Tag Archive for: second opinion

Expert Advice | How to Elevate Your AML Care and Treatment

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How can patients elevate their AML care and treatment? Dr. Eric Winer from Dana-Farber Cancer Institute emphasizes the importance of actively participating in the care journey, staying informed about treatment plans, and seeking a second opinion.
 
Dr. Eric S. Winer is Assistant Professor of Medicine at Harvard Medical School and Clinical Director of Adult Leukemia at Dana-Farber Cancer Institute. Learn more about Dr. Winer.
 

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Expert Perspective | The Value of Empowering AML Patients and Care Partners

Expert Perspective | The Value of Empowering AML Patients and Care Partners

 AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask Your Doctor

 AML Care Essentials | Health Literacy and Recommended Resources

AML Care Essentials | Health Literacy and Recommended Resources 

Transcript: 

Katherine Banwell:

This interview is part of PEN’s Elevate series, which encourages patients to take an active role in their care to improve outcomes. What advice do you have for AML patients who are seeking to elevate their care?  

Dr. Eric Winer:

I think it’s important for people to be an active participant in this care. While we recognize that not everyone has medical expertise when they are going through this, it’s important that they are informed that they would like to be informed. It’s important that they have a full understanding of what’s going on in terms of the treatment, the plan, the short-term plan, and the long-term plan. 

So, there is a lot of information that needed to be digested. What’s important to note is that it doesn’t all have to be digested at that very moment at the time of diagnosis. These are processes. What I tell people is that this is not going to be your only opportunity to talk and ask questions. This is something that we’re going to be going through and doing this journey together. So, I think it’s important that they become an active participant in that journey, not just with themselves but also with whoever their caregiver is, and whoever is important to them that’s going to be going through this journey as well. 

Katherine Banwell:

I understand that some AML cases require treatment shortly after diagnosis. Is there room for a second opinion, and if so, what are the benefits? 

Dr. Eric Winer:

So, there often is room for a second opinion. There are times, quite honestly, like you said, where patients have a really acute problem when they come in, along with the diagnosis, or that the diagnosis has gotten to a point where we need to initiate therapy as an inpatient, urgently. That is becoming less common. It used to be, when I started doing this, that if you had a diagnosis of AML you were admitted to the hospital, and you stayed there until you completed your first round of therapy. That is not the case now.  

Generally, what we’ve learned is that there are studies that show you can actually delay therapy for a period of time in order to make sure that other things are established. Getting a second opinion is very important, particularly as a tertiary care center where physicians specialize in these types of diseases. And so, I think it’s very important to get expert opinions, not just in terms of how to treat the disease but also diagnostically, and to make sure the correct tests are run, the correct molecular studies are run, in order to figure out exactly what would be the best treatment for your individual version of AML. 

How Can Patients Stay Informed About New Treatments and Strategies in Gynecologic Cancer Care?

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What gynecologic cancer care questions should patients and families ask? Expert Dr. Ramez Eskander from UC San Diego Health discusses the value of patient education, second opinions, credible resources, and proactive patient advice to help optimize care. 

[ACT]IVATION TIP

“…be informed. Explore your options and opportunities. Again, there are strategies that are available to you both on the Internet, publicly available, but also through colleagues, through friends, and a network that you can build through support groups, even at your institutions. It’s never too early to ask about clinical trials so that you can make sure you’re educated and informed as you look to make decisions. Because if you try to take all of this into consideration and at one time point, it can be a little bit overwhelming.”

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Overcoming Gynecologic Cancer Challenges for Optimal Care

Overcoming Gynecologic Cancer Challenges for Optimal Care

 What Are the Barriers to Endometrial Cancer Care in Underserved Communities?

What Are the Barriers to Endometrial Cancer Care in Underserved Communities?

 How Can Gynecologic Oncology Racial Disparities Be Addressed

How Can Gynecologic Oncology Racial Disparities Be Addressed

Transcript:

Lisa Hatfield:

Dr. Eskander, as new treatments and strategies emerge, how can patients and their families stay activated and ensure they’re benefiting from the latest advancements? And what should they be asking their care team to make sure they’re up to speed with the latest in gynecologic cancer care?

Dr. Ramez Eskander:

This is so important to me for patients to feel like they’re empowered and educated. I believe that patients are their greatest advocates. This is where family and friends are also an important part of the care team. From my perspective, it’s very beneficial to have someone in the room with the patient as they’re having conversations about treatments and treatment strategies to take appropriate notes, to be informed, and to not feel bad about asking questions, to not feel bad about asking the relevance of a second opinion.

Any provider should never take offense to a patient asking for a second opinion. In fact, I would say, I encourage my patients. I say, listen, if you have questions and you…if you would like to get someone else’s perspective, please do so. I want that, and I want you to come back to me with potentially a different option or a question that my hope is to answer.

We have a shared goal of making sure our patients have the best possible clinical outcome. That is our north star. So as new treatments and strategies emerge, try to stay informed. There are multiple platforms available, of course, via the Internet, for example. I will just be cautious in saying not all of that information is accurate. So if you’re going to use a platform that’s publicly available, the web, make sure that you’re trying to go to areas where a resource is vetted and reliable.

The National Cancer Network, the NCCN, the National Cancer Institute, clinicaltrials.gov for clinical trials, vetted and established advocacy organizations, and then taking that information, using it as a foundation in which you can build upon when you have conversations with your providers. But again, this is where I think not just the patient alone, but patient, family, and friends can really work together to try to develop.

And all of our meetings, the cancer meetings that we have, for example, for gynecologic cancer as a Society of Gynecologic Oncology, there’s a foundation for women’s cancer. There are opportunities for education, the American Society of Clinical Oncology. These are publicly available resources, websites where you can go to and look for patient facing material to make informed decisions about the management of your cancers.  And, of course, when you’re asking to talk about clinical trials, how do I stay up to date? Again, it’s a dialogue. It’s never too early to ask. I worry sometimes that patients don’t want to bring up a clinical trial, because they fear that bringing that up means that they’ve exhausted all treatment strategies.

Quite contrary to that, the earlier you begin the conversation, the greater opportunity you’re going to have to potentially identify a clinical trial for which you may be eligible. And that will help you through your treatment paradigm. Because if you don’t, you may pass that up, because you’re no longer eligible, because you’ve had too many prior lines of treatment, for example. And having that conversation early will also help you prepare as you go through the treatment paradigm so that if you need to make a decision about potentially enrolling in a trial, you’re established, you’re ready to do so rather than trying to effectively push this forward quickly without making sure that you have the required information that you need.

So it’s a multi-pronged approach. It’s going to require support systems, undoubtedly, multiple resources are available, and then subsequently engaging those resources to use that information to guide your conversations.

