it’s a family member, your best friend, a mentor, maybe—and now imagine that that person was just diagnosed with cancer. And think about the lengths to which you would go to help that person. And I guarantee you that there are many people in your life who would feel the same way about you. So, I think putting yourself in the shoes of the caregiver, the other person who wants to be of help and exercise some control over what they can do to help you, is a good an exercise in sort of reminding us that we’re all fallible. We all have positions in which we wish that we could sort of shoulder everything. But we’re all human beings. And if you can sort of connect with the people in your life that you really care about, you’ll see that they care about you too.

Andrew Schorr:

I want to remind our audience, if you have a question or something that you want to share, just send it to lung@patientpower.info. Katie, next question for you is you’re at a treatment center.

And I’m actually going through leukemia treatment these days, so I’m in a room with some people getting infusions and things, not just for leukemia but for lung cancer. And there are family members and friends who come in. So, tell me, how do you feel as a practitioner about the involvement of family and friends, and what’s helpful with the healthcare team, and maybe what isn’t?

Katie Michelson:

I think it’s one of the biggest support systems that you can have. And we have almost all of our patients come in with either a friend or a family member to all of their follow-ups. They’re there throughout their infusion. And being a prior infusion nurse in the chemo setting, I have seen the relationships that these patients have with their families. I see the relationships that they develop with other cancer patients that are in the next room, or down under the next curtain, or behind the next curtain. And so, those relationships are really important.

And I guess I just have seen that support system a lot, and I know it’s a big part.

Andrew Schorr:

So, making the infusion room a chatty place is okay.

Katie Michelson:               

It is. It’s interesting from a nursing standpoint to see, on a patient’s first infusion day, you’re nervous, as to be expected. And then as the weeks go by, you start to develop relationships with the patients that are there every Wednesday or every other Wednesday. And it’s really cool to see people make their own support groups at their chemo treatment.

Andrew Schorr:

Right. So, Matt, what would you say to people about asking for help or delegating responsibility for family or friends, or a church group, or your synagogue?

Matt Ellefson:   

I think it’s very important, and it doesn’t come easy to a lot of us, for the reasons that you guys just discussed. I mean, we all want to control the path of our life to some degree, and especially when you have a life-threatening disease; you really want to control it.

I mean, because you don’t want to make the wrong choices. And so, it’s really hard to relinquish some of that control to somebody else. And I would recommend, start small. I gave up—the first thing I did was I gave up control of my nutrition to my wife. And she was gonna just study nutrition, and what I needed to it, and the cancer-fighting foods, and things I needed to stay away from. And I thought, boy, this is so helpful. I don’t have to study that anymore. Now I can focus on other things. So, I would recommend, start small. Find one little sliver of need that you might have, and ask a friend if they will do that—your friend, or loved one, or caregiver. And I’ll guarantee you, they’re gonna be willing to do it. And just let it go. And then you’ll start to see the benefit of having that help. It’s tremendous. You can’t do this alone.

Andrew Schorr:

No. There are some tools also for communication to extended networks of family and friends. So, whether you’re like me in California, and I have relatives back in New York and friends around the country, fortunately—they say, well, how’s Andrew doing? Well, if you’re in the throes of treatment and you don’t feel well, it’s very difficult for you to take every phone call or respond to every email. So, think of having somebody, a family member or a friend, who’s like your communications—chief of communications. And there are tools. So, for instance, one I can think of off the bat it Caring Bridge, but there’s some others where you can use these off the shelf tools that are available to you—often for free. Many of the medical centers have them as well—to communicate with family and friends how you’re doing, whether you’re an outpatient, whether you’re in remission, whether you’re in the hospital.

And I think that’s really helpful. Matt, you’d agree, wouldn’t you?

Matt Ellefson:   

Oh, absolutely. Absolutely. It is important to use those tools. Your friends and loved ones want to know how you’re doing, and they want to hear from you, and they want to help. But they haven’t had—many of them haven’t had cancer themselves either, and they don’t know what to do. And they’re afraid to do the wrong thing or say the wrong thing, so it’s really—it becomes a different situation for everyone involved. So, but give them the opportunity to help. And one thing that we always hear people say, too—and I’m gonna flip the coin a little bit. If you’re a friend that’s trying to help somebody with cancer, one thing that people always say is, “Let me know if I can do anything. I’m here for you. Just let me know.” Well, a patient isn’t gonna let them know, because we just don’t do that, because we want to try everything.

