Tag Archive for: self-advocacy

Why Should Prostate Cancer Patients Be Empowered?

Why Should Prostate Cancer Patients Be Empowered? from Patient Empowerment Network on Vimeo.

Prostate cancer researcher Dr. Andrew Armstrong explains how he empowers his patients and describes the positive benefits of speaking up in your own care.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More from Engage Prostate Cancer

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Transcript:

Katherine Banwell:

How do you empower patients? 

Dr. Armstrong:

Well, I empower patients by talking and listening. So, listening probably the most important part. Just getting to know somebody and their family is empowering them. You’re understanding their values, their preferences, understanding what side effects they’ve experienced in the past, what comorbidities or health conditions they’re facing, what their fears are. You know, what spiritual values they might bring, what support systems they might bring.  

Every patient is different, and part of a consultation is getting to know the person in front of you, and that empowers them to be honest. Empowers you to be transparent and get to know them so that you can help them sift through a complex decision. 

Giving information is really important, so I do a lot of talking as well as listening. 

But giving information back to the patient about risks and benefits of treatment A, B, or C or no treatment is critical. And then there is a lot of then listening to that shared decision about what might be right for that patient and navigating it. 

Katherine Banwell:

Why is it important for patients to be empowered? 

Dr. Armstrong:

It’s important for patients to be empowered, because this can often be a life-threatening decision. It’s important because this is ultimately their decision for their body, and making this decision can have major consequences that patients have to live with. Doctors empower patients to make the right decisions so they’re comfortable and don’t have regrets looking back on life and these important decisions. Whether this is picking surgery or radiation, or picking initial surveillance, or enrolling on a trial, or starting hormonal therapy. 

I think each decision sometimes is reversible, but sometimes is a big decision that can’t be taken back, and making sure that that patient feels empowered, that they don’t have regrets later, that they’ve gotten all the information to make an informed decision is really critical. 

Why Should Follicular Lymphoma Patients Seek a Second Opinion?

Why Should Follicular Lymphoma Patients Seek a Second Opinion? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar encourages patients to take an active role in their care and explains why they should feel comfortable seeking a second opinion.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

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What Is the Patient Role in Follicular Lymphoma Treatment Decisions?


Transcript:

Katherine Banwell:

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

Dr. Matasar:

I would say there is this. Any doctor who is taking care of you and doesn’t want you to have the best information and the best options is not a very good doctor. This is never about the doctor. It’s not about me. It’s about you. And if a doctor’s ego is getting in the way of a patient getting the best care, the best options, the most modern and up-to-date available information around their illness and around how best to take care of it, that doctor better check themselves.  

Similarly, the patient should understand that it’s about you. It’s not about me or your other doctors, or anything. It’s about you getting what you deserve, which is the clearest insight and the most appropriate treatment options available. And you should have no reservations in seeking that out, and honestly most oncologists are happy to have you get a second opinion, because they’ll feel more supported in your care. It’s stressful to be an oncologist sometimes too. And for you to get a second opinion from an expert and the expert says, “You know what? Yeah, your oncologist is spot-on.” 

That can be very validating and reassuring. And then, that expert oncologist is a resource to your local oncologist, and they can work together in your care. Everybody works better as a team. It’s just as true for oncologists as for anybody.  

Why Should You Consider Seeing a DLBCL Specialist?

Why Should You Consider Seeing a DLBCL Specialist? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Matthew Matasar explains the benefits of seeing a diffuse large B-cell lymphoma (DLBCL) specialist and encourages patients to be partners in their own care.

Dr. Matthew Matasar is a lymphoma expert at Memorial Sloan Kettering Cancer Center and Chief of Medical Oncology at Memorial Sloan Kettering Bergen. To learn more about Dr. Matasar, visit here.

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Advice for Speaking Up About Your DLBCL Care


Transcript:

Katherine Banwell:

Why should DLBCL patients consider seeing a specialist? What are the benefits? 