My activation tip is be informed. Explore your options and opportunities. Again, there are strategies that are available to you both on the Internet, publicly available, but also through colleagues, through friends, and a network that you can build through support groups, even at your institutions. It’s never too early to ask about clinical trials so that you can make sure you’re educated and informed as you look to make decisions. Because if you try to take all of this into consideration and at one time point, it can be a little bit overwhelming.

Lisa Hatfield:

Okay. Thank you so much. And I really appreciate your comment about it’s okay to talk to your provider about getting a second opinion. I was terrified of that, because I really love my doctor. He is great. And I didn’t want to bring that up, but anybody who’s watching this, Dr. Eskander said it’s okay to talk to your provider about seeking out a second opinion.

And it may help in your care in making decisions too. So I appreciate that you said that. And also that you said to make sure you go to vetted sites for information. When I was diagnosed with blood cancer, the first place I went to that I wasn’t supposed to was Google, got all kinds of information that I didn’t want to read. So go to those vetted sites. I think that’s great advice. So thank you so much.

Dr. Ramez Eskander:

Thank you, Lisa.

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Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care

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MPN experts Dr. Akriti Jain from Cleveland Clinic and Kimberly Smith from Duke Health discuss effective strategies to improve MPN care including how patient diagnosis and symptoms can vary, best practices for shared decision-making, patient-provider communication, and family support. 

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See More from EPEP MPNs

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MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

 What Are Key Challenges and Potential Solutions In MPN Management?

What Are Key Challenges and Potential Solutions In MPN Management?

Transcript:

Dr. Nicole Rochester:

We’re going to talk about strategies for closing the gaps in myeloproliferative neoplasm care. So I’m going to go to you first, Dr. Jain, can you describe the most effective strategies, including your own best practices that can address gaps in care for patients facing a myeloproliferative neoplasm?

Dr. Akriti Jain:

Yes. So again, coming back to empowering our patient and leading to that shared medical decision-making. So different patients present differently, not using that one-size-fits-all philosophy, depending on what their symptoms are, what their diagnosis is tailoring their treatment. If cytopenias or anemia is a problem, helping them battle that. And different hemoglobins can be different for different patients. So not discounting their symptoms, saying that your hemoglobin is 11, your hemoglobin’s fine, you don’t need any treatment for this right now, maybe they’re used to functioning at a 14.

So shared medical decision-making is very important, because if patients feel like they’re heard, if patients feel like they’re a part of the decision that their healthcare provider made in helping them decide what is best for them, I think that is really important. And it would lead to patients actually adhering to treatment, following up with their healthcare provider, and also better physician-patient relationship, which I think is very important in some of these chronic diseases, where these relationships last for years, right? This is one of the chronic diseases, like a lot of times we’re telling our patients, this is like high blood pressure or diabetes, we have to learn to live with it.

And so they have to be friends with their healthcare provider, otherwise they’re not going to come see you again. So I think empowering the patient, making them a part of this decision of how we’re going to treat them, how we’re going to monitor them, how often should we be doing their labs, is it feasible for them, I think are really important ways to close those gaps and help our patients.

Dr. Nicole Rochester:

Thank you so much, Dr. Jain. What about you, Ms. Smith, what thoughts do you have in terms of strategies to address the gaps in care for MPN patients?

Kim Smith: I agree with Dr. Jain, but also bridging the gap between community and tertiary centers. A lot of times, we treat patients in these big centers, and then we send them out to local places to whether they need transfusions or, or to continue care because the distance for them to make it here is just too far. So I think, bridging, collaborating with the outside community hospitals and community centers, and also even the nursing staff, the nursing staff coordinating, just coordinating the care so these patients will know that they are receiving effective care, whether they are at this tertiary center or they’re at their community center, because we all are working as a team to make sure they have everything they need.

And also including the family. Families are important. That was a big thing to me. Like, I want to make sure families knew that they were a part of this team also, because a lot of times it’s the family who is having to deal with the symptom management. They’re the ones who want their family member to go somewhere with them, and they’re just too fatigued to get out, and they don’t understand it, because we’re telling them that this is a chronic disease. They should be able to do some things, but they just can’t. So I think we have to make sure we’re bridging the gap with the families also.

Dr. Nicole Rochester:

So for you, Dr. Jain, are there specific strategies or maybe one strategy that you have implemented yourself, maybe where you work, that has helped to bridge that gap between tertiary care and the community setting, as an example?

Dr. Akriti Jain:

Yeah, that’s a very good point brought up by Ms. Smith. So what I do, because a lot of the patients I see in my clinical practice are second opinions. A lot of these patients I see one time, and maybe I’ll never see them again, or maybe I’ll see them in two years from now when things have changed, and they have more questions, or their provider has more questions.

So what I do is I make sure the patient has my contact number so that they can always reach out if things change. I make sure they have that MyChart set up so that they can always message me if they need me. The next step that I always take is I call their primary oncologist. I make sure they have my cell phone number so that they can call me if things change, if they have any questions. And the third thing I always tell my patients is you can use me however you want to use me.

So, I, a lot of times, would set up virtual visits in three months or in six months. That way, even if they live hours away from us, they can see us the tertiary care center through the comfort of their home. They can get labs locally and see us. They can kind of alternate between their primary oncologist and a tertiary care center, or maybe see us once a year. It’s dependent on how much they feel makes them comfortable seeing us along with their primary oncologist who’s doing most of the heavy lifting, providing the care close to their homes.

Dr. Nicole Rochester:

And to circle back to the family part, I’m going to go back to you, Ms. Smith. Is there a strategy that you can share that you and your team implement to really engage with the family members of MPN patients?

Kim Smith:

Yes. So we provide educational materials to the patients. We always ask them to bring a family member with them. If they can’t bring a family member with them, I’m willing to call a family member if they need information after the visit. I always give them the contact numbers that the family member can contact me also. MyChart is a big thing. Make sure they have MyChart because the family reaches out via MyChart also.

Another thing that I do is that I try to make sure that the family also has like the educational material too, because sometimes you can give it to the patient, but they don’t share it. So if a family member comes, if I pass out information to the patient, I pass it out to the family member also. I also provide them with websites that they can use, that they can utilize. Like the Cleveland Clinic is one of them that I have them use a lot, but, but websites that they can use where they can actually look up information on these different MPNs that they may have. So I think the educational piece is the biggest thing that I do with my patients.

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What Questions Should You Ask About a Proposed Thyroid Cancer Treatment Plan?

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What Questions Should You Ask About a Proposed Thyroid Cancer Treatment Plan? from Patient Empowerment Network on Vimeo.

What questions should you ask about a proposed thyroid cancer treatment plan? Dr. Wirth provides guidance on self-advocacy, seeking a second opinion, and discussing essential molecular testing for identifying targetable gene alterations.