So, it’s better to say, you know what? If you live in the cold part of the country, say, you know what? I’m gonna shovel your driveway. Every time it snows, don’t worry about it. You don’t have to worry about any of that. I got it covered. Or, I’m gonna mow your lawn. And if you’re a caregiver or a supporter listening today, take that on. Understand that the patient isn’t gonna ask. You just offer. You just do it, because they need your help, and it will be greatly appreciated, believe me. It will be.

Andrew Schorr:

So, Sandra, a lot of people are reluctant to communicate or don’t—they don’t want to—we’re facing up to our mortality when you’re diagnosed with a cancer. And then we have different family members—including, I want to bring up, children. So, how do you coach people, and what help or resources are there to help us as a patient communicate honestly and where it’s helpful?

Sandra Manley-Eichler: 

Absolutely. I think that it’s important to acknowledge that children will be at different developmental stages. And I think a lot of people feel that they have to be almost extra truthful and mention a lot of details about their cancer treatment, because if they don’t mention every single detail, they’re somehow not being truthful. And in many cases, children are just too young to comprehend, or perhaps they’re developmentally not at the right stage to understand chemotherapy, radiation and what it means. I think parents need to figure out what kind of outcome do they want to have? What do you want the outcome to be of the conversation with your children? I also wanted to dispel a myth. I have a lot of patients who come in who say, “I want to have the big talk. I want to talk with my children about what’s going on with my treatment.” And I usually like to take a step away from that and say, there’s actually multiple talks. You have a lot of almost mini-conversations with children, usually probably just starting off saying, “Mom is sick. Dad is sick.”

And then appropriating from there what’s most appropriate for their treatment, what’s gonna be happening, how their life is going to change, maybe. Practical things. Sometimes kids just want to know, are you still gonna take me to school? Is it gonna be somebody else? And to just roll with the punches. Check in with them and keep open dialogue.

Andrew Schorr:

Well, that’s very important. I want to go on to another area we’ve been getting some questions about, and it’s sort of the elephant in the room. And that is, with innovation in cancer care, but also with inflation, maybe—cancer care is really expensive. And insurance varies. If you’re with our audience in the U.S., you know how much debate is going on about it. And so, people say, well, gee, how are we gonna deal with a cancer and not go broke? Are there resources to help? So, Katie, let me just start with you for a minute. We’ll come back to Sandra.

Katie, I’m sure that conversation comes up. You mentioned nurse navigators, and maybe at your clinic, you have other navigators. How can we help financial research.

Katie Michelson:               

I’m lucky. At my facility that I work at, we have a navigator that is just focused specifically on getting things covered for insurance, preauthorization, looking at the drug companies themselves for support with medications. We also look towards the social worker a lot for additional support. Even though I’m in a smaller hospital, smaller clinic, we have a lot of resources for our patients, and that’s specifically to help with the financials of everything.

There is also a program that we have, and I can’t speak for every hospital, but any prescription that is made under the provider at our clinic is covered by the hospital.

So, that’s a resource that our patients use a lot. Anything that has to do with their cancer treatment, anxieties, side effects from chemo—that’s all covered for the patients. 

Andrew Schorr:

Wow. Well, I should mention, and this is for audience—depending on where you get care, check. So, for instance, okay. So, first thing is, what insurance do you have and what coverage? I was blessed when I asked the financial person as I was in my second cycle of leukemia treatment. I said, “Oh, I just want to check how much this is gonna cost me.” And because I had Medicare, and I had a Medicare supplement—you see the ads on TV on the U.S. all the time now for the Medicare supplement. For these infused therapies, I have no cost. Wow. Okay. Certainly with the oral therapies, there are co-pays, and a lot of people look for assistance programs. So, let’s talk about that too, Sandra. So, even if you have—maybe your infused therapies are being covered, you may have oral therapies that unfortunately the insurance is different.