Dr. Matasar:

The benefits of a specialist in the treatment of diffuse large B-cell lymphoma is that this field is changing rapidly. Treatments like this R-CHP-pola regimen, we understand that these data are very new reported only months ago but perhaps academic centers may have a greater sophistication or comfort with using these newer data to support the care of our patients.  

The second is that there are many important and highly relevant clinical trials that are ongoing as we continue to try to improve outcomes for patients with diffuse large B-cell lymphoma either receiving their first treatment or for those patients who, unfortunately, suffer relapse. Some of these treatments may only be available at academic centers of excellence and understanding that your options for treatment may be different under the care of an expert in this disease is an important thing to consider when trying weigh how best to approach receiving care.  

Living With an MPN and Being Your Own Best Advocate

Living With an MPN and Being Your Own Best Advocate from Patient Empowerment Network on Vimeo.

 MPN patient Rita experienced an extended path to her diagnosis. Watch as she shares her patient journey of varied symptoms, how self-advocacy and self-education assisted in her care, and her tips on how to empower yourself as a patient. In Rita’s words, “Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you.”

See More from Best MPN Care

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My Polycythemia Vera Journey to Empowerment

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Transcript:

My name is Rita, and I was diagnosed with polycythemia vera in March 2019 after nearly three years of wide-ranging symptoms. Like many patients, my path to diagnosis was long and required me to self-advocate.

I was generally healthy until my symptoms of polycythemia vera began. I first experienced one episode of neck, jaw and chest discomfort, and the hospital blood test showed somewhat elevated platelets, and elevated red cell distribution width (RDW); but the doctors weren’t concerned. Next, I started getting optical migraines that were also dismissed. These were followed by incidents of feeling weak and sweaty; some days with headaches, dizziness, and fatigue; and also looking like I had a sunburn on my face with bloodshot eyes. I dismissed these symptoms. Then I started feeling short of breath at times, especially lying down, and experienced intermittent stabbing underneath my left lower chest area.

After having blood tests done, I had to call to find out my results that showed high hemoglobin, high red blood cells, and high hematocrit levels. After I Googled my test results, the first thing that came up was polycythemia vera. Experiencing additional vision issues, abnormal blood test results, chest pressure, and “foggy headedness” that frightened me, my doctor finally referred me to a hematologist who confirmed my suspicions with a PV diagnosis.

Some things I have learned during my MPN journey include:

  • We need to feel comfortable advocating for ourselves, and we need to make sure our doctors are open to being our partner in healthcare rather than our ‘boss’ in health care.
  • We also need to educate doctors that what looks like “dehydration” on a CBC could actually be a rare blood cancer. 
  • Get copies of your own blood test results, X-rays, other medical reports, etc., and, within reason, try to learn what they mean.
  • Diagnosed patients should be allowed to self-refer to an MPN specialist rather than be dependent on their physicians to do it. 
  • We need to self-advocate as “women of a certain age” to make sure we’re not medically or symptomatically reduced to “it’s menopause.”
  • Be careful how you express yourself to your doctor, because a careless comment may throw off your path to a correct diagnosis.
  • Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you. 

These actions are key to staying on your path to empowerment.

Expert Advice for CLL Self-Advocacy

Expert Advice for CLL Self-Advocacy from Patient Empowerment Network on Vimeo.

Some CLL patients struggle to find the confidence to speak up in their care. Dr. Catherine Coombs encourages patients to discuss their treatment and lifestyle goals with their CLL teams and provides advice for being proactive in their care.

Dr. Catherine Coombs is an Assistant Professor of Medicine in the Division of Hematology at The UNC Lineberger Comprehensive Cancer Center. Learn more about Dr. Coombs here.

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Transcript:

Katherine:

Dr. Coombs, why should patients feel confident in speaking up and being a partner in their care? Do you have any advice for helping them find their voice? 

Dr. Coombs:

Great question. I think a patient is their own best advocate. We as their physicians always try to advocate for them, but we often don’t know what their wishes and desires are. I think through speaking to what’s important to you, that can help me know a little more about what path we should take. There’s not always one right path.  

I’ve talked about these two great treatment options we have. I had one patient who loved fishing and he just didn’t want to be in the infusion center. That’s the person that should go on the oral drug, where he doesn’t have to come to and from as often.  

If you tell us about your goals and your desires, that helps us also be your top advocate because then we have a little more background for what’s important to you. I think that’s my main thought. We’re here for you, but we need to know what you value the most. We don’t always know that.  

Katherine:

When should a patient consider a second opinion or a consultation with a specialist? 

Dr. Coombs:

I never discourage a second option. I’m a CLL specialist, but I’ve had patients ask for a second opinion. I’m always enthusiastic about it. If a patient feels that they need another set of eyes on their case, I’ve learned some things from some of my patients who have seen specialists in different areas of the country or locally. We have Duke down the street. Sometimes different providers just have different perspectives.   

Or, sometimes the patient just needs to hear something again if it doesn’t sound right to them. I’ve had patients for example who are one watchful waiting who really just had trouble believing. “I have leukemia, and you’re really telling me to do nothing.” But then they hear it from someone else and it just helps it sink in. I’d say the answer is anytime. Anytime you think you need another set of eyes on the case.  

But I would say especially for people in the community. I do think there’s a lot of value in seeing a CLL specialist once if it’s something that you’re interested in and your insurance pays. I think the community docs have one of the hardest jobs, and I don’t think I could do it. There are so many different cancers that they have to know about. I think, if anything, I have the easy job; I have one tiny slice of the pie that I know a ton about. Not to say they don’t do great jobs; I’m actually phenomenally impressed with most of the community.  

However, they have so much to know, often you can maybe get a little more of a unique view on CLL by seeing a CLL expert. If that’s in your interest but certainly not mandatory, especially if your goal is to stay away from doctors.  

The Importance of Patient Self-Advocacy in Bladder Cancer Treatment

The Importance of Patient Self-Advocacy in Bladder Cancer Treatment from Patient Empowerment Network on Vimeo.

Bladder cancer expert Dr. Shilpa Gupta encourages patients to advocate for themselves and to become active members in their treatment and care decisions.

Dr. Shilpa Gupta is the Director of the Genitourinary Medical Oncology at Taussig Cancer Institute and Co-Leader of the Genitourinary Oncology Program at Cleveland Clinic. Dr. Gupta’s research interests are novel drug development and understanding biomarkers of response and resistance to therapies in bladder cancer. Learn more about Dr. Gupta, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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Transcript:

Katherine:                  

Right. Let’s talk about patient self-advocacy for a moment. Patients can sometimes feel like they’re bothering their healthcare team with their comments and their questions. Why is it important for patients to speak up when it comes to symptoms and side effects?

Dr. Gupta:                  

Yeah, I think the patients have to be their own advocates, right? Unless they do tell their team about what they are going through, many times action will not be taken unless they’re actually seeing their team in real-time.

And sometimes that visit may not be happening for months so it’s very important to never feel that you’re bothering the teams. And nowadays, with all these electronic ways where patients can communicate with their teams, I think patients are very aware that they can send a MyChart message, for example, and someone will get back to them within a day. So, I think that is really important and the way they can communicate with their teams has also evolved.

Katherine:                  

How do you think patients can feel confident in speaking up and becoming a partner in their own care?

Dr. Gupta:                  

I think they have to tell their doctors during their visit that they would like to – whatever their expectations are and what they would like their teams to do to fulfill those expectations.

I think that’s the best way I can say this. That they should always speak up no matter what and if they feel that their concerns about treatment are not being heard, then they should let their treatment teams know and ask what alternative treatments there may be. Or, if their life goals have changed, sometimes patients want to get aggressive treatment and sometimes they just don’t want to go through it anymore. They should let their teams know so, adequately; the goals of care can be modified.

Katherine:

Right. If a patient isn’t feeling confident with their treatment plan or their care, should they consider a second opinion or consulting a specialist?  

Dr. Gupta:

Absolutely. I think every patient has a right to consult a second opinion or get second opinions, or even more opinions if they want to make the right decision. Many times, patients are told about one treatment option, and then they want to know, “Well, what alternative options do I have?” “What if I really don’t want my bladder out?” “Is there anything else that can be done?” So, they should be seeing a radiation oncologist in that case.  

I think the way we can really make a difference and offer multidisciplinary care is to have the patient see a surgeon, a radiation oncologist, and a medical oncologist. That’s true multidisciplinary care for anybody with localized disease. For metastatic disease, we have a lot of options and usually medical oncologists are the ones who manage it.   

Patients can always get second opinions if they feel they want to do something less or more aggressive.   

Katherine:

What advice to have for patients who may be nervous about offending their current doctor by getting a second opinion?  

Dr. Gupta:

That’s a great question, Katherine, and I know a lot of patients feel that their doctors may feel offended, but in my experience when – if my patients are not local or they – I actually encourage them to go get second opinions and even make referrals to places which may have trials if we don’t have that. It’s always good to have the patients be able to decide and I don’t think nowadays doctors take offense if patients want to get another opinion. In fact, we try to collaborate with our community oncologists.  

Where, let’s say patients are currently being treated and they come to us to discuss trials or just to discuss if they’re on the right track. We reassure them and reach out to the community doctors that – yes, we totally agree with what the patient is doing, and these are some other options down the line. And, with the advent of virtual health it’s really become a lot more collaborative because patients are still getting treated locally. When the have their scans and have questions they can schedule a virtual appointment with their doctors in institutions where we have more treatment options like trials.  

Katherine:

Dr. Gupta, if patients want to learn more about bladder cancer, or if their families want to learn more what are some credible resources that you would send people to?  

Dr. Gupta:

Yeah, I think it’s always good to get credible information than just Googling things which may or may not be true. Bcan.org is a very powerful resource that is a Bladder Cancer Advocacy Network, and as the name implies it’s for the patients, made by bladder cancer advocates.   

That’s one of the resources that we highly recommend. Then there’s the resource that you all are working on. So, I think these collectively are the best sources of information which patients should try to stick to.   

Katherine:

Right. That’s good advice. To close, what would you like to leave our audience with? What are you hopeful about?  

Dr. Gupta:

I think I would like to say that there’s a lot of good information, there’s a lot of advocacy resources. Patients should try to get their information from these verified sources and bring it to their care teams. And never hesitate to reach out for whatever they need during their diagnosis and treatment phase. Always ask questions. Ask about clinical trials. Ask about alternative options. That’s what I would leave the message to be.   

Katherine:

Thank you so much for joining us today, Dr. Gupta. We really appreciate it.   

Dr. Gupta:

Thank you, Katherine.   

BIPOC Lung Cancer Patients and Health Disparities

BIPOC Lung Cancer Patients and Health Disparities from Patient Empowerment Network on Vimeo.

What do some BIPOC lung cancer patients experience in terms of health disparities? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya explain health disparities at the different stages of lung cancer diagnosis and treatment – and note differences in diagnosis and survival statistics. 

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


Related Resource:


Transcript:

Dr. Nicole Rochester: 

So I want to talk about racial and health disparities, ethnic and health disparities, specifically in lung cancer care. I know that you have done some research in this area, and certainly being a person of color, this is something that I would imagine you relate to, so we know that the CDC and many other healthcare organizations have now declared racism a public health crisis, and certainly in 2021, we continue to see worse outcomes for cancer and many other chronic illnesses in people of color, so I’m curious, what do you think are the notable health disparities that are consistently seen in treating BIPOC patients living with lung cancer?  

Dr. Olugbenga Okusanya: 

Yeah, unfortunately, this is an area of interest of mine. And it turns out that the disparities are literally every single stage, there’s not an aspect of lung cancer care, which there is not a significant disparity that hinders the ability of minority patients to get better care, period at all stages. So overall survival for lung cancer for Black patients is worse than white patients, even though Black patients get diagnosed on average two to three years younger than their white counterparts. Black patients are less likely to get surgical therapy for early-stage disease, which is the actual care for an early-stage disease dates than Black patients, than white patients, that gap has been narrowing over the last 20 years, but it is by no means closed. Black patients are unfortunately less likely to get an appropriate work-up to get the indicated tests. They are also less likely to get the chemotherapy when it is indicated, and they are less likely to be enrolled in clinical trials. So, literally at every step there is a significant inequity that affects Black patients, and I think it’s really disheartening to see in a field where lung cancer is the most common killer and cancer, and frankly, there are lot    s and lots of patients who have options, who have good options that never get investigated and never get delivered. 

Dr. Nicole Rochester: 

That is extremely heartbreaking, and it’s sad to hear that we see the same disparities in lung cancer that we see with every other chronic condition, with every other cancer, certainly what we’ve seen recently with COVID-19 as well. And it really underscores what you said previously, which is the importance of being an advocate for yourself and doing your research and making sure that you really are getting the best care.

Be Your Own Best Advocate

(Editor’s Note: Gina Goldfarb is a cancer patient and founder of New Beginnings Coaching Services, LLC, which helps women with breast cancer cope with the emotional and physical challenges of a cancer diagnosis.)

I have walked in your shoes. I have been in the shoes of a caregiver and I am a breast cancer survivor and I am a certified professional coach with a niche in survivorship.

I have seen firsthand how being your own best advocate throughout the cancer experience can give you your power back and get that feeling that you really are in control at this time.

It all comes down to choices. As a coach, the value that I deliver to my clients is around educating them on how we show up daily in our experiences, providing awareness to them, showing them that we do have options and choices, despite the fact that we are experiencing very heavy emotions and may feel like we are at the effect of what is happening to us. We can often feel like we are “victim” to our experience, our doctors and our caregivers, but that is just chatter that our mind creates. It is also completely valid and normal for what we are going through, but we can shift our energy to a more empowering place where we start to be the cause of our lives, meaning we jump into the driver’s seat and take back control by becoming an active participant.

Patients need to educate themselves about their disease so that they can have intelligent conversations with their doctors. In this age of technology, we have so many resources at our disposal online. There are so many websites, support groups and organizations that offer information about a particular condition. We can look into conventional medical treatments and alternative treatments that compliment each other. It crucial that patients avail themselves of these resources to better understand their condition and treatment options.

When I was initially diagnosed and went through the series of testing that brought me to a place where my doctor told me I needed a mastectomy, I had already known what I was going to do, but I pursued the following dialogue with my breast surgeon: The conversation went like this: “I understand what you are telling me medically, but I want to ask you this a question…as a woman, what would you do if you were in my shoes?” Her answer was quite poignant and exactly the choice I had made before I even posed the question to her. Her response was: “I would probably have a double mastectomy.” I told her that is what my choice in my gut was and where I wanted to go with this. Thank God I went with my gut, because after surgery they found more tumors in one breast and pre-cancer in the other breast! Based on my experience and my own research, I knew this was the right choice for me. I was my own best advocate!

I just had an experience with a client where she felt like her doctors were ignoring her concerns and putting off her surgery for more than a month because of their scheduling. She told me she felt victim to and at the control of her doctors. Having a relationship with your doctor is like having a relationship with any other individual in your life, it has to be reciprocal and it has to feel right. She called me to check in a few days later and told me that based on our last coaching session, she had seen other doctors and was now looking at different options and resources. She took additional action to reach out to other doctors who understood the urgency of her disease and she was now having surgery in just a few days instead of waiting and delaying the disease growing in her body for an additional 30 days as her original doctors had advised her. She took a proactive role in her health based on her own research and knowing that she had other options!

Our medical doctors are experts who are focused on medicine and getting us healthy. They treat us depending on what we tell them and if we don’t take the time to dig deep, do our own research, ask questions and tell them all of our concerns (even if we feel like we are taking their time up or being “annoying”) it is something we have to do! If we don’t ask questions our doctors are only going to act based on what we are telling them. If we don’t have the right relationship with our doctors it may affect our energy level and how we move forward in our action.

The bottom line here is that no matter what your diagnosis or prognosis is, we have choices! We have options, resources, the right to second opinions, we have the right to ask questions and a choice on what energy level we are going to live in each day living our lives each day moving forward.