Dr. Lori Wirth is the Medical Director of the Center for Head and Neck Cancers at Massachusetts General Hospital. Learn more about Dr. Wirth.

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What Are Initial Thyroid Cancer Treatment Approaches?

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Thyroid Cancer Research and Treatment Highlights

Transcript:

Katherine:

What questions should patients ask about their proposed treatment plan? 

Dr. Wirth:

So, Katherine your questions are so spot on, and these are the kinds of questions that we get asked in clinic all the time. And I could say one thing that I think, I don’t know if medical students still are in this, but I learned this in medical school. If a patient says to you, “What would you say to me if I were your mother?”  

You’re not supposed to answer that question because of course you’re going to have your biases. But I realize people ask me that question all the time. And so, it’s a good question, so I should answer it because it’s a good question. But I think that I would simply encourage people to not be shy. Their doctors care deeply about them. Their doctors are pressed for time, but their doctors are always going to be happy to stop and answer every single question that the patient has. And the most basic questions are the best ones, but sometimes they’re also the hardest question to ask. But coming with a list of the important questions is very helpful. Bringing along a family member or friend and having them have their list of questions is also very helpful.  

But writing down especially the hard questions can help you ask the question because it can be hard to say, “How long might this drug help me live?” Asking about how long I might live can be really hard to say, but if you’ve got it written down there, it’s a little bit easier to say. Or if it’s hard for you to get those words out, hand your doctor over your notebook, and your doctor can look at the questions and help answer the questions.

So, I just would encourage people to think in advance about what the questions are that they want to make sure that they cover and jot them down. And don’t be shy. Don’t be shy about saying, “Do you think it would be worthwhile for me to get a second opinion? And if so, who do you recommend?” And most doctors are perfectly content with somebody asking if they think a second opinion would be a good idea.  

And I’ve always said if I were diagnosed with cancer, I would want to have a second opinion just to be sure that what my favorite doctor was saying to me really sounded right. So, don’t be shy about asking for second opinions. With thyroid cancer I also think now it’s so important that we’re doing the molecular diagnostics of the tumors for patients to identify those patients that have targetable gene alterations. And it is still a relatively new thing in oncology to do molecular diagnostics for thyroid cancer as well as other solid tumors. And so, it is something that is not always recommended or offered to patients. But that’s something that patients with thyroid cancer should absolutely ask their doctors about. 

Addressing Socioeconomic Disparities in Thyroid Cancer Care: Impact and Mitigation Strategies

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Addressing Socioeconomic Disparities in Thyroid Cancer Care: Impact and Mitigation Strategies from Patient Empowerment Network on Vimeo.

What are socioeconomic disparities in thyroid cancer care, and how can these disparities be mitigated? Expert Dr. Megan Haymart from the University of Michigan discusses the impact of socioeconomic status and education status and shares actionable patient advice for optimal care.

[ACT]IVATION TIP

“…make sure that you’re seeing high volume physicians who see a lot of patients with thyroid cancer. This is for both the surgeons and the endocrinologists, because we know that outcomes are better when individuals see high volume physicians.”

Download Resource Guide

See More from [ACT]IVATED Thyroid Cancer

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Emerging Advancements in Thyroid Cancer Treatment

Emerging Advancements in Thyroid Cancer Treatment

 Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement

Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement

 Personalized Treatment Approaches in Advanced Thyroid Cancer Management

Personalized Treatment Approaches in Advanced Thyroid Cancer Management

Transcript:

Lisa Hatfield:

Dr. Haymart, how does socioeconomic status impact the diagnosis and treatment outcomes of thyroid cancer patients? And what strategies can be employed to mitigate these effects?

Dr. Megan Haymart:

So there’s strong data that socioeconomic status does have an impact on diagnosis and treatment. And so we know that individuals’ access to insurance makes a difference. We know that patients can be at risk for different levels of financial hardship. So a fee of $5,000 means a lot, different things based on how much reserve individuals have. And so we know that this is a real issue.

And then related to socioeconomic status, we also know that there can be differences based on education level as well. And so in order for patients to mitigate these differences, I think it’s complicated. Like I think really there needs to be systematic changes. So it doesn’t all rest on the patient, but for patients, my activation tip would be, one, ask the questions.

And so, if you feel that you’re not getting the answers that you want, don’t be afraid to get a second opinion. And my other activation tip for this question would be to make sure that you’re seeing high volume physicians who see a lot of patients with thyroid cancer. This is for both the surgeons and the endocrinologists, because we know that outcomes are better when individuals see high volume physicians.

And there’s strong data for thyroid cancer and other cancers as well, that sometimes what’s happening is individuals who are lower socioeconomic status or a minority race or ethnicity are sometimes clustering at low volume hospitals. And so they may not be getting the best care because of where they’re going.

And so I think it’s very important to advocate for yourself and don’t be afraid to look around. And if the center that’s closest to you isn’t the best center for thyroid cancer, and if there’s a better one that’s 30 minutes away, and you’re capable of getting there, I would encourage you to go.

Is There a Gender Disparity in Thyroid Cancer?

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Is There a Gender Disparity in Thyroid Cancer? from Patient Empowerment Network on Vimeo.

Is there a thyroid cancer gender disparity? Expert Dr. Megan Haymart from the University of Michigan discusses the incidence rate of thyroid conditions and thyroid cancer in men versus women and proactive patient advice for those who feel dismissed or unsupported.

[ACT]IVATION TIP

“…if patients feel like they’re being dismissed, if they’re anxious, if they’re worried, if they’re stressed, if they feel like their questions aren’t being answered, you can always get a second opinion or see someone else.”

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See More from [ACT]IVATED Thyroid Cancer

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Thyroid Cancer Explained: Types, Staging, and Patient Communication

Thyroid Cancer Explained: Types, Staging, and Patient Communication

 Overcoming Thyroid Cancer Care Barriers

Overcoming Thyroid Cancer Care Barriers

 Understanding Thyroid Cancer Treatment Options and Follow-Up Care

Understanding Thyroid Cancer Treatment Options and Follow-Up Care

Transcript:

Lisa Hatfield:

Dr. Haymart, how does the prevalence of thyroid cancer differ between men and women, and what factors contribute to this gender disparity?

Dr. Megan Haymart:

So about 70 to 75 percent of all thyroid cancer cases occur in women. And this is very similar to other endocrine diseases, especially other thyroid conditions. So hypothyroidism, hyperthyroidism, those are also more common in women. And so we think that the reason for this is probably multifactorial. So one, there’s probably something about thyroid conditions in a biologic level that differs between men and women.

We also think that there can be some screening bias, meaning that women are more likely to see doctors. They might be more likely to have neck ultrasounds. Some of these thyroid cancers that are picked up are really small and maybe shouldn’t have been picked up. And so I think it’s probably multifactorial.