But there are some programs to help there too, aren’t there?

Sandra Manley-Eichler: 

Absolutely. I’m so glad you brought that up. And just as an aside, since we’re talking about Medicare, if there’s anybody listening, Medicare open enrollment ends in one week. So, this is the time at which folks with Medicare can actually seek if there’s a different plan that they would like to enroll in if they felt that it hasn’t been covering their cancer care as much as they would like. So, just putting that out there for Medicare recipients.

So, I work with patients quite a bit on oral oncolitics, all the medications related to their side effects. Katie, it sounds like your institution has a really great program. And again, I do encourage—I want to bounce back off of what you said, Andrew—definitely check in with your hospital to see if there’s any assistance available at the hospital itself for assistance for your pharmaceutical needs. One resource I’m going to recommend is www.needymeds.com. That’s N-E-E-D-Y-M-E-D-S.com.

So, that website is almost like a Yellow Pages, if you will, for finding assistance for very specific medication. It can be very helpful. And then certainly, reaching out to the pharmaceutical company that makes the drug in question to see if they have a specific pharmaceutical program for it. But help is definitely out there. 

Andrew Schorr:

Right. So, there are various co-pay assistance programs. I’m gonna tick off a couple I think of. You may think of others. Patient Advocate Foundation, Good Days. And I know there are some others as well. And then, I was on a panel with a drug company where they explained that when there were no other resources, some of them—not all of them—do have some free drug programs too. So, you gotta ask. And if you’re prescribed a certain medicine, go on the website and call. Usually, they have nurses as well associated at the drug company. Call them and say, look, this is my financial. Am I missing something?

Is there a program that I have not thought about? And the other financial thing I wanted to talk about is related to clinical trials. So, Matt, I know you’re aware of this. And you traveled across the country for second opinions and different treatments. And some of my other friends with lung cancer have gone for some distance for clinical trials. But there can be assistance for that too, Matt, as well, right?

Matt Ellefson:   

Yes, there can. And not many patients are aware of that, but it’s becoming more and more prevalent, actually, which is good. It needs to. They are opening up payment for travel costs, which is great. Oftentimes, clinical trials already cover the drug cost. But if you’re able to get the cost of traveling to and from your treatments, that can save you a lot of money. And that—it’s really important.

It’s gonna help drive the enrollment of clinical trials, which, on average in the U.S. is at three percent. It’s very low. And as we can get that enrollment to increase at higher levels, that just allows the drug to be approved that much quicker. So, it’s really important. 

Andrew Schorr:

Great. Great. So, Sandra, so there are sometimes—I know I had a—maybe it was in Northwestern where you are, or another center where the social workers or clinical trial coordinators sometimes had coupons for different airlines. I think Southwest Airlines did, to help for patients who were coming from a distance. Am I right? But you need to ask.

Sandra Manley-Eichler: 

Yes, you do have to ask. You’re absolutely right. There are some airlines that will contract with different hospitals for providing specifically that. So, especially for finding—whether it’s getting a second opinion or traveling specifically for clinical trials.

I’m also gonna recommended the Corporate Angels Network. They provide free flights for patients. So, it’s a system where folks with access to corporate jets, private flights, will open up seats as they become available for survivors of cancer. So, I think, like you said, it’s always about asking. There’s no harm in that, right?

Andrew Schorr:

Oh, one other thing I wanted to mention is a lot’s changing in the U.S., and we’re all watching it carefully about insurance issues, including with Medicare. And so, the Centers for Medicare and Medicaid have a proposed rule change coming up for those of us who take oral medicines through Medicare Part D, where our copay will be based on the discounted price that the insurance company may have negotiated with the drug company, which, believe it or not, right now, they often don’t pay us on. So, we pay a co-pay that’s a percentage of the retail price when whoever was providing the medicine to us got a discount that they didn’t pay us on us.

Kind of bad and crazy. And so, if you keep an eye on our Patient Power website, I’m gonna be blogging about this and give you a link so you can sound off with the Medicare folks as this proposed rule change is considered. Okay. So, we talked about finance as best we could. We talked about family relationships. I want to talk to you a little bit, Katie, a little bit more about speaking up with your doctor. Maybe the nurse is right there with you, and you have a relationship with them, and then those visits you have with the doctor, and sometimes it’s a little intimidating.

