Tag Archive for: treatment

Understanding Your Role as a CAR T-Cell Therapy Care Partner

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 Why is a care partner essential during the CAR T-cell therapy process? This animated video explains the role of care partner when supporting someone undergoing CAR T-cell therapy and provides advice and tips for their own self-care.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

CAR T-Cell Therapy Care Partners | Understanding Your Role in Patient Care and Recovery

 An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

 Expert Advice for CAR T-Cell Therapy Care Partners

Expert Advice for CAR T-Cell Therapy Care Partners 

Transcript:

As a care partner, you play an essential role in supporting your loved one through the CAR T-cell therapy process. Your responsibilities will go beyond emotional support into active caregiving, medical monitoring, and close communication with the healthcare team.  

It’s important to gather as much information as possible early on in the process.  

Start with these questions: 

  • Who are the essential members of my loved one’s healthcare team?
    • CAR-T therapy involves a multi-disciplinary team and you should know the members, who may include hematologists, oncologists, nurse practitioners, pharmacists, and social workers.  
  • What are my responsibilities as a care partner?
    • Your role is an essential part of your loved one’s recovery and may include administering medication, monitoring for side effects, and keeping track of medical appointments. 
  • What can I expect during the CAR-T therapy process?
    • Understanding how the process works and what your loved one will experience will help you prepare for CAR-T therapy and the recovery period.  
  • What can I expect when my loved one leaves the hospital?
    • When your loved one comes home, you need to understand how to assist them, what side effects to watch for, and when to call for help.  
  • Who do I contact in case of an emergency?
    • Know the 24/7 contact information for members of your healthcare team. Some side effects can escalate quickly, and fast action may be needed. 

And while you’re busy supporting your loved one, it’s crucial to recognize your own needs. Care partner burnout is real, and to provide the best care, you must stay mentally and physically healthy.  

So, what can you do? 

First, recognize when you’re stressed. Signs of burnout can include fatigue, irritability, or feeling overwhelmed. Don’t try to handle everything on your own. Ask family members for help and talk with friends – sharing your challenges can reduce stress.  

Remember to practice self-compassion – it can help you cope during stressful times and to manage unrealistic expectations that you may place on yourself. 

  • Next, arrange for help. If caring for your loved one becomes overwhelming, consider hiring professional in-home caregivers, even temporarily, to give yourself a break. 
  • Make self-care a priority. When time allows, take advantage of opportunities to recharge. Self-care is not selfish – it’s essential for your health AND for success in supporting your loved one. 
  • Finally, you don’t have to go through this alone. Ask about support. Many cancer centers offer resources and support groups specifically for care partners – you can start by talking to a social worker or a mental health professional about your needs. 

And, advocacy organizations like The Leukemia & Lymphoma Society (LLS), American Cancer Society, and Caregiver Action Network provide assistance for care partners, including helplines, counseling, and community connections. 

For more care partner tools and resources, visit powerfulpatients.org. 

Why Should Endometrial Cancer Patients Engage in Their Care?

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What role do patients play in their endometrial cancer care and treatment decisions? Gynecological cancer expert Dr. Nita Karnik Lee explains the shared decision-making process and discusses the benefits of engaging in conversations with your healthcare team. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from Evolve Endometrial Cancer
 

Related Programs:

What Are Common Endometrial Cancer Health Disparities?

What Are Common Endometrial Cancer Health Disparities?

 Tools for Improving Access to Quality Endometrial Cancer Care

Tools for Improving Access to Quality Endometrial Cancer Care

 Advances in Endometrial Cancer Treatment and Research

Advances in Endometrial Cancer Screening and Detection

Transcript:

Katherine Banwell:  

Would you define shared decision-making, Dr. Lee? Tell us why it’s so important for patients to engage in their care.  

Dr. Nita Karnik Lee:  

Shared decision-making is sort of the idea model, right? It’s this idea that we want to, as physicians, know what values my patient has, and I want to be able to impart information that I think will be helpful for them to make a decision. Sometimes the decisions are do I want to do surgery or not? Sometimes the decision are do I want to do chemo or continue chemotherapy? Those are very different decisions, and shared decision-making is a way of saying we’re going to have some kind of communication back and forth where I’m like, hey, this is what I think is happening. These are the choices that you have.  

And you telling me, okay, these are the things that I’m worried about. These are the things that align with what I want to do. I think it’s really important, though, to not have physicians put it out as, oh, well, I just let the patient decide, right, because just like when my car breaks down or my lights don’t work at my house and I get an electrician to come and see, I have no idea what they’re talking about.  