Something that my patients sometimes tell me and I totally believe them, and I just want everyone to be aware because it’s a lot of females and it’s also very commonly young females. So thyroid cancer is the most common cancer in individuals aged 15 to 33. The median age of thyroid cancer patients is about 50. Sometimes patients feel that their worry and concern about their cancer is dismissed and so I want them to know that they’re not alone.

You know it’s very stressful especially for younger patients who are at a transition point in their life, related to college, related to starting new jobs, related to starting a family, all their friends are healthy and they get a cancer diagnosis, it can be very stressful and overwhelming. And so if you’re worried, if you’re stressed, that’s normal. Patients shouldn’t feel bad about that. No one should make them feel bad about it.

So even though most patients are going to do great with this cancer, it is still a cancer diagnosis. It does still impact patients’ lives and that word cancer can be very stressful. So I just don’t want patients to feel alone if they feel like they’re being dismissed or people don’t realize how stressful that diagnosis could be.

So my activation tip for this is if patients feel like they’re being dismissed, if they’re anxious, if they’re worried, if they’re stressed, if they feel like their questions aren’t being answered, you can always get a second opinion or see someone else. So that’s one thing. And my other activation tip for this is that if they feel like they’re not getting the answers or the support from their physician, there are other online resources that are available that can also help with worry and stress related to a cancer diagnosis.

What Can Patients Do to Access Better Colon Cancer Care?

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What Can Patients Do to Access Better Colon Cancer Care? from Patient Empowerment Network on Vimeo.

What can patients do to access quality colon cancer care? Dr. Suneel Kamath shares tips on how to advocate for yourself, the importance of quality care versus convenient care, and colon cancer resources.

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

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See More from DETECT Colon Cancer

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Why Are Colon Cancer Cases in Young People on the Rise?

Why Are Colon Cancer Cases in Young People on the Rise?

 What Are Common Colon Cancer Health Disparities?

What Are Common Colon Cancer Health Disparities?

 What Are Colon Cancer Screening Guidelines?

What Are Colon Cancer Screening Guidelines?

Transcript: 

Katherine:  

If patients feel like they’re not receiving good care or they feel like they’re being treated unfairly, what steps should they take to access better overall care?  

Dr. Kamath:  

That’s a touchy one. It makes me sad that that even happens, but it does. I would say just never be afraid to be an advocate for yourself. To me, it’s your life and the consequence of bad healthcare, unfortunately, is not going to be on those providers. It’s going to be on you. Unfortunately, I do hear from a lot of people they worry about burning bridges, or annoying someone, or angering the doctors that they’re working with. I would tell them, “Don’t worry about that.” I don’t think people need to care about my feelings or the doctor’s feelings about the situation. 

You need to make sure you’re getting the best healthcare possible. Always feel comfortable getting a second opinion, going to a bigger center. I always recommend go to the main hospitals in your area. In the U.S. especially, I think we’re too focused on convenient healthcare and not the quality of the healthcare. I would definitely advocate, even if it takes you an hour to drive downtown to Duke or Johns Hopkins in your area, or the Cleveland Clinic, or the Mayo Clinic, or whatever, it’s worth that time compared to the person who just might be five or 10 minutes from you.  

Katherine:  

Right. Are there resources available now that might be useful for people who need, want more information?  

Dr. Kamath:  

Yes, are you talking about things that they could find online or read about? It’s in terms in of accessing care or just generally about … 

Katherine:  

Yeah, accessing care.  

Dr. Kamath:  

Yeah. I think there, again, I would go back to the American Cancer Society. The other ones that are really great, too, are – for colorectal cancer, especially, there are a number of really great patient advocacy organizations. The two that are coming to mind are the Colorectal Cancer Alliance and then Fight CRC. Both of them have phenomenal resources as far as patients who have gone through the whole journey and various phases of the journey. What I love for them, too, is usually there’s somebody that can represent your area in those settings, in those support groups and whatnot.  

I definitely think they’re a great resource in helping people find out who are the best doctors in your area. How did you get connected with them? Unfortunately, we all have phone numbers online and whatnot to find us. But we all know when you call them you end up in this interminable loop, it seems like, sometimes to get an appointment. It’s hard to navigate it all. I think a lot of times these patient advocacy organizations can be great bridges to both finding who the right people are and how do you best get in with them.  

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions

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Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions from Patient Empowerment Network on Vimeo.

This animated video defines common myeloma treatment goals, provides an overview of available myeloma therapies, and includes advice for making care decisions and the importance of being your own advocate.

See More from Collaborate Myeloma

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Collaborate | Being an Empowered Myeloma Patient

 Understanding Myeloma | How You Can Collaborate in Your Care

Understanding Myeloma | How You Can Collaborate in Your Care

 The Benefits of Shared Decision-Making for Myeloma Care

Transcript:

Bianca: 

Hi! I’m Bianca, a nurse specializing in myeloma. In this video, we’ll discuss myeloma therapy and explain how to work with your healthcare team so that you can choose a care plan best suited for YOUR myeloma. 

I’d also like to introduce you to Suzanne. Suzanne is a patient advocate living with myeloma.  

Suzanne: 

Thanks, Bianca. I’m happy to share my own experience and to talk about how I worked with my healthcare team to decide on a care plan. 

When my doctor and I were first considering my options, we started by setting treatment goals. Bianca, can you define treatment goals?  

Bianca: 

Sure! Each patient is unique, so it may vary by person. You should collaborate WITH your healthcare team to determine YOUR treatment goals. Common goals of myeloma treatment may include: 

  • Reducing and managing your symptoms. 
  • Slowing the progression of the disease. 
  • Inducing remission. 
  • And, helping you live longer while maintaining quality of life.

Suzanne: 

Thanks for explaining this. When I discussed treatment goals with my doctor, I pointed out that I still wanted to be able to play pickleball with my friends, and to care for my young grandchildren. We reviewed options that could allow me to stay as active as possible and manage my myeloma at the same time. 

Bianca: 

That’s a great point, Suzanne. It’s also important to remember that your treatment goals can change throughout the course of your myeloma. Discuss them regularly, not just with your care team but also your care partner – that can be a family member or even a close friend. 

Suzanne: 

That’s right. I discussed my care with my husband AND my adult children – it’s important to keep your support team in the loop.  

And it’s also essential to understand the treatment options available to you. Bianca, what are the types of therapy available to treat myeloma? 

Bianca: 

There are a number of different classes of therapy, which include: 

  • Proteasome inhibitors; 
  • Immunomodulatory therapies or IMiDs; 
  • Monoclonal antibodies; 
  • Stem cell transplants; 
  • There are also the new and recently approved therapies such as bispecific antibodies and CAR (Chimeric Antigen Receptor) T-cell therapy; 
  • And, of course, clinical trials.   