Katie Michelson:               

Mm-hmm.

Andrew Schorr:

So, what would you say to people, though—we talked about communication, about not being afraid to ask questions of the doc, who you may see sometimes as a scientist. And maybe there’s a lot of lingo that’s going on. You’re a little intimidated. But kind of your right to ask questions.

Katie Michelson:

Absolutely. I’ve said it. Ask the questions that you have. If they don’t have the answer that you’re looking for, ask it again. I mean, just keep being an advocate for yourself. And when it comes to therapy and side effects and the toxicity that you might be experiencing, it’s important to discuss that with your doctor, too. And don’t be afraid that a treatment plan would change, or that chemo would be stopped, or that treatment would be stopped just based on side effects. Talk to your doctor and talk to your provider. Keep an open dialogue. Ask questions.

Andrew Schorr:

Well, Matt, let’s be a little more specific about it. There were some people—we were talking about how often patients don’t want to speak up. They just want to put their head down and deal with it. But yet, people may be suffering some side effects that they’re sort of—I don’t want to say grin and bearing, but just bearing.

Again, it’s really important to—the resources can’t be brought to bear unless they know that you’re dealing with a lot of pain, or you’re not sleeping, you have extreme nausea when you get home. They don’t know unless you tell them, right?

Matt Ellefson:   

That’s true. You don’t know what you don’t know. And it is difficult for us, because we are afraid that if we say something sometimes, that’s gonna mean that, okay, they’re gonna reduce dosage. And that may mean that it’s not gonna be as effective. Or there are a number of things. Because at this point in the game, we don’t understand the answer all that well. Now, myself, being on my eighth year, I understand those things really well now. And I get into some pretty serious debates with my oncologist. And I’m not afraid to tell them anything.

But when you’re initially diagnosed, that’s not the case. You don’t feel comfortable, and you are afraid that if you bring up certain things, it may change the course of your treatment. And you need to realize that’s not true. You need to have that discussion. If they do want to change the course of your treatment, then you start talking about that, and you start weighing the benefits of that versus dealing with the side effects. And there are so many different medicines, even alternative therapies, available to deal with side effects. So, you have many, many options. So, you need to exhaust those first before you become afraid that you’re gonna need your treatment reduced or changed.

Andrew Schorr:

Earlier, you mentioned about getting a second opinion. A lot of times, people are hesitant to mention that to Doctor Number One, because Doctor Number One will feel insulted.

Matt Ellefson:   

You’re absolutely right. And it’s not even Doctor Number One. It’s Doctor Number Two. I mean, even today, at almost eight years, I need my doctor, and he’s great. And I have more than one doctor. I have a second opinion doctor, and I have even a third opinion doctor that I’m connected with all the time. But my primary oncologist—I need him. And I do not want to upset him. And I do not want him—because I feel that if I say the wrong thing and I upset him in some way, he’s not gonna give me the attention, maybe, that I deserve, and he may say, well, the heck with him. He’s a complainer. He doesn’t believe in me, so I’m gonna focus on other patients. That’s our normal thought process. But I’d love to hear Katie and Sandra, what their comments are on this.

That’s not true. They don’t do that. They understand that patients are going through a difficult time. And they know how to deal with it. 

Andrew Schorr:

So, Sandra, what would you say? So, one resource for people’s treatment is to get a second opinion so there’s a clear picture of what they’re dealing with. What would you say? So, how do they make that happen and feel okay about it?

Sandra Manley-Eichler: 

Well, I think we have to remember that physicians are also scientists. And scientists believe in repetition of testing. And so, if anything, the physician is very confident about his or her approach to your treatment, then they’re gonna want somebody else to verify that—to say, yup, that you’re going to the right place and you’re getting exactly the right treatment that you have. That being said, a lot of physicians, even though we hold them up as authority figures, and they’re really great people and very smart – they also appreciate that, hey, there maybe somebody else who has a better idea than I do.

