Tag Archive for: second opinions

Why Should DLBCL Patients Feel Empowered to Speak Up?

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Why Should DLBCL Patients Feel Empowered to Speak Up? from Patient Empowerment Network on Vimeo.

Why is it vital for diffuse large B-cell lymphoma (DLBCL) patients to engage in their care? Expert Dr. Amitkumar explains the importance of speaking up and the value of considering a second opinion.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

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Transcript:

Katherine:

Why should patients feel empowered to speak up?

Dr. Mehta:

So, that is very, very important because at the end, anybody and the patient is in the center. As we talked about their preferences, shared decision-making, they need to speak up because, at the end, I need to know, we need to know as a care team their preferences, right? Who is going to be my support? Who’s going to be with me? Maybe they might have to move somewhere to get the treatment, right? Or sometimes I bring up and I have so many patients who actually brought up “Well, I have a trip planned on this date,” right, or “I have a graduation planned,” or “I have son or daughter’s wedding planned,” right?

So, they should feel empowered to speak up. Yes, they’re shocked at the first instance because of their diagnosis of cancer. But that part after sharing all the information about cancer and treatment, it eases up a little bit. Then they feel “Okay, it is not end of the road,” right? “I’m going to fight it out.” But at the same time, there are important life events planned. So, they need to speak up, not only for that but also, as we talked about, preferences, their choices about the clinical trial.

Sometimes it is okay to ask whether I can go for another opinion, especially now in many institutions there are specialists who just focus on lymphomas, right? In that case, it is okay to ask whether – anywhere else I should go for an opinion and see whether I have more options. So, patient is always in center. And I feel always comfortable when patients speak up, and I make sure that “Yes, I will make sure that whatever the preference is, I will try to meet those preferences.”

Should Advanced Non-Melanoma Skin Cancer Patients See a Specialist?

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Should Advanced Non-Melanoma Skin Cancer Patients See a Specialist? from Patient Empowerment Network on Vimeo.

Do advanced non-melanoma skin cancer patients need to see a specialist? Dr. Sunandana Chandra explains the benefits of working with a specialist, how she empowers patients, and when she recommends seeking a second opinion.

Dr. Sunandana Chandra is a medical oncologist and Associate Professor of Medicine at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Chandra.

Katherine:  

Why is it important that patients speak up and have a voice in their care? 

Dr. Chandra:  

Well, I think for person to feel empowered, they have to understand their cancer, in my opinion. 

And that’s part of my responsibility is to try to share what I know about their cancer, my medical and clinical experience dealing with that type of cancer, and really, to try to empower them by giving them knowledge about their cancer, about their diagnosis, about the prognosis, about potential treatment options. And, I really think that that knowledge is really empowering for our patients and their family members, and I think with that knowledge, they can make the most informed decision, and they can help us then figure out what the best management plan for them is. You know, I try to spend a considerable amount of time with my patients and their family members and loved ones to explain all of this at the get-go so that that way, oftentimes, they can go home, they can kind of think about it, come back with more questions. 

Or, if they do some additional research on their own, hopefully some of what I’ve talked about might resonate and might even spur on more questions that usually can be very helpful for us to try to answer, helpful for the patient, I mean. 

Katherine:

Absolutely. Should patients consider seeing an advanced non-melanoma skin cancer specialist? 

Dr. Chandra:

You know, for a “routine” non-melanoma skin cancer of which the most common are basal cell carcinomas, squamous cell carcinomas, they may be tiny spots, maybe one, potentially multiple, that can just be excised and the person can be followed closely. For them, perhaps seeing someone locally, maybe very reasonable.   

But, if the patient themselves is ever worried or unsure, or they feel like they want to see a specialist, I absolutely would encourage that. In addition, for a person who has recurrent non-melanoma skin cancers, you know, multiple occurrences, maybe even more advanced than others, I think that those particular patients going to a specialist or a number of specialists may really help with the most advanced care. Maybe it’ll allow the patient and their team to be more proactive, maybe allow for other options that are maybe not standards of care, maybe novel, but promising.  

And so, I think for patients who are worried or for patients with more high-risk features, more increased number of skin cancers, perhaps more advanced skin cancers, I think having an expert or a team of experts on their team is certainly worth considering. 

Katherine:

What is your advice for patients who may feel like they’re hurting your feelings by seeking a specialist or a second opinion? Any advice for self-advocacy? 