Clinical trials can be a good option for patients at any stage of disease, often giving patients early access to a viable and cutting-edge therapy. When considering treatment, you should ask your doctor if there is a clinical trial that may be right for you.  

Suzanne: 

Good point! When I was deciding on a therapy, my doctor and I, along with my husband, discussed the risks and benefits of each approach as well as the potential outcome of each option. My doctor also walked through the clinical trials that were available to me. 

Bianca, given all of the options, how do you decide which therapy is appropriate for a particular patient? 

Bianca: 

That’s a great question. As mentioned in our previous video, results of in-depth testing, which determine if a patient has low-risk or high-risk myeloma, can affect your choices. Other factors that impact treatment decisions may include: 

  • Your age, overall health, and any pre-existing conditions. 
  • Potential side effects of the treatment. 
  • Previous therapies that may have been used to treat your myeloma. 
  • The financial impact of a treatment plan. 
  • And the patient’s lifestyle and preference.  

Suzanne: 

That’s right. And, you shouldn’t hesitate to weigh in on what YOUR preference is. Do your own research so you understand each treatment approach, then work WITH your healthcare team to determine what might be best for you.  

Bianca: 

That’s excellent advice, Suzanne. So, when making treatment decisions, you should: 

  • Work with your healthcare team to understand your treatment goals. 
  • Talk with your doctor about all available treatment options. 
  • And, inquire about any clinical trials that may be right for you. 
  • Then, discuss the pros and cons of each option. 
  • Bring a care partner with you to appointments and take time post-visit to discuss the proposed plan and treatment options. 
  • And, always remember that you have a voice in your care. Speak up and ask questions. You are your own best advocate. 

Suzanne: 

Great advice, Bianca. Don’t forget to visit powerfulpatients.org/myeloma to learn more. Thank you for joining us!  

Can Veterans in Rural Areas Facing Lung Cancer Access Experts Via Telemedicine?

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Can Veterans in Rural Areas Facing Lung Cancer Access Experts Via Telemedicine? from Patient Empowerment Network on Vimeo.

Are there telemedicine options for veterans living in rural areas? Expert Dr. Michael Kelley from Duke University School of Medicine discusses the rural residence rate of veterans, consultation services, and second opinions.

[ACT]IVATION TIP

“And you can actually get a second opinion where you have a video visit with the expert as well. So these things are all available. So patients can ask for these for a second opinion. And there’s somebody else in the VA who would be an expert that we would connect the patient with.”

Download Resource Guide  | Descargar guía de recursos

See More from [ACT]IVATED NSCLC Veterans

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Do Disparities Exist for Black and Latinx Veterans Facing Lung Cancer?

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Breaking Barriers: Enhancing Veteran Support in Lung Cancer Care

 Navigating Lung Cancer Clinical Trials: VA Support and Resources for Veterans

Navigating Lung Cancer Clinical Trials: VA Support and Resources for Veterans

Transcript:

Lisa Hatfield:

I live in a more rural area of the country, if you have a patient who lives in a more rural area or maybe goes to a smaller VA facility for healthcare and they’re diagnosed with non-small cell lung cancer, can they access maybe through telemedicine visits, somebody who is more specialized in that type of cancer within the VA system, or how is that handled for veterans?

Dr. Michael Kelley:

Yes. So about a third of enrolled veterans live in rural areas. So this is very common for us. That’s 33 percent and the nation is about 14 percent. So it’s about two-and-a-half times likely that a veteran will be in a rural area. So VA has very mature advanced telehealth capabilities. We have tele ICU. We have tele emergency room services. And we have teleoncology. So there’s a national teleoncology service. It basically provides an expert in your cancer type at your VA. And this is mostly serving rural veterans.

I think the last number I saw was 44 percent of the veterans that are served by the national teleoncology service are in rural areas. So I practice in South Dakota and Arkansas, and I live in North Carolina. And I do only lung cancer. So this is a service that I think my colleagues also participate in around the country. And we’re able to get the expertise to the patient rather than the patient coming to the expertise.

Lisa Hatfield::

That’s very helpful for patients. I know I have a different type of cancer, a blood cancer, but being able to access at least the expertise of a specialist makes a big difference in my care. And, of course, my local oncologists are great, but they’re willing to work with my specialists. So I appreciate that the VA has such a brilliant advanced system for that. That’s a really impressive statistic that many patients, veterans use that telehealth option.

Dr. Michael Kelley:

Yeah, so in addition to the direct care, we also provide consultation services. So you mentioned that your local provider is willing to work with an expert. So we do that as well. So we can have what are called e-consults, electronic consults, where the local oncologist who might be a generalist is able to ask a question to an expert.

And because we are such a large system, we have an expert in everything. And I literally mean everything. So we have an expert lined up to be able to respond to every question and from any disease that is in the realm of oncology or hematology.

Lisa Hatfield:

Okay. And will that typically happen during a visit, or is it up to the patient to request that e-consult if they would like one?

Dr. Michael Kelley:

So it’s typically up to the provider, if they think they need a second opinion or they need help interpreting this, interpreting an opinion. But the patient can always ask as, you know, that you can ask their provider, talk to their provider, which I understand from a patient’s perspective can be sort of a sensitive issue is, “Hey, I don’t trust you. You’re my doctor, but I don’t trust you. Can you ask someone else for an opinion?” But you can do it in a way which is very respectful, obviously, and it’s totally okay with us, that, I’m always happy to ask a colleague to look at a case if a patient asks.

And you can actually get a second opinion where you have a video visit with the expert as well. So these things are all available. So patients can ask for these for a second opinion. And there’s somebody else in the VA who would be an expert that we would connect the patient with.

Lisa Hatfield:

Thank you for reassuring patients that it’s okay to do that. I know sometimes we’re afraid of offending our providers, but as you said, it’s okay to politely say, “This is very scary for me. I would like to know if there’s any way to do an e-consult with another physician.  So yeah, thank you for reassuring patients that that’s okay to do that.

Dr. Michael Kelley:

Yeah. There should be nothing that any patient ever asks or brings up with us that is offensive to us. Your concern is our concern. So don’t be afraid to ask for it. My biggest concern is that you won’t let me know when you have a concern.

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Lung Cancer Treatment Plan Advice | Where Do Clinical Trials Fit In?

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Lung Cancer Treatment Plan Advice | Where Do Clinical Trials Fit In? from Patient Empowerment Network on Vimeo.

What questions should patients ask about a lung cancer treatment plan? Lung cancer expert Dr. Thomas Marron shares key considerations when choosing therapy and discusses where clinical trials fit into planning.

Dr. Thomas Marron is Director of the Early Phase Trials Unit at the Tisch Cancer Institute at Mount Sinai Hospital. Dr. Marron is also Professor of Medicine and Professor of Immunology and Immunotherapy at the Icahn School of Medicine at Mount Sinai. Learn more about Dr. Marron.

See More from EVOLVE Lung Cancer

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Transcript:

Katherine Banwell:

What questions should patients be asking about their proposed treatment plan? 

Dr. Thomas Marron:

I think that in lung cancer, most patients are going  to get the same therapeutic approach offered to them wherever they go.  

It’s not like certain types of cancer where there’s 10 different ways to treat it. But there are some nuances and depending on the location in which you’re getting treated, whether it be in an academic hospital or a community setting, you may have different chemotherapies offered, immunotherapies offered. You may have different combinations offered. And so, I think it’s important to always ask your provider what other options are there, and why are they recommending one option over another. But I think it’s also really important that patients get second opinions.   

A lot of my patients, even my in-laws are always very skittish about getting a second opinion because they don’t want to insult their doctor, who they feel very close to. And I would say, it couldn’t be further from the truth. Any good doctor is 100 percent okay with a patient going and getting a second, third, fourth opinion because to us, the most important thing is that you have confidence in the decisions that we’re making about your treatment.

I always tell patients, I’m basically a waiter here offering you a menu of options and giving you my recommendation. But it is up to the patient in the end what treatment they receive and how long they receive it for.  

And if they decide ever to discontinue it. And I think that the more information, the more smart people looking at you, the better.  

Katherine Banwell:

Where do clinical trials fit into a non-small cell lung cancer treatment plan? 

Dr. Thomas Marron:

So, that’s a phenomenal question and one that I hope that everyone asks their providers when they see them because the reality is that while we are curing some patients, the vast majority of patients are not cured. And I think that all patients should at least consider a clinical trial, whether it be a first line clinical trial. So, the first medicine that you receive for your cancer, or at the time of progression.  

I think particularly, once patients progress on the first line therapy, those patients we really don’t have a cure for, even if we have some palliative chemotherapies or eventually these antibody drug conjugates to treat them.  

And so, I think everybody who is progressing on first line therapy should always consider a clinical trial. And I think it’s extremely important that patients realize the need to ask their providers about clinical trials, but also be an advocate for themselves and go out and get second opinions, get third opinions and see what trials are available in the community and even in other cities.

Because often times in New York City, I’ll have completely different clinical trials than my colleagues at the other five institutions in the city. And it’s really important that patients advocate for themselves, and they identify everything that’s available.   

Understanding Myeloma | How You Can Collaborate in Your Care

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Understanding Myeloma | How You Can Collaborate in Your Care from Patient Empowerment Network on Vimeo.

This animated video reviews the types of myeloma, essential testing following a myeloma diagnosis, and advice for working with your healthcare team for the best overall care.

See More from Collaborate Myeloma

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Transcript:

Bianca: 

Welcome back! I’m Bianca, and I’m a nurse. I specialize in caring for people with myeloma. And this is Suzanne, a myeloma patient advocate.  

In this video, we are going to learn more about diagnosis and testing, and how test results may impact myeloma care. 

Suzanne: 

That’s right, Bianca. Most patients want to–and should– understand their diagnosis. Let’s start with the basics. Can you explain the different types of myeloma? 

Bianca: 

You bet. Let’s start with MGUS, which stands for monoclonal gammopathy of undetermined significance. MGUS typically has no signs or symptoms and is characterized by an abnormal protein in the blood or urine. This type of myeloma doesn’t require treatment but should be monitored regularly. 

Smoldering myeloma is a very slow-growing type of myeloma. It also does not present with symptoms. Patients with smoldering myeloma have a higher chance of needing treatment, so blood and urine studies are ordered regularly. 

And then there’s multiple myeloma, which is a buildup of plasma cells in the bone marrow that crowds out healthy cells, and causes symptoms and other problems in the body. Multiple myeloma requires treatment, and there are a number of approaches available. 

Suzanne: 

Thanks for explaining the difference. When I was initially diagnosed, I underwent a series of tests that included a blood test, bone marrow biopsy, urine test, and imaging.  

Bianca: 

Those are the standard tests when diagnosing myeloma. Your healthcare team should also order a more in-depth FISH test, which comes from the bone marrow biopsy sample, and FISH  testing can provide a better understanding of your disease. This is important because the results may impact your treatment options. 

Suzanne: 

Right—and it’s important ensure that you have had all necessary testing including this more in-depth test. You should also review the lab results with your healthcare team. You can ask questions like:  

  • Am I high-risk or low-risk?  
  • What do the results mean? 
  • How will the results impact my options for therapy? 
  • And, how often should testing be repeated? 

Bianca: 

That’s good advice, Suzanne. All of the information gathered during your diagnosis, or following a relapse, should be considered as well as your overall health when deciding on a care plan.   

And, as you’ve modeled, working with your healthcare team to make therapy choices is essential. This is a process called shared decision-making, which basically means that patients and their providers collaborate on healthcare decisions. Participating in this process encourages patients to engage in their care, helping them to feel more confident about the approaches they choose. 

Suzanne: 

That’s right! Working WITH my healthcare team makes me feel included and brings peace of mind when considering my options.  

Bianca: 

That’s the way it should be—you should always be at the center of your care. So, when considering a plan with your healthcare team, here are a few key steps: 

  • Start by understanding your diagnosis. 
  • Develop a good relationship with your healthcare team so that you can participate in your care. 
  • Ensure you have had all essential testing, including in-depth testing. 
  • Discuss the tests results with your doctor and ask questions about what they mean. 
  • And, as always, do research on your own and confirm what you’ve learned with your healthcare team. 

Suzanne: 

And don’t forget to visit powerfulpatients.org/myeloma to view more videos with Bianca and me. Thank you for joining us!  

Are There Lung Cancer Outcome Disparities for Veterans?

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Are There Lung Cancer Outcome Disparities for Veterans? from Patient Empowerment Network on Vimeo.

Do lung cancer outcome disparities exist for veterans? Expert Dr. Drew Moghanaki from UCLA Health discusses veteran outcome studies for civilian versus VA healthcare, efforts on improving outcomes over time, and proactive advice for accessing the best lung cancer care.

[ACT]IVATION TIP

“…if you’ve got cancer, to really understand lung cancer, to really appreciate that there’s been a lot of advances and if you’re not feeling that you have access to those advances, get a second opinion and go to a bigger place that actually has an integrated approach to lung cancer care with a multidisciplinary team with the doctors in different specialties are working together and are focused on giving the best lung cancer care.”

Download Resource Guide | Descargar guía de recursos

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Lung Cancer Care for Veterans | Advancements in Radiation Oncology

Transcript:

Lisa Hatfield:

Dr. Moghanaki, can you discuss any disparities or differences in health outcomes among veterans compared to the general population when it comes to lung cancer treatment?