I have no concept. I really rely on them to say, well, I don’t know what kind of wire for you to use in my house. I have no idea. So, we really want to be careful that shared decision-making doesn’t turn into a menu of choices that we, the physicians, are actually giving up their role in advising if that makes sense. A lot of shared decision-making is in that relationship of trust and saying I really get this. I get what you’re telling me.  

I have patients, for example, who are on chemotherapy for a recurring disease, either uterine or ovarian cancer, and a lot of times you’re making these decisions of, okay, quality of life, like, what are events that are coming up? Sometimes they don’t always align with what I think is best, but if somebody tells me, you know what, I’m going to do these three cycles, but my son’s wedding is coming up. And I really need a month off beforehand, that aligns for me because I think that’s important, but maybe it’s not the standard.  

And so, kind of really knowing your patient, from my perspective, and also, as patients, not being afraid to say these are my values, and this is what’s really important to me. People will hear it, and they’ll feel better equipped to be able to help you guide those decisions with the caveat that sometimes I’ll say, look, you know what, I’m pretty worried about you. Yes, let’s give you a month off before, but let’s scan right after the wedding and see what’s going on.  

And then we can decide what we’re going to do after that. Or holiday times are oftentimes where I really give people sometimes a break. If they’ve been on chronic chemotherapy, sometimes this is a time where I’d say I’m really worried. I don’t think we can give you a break. People will tell me I know you’re worried about me, but this is really important. And we work together on it. I think it’s knowing the medical background, and then making sure you know what your patient wants, from that perspective.  

Katherine Banwell:  

And having an open line of communication. 

Dr. Nita Karnik Lee:  

Yes. 

Katherine Banwell:  

That’s what you’re saying. 

Dr. Nita Karnik Lee:  

Exactly. I think you hit it on the nail. Having an open line of communication, and not feeling that you need to hold back from that. I think it’s much easier for our whole team. I work really closely with our nurses and PAs, and sometimes one of the nurses will be like, you know what, she really wants to talk to you about this. Sometimes it’ll be maybe not even talking to your doctor first, but talking to the person on your team you feel closest to, to say I’ve been really thinking about this. I know Dr. Lee wants to do this, but this doesn’t align with my kid’s graduation, or my grandkid’s something, and those things are really important to get that open.

Tools for Improving Access to Quality Endometrial Cancer Care

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What proactive steps can endometrial patients take to access the best care? Gynecological cancer expert Dr. Nita Karnik Lee walks through self-advocacy steps that may encourage improved patient outcomes. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from Evolve Endometrial Cancer
 

Related Programs:

What Are Common Endometrial Cancer Health Disparities?

What Are Common Endometrial Cancer Health Disparities?

 Why Should Endometrial Cancer Patients Engage in Their Care?

Why Should Endometrial Cancer Patients Engage in Their Care?

 Advances in Endometrial Cancer Treatment and Research

Advances in Endometrial Cancer Screening and Detection

Transcript:

Katherine Banwell:  

How is the medical community dealing with these disparities? How are they handling them? 

Dr. Nita Karnik Lee:  

You know, I think a lot of it is, again, sort of educating. You have to think about you want patient education. You want provider education. Sometimes I have patients who come to me and say, you know what, I reported these symptoms to my doctor, and they said it was nothing, or they told me it was a UTI. So, we often think about, when we’re making an intervention, we want to make sure that providers who are seeing patients first-line are also hearing about this as in their differential diagnosis, and that patients have enough knowledge that they feel really comfortable advocating for themselves. Many of our patients who are cancer survivors will tell us. 

Or when they speak on their own in different ways or say listen to your body, make sure you’re advocating for yourself, and if somebody doesn’t listen, find another doctor. I hate to say it, but you just have to know that those are things that happen. I think structurally, as providers, we have to be really aware of our own biases that we bring to patients and their families and our own health system.  

How are we set up to help people more? I think a lot of it is quick access to care. And so, I think that’s where we try to make some differences in terms of both policy and policy within a health system, and then larger policy that’s kind of maybe more not just one hospital, but statewide or nationwide.  

Katherine Banwell:  

You mentioned advocating for oneself and how important that is. If a patient feels like they’re not receiving good care or they’re being treated unfairly, what steps should they take to access better overall care? 

Dr. Nita Karnik Lee:  

Well, I mean, a little bit of it’s complicated, because so many of us are kind of limited by our insurance. We don’t always have the ability to do all the things. It can be scary, and it can be intimidating. I think one of the things that could be very helpful is to prepare yourself with a list of questions, to be like these are the questions. These are the things that I’m not feeling are being heard, and potentially even getting a second opinion. You can say this in a way that you can sort of feel like your doctor doesn’t need to feel bad. 

I even think second opinions, for me, I’m all for them. More information is better. That’s a way of positing it and saying, look, I know we’ve gone through these symptoms. These are my concerns. I don’t think they’re being addressed, and I would really like to get another opinion. Physicians are often like, yes, get another opinion. And so, those are ways that I think people can find the right fit for the physician that they want. 

What Are Common Endometrial Cancer Health Disparities?

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How can a patient’s individual circumstances impact the quality of their endometrial cancer care? Gynecological cancer expert Dr. Nita Karnik Lee reviews common health disparities and their impact on patient outcomes. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from Evolve Endometrial Cancer
 

Related Programs:

Tools for Improving Access to Quality Endometrial Cancer Care

Tools for Improving Access to Quality Endometrial Cancer Care

 Why Should Endometrial Cancer Patients Engage in Their Care?

Why Should Endometrial Cancer Patients Engage in Their Care?

 Current Endometrial Cancer Treatment Approaches

Current Endometrial Cancer Treatment Approaches

Transcript:

Katherine Banwell:  

Dr. Lee, disparities in healthcare can impact a patient’s experiences and their outcomes. What are common health disparities that gynecological cancer patients can face? 

Dr. Nita Karnik Lee:  

Yeah, this is really – I always think about the cancer care continuum. This is the model that I think of. I think of what is risk reduction and prevention? What is early diagnosis and getting to the right person to take care of your cancer? Did you get the right treatment? And then did you get the right follow-up? 

Disparities can happen along those ways, and some of it can be related to access to care. Access, oftentimes, people just think it’s insurance, but it’s not. It is insurance. That’s a big part of it. We know that our states that don’t have as much insurance support for our patients who are poorer actually do worse. There’s worse survival. 

But I think it’s also does the person feel comfortable with the healthcare system? Are they connected with their doctor? Is it a language issue? Is it a bias issue that they’ve felt that they haven’t been comfortable in their health system before? All of those things can create these roadblocks along that whole cancer care continuum. Access really means more than just like it has to be acceptable. It has to be available. 

It has to be something that the person can feel comfortable with when they make a decision about treatment. That’s where we see things like people say, oh, that person declined surgery. I’m like, but did they really decline? Why did they decline? Did anyone get into what they were worried about, what their experience had been? So, we can’t just blame the patient and say, oh, they just didn’t want treatment. It’s really a complex area. The biggest disparity we see is in uterine cancer. 

So, Black women are much more likely to die of uterine cancer at any stage, especially older Black women. Some of this is access, but some of this is that there are actually differences in biology, and it’s kind of tricky because nobody thinks there is. Race is really a construct, right? It’s not really a biological difference, but there are differences in the types of more aggressive cancers that Black women get, and there are a lot of different reasons that people have started to look at that, both genetically, but also environmental influences, stress influences. 

So, the biggest disparity is probably in the uterine cancer, but unfortunately, we still see disparities by race in ovarian and cervical cancer. We also see disparities by income and insurance type. And so, I think those are kinds of things that are just the larger picture. 

What Are the Symptoms of Ovarian Cancer?

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What should women know about ovarian cancer symptoms? Gynecological cancer expert Dr. Nita Karnik Lee reviews potential symptoms of ovarian cancer and emphasizes the importance of regular communication with the healthcare team. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from DETECT Ovarian Cancer

Related Resources:

How Is Ovarian Cancer Detected?

How Is Ovarian Cancer Detected?

 How Does Biomarker Testing Impact Ovarian Cancer Screening and Detection?

How Does Biomarker Testing Impact Ovarian Cancer Screening and Detection?

 Patient Empowerment | Advice From an Ovarian Cancer Expert

Patient Empowerment | Advice From an Ovarian Cancer Expert

Transcript:

Katherine Banwell: 

What symptoms should people look for? 

Dr. Nita Karnik Lee:  

So, this is a very important point. I think the symptoms that people should look for are symptoms that are in the bowel and bladder function area that are different or new to them. This can be changes in urinary frequency, or urgency, or sense of pressure, or not having as much bladder capacity, like having to run to the bathroom more frequently.   

Sometimes it can be changes in bowel movements, such as constipation, or not feeling like they’re emptying, or it can be changes in appetite, where people feel full really quickly, where they eat a small amount, and all of the sudden, they just feel like they can’t eat anymore. Obviously, worsening symptoms such as nausea or even throwing up, that’s a little more extreme, but that can happen.  

Again, if you’ve had these symptoms for years every time you eat a certain food or something like that, those are probably not new, and that probably is not going to be something cancerous. But if there’s something that’s new or different, the symptom seems to stick out to you that this isn’t your usual routine, and it seems persistent over two or three weeks, and it’s happening almost daily, or at least more frequently than you would expect, then I think that warrants telling your doctor about it, and really advocating, and knowing that not everyone is going to have ovarian cancer, which is good, but knowing that they should do the workup for this just to rule it out.  

Katherine Banwell:  

How reliable are PAP smears in detecting ovarian cancer? 

Dr. Nita Karnik Lee:  

PAP smears do not detect ovarian cancer at all. So, people with ovarian cancer have normal PAP smears. It would be very unusual to have an abnormal PAP smear due to ovarian cancer. A lot of the misconception is that patients have said, “Well, I had my annual exam last year. I got my PAP smear every three to five years. That seems negative. So, why did I get this cancer?” But the two are completely unrelated. 

How Does Biomarker Testing Impact Ovarian Cancer Screening and Detection?

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What role does biomarker testing play in ovarian cancer detection? Dr. Nita Karnik Lee reviews genetic mutations related to ovarian cancer and discusses key steps women with a family history of the disease should consider. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from DETECT Ovarian Cancer

Related Resources:

How Is Ovarian Cancer Detected?

How Is Ovarian Cancer Detected?

 What Are the Symptoms of Ovarian Cancer?

What Are the Symptoms of Ovarian Cancer?

 Patient Empowerment | Advice From an Ovarian Cancer Expert

Patient Empowerment | Advice From an Ovarian Cancer Expert

Transcript:

Katherine Banwell:  

What is the role of genetic and biomarker testing as screening tools? 

Dr. Nita Karnik Lee:  

Genetic testing is very important. When we get, for example, and I’ll kind of back up a little bit to say if somebody gets diagnosed with ovarian cancer, that is actually everyone who has a diagnosis of ovarian, fallopian tube, or peritoneal, because those are all sort of the same cancer, should get genetic testing to see if there’s a hereditary predisposition in their genetics that are passed on.  

That’s called germline testing. And those patients, and 20 percent of them, may actually have a hereditary condition that could be passed on. Then that’s where you can see how important it is. If I have somebody, and her children now know that the person has the BRCA gene, for example, then it’s really important for her children, men and women, to get screened, because then they may be able to do preventive measures, such as preventive surgery, preventive medications, or more frequent screening, to be able to prevent cancer from happening. 

Katherine Banwell:  

Okay. What genetic mutations are associated with ovarian cancer? 

Dr. Nita Karnik Lee:  

The ones that are most common that you hear about are something called BRCA, or B-R-C-A, 1 and 2. Those make up the majority of those mutations. There are some other less common ones such as Lynch syndrome, which is more associated with colon and endometrial cancer but can have about 10 percent to 12 percent of patients related to ovarian cancer as well.   

Nowadays, when we do genetic testing, we do a panel, so there are like 35 genes that are tested. There are a whole lot of different genes that can have an association with ovarian cancer, but the BRCA genes are the ones that most people hear about.   

Katherine Banwell:  

Should women with a family history of ovarian cancer take extra precautions? 

Dr. Nita Karnik Lee:  

That’s a very good question. So, if you have a family history, it’s probably important to talk to your doctor and to maybe even see somebody in cancer genetics who can draw out a family tree for you to see how high is this risk? If people have an ovarian cancer patient, one – or a breast cancer patient – some of it also matters what was the age that that patient got diagnosed. Some genetic mutation syndromes, actually the patient gets diagnosed much younger than average.  

The average age for ovarian cancer is about 60. Some patients will get it. For some genetic mutations, it’s still about that range. So, I think it’s important because even if you don’t have a genetic mutation, having a family member with ovarian cancer slightly increases your risk. 

Knowing those symptoms, knowing that your history will help your doctor dictate how quickly are they thinking about something else is really important, ultrasound, but we know that ultrasound is not perfect. 