Dr. Chandra:

Oh, gosh. I mean, I always tell our patients I strongly encourage it if they bring up especially. You know, I never want to patient of mine or their family members to look back and have any regrets. And so, from the get-go, I think that they should seek opinions. They should feel comfortable with the management that I or someone else is recommending to them.  

And, if a person asks me if it’s okay if they seek an opinion, I’m actually very encouraging of it because it doesn’t hurt my feelings. In fact, I think, again, it empowers the patient, which at the end of the day I think is most important and allows, hopefully, for them to have no regrets. And, I always tell patients more heads are better than one. So, if a colleague has another idea that perhaps I didn’t think of or vice versa, having that discussion and ultimately, that may allow for better patient care, which I think is all of our goals, which is actually our ultimate goal, I should say. 

Expert Advice for Recently Diagnosed Lung Cancer Patients

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Expert Advice for Recently Diagnosed Lung Cancer Patients from Patient Empowerment Network on Vimeo.

A lung cancer diagnosis can be overwhelming. Lung cancer specialist Dr. Estelamari Rodriguez shares key advice for recently diagnosed patients, including tips related to essential testing and preparing for appointments.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

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Transcript:

Katherine Banwell:

What key advice do you have for recently diagnosed lung cancer patients? 

Dr. Estelamari Rodriguez:

I think that a couple of things. When it’s a diagnosis of lung cancer, it’s very overwhelming, and fortunately now there’s a lot of resources online, but at the beginning there’s a lot of information that you don’t know. So, sometimes if you go online all you do is get scared. I think that you need to answer some very specific questions from your doctor. What is your stage? And then, after your stage, my next question is; what is a molecular driver of my tumor, the sequencing of my tumor?  

In the past, we thought all the lung cancers were the same, but now we know they’re many, many different types of lung cancer. And they’re the EGFR-driven cancers, the ALK, the ROS, they’re all different, they all have different treatment options. And when you go and look online, there’s organized advocacy groups around each of these mutations, and then you can get better information, and valuable kind of insight from the information that is out there. So, I think the first thing is to before you go in the internet, talk to your doctor about your stage and require, not ask lightly.  

Require that your genetic mutation, your sequencing is done at the time of diagnosis of advanced lung cancer. Because that would really determine your treatment.  

So, I think that is very important for patients that get diagnosed. And then also, understand that there are a lot of resources out there, so that you need to ask for questions, bring someone with you. During COVID a lot of the clinics were closed, but we were able to have family members join virtually the visits, and now patients can come in with their family members. 

I find that having someone else in the room who wrote answers and wrote notes, will really help you kind of get the most out of your consultation. And also ask questions for the next time you come, or we have a portal where patients ask questions online. So, the first visit where you get the most questions answered, and sometimes it’s part B and part C. So, you have to keep until you feel satisfied that you understand the plan. We also tell patients that doctors don’t know everything, sometimes the doctor that you have is not the one that you feel you have a connection with. So, know that you have rights, and there are other doctors out there, and you can get second opinions. 

So, you are the best advocate, it’s your life, and you can rely on your doctor, and their physician extenders, physician assistants, nurses, to get as much as you can from that. But also, look outside of your institution, maybe there’s a better option for you. 

Should Prostate Cancer Patients and Families Keep Using Telemedicine?

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Should Prostate Cancer Patients and Families Keep Using Telemedicine? from Patient Empowerment Network on Vimeo.

 Prostate cancer patients can still utilize telemedicine after COVID-19 restrictions have lessened. Dr. Heather Cheng from Seattle Cancer Care Alliance shares information about situations when telemedicine visits can be helpful for patients.

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Transcript:

Sherea Cary:

Dr. Cheng, now that telemedicine has broader applications, should prostate cancer patients and families keep telemedicine in their toolbox post-COVID?

Dr. Heather Cheng:

Yes, I actually think it’s one of the…telemedicine, in general, is one of the silver linings of COVID, I think from a member of the medical community, we had to learn…actually, I was already doing some telemedicine, limited telemedicine before COVID hit. But I do think for patients who have access to an Internet or a smartphone and are able to do their visits, it is really decreasing the burden on them in terms of how much time they have to take off work to go to their medical appointments, I think there are times when patients still have to go into clinic, for example, to get treatment, but a lot of times, at least for prostate cancer patients, they can have their PSA that prostate-specific antigen blood test, checked in a lab close to their home, and then you know, at a time that’s convenient to them. And then I can do a telehealth with them later, so that they don’t have to take as much time off work. And so, I think in some cases it’s really, really made it easier for patients, although there are still times when we do need to see them in person, it’s just really nice to have that as an option.

So, I really do think that’s a really good thing, and I hope that the medical community and patients can continue to benefit from that. The other time when it’s helpful is for second opinions and consultation, so this is also really important for patients to know about it, is the first time they’re making a big decision about their treatment and they’re not 100 percent sure maybe they want to get us that an opinion, just to make sure that other doctors agree and that they get another chance to hear the treatment options explained in a different way. And I see a lot of patients for second opinions just to kind of get more confidence, maybe they’ll still decide to get treatment with their local oncologist, because it’s easier closer to home and less disruptive than to come to see us in Seattle. But it still gives them more confidence that they’re going down the right treatment path, so I think telemedicine also makes that a lot easier for patients as well.

Empowering Lung Cancer Patients to Increase Their Treatment Options

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Empowering Lung Cancer Patients to Increase Their Treatment Options from Patient Empowerment Network on Vimeo.

How can lung cancer patients be empowered to increase their treatment options? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya explain ways to improve access to lung cancer treatments and to process information more completely for the best care. 

See More from Best Lung Cancer Care No Matter Where You Live

Related Resource:

Transcript:

Dr. Nicole Rochester: 

If we shift gears a little bit and talk about access and some of the concerns about treatment access for lung cancer patients, we know that sometimes these barriers that patients face actually limit their access to treatments, and you indicated surgery as being the mainstay and some difficulties with that, so how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options that are available, so that if they are in an office and maybe something’s being offered, but that’s not actually, the standard of care, how do we empower them to get that information and then to act on it? 

Dr. Olugbenga Okusanya: 

Yeah, so number one, which is something I think people do and they don’t realize how valuable it is, bring a friend to the appointment, don’t come by yourself, because you are in an incredibly vulnerable position, you’ve learned or are learning something incredibly emotionally charged and usually very scary. So, you want to bring someone who obviously is going to love you and care about you, but has enough emotional distance from it that they can be your advocate, they can ask those questions in the room that you may just not be there mentally to ask. Number two, never be afraid to get a second opinion, if you’re lucky enough to live in a populous area with multiple health systems, get a copy of your chart, get a copy of your data, get your disc, make an appointment to see another specialist in another health system and see what they say. Because at the very least, if the information is concordant, then you’re going to feel pretty good about saying, “Okay, then I should just go where I think I feel best or who I have the best sort of relationship with?” And again, if you are not lucky enough to have that opportunity, I would be very aggressive about seeing if telehealth is an option to reach out to someone who is a specialist, I’ve had not happened to me in the past, I remember I had a woman who telehealth, me from Ohio, because she’d actually read one of my papers about lung cancer, and she sent her scans, uploaded them, I looked at them and I gave her my opinion, and this is the new age or medicine. 

This is where we’re at now. This is a viable option, and even if telehealth isn’t an option, you can always just get on the phone. As a lung cancer specialist, a lot of the information I need can be garnered from test scans and images, so frankly, the physical exam has some role, but is not the mainstay of how a lot of the decisions are made. So even if I see your scans and I talk to you, I can give you an opinion over the phone, it takes me 15 to 20 minutes, and a lot of times, those visits may not even be charged, depending on who you actually ask to give you an opinion. 

Dr. Nicole Rochester: 

I’m a huge proponent of second opinions, I’ve talked to so many patients and family caregivers who think that they’re offending their doctor if they ask for a second opinion, so I appreciate that you brought that to the forefront and you deserve to have multiple opinions as you’re making these very important life-changing decisions.

What Are the Benefits of Telemedicine for Prostate Cancer Patients?

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What Are the Benefits of Telemedicine for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo. 

What are some of the telemedicine benefits that prostate cancer patients can experience beyond the most obvious ones? Expert Dr. Leanne Burnham shares patient safety, logistical, and care option benefits that she has seen with telehealth for her patients — and also shares the percentage of prostate cancer patients who prefer virtual visits

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Transcript:

Dr. Leanne Burnham

So telemedicine is presenting all kinds of new opportunities for any patient, but in terms of prostate cancer patients they fall into that category as well. What we’re seeing is that actually, the majority of patients prefer telemedicine upwards of 75 percent prefer to have that option, and adding virtual care has a few benefits including you don’t have to travel to the doctor, and you have access to maybe more options, more physician options, more institutional options. Maybe there’s a setting where they have a treatment that the location that you previously have gone to, doesn’t have. You have an option to network outside of your usual team to speak with other specialists, maybe get a second opinion. So that is something that patients are really saying that they like in the time of COVID that we are right now, where telemedicine is definitely increasing.