Dr. Drew Moghanaki:

Yeah, when it comes to lung cancer treatment, there’s new data that’s showing that since the discovery of better drugs and safer surgery and more effective radiotherapy, that survival rates are improving gradually, especially over the last 10 years. We’ve seen this same trend with VA data as well, that veterans, whether they’re getting care in a community or in the VA, the outcomes are getting better.

Are there disparities? Well, there’s notable disparities that we’ve identified which is that although outcomes in general are getting better for female and male and Black and white and other ethnic sections of the population, there continues to be a disparity in the civilian sector in that our Black patients, whether civilian or veteran, have inferior outcomes. And, of course, we know this is associated largely with other socioeconomic issues related to a long history of racism in this country that’s led to segregation and unequal access to health care and well-being opportunities.

But what we see in the VA, whether you’re Black or white, actually the outcomes are the same. So there’s something that VA is doing that’s addressing the barriers that are affecting people in the general population. And in fact, we see in some of our studies, Black veterans actually have better outcomes. And so we’re learning that it’s much more than just biology by itself, that there really are socioeconomic factors. And when you’ve got a healthcare system that’s more than just a healthcare system, it’s a benefit system as well.

We really provide a nice safety net that helps address those disparities. But the sad truth is that it definitely disparities do continue to exist outside the VA healthcare system. So my activation tip is, if you’re a veteran with maybe some less resources than others, again, check into the VA because the VA provides not just healthcare, but also a lot of support services, especially when you have lung cancer, which as mentioned, is just very difficult to deliver and requires more than just access to a doctor.

Lisa Hatfield:

And I’d like to mention a paper also that you published regarding improving outcomes over a certain time period. There was a paragraph in there where you had a discussion about potential contributing factors to the improvement of outcomes over time. Are you willing to discuss those a little bit, what those potential factors are for improving outcomes in patients with lung cancer?

Dr. Drew Moghanaki:

Yeah, there are three main components. One is making sure you get the diagnosis right. Making sure you do the right biopsies and you send the specimens for what’s called biomarker testing to make sure you know what type of lung cancer. There’s now more than a dozen different types of lung cancer. And if you don’t get that biomarker test, you’re not going to know. You’re just going to be treated with standard therapy. If you get the biomarker testing, you can get personalized medicine with a drug that’s more likely to work and probably safer than the older conventional chemotherapies, which still has a role. But sometimes we can skip chemotherapy altogether and go directly to a targeted therapy.

The second big advancement comes in the treatment delivery itself. So surgical treatments are now much less invasive than ever before. In fact, many of our patients, they go to the operating room, they wake up with four Band-Aids, and half their lung is removed. Remarkable technology using robotic and video-assisted technologies. Same with radiotherapy.

Patients lay on a table and the machine, the very sophisticated machine just rotates around them, zaps these tumors. The patient can actually drive themselves back and forth to treatment and go home and and live their lives. We’ve got patients getting lung radiotherapy, and they’re playing golf the next day. It’s unbelievable. And then the third really comes down to survivorship, which is that our patients, even if we really can’t cure their cancer, like a lot of advanced diabetes, we just can’t cure, we can keep our patients going as they live a high-quality life moving forward and make sure that their journey, unfortunately, with their lung cancer that they obviously didn’t ever want to have, that their journey is the best that it can be. 

So my activation tip here is if you’ve got cancer, to really understand lung cancer, to really appreciate that there’s been a lot of advances and if you’re not feeling that you have access to those advances, get a second opinion and go to a bigger place that actually has an integrated approach to lung cancer care with a multidisciplinary team were the doctors in different specialties are working together and are focused on giving the best lung cancer care.

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Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

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Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial from Patient Empowerment Network on Vimeo.

What’s the latest in ongoing advanced prostate cancer clinical trials? Expert Dr. Ronald Chen from KU Medical Center discusses ongoing trials, the INNOVATE trial and NRG-GU008 trial, clinical trial benefits, and patient advice for gaining clinical trial access.

[ACT]IVATION TIP

“…ask if clinical trial is not available at your local cancer center, see if a second opinion through telehealth with a larger cancer center is possible, so that you can learn about clinical trial options and see if that’s something that you want to pursue.”

See More from [ACT]IVATED Prostate Cancer

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Transcript:

Lisa Hatfield:

Dr. Chen, can you talk about any clinical trials that are ongoing for people who are living with advanced prostate cancer? And in particular, any trials that you or your colleagues are doing right now that would be of interest to this audience? And my last part to that question is, if they are not able to access those easily, do you have suggestions for patients to access those clinical trials if they’re working with a local community cancer center?

Dr. Ronald Chen:

I think having access to clinical trials is very important for every cancer patient and especially patients who have advanced cancer. And the reason I think this is really important is because in advanced cancer, we’re not doing as well as we want to in terms of extending survival and potentially even curing some patients. We’re not doing as well as we want to, and there’s a lot of room for improvement. And the only way to improve the outcomes for patients with advanced cancer is through clinical trials. Clinical trials is where patients can access first new promising treatments that are not currently available widely because it’s not yet FDA-approved.

And so, I think access to clinical trials is important and often offers a hope for patients because of a new promising agent that they could access through the trial. So I think that’s really important. And there are actually multiple…there are actually a lot of open clinical trials ongoing around the U.S. for patients with advanced cancer, testing new drugs, testing new ways to deliver treatment. I absolutely believe that there will be a new treatment approved for advanced prostate cancer probably every year for years to come because of all the new trials that are happening because of all the new promising agents that have been developed, being tested right now. So I think that’s really important.

I want to highlight a couple of examples of trials, but again, there’s so many, it’s hard to talk about all of them. But I’ll highlight a couple. There’s one trial sponsored by the National Cancer Institute for patients with no positive prostate cancer, which is when prostate cancer has spread to the lymph nodes, and the trial is called NRG-GU008, we call it the INNOVATE trial; and for patients with no positive prostate cancer, even though the cancer has spread to lymph nodes, this is actually a group of stage IV prostate cancer patients where there actually is still a hope for cure. We could actually still cure some patients with no positive prostate cancer. And the goal of this trial is to improve that cure rate.

So maybe right now, with aggressive treatment for these patients, maybe we can cure 50 percent of these patients in this trial that will incorporate a new drug that seems promising, we’re hoping that maybe improves the cure rate higher, maybe to 70 percent or higher. And so, I think that is a really important trial for patients who have that specific diagnosis.

In terms of for patients who live maybe in an area that…where the local cancer center does not offer clinical trials, I think there’s still opportunity for them to learn about clinical trials and even participate. And what I would advocate for is to ask for a second opinion.

Second opinions in cancer is now actually pretty commonly available because of the arrival of telehealth. Even if you live in maybe a small rural area, you can still request a telehealth consultation from a larger cancer center by telephone, by video, and through that, you can ask about clinical trials that are available. And I think it’s important to pursue that, to learn about the options, to learn if there’s a new treatment that could be available to you before you make a final decision on choosing treatment. So with telehealth, second opinion, learning about options, I think there’s actually opportunities to access clinical trials that way.

So my activation tip for this question is, ask if a clinical trial is not available at your local cancer center, see if a second opinion through telehealth with a larger cancer center is possible, so that you can learn about clinical trial options and see if that’s something that you want to pursue.

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Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

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Accessing Quality Myeloma Care | Advice for Overcoming Obstacles from Patient Empowerment Network on Vimeo.

How can you access the myeloma care that is best for YOU? Myeloma specialist Dr. Krina Patel shares advice for patients, including the importance of a second opinion and key questions to ask your doctor regarding your disease and treatment plan. 

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Krina Patel.

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Transcript:

Katherine:

What hurdles to patients face when accessing quality overall myeloma care and what can be done to get over these obstacles?  

Dr. Krina Patel:

I talk about this a lot. 

So, again I think the biggest problem for me is that because myeloma care changes so fast, which is a good thing that we have all these options and we have so many new therapies, it’s really hard for people who don’t do just myeloma to keep up. I don’t think I would be able to. I don’t do breast cancer. I don’t do other cancers, so when I take my boards every 10 years, I have to learn a lot to take those.

So, it’s just a part of the system that this the problem. So, I think if you’re seeing a local oncologist that sees five myeloma patients a year, they’re gonna be stuck on what was the treatment when they did it last time for that last patient, which again might be very different now because things change so fast. 

And so, again, you want to get to a doctor quickly, and I understand that. When people hear “cancer,” they’re like “I gotta get treatment. I gotta go fast.” But part of it is, if you need treatment quickly to get to your doctor. But then, try to make a second-opinion appointment done, even virtually because we can do that now after COVID; we have so many more options for that.  

And get that second opinion just to say “Is this the right therapy for me? Going forward, what should I do?” So, patients, “Should I get a stem cell transplant?” if you’re newly diagnosed or not. “What kinda maintenance should I be doing? Do I have high-risk disease or not? What are the nuances of my myeloma versus everybody else that we need to be careful about? Should we dose reduce?” There’s a lot of those types of hurdles. Patients, if they have kidney failure form their myeloma, we should be decreasing the dose of some of the medications; those types of things that really we can help with to make sure those outcomes are in the best. 

And that first treatment really does matter so that we can reverse as much as possible, for patients who have kidney involvement versus bone involvement, to decrease the pain really quickly. Do we need to get our radiation doctors involved to get radiation to help make sure you don’t get a fracture from a potential bone lesion. So, I think, again, I understand the urgency of seeing somebody, of getting diagnosed, and starting therapy.   

But quickly get to a second opinion so that they can help. And then, again, some of these patient advocacy groups are amazing for myeloma. And I think there’s just so much information there that you don’t want to get overwhelmed, but at the same time you want to start going a little bit at a time at those things so that you can learn more about what you need to be asking and doing.  

Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team

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Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team from Patient Empowerment Network on Vimeo.

How can head and neck cancer patients improve their care by partnering with their healthcare team? Expert Dr. Ezra Cohen discusses how patients can more actively engage in their care and treatment decisions, provides educational support resources, and shares key questions to ask providers about care.

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

Download Resource Guide

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Transcript:

Katherine:

Why is it so important, then, for patients to engage in their care and their treatment decisions? 

Dr. Cohen:

I think it’s critical not only for patients but for their caregivers as well. And really, patients should arm themselves with information. And fortunately, we live in an age where information is more readily available. You don’t have to depend on a single source. Now, granted, that information can be confusing, and sometimes it’s way too confusing. Sometimes that information can even be misleading. So, one does have to be careful.  

But, having said that, I think it’s so important for patients to arm themselves with information, different approaches, and what I often tell patients is get a second opinion. With one caveat, that I’ll get to in a second.  Because the reason is this is a life-threatening diagnosis for, unfortunately, many patients. And the first approach, our first chance to treat it is our best chance to treat it.

So, you really want to make sure that you’re in a center that you’re comfortable with, preferably one that has experience. A provider that you’re comfortable with, that you feel at ease asking questions, you’re not intimidated and a plan that really makes sense for you and has taken into account what is this individual.  

What’s our best approach to this individual? Not to an entire population but what are we going  to do for this person sitting in that chair at this time? Now, the caveat for second opinions, especially for patients with locally advanced disease, there is a time factor. And what I mean by that is I have seen patients get multiple opinions and delay the start of therapy, which we now realize impacts our ability to cure the cancer.

And so, I would say it’s fine to get second opinions or even third opinions, but don’t take a lot of time doing it. The earlier therapy starts, the better our chance of curing the caner. So, there is sort of a balance there. 

Katherine:

Well, that’s great advice, Dr. Cohen. PEN has also created downloadable office visit planners to help you organize your thoughts and communicate effectively with your healthcare team.  

And that’s also in the toolkit I mentioned earlier at powerfulpatients.org. And I think this is a good segue into talking about the importance of self-advocacy. If a patient is feeling that they aren’t getting the best care or they’re uncomfortable with the care they’re getting, what steps should they take to change that? 

Dr. Cohen:

Well, I think the first thing is talk to the provider. Just have that conversation. I think we have to realize that oncologists are human, and they’re people, and sometimes they get very busy. Sometimes they don’t pay attention to as much as they should. And sometimes, they don’t even know that there’s a problem. So, I would say the first thing to do is have a frank conversation with your provider. These are my questions. Don’t be afraid to ask questions. Never be afraid to ask questions. These are my expectations.  

Can you meet them? And in my experience, not even just personal experience, but working with many oncologists over two decades, most oncologists will say, “Oh, I didn’t realize that this was what you wanted. Let’s make it happen.” So, that I would say is the first thing. Talk to the people that are already taking care of you. If, or whatever reason, that doesn’t work and you’re not comfortable, I would ask that provider, “Is there somebody else that – I would like to change. Is there somebody else that you would recommend?” In the worst-case scenario, that might involve going to a different institution. And the reason I say that’s a worst-case scenario is that especially in the setting of locally advanced disease, interrupting therapy or changing therapy in the middle really would have a dramatic adverse impact on outcome.  

So, I would try to avoid that as much as possible. If there are natural points in the care where it makes sense to consider a change, I think that would be a lot less impactful and make more sense. For instance, if somebody is going from having completed a course of chemotherapy radiation, they now have no evidence of disease on their scans, and they want to switch to a center that is closer to home, for instance. That makes sense. And we have certainly many patients that do that and that’s a natural transition. But, to change in the middle of care, that can often have a dramatic negative impact.