Current Endometrial Cancer Treatment Approaches

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What are the common treatment approaches for endometrial cancer? Dr. Hinchcliff explains that options typically include surgery, radiation, and chemotherapy, or a combination.

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

 
See More from Evolve Endometrial Cancer
 

Related Programs:

Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?

Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?

 Endometrial Cancer | What Is Personalized Medicine?

Endometrial Cancer | What Is Personalized Medicine? 

Transcript:

Katherine Banwell:  

Dr. Hinchcliff, what are the common approaches for endometrial cancer? 

Dr. Emily Hinchcliff:  

So, endometrial cancer – when I think about any cancer treatment, there are sort of three big buckets of treatment. There’s surgical management, radiation, and then, chemotherapy or some form of systemic treatment, meaning treatment that goes into the vessels, that’s going to spread throughout your body, and endometrial cancer can be treated by, actually, all three of those, or combinations of the three of those, depending on that cancer stage and depending on that cancer subtype. 

And so, what I would say is for endometrial cancer that is confined to the uterus, generally speaking, surgery is your upfront first line of defense, and then, once you understand – after taking that uterus out – what the risk level is, your doctor may recommend chemotherapy after, they may recommend radiation after, and that sort of is dependent on what they see under the microscope. 

But for cancer that’s thought to be confined to the uterus, it’s surgery, and then maybe additional treatment afterwards. For endometrial cancer that has spread outside the uterus already to the lymph nodes, elsewhere in the abdomen, or more distant, then we start to think about that systemic therapy, and that can include chemotherapy, which works by killing rapidly dividing cells, as well as what I mentioned before, which is immunotherapy. 

Immunotherapy is medicine that kind of takes your own immune system and tries to rev up your immune system to better fight the cancer, because the immune system is predisposed to recognizing abnormal things, and cancer is inherently abnormal. But cancer is smart and develops ways to cloak itself, so the immunotherapy takes that cloak off and revs up the immune system to try and get an immune response. 

Endometrial Cancer | What Is Personalized Medicine?

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What are the common treatment approaches for endometrial cancer? Dr. Hinchcliff explains that options typically include surgery, radiation, and chemotherapy, or a combination.  

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

Download Resource Guide

See More from INSIST! Endometrial Cancer

Related Resources:

Essential Endometrial Cancer Testing

Essential Endometrial Cancer Testing

 What Questions Should Patients Ask About Endometrial Cancer Testing?What Questions Should Patients Ask About Endometrial Cancer Testing? Endometrial Cancer Biomarkers | Impact on Prognosis and Treatment

Endometrial Cancer Biomarkers | Impact on Prognosis and Treatment

Transcript: 

Katherine Banwell:  

How would you define personalized medicine?  

Dr. Emily Hinchcliff:  

So, personalized medicine I think is a big umbrella term that is sort of a buzzword in cancer right now – in a good way – but I think that it is important to understand how it affects each different cancer type. So, personalized medicine, what we mean as physicians when we say that is we are trying to better tailor treatments to the individual patient and the individual cancer.  

So, whether that is the cancer subtype, treating endometrial cancer with endometrial-cancer-specific drugs rather than drugs that have been used to treat ovarian cancer, and kidney cancer, and prostate cancer, so, using drugs that are potentially really good for your tumor type, but also using medicines that might best treat your individual tumor based on the genetics and the molecular features inside your tumor. 

One of the ways that I’ll explain it to patients is that your tumor is sort of like base camp, and it depends on certain supply chains for oxygen and nutrients to grow, and some supply chains are common to all cancer types, so if we block that supply chain, that drug might work on any different kind of cancer. But some supply chains are really specific to a particular patient and a particular tumor, and so, if we have a drug that blocks that supply chain, it might work in that particular patient, but might not work in a patient that has a very, very similar cancer type, and that’s really where personalized medicine can be a huge win. It allows us to say, “This drug would work really well for you when it might not work really well for the patient next door.”  

Katherine Banwell:  

Yeah. So, I think what used to happen is everyone with a specific cancer was painted with a broad brush. 

Dr. Emily Hinchcliff:  

Correct. 

Katherine Banwell:  

And now, we’re able to hone in on what might work for one person.  

Dr. Emily Hinchcliff:  

Yeah. I think that certainly, those broad brushes, they worked for a reason, and they still are in our arsenal and our toolbox, and so, it doesn’t mean those brushes are bad, but it does mean that now, hopefully, we can paint a little bit more within the lines. We can be a little bit more nuanced with our approach. 

Comprender su Papel en su Cuidado del Cáncer de Ovario Guía

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Descargar Guía

PEN-214_Ovarian_Collab_DownloadableGuideESP

Descargar Guía

See More from COLLABORATE Ovarian Cancer

 

Comprender su Papel en su Cuidado del Cáncer de Ovario

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¿Qué medidas pueden tomar los pacientes de cáncer de ovario para ser proactivos en su cuidado? Este vídeo animado comparte consejos para hablar, participar en decisiones y consejos para aprender más sobre el cáncer de ovario.

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See More from COLLABORATE Ovarian Cancer

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Becoming Empowered and [ACT]IVATED After An Ovarian Cancer Diagnosis 

 Understanding Your Role in Your Ovarian Cancer Care

Understanding Your Role in Your Ovarian Cancer Care

 Optimizing Ovarian Cancer Care: Genetic Testing and Treatment Approaches

Optimizing Ovarian Cancer Care: Genetic Testing and Treatment Approaches

Transcript:

Dra. Thompson:

¡Hola! Soy la Dra. Thompson, y me especializo en el tratamiento de los cánceres ginecológicos, que son un grupo de cánceres que afectan los órganos reproductivos de las mujeres.  

Hoy, estoy aquí con Sarah, quien vive con cáncer de ovario. 

Sarah:

¡Hola a todos! En este video, la Dra. Thompson y yo hablaremos sobre el importante papel que los pacientes desempeñan en su cuidado y compartiremos los pasos que pueden tomar para sentirse seguros al tomar decisiones CON su equipo médico.  

Dra. Thompson:

Sarah y yo sabemos de primera mano que esto comienza con encontrar un equipo médico que los apoye. Sentirse a gusto al hablar sobre sus pensamientos y preocupaciones es crucial, porque compartir su opinión puede influir en su atención general.  

Sarah:

Totalmente. Cuando me diagnosticaron por primera vez, me sentía ansiosa y abrumada, pero la Dra. Thompson me animó a hacer preguntas, lo que me ayudó a sentirme más en control.   

También descubrí que buscar atención con un especialista marcó una gran diferencia. Dra. Thompson, ¿puede hablar sobre por qué eso es tan importante? 

Dra. Thompson:

Claro, Sarah. Los especialistas, como los oncólogos ginecológicos, tienen la experiencia para ofrecer los tratamientos y recomendaciones más actualizadas para el cáncer de ovario. Pueden brindar un enfoque más personalizado a su cuidado, lo que puede ayudar a manejar la enfermedad de manera más efectiva. 

Sarah:

Exactamente—colaborar con un especialista aumentó mi confianza en las decisiones sobre mi tratamiento. También me hizo darme cuenta de la importancia de aprender sobre mi cáncer, para poder participar en las conversaciones sobre mi cuidado. 

Dra. Thompson:

Así es, Sarah. Educarse a uno mismo es otro paso clave para sentirse empoderado. Cuando comprende más sobre su enfermedad, su diagnóstico y las terapias disponibles, le ayuda a tomar las decisiones que son mejores para usted.  

Y para ayudarle a aprender más sobre su cáncer de ovario, aquí está mi consejo sobre por dónde empezar:  

  1. Conozca su diagnóstico específico: Pregúntele a su médico sobre el tipo y la etapa de su cáncer de ovario. Esta información guiará sus opciones de tratamiento. 
  2. Además, asegúrese de haber realizado pruebas de biomarcadores, incluidas pruebas genéticas: Los resultados de las pruebas ayudarán a usted y a su equipo médico a comprender mejor su diagnóstico y pueden afectar la terapia.  
  3. Priorice su salud mental: Manejar un diagnóstico de cáncer puede ser emocionalmente desafiante. Busque apoyo de profesionales de la salud mental o grupos de apoyo para ayudar a sobrellevar la ansiedad y el estrés. 

Sarah:

Estoy completamente de acuerdo, Dra. Thompson. También hay muchos recursos disponibles que proporcionan información valiosa. Aquí hay algunos recursos confiables en los que puede confiar:  

Dra. Thompson, ¿qué consejo tiene para aprovechar al máximo el tiempo con su médico?   

Dra. Thompson: Buena pregunta, Sarah. Aquí algunos consejos: 

  • Primero, esté preparada: Anote cualquier pregunta o inquietud que tenga antes de su visita.  
  • Luego, tome notas: Lleve un cuaderno o algo para registrar los detalles durante su cita. 
  • También, lleve a un amigo o familiar: Tener a alguien con usted puede brindarle apoyo emocional y ayudarle a recordar la información compartida. 
  • Finalmente, discuta sus objetivos: Sea clara acerca de sus necesidades de tratamiento y cualquier inquietud relacionada con su estilo de vida. No dude en hablar durante la visita y asegúrese de que todas sus preguntas hayan sido respondidas.  

Sarah:

Esos son consejos muy útiles. Tener a mi hermana conmigo durante las citas fue reconfortante, y a menudo pensaba en preguntas que yo no había considerado.  

Dra. Thompson:

Eso es un excelente punto, Sarah. Recuerde, usted es el centro de su equipo de atención. Manténgase involucrada y nunca dude en comunicarse si tiene preguntas o no entiende algo. 

No olvide descargar la guía que acompaña a este video. Y para obtener más información sobre el cáncer de ovario, visite powerfulpatients.org. 

Understanding Your Role in Your Ovarian Cancer Care Resource Guide

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Understanding Your Role in Your Ovarian Cancer Care

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What steps can ovarian cancer patients take to be proactive in their care? This animated video shares tips and advice for speaking up, engaging in decisions and tips for learning more about ovarian cancer.

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Related Resources:

Becoming Empowered and [ACT]IVATED After An Ovarian Cancer Diagnosis 

 Comprender su Papel en su Cuidado del Cáncer de Ovario

Comprender su Papel en su Cuidado del Cáncer de Ovario

 Optimizing Ovarian Cancer Care: Genetic Testing and Treatment Approaches

Optimizing Ovarian Cancer Care: Genetic Testing and Treatment Approaches

Transcript:

Dr. Thompson:

Hi! I’m Dr. Thompson, and I specialize in treating gynecologic cancers, which are a group of cancers that impact a woman’s reproductive organs.  

Today, I’m here with Sarah, who’s living with ovarian cancer. 

Sarah:

Hi everyone! In this video, Dr. Thompson and I will discuss the important role that patients play in their care and will share steps you can take to feel confident when making decisions WITH your healthcare team. 

Dr. Thompson:

And Sarah and I know firsthand that this starts with finding a healthcare team that supports you. Feeling at ease when discussing your thoughts and concerns is crucial, because sharing your input can impact your overall care.  

Sarah:

Absolutely. When I was first diagnosed, I felt anxious and overwhelmed, but Dr. Thompson encouraged me to ask questions, which helped me feel more in control.  

I also found that seeking care from a specialist made a big difference. Dr. Thompson, can you talk about why that’s so important? 

Dr. Thompson:

Of course, Sarah. Specialists, like gynecologic oncologists, have the expertise to provide the most up-to-date treatments and recommendations for ovarian cancer. They can offer a more personalized approach to your care, which can help manage the disease more effectively. 

Sarah:

Exactly—collaborating with a specialist boosted my confidence in my treatment choices. It also made me realize the importance of learning about my cancer, so I could participate in conversations about my care. 

Dr. Thompson:

Absolutely, Sarah. Educating yourself is another key step in feeling empowered. When you understand more about your disease, your diagnosis, and available therapies, it helps you make decisions that are best for you.  

And to help you learn more about your ovarian cancer, here’s my advice for where to start:  

  1. Learn about your specific diagnosis: Ask your doctor about the type and stage of your ovarian cancer. This information will guide your treatment options. 
  2. Additionally, ensure you have had biomarker testing, including genetic testing: The test results will help you and your care team better understand your diagnosis and may affect therapy.  
  3. Prioritize your mental health: Managing a cancer diagnosis can be emotionally challenging. Seek support from mental health professionals or support groups to help cope with anxiety and stress. 

Sarah: I completely agree, Dr. Thompson. And, there are also plenty of resources available which provide valuable information. Here are few reputable resources you can rely on: 

Dr. Thompson, what advice do you have for getting the most out of your time with your provider? 

Dr. Thompson: Great question, Sarah. Here are a few tips: 

  • First, be prepared: Write down any questions or concerns you have before your visit.  
  • Then, take notes: Bring a notebook or something to record details during your appointment. 
  • Also, bring a friend or family member: Having someone with you can provide emotional support and help you to remember the information shared. 
  • Finally, discuss your goals: Be clear about your treatment needs and any lifestyle concerns you may have. Don’t hesitate to speak up during the visit and to ensure all of your questions have been answered.  

Sarah:

Those are really helpful tips. Having my sister with me during appointments was comforting, and she often thought of questions I hadn’t considered. 

Dr. Thompson:

That’s a great point, Sarah. Remember, you are the center of your care team. Stay engaged and never hesitate to reach out if you have questions or don’t understand something. 

Don’t forget to download the guide that accompanies this video. And for more information about ovarian cancer, visit powerfulpatients.org. 

Collaborate | What You Should Know About CLL Clinical Trials

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What role do clinical trials play in treating chronic lymphocytic leukemia (CLL)? This animated video explains clinical trials, reviews the benefits of patient participation, and discusses questions to ask your healthcare team.

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Related Resources:

Which Treatment is Right for YOUR CLL

Collaborate | Which Treatment is Right for YOUR CLL? 

 Collaborate | Understanding Your Role in Your CLL Care

Collaborate | Understanding Your Role in Your CLL Care

 How Is CLL Treated?Collaborate | How Is CLL Treated?

Transcript:

Dr. Johnson:

Hello everyone! I’m Dr. Johnson, a physician specializing in blood cancers. Welcome back to the CLL Collaborate series from the Patient Empowerment Network.  

Joseph:

And I’m Joseph, Dr. Johnson’s patient. Today, we’ll be discussing an important topic: CLL clinical trials. We will talk about what clinical trials are, their role in advancing research, and how patients may benefit from participation. 

Dr. Johnson:

Let’s get started. Clinical trials are research studies that involve patients, and the goal is to find better ways to prevent, diagnose, or treat diseases. They are essential for advancing medical knowledge and for bringing new treatments to patients. 

Joseph:

Thanks, Dr. Johnson. And how exactly do clinical trials move research forward? 

Dr. Johnson:

Good question! Clinical trials provide critical data on the safety and effectiveness of new treatments. They also help researchers understand how different therapies work in diverse groups of people and ensure treatments work well and do not cause harm to humans before they become widely available.  

Early phase clinical trials are used to determine the treatment’s safety, while the latter phases investigate how effective the therapy is in managing a specific condition.  

Joseph:

And how can CLL patients benefit from participating in clinical trials?  

Dr. Johnson:

Well, Joseph, participating in a clinical trial can provide access to new options that are not yet available to the public. Patients also receive high-quality care from the clinical trial healthcare team, as they are very closely monitored throughout the study. And participation contributes to the advancement of medical research, potentially benefiting future patients. 

Joseph:

That makes sense. When we reviewed my treatment options, you suggested several trials that could be a good fit for me, and we discussed the pros and cons. So, what should patients ask their team before joining a clinical trial?  

Dr. Johnson:

Let’s walk through several important questions to ask your healthcare team: 

  • What trials do you recommend for me and why? 
  • What is the purpose of the trial? 
  • What treatments and tests will I receive during the trial? 
  • What are the potential risks and benefits? 
  • Are there resources to help me learn more about the trial? 
  • How might this trial affect my daily life? 
  • Will I need to travel for treatment or tests? 
  • Finally, how long will the trial last, and what happens after it ends? 

Discuss these questions with your healthcare team to determine if a clinical trial is the right option for you. 

I also want to note that clinical trials are voluntary, and patients can decide to leave a trial at any time. The informed consent process educates participants about all potential risks and benefits and reviews their rights. Remember, you are at the center of your care.  

Joseph, can you share advice for patients as they learn more about trials and advocate for better care? 

Joseph:

I’d be happy to! Here are some additional steps to help you feel confident when considering clinical trials: 

  • First, educate yourself: Understand the basics of clinical trials and how they work. It’s important to gather your information using credible resources—like the Patient Empowerment Network and The Leukemia & Lymphoma Society. 
  • Next, write down questions: Prepare a list of questions to ask your healthcare team. And download the guide that accompanies this video to review the questions Dr. Johnson suggested.   
  • Additionally, discuss goals: Be clear about your treatment goals and ensure you’ve had all of your questions answered before making a decision. 
  • Bring support: Have a loved one join you for appointments or discussions to help take notes and to provide support.  
  • Finally, stay informed: Keep up with the latest research and advancements in CLL treatments. As I mentioned, PEN and the LLS are great sources of information. 

Dr. Johnson:

These are excellent tips, Joseph! Thank you everyone for joining us. For more information and valuable resources, visit powerfulpatients.org/CLL.  

Collaborate | What You Should Know About CLL Clinical Trials Resource Guide

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Lo que Debes Saber Sobre los Ensayos Clínicos de CLL Guía

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