Tag Archive for: empowered patient

Cancer Patient Profile: Linda Ryan

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As a survivor of thyroid cancer, adenocarcinoma in situ of the cervix, and seven cancer recurrences, our PEN Gynecological Cancer Empowerment Lead Linda Ryan has learned a lot about cancer treatment and about life. She’s discovered the value of self-education, clinical trials, and friendships among many other things. 

Linda’s first cancer experience occurred in 2002 with her thyroid cancer diagnosis. She received successful treatment and then two years later, as a result of a routine pap exam, she was diagnosed with stage 0 adenocarcinoma in situ of the cervix. Linda had a hysterectomy and no other treatment. And then seven years later, she found a lump on her neck that her doctors diagnosed as thyroid cancer recurrence. She had a radical neck dissection scheduled but found some lymph nodes in her groin area ahead of her surgery date. The sense of urgency for treatment increased considerably after the physician assistant knew Linda didn’t have thyroid cancer.

Linda learned that the standard of care option had a 15 percent response rate for her diagnosis, and the clinical trial was seeing  a 31 percent response rate. She chose the clinical trial since it increased her chances by 16 percent. She traveled from Florida to Houston for treatment, and she did that for eight rounds every three weeks and then had no evidence of disease.

Clinical trial participation wasn’t something that Linda would have known to ask about initially, but she’s participated in a few trials. Patients can find all clinical trials on clinicaltrials.gov. “It’s important for patients to ask their doctors about trials and to do research on trials, knowing that they may not be eligible for certain ones if they don’t have certain cancer mutations or other treatment factors. Trials are available to patients in community settings and not just teaching institutions. I feel like I’m using them and getting the benefit of kind of cutting-edge medicine that isn’t available. So I think it’s important for people to seek out trials and educate themselves if there is something available for them.”

One key piece of advice from Linda is don’t give the cancer any more power than it deserves. “So I think it’s important to always remember you’re in charge, and you’re more powerful than the cancer. The words you use to talk about your cancer are very important. So knowing that when I exercise, I feel stronger than the cancer, even if I’m not lifting weights, but I’m moving.” She also recommends using mental exercises or spiritual practice as a way to keep your personal power during your cancer journey and to keep excessive anxiety at bay. 

At the beginning of her cancer journey, Linda asked her doctor if she could keep running. Her doctor advised her to keep moving as much as she could. A group of Linda’s friends decided to host a 5K in her honor. “The goal was just to get our community moving and to hear that message of the importance of exercise. And it gave me a lot of mental strength.”

Reflecting back on the initial 5K event, Linda and her friends set out with specific goals for the event. They wanted the community to hear their message and wanted 300 people to participate in the first race. They were simply overwhelmed with joy when 900 people registered. They only needed 300 people to register to cover the expenses. The large event turnout meant that they had plenty of money left to donate. 

And we had a small amount of money at that time, but we thought, “Well, we can do something good with this money.” And so we created a 501(c)(3) charity, and it became an annual event and an event for our small town in Florida to land, and Central Florida really embraced it. Fast forward to 2020, right before the pandemic we had 6,000 participants. It was just us five women running it. We all had different talents and decided it was time for someone else to take it over.”

Up until the time that the new organization took over in 2023, Linda’s efforts with her friends gave a little over $2 million. “So many good things came out of it, we’ve touched so many lives of people living with a cancer diagnosis and going through that process. But in addition to what the beneficiary money went to, the event united our community.”

While Linda was enduring her cancer journey, her whole town was looped in on what was happening with her. “When I would have a recurrence, I’d be in the grocery store in tears, because someone would know it was just like everyone knew. And so lightning in a bottle was such a great way to describe it. And then the other thing is because there aren’t a lot of recurrent cervical cancer survivors, especially six, seven-time survivors, I’ve been able to, hopefully, be a voice for other women.”