And so, I think having a very honest conversation, and even so much as just say, “You know, Doc, I have a question, but I’m a little uncomfortable asking it.” And so, maybe that would be sort of a way to start the conversation and then continue from there. Because sometimes, you’ll be surprised. They’ll already have a person for you to go to. They’ll say, “Oh, sure. I know somebody at Sloan-Kettering. I know somebody at Dana Farber. You should go to this person for the second opinion,” right? And so, I think that it’s just kind of checking in with them and seeing where’s your next step?

Andrew Schorr:

Okay. And one more thing about it is, let’s say that my family member uncovers a clinical trial somewhere else. You’re in Chicago. You have a bunch of major medical centers. I may be hesitant, or should I be, to bring it up with my doctor at my institution where I’ve started, because the trial’s not there.

Sandra Manley-Eichler: 

I think a lot of people feel hesitant, and you folks already mentioned this idea of maybe offending the physician or insulting them in some way. I think that it’s one of those things where a clinical trial contributes to everybody. So, enrollment in clinical trials really only helps the physician that you’re seeing, whether it’s at the place that you’re going first to start treatment or all of them. So, I think that there’s a really great community of physicians who really believe in clinical trials, and they want more enrollment, and enrollment for something that’s the best for your cancer. I think one of the best things about lung cancer treatment is how targeted it is. And that’s really coming out in a lot of the research. And the research wouldn’t be here without clinical trials, whether that’s at your home institution, or whether that’s at another hospital. But the hesitancy is definitely there.

Andrew Schorr:

Okay. So, one of the people watching our show said, “Gee, give me some more hard information.” So, I hope you’re writing some stuff down.

So, for instance—and you just touched on it—there are specific cell types of lung cancer. Not just non-small cell or small cell, but different types. You’ve heard of some of them. Maybe you’re dealing with the ALK mutation, the EGFR. They’re identifying others. ROS1, I mentioned. So, in any case, whether you have one of these identified mutations or others that maybe you’ve noticed, that’s where the testing comes in. And Katie, talk about that. So, for instance, there are a number of companies now doing testing, and there are groups like the Lung Cancer Alliance, and Bonnie Addario, and I think some of the others have been involved, to facilitate you getting the testing if otherwise, you’re having insurance issues or things to help get it paid for. But you gotta ask. You gotta speak up. And Katie, I’m sure you’re familiar now with all these subsets of lung cancer now, and how important it is to get an accurate diagnosis of what’s going on with you, right?

Katie Michelson:               

Yes. 

Andrew Schorr:

Yeah. It really is vital. So, again, ask about tests. Is there a test that I should have, and then you can call one of these foundations, like I mentioned, Lung Cancer Alliance. A, how do I get this genomic testing handled for me? And then their company’s foundation, Medicine Garden, there are a number that do the testing that also have programs to facilitate getting it paid for possibly, or sometimes there’s assistance in other ways as well. So, hopefully that’s some concrete information for people about diagnosis.

We talked about travel. We talked about clinical trials. We’ve talked about the family issues as well. Now, going forward with the uncertainty of it, how do you cope, Matt? I mean, you started SURVIVEiT. But for people you know and even yourself, there’s so much uncertainty of how long the treatment that you have will work, or is there a plan? What resources do you use to move forward—to have hope, basically?

Matt Ellefson:   

Well, the biggest thing that I do is I go—I’m a man of very strong faith, and I go back to my faith. And I always try to be grateful. And when I’m in a slump, I take ten minutes to think about five things I’m grateful for, and I write them down. And we can’t be fearful, or angry, or shameful, or full of any pity, and be grateful at the same time. They don’t go together. You just can’t be that way. Gratitude always kills fear. It kills anger. It kills doubt. It kills shame. And gratitude’s your friend. So, always—you learn to change your thoughts. You learn to change your mind. And another thing I do is, instead of trying to think about how I think or feel, I focus on being the difference.

And I feel that’s why my health has been so sustainable for so long, is I’ve learned that—I’ve learned where my blessings have come from. It’s not from thinking, and it’s not from telling people, but from being. Being optimistic, and being humble, and being empathetic, and being compassionate, and being a warrior of love. Being somebody that, I’m gonna take this on, but I’m gonna love a lot of people along the way. And that is really, really important.

Andrew Schorr:

Well, thank you on so much about that and what propels you. And I think it’s good advice for other people. Matt, you had genomic testing. You’ve had it at different times. Some people have written in and said, “Well, what if my doctor is not willing to do that?”

Or sending it off for other analysis? So, what can you tell people about that and how they can really understand what their mutational status is, and getting that analyzed by the appropriate lab?

Matt Ellefson:   

No, especially via late stage cancer, stage III or IV, it is crucial that you get genomic testing. And not just the testing that your cancer center can provide. I mean, don’t only test for the genes that they have the ability to treat. You need a comprehensive panel. And if your doctor’s unwilling to do that, you need another doctor. It’s just that simple. You need to seek a second opinion immediately. Because cancer is very complex. And the reality is, it doesn’t matter what enemy you have. You can’t find any enemy until you know what that enemy is. And it’s the same way with cancer.

Until we can pinpoint what is specifically driving our cancer, we can’t fight it effectively. So, it’s extremely important to have a comprehensive full panel genomic sequencing performed so that you are provided with—first of all, you understand what is driving your cancer. And even if what is driving your cancer today doesn’t have a targetable solution, a medicine that can target that gene to stop the cancer, at least now you know what to watch for. Because there are breakthroughs coming through monthly. I mean, I get emails—I sign up to listings. SURVIVEIT posts them very quickly in our newsroom, into our social media channels. That stuff is happening faster than it ever has in the history of the delivery of cancer care.

The innovative technology today is happening very quickly. So, you can’t ever lose hope. You really can’t lose hope. When I was diagnosed almost eight years ago, they had one treatment—excuse me—available, a targeted therapy available for lung cancer. And now today, there’s five. And it’s because I’ve been able to stay alive during that time period, I’ve been able to allow them to develop another one and another one.

Andrew Schorr:

A bridge to what’s next. A bridge to what’s next.

Matt Ellefson:   

And you can’t—you just can’t lose hope. You need to know what it is that’s driving your cancer so you can follow that.

Andrew Schorr:

Right. So, Matt, you know we have a friend Lisa Goldman out in California, where her initial genomic testing was for one gene. And then she needed to be tested again and again, and they’d already started her on chemo.

But fortunately, they got to the point where they identified the gene like the third or fourth time around that was active for her, and there was a treatment. And she’s still doing quite well on it, and hopefully, knock on wood, that’ll continue for a long time.

Matt Ellefson:   

Yeah.

Andrew Schorr:

So, you need to get to that point. Now, people ask for hard resources here. So, the Lung Cancer Alliance has a program where you can call, and they have various groups that work with you to assist you in getting genomic testing, okay? And we, Matt and I, are involved in something called the Precision Medicine for Me Consortium, where we’re working now where there may be research groups that come into play that will facilitate paying for the test if you otherwise don’t have insurance. And unfortunately, that’s the mission now, to pay for testing. Okay?

So, listen carefully. I hope you’ve written some of this down. And I wanted to bring up one another thing related to insurance. Some people have fights with their insurance company in their state. Not Medicare now, or maybe this insurance company or that insurance company, operating in your state. There’s a group called the AIMED Alliance—A-I-M-E-D, AIMED Alliance. It’s aimedalliance.com—where they have—it’s propelled by health insurance attorneys who will go to bat with you to make sure that you, even if you have to appeal to the state insurance commissioner, that if there have been denials, that you can appeal that and go through the process to get what is—what you deserve.

So, I know, Sandra, people don’t want to have to have these fights with insurance companies or go to all these resources. But I guess today with this moving target of lung cancer, maybe when you delegate it to family members, that’s unfortunately part of the job.

Sandra Manley-Eichler:

I think that I try not to see it so much as a fight as every patient is a lion tamer in a circus. And whether or not we want to be dealing with the circus, or we want to be that lion tamer, I think that we need to take that control to the patient. I think that one thing that I usually encourage a lot of my patients is to not be afraid. You are the patient. The insurance is intended to be supportive of your care, and if you don’t feel that it’s doing that, then it’s within everyone’s best interest to advocate for that. I’m really glad that you mentioned AIMED Alliance. I’m also going to recommend the organization Triage Cancer. So, Triage is T-R-I-A-G-E. They have a lot of information on their blog about supporting patients, as well as other free webinars talking about how best to navigate their health insurance.

I agree with you, I think it’s really unfortunate that a lot of patients, on top of the stress of treatment, feel like they have to fight with their insurance company. As a social worker, I work with patients, and I often do a lot of conference calls with patients with their insurance company to try to see if we can figure out, where is the disconnect? Where is the coverage not meeting their expectation? And how we can work with that. And I think over time, since it’s gonna continue to come up, because patients—our voice is getting stronger, right? That hopefully, there’ll be a resolution. That’s my hope.

Andrew Schorr:

Right. Amen. Well, Matt is part of that. I try to be part of it too. So, Katie, what advice would you give—as we get close to our ending time here. You’re at a community campus center, but it sounds like they’re in Rapid City. You have a lot of resources – nurse navigators, social workers, people who help look into financial programs. And most people are treated at it sounded more like yours. But some may go to Northwestern, certainly, and the cancer centers like where Sandra is.

But at your level, what would you say people can do so that they take advantage of these? Should they just start by saying to the nurse who’s sticking tubes in their arm, should they say, “Hey, is there somebody I can talk to about finance?” Or, “I’m feeling really down, or my family is,” or, “Gee, I want to get a second opinion.” How do you start the conversation?

Katie Michelson:               

I think it can start with the nurse, definitely. They’re usually the first person that sees you once you’re there for your consultation or for your visit. And then in turn, the nurse can let either the nurse practitioner or the doctor know, and we’ll get you in touch with the social worker or, like I said, the nurse navigators. We can do whatever we can to get you the resources that you need. The first start can be with the person at the front desk. It doesn’t matter who you ask first. It just needs to be asked so that we know that you need the assistance.

Andrew Schorr:

I want to put in a plug for something I wrote about six years ago. When I was diagnosed, I didn’t know anything. And as Matt was saying, we’re often drinking from the fire hose. A lot of data coming at us, and information and jargon we can’t understand or absorb, and we’re terrified. I wrote a book called The Web-Savvy Patient, and here we are on the web. Look it up. The Web-Savvy Patient. And I’ll say right off the bat, I need to revise it. But the process you can go through and some of the resources that were available, even when I wrote the book, and they’ve just multiplied since then, were the process—asking questions, going into the lit. Is there a social worker? Is there a nurse navigator? Is there a financial counselor? Is there air travel assistance? Is there a clinical trial? How do I identify who I should get for a second opinion? And all of that is available to you.

Matt, some closing comments from you. What would you say where people say, “God, I don’t know where to turn”? What would you say to them?

Matt Ellefson:   

I would say turn to God. I would say turn to God, yeah. There are so many people that are really gripped by fear and gripped by the failure to really provide the answers or locate the answers that they’re searching for. And you can always pray for wisdom. And you can also—SURVIVEiT is built—we’re an organization of survivors helping patients. We are built primarily and entirely for the focus that we’re talking about today, because we have been there, and we know what it’s like to struggle. So, we provide and we vote on best-in-class resources. So, if you go surviveIt.org and resource library, it is full of best-in-class resources to help you.

And the other thing that we do is we started a series of videos called Fearless Fridays. And on Fearless Friday, we have a video, and we talk about topics like we talked about today. We pick a different topic every week. But one thing I would also recommend people to do is to reach out and join our SURVIVEiT prayer wall on Facebook. And if you need any help at all, if you need a prayer that’s sent your way – and it doesn’t matter what religion you are—we are gonna pray for everybody. So, everyone is welcome, and everyone can send a prayer, or you can write prayers to others. One of my biggest go to prayers is, “Jesus, I’ll go where you send me. I’m willing and I’m not afraid. My pains and sufferings—may my pains and sufferings contribute in some way to the peace of others.

“And please help me touch those in need with the same love that you’ve given me.” And by changing your thoughts from yourself to how you’re gonna help others, and by allowing yourself to use what is happening to you, these pains and sufferings, for a positive use to help other people, and that’s how you conquer cancer.

Andrew Schorr:

Well, I agree. I’m Jewish, so I see it similarly, but slightly different. And some of you may be religious or not. But I think the idea of this positive force that you can develop in yourself, and draw from others, and bring out in others to help you. And I think you’d agree that, Katie, the healthcare team is really there to help you and give you that sort of support. I’ve had a lot of hugs from nurses.

Katie Michelson:               

We are. Nurses are the best.

Andrew Schorr:

It’s so true. I have a nurse in the family as well. Any final comment from you, Sandra, where people feel overwhelmed about how they can pull on some of these resources, to have the courage to do it? What would you say?

Sandra Manley-Eichler: 

Well, I think everybody has courage. You’re living every minute with a very aggressive, or maybe not aggressive, but something that feels very heavy for a cancer diagnosis. And that’s for both patients and their caregivers. I think that, kind of piggybacking off of what Matt said, that wherever you can find meaning is most important. Some people find meaning in the little things. That really great cup of coffee they have in the morning, the sound of a child laughing—things like that. It’s sort of the details of the day. Some people find meaning with bigger things, like speaking on a panel like this, like you’re doing, Matt, and sort of reaching out and using their experience to help other patients sort of make sense of their diagnosis.

And sort of going back to the question of “why me,” right? Well, why not? And so, you seek meaning in every day and every minute that you have, and that will carry you through. And that will give you the courage to ask for the things that you need, whether they’re small and practical, or whether they’re big and emotional.

Andrew Schorr:

So, I’m gonna give you a couple of other suggestions before we wrap up, too. So, my daughter Ruthie coordinates a Facebook group that we started in February of 2017, and it’s called the Cancer Connection. So, it’s people with all different cancers—a number of people with lung cancer. It has about—approaching 90,000 followers. So, these are people who’ve reached out, and they want to make a connection. Matt’s group has it. There are other lung cancer-specific Facebook groups. But draw on that.

And then going back to something we were talking about with Katie, strike up a conversation with somebody in the waiting room, in the infusion room, at the cafeteria, in the hospital or the clinic. I do that. Then you put yourself out. And I’ve been doing it now—21 years ago, I was diagnosed with leukemia. I’ve met so many people. Many, I’ve met only virtually, and then, boy, if I’ve ever met them in person, it’s like we know each other, and I’ve heard about their kids, and we’ve heard about their journey. We all have that Purple Heart of having gone through cancer care, and so we can relate to that. Speak up. Don’t keep it all bottled up. Sandra, would you agree with that?

Sandra Manley-Eichler: 

Absolutely. And I think that a lot of people feel voiceless when they get diagnosed, but it’s not the case. Your voice just becomes stronger as a result of your diagnosis.

Andrew Schorr:

Well, I want to thank all of you, and I want to thank you, Sandra, for joining us from the Lurie Cancer Center at Northwestern, Chicago.

And Katie, thank you for joining us from Rapid City. I hope it’s not a harsh winter there.

Katie Michelson:

We really haven’t had a winter yet.

Andrew Schorr:

Well, good. Maybe it won’t be that. And there’s your Uncle Matt down in Florida, in the sun, enjoying his health, but enjoying every day, Matt. Matt, thank you so much for all you do from SURVIVEiT, and thank you for some sage advice today. Thanks for being with us.

Matt Ellefson:   

A pleasure to be here, Andrew. Thank you for everything you do.

Andrew Schorr:

Okay, well, thank you. It is a pleasure. I want to thank everybody. We went a little bit long, but hopefully, if you were taking notes, there are some resources along the way that you had. And remember, it was really—just have—really just celebrate every day, is what I do. And I know that’s what Matt does. And then draw on others to help you.

The resources are there. I want to thank you sponsors for supporting this program—CelGene, Nelson, Novartis, and Genentech. And thank you so much to the Patient Empowerment Network for allowing us to work with you to put on these programs.

And thanks to your group, Matt, SURVIVEiT, and also the Lung Cancer Awareness Month Coalition. And I hope that this month, but every day, we can continue to raise awareness and hope for cures. In Carlsbad, California, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.