Linda has formed an educated opinion about cancer information. “Having more information can help all of us patients make better decisions and more informed decisions and talk to the doctors about things that they weren’t necessarily thinking would be specific to you. But getting more information can be a double-edged sword. Sometimes the more information we have, we can fall down rabbit holes and our cancer might not be this exact mutation, and we might read something on the Internet that isn’t necessarily relevant for our own situation. Make sure to talk with your doctor about information that you find.”

As for patients navigating their cancer journeys, Linda feels it’s important for patients to be empowered and to handle their cancer journey how they want to go through it. “Some patients may want someone else directing everything, but that’s their choice. Some people only tell their spouse. I think caregivers need to respect what the patient wants. That doesn’t mean the patient doesn’t need a reminder from time to time that they need to get up and put a smile on once in a while. I wouldn’t want to be the caregiver. It’s so hard for them, since they can fix the cancer.”

Last November, Linda had a scan that showed no evidence of disease, but she remained on pembrolizumab (Keytruda) as a precaution. “I receive it every three weeks through my port, but it’s super easy. I don’t have side effects. It’s 30 minutes. It’s not life-changing at all. So I hope to be on it for a really long long time, and I get scans every three months. I feel great.”

Though she never could have imagined enduring two types of cancer and seven cancer recurrences, Linda remains grateful for the good things that have come from her journey. “My prayer the last two years was, ‘Please let me live and use me as however I need to be used to help other people.’”

Cáncer de próstata avanzado: Cómo Ser Un Paciente Empoderado

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Cáncer de próstata avanzado: Cómo Ser Un Paciente Empoderado from Patient Empowerment Network on Vimeo.

¿Qué pasos puede dar para convertirse en un paciente de cáncer de próstata con capacidad de decisión? En este video animado, aprenderá herramientas de autoeducación y autodefensa que le ayudarán a participar en las decisiones sobre su tratamiento.

Descargar Guía

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Entendiendo Tu Diagnóstico del Cáncer de Próstata

 Construyendo una Relación con su Equipo de Atención Médica para el Cáncer de Próstata

Construyendo una Relación con su Equipo de Atención Médica para el Cáncer de Próstata

 Usted Tiene un Papel en Sus Decisiones de Atención del Cáncer de Próstata

Usted Tiene un Papel en Sus Decisiones de Atención del Cáncer de Próstata

Transcript: 

Niki: 

¡Hola! Soy Niki, y soy enfermera especializada en cáncer de próstata. Y este es Anthony, que vive con un cáncer de próstata avanzado.  

Juntos, vamos a guiarte a través de una serie de vídeos para ayudarte a aprender más sobre el cáncer de próstata y darte los pasos necesarios para desempeñar un papel activo en tu cuidado y en tus decisiones de tratamiento. 

En primer lugar, quiero presentarles la organización responsable de este vídeo: la Red de Empoderamiento del Paciente, o “PEN”.  

La misión de PEN es sencilla. Consiste en proporcionar a los pacientes con cáncer y a sus cuidadores los conocimientos y las herramientas necesarias para aumentar su confianza, para que tengan el control de su atención sanitaria y para ayudarles a conseguir su objetivo de recibir la mejor atención posible.  

[La experiencia de los pacientes representada en este vídeo es ficticia.] 

Anthony: 

Entonces, ¿qué significa ser un paciente empoderado? La Organización Mundial de la Salud lo define como “un proceso mediante el cual las personas adquieren un mayor control sobre las decisiones y acciones que afectan a su salud.”1  

Cuando me diagnosticaron el cáncer de próstata por primera vez, me sentí abrumado y no me sentía cómodo compartiendo mis preocupaciones y opiniones. Pero gracias a los conocimientos sobre mi enfermedad, a la colaboración con mi equipo y a que aprendí a defenderme a mí mismo, me sentí más controlado y con más confianza para hablar.. 

Niki: 

Exactamente, Anthony. Uno de los primeros pasos para convertirse en un paciente empoderado es informarse sobre su enfermedad. Puede empezar a aprender sobre su cáncer de próstata:  

  • Asegurarse de que puede acceder a su portal del paciente en línea, si está disponible, para poder ver sus registros médicos, comunicarse con su equipo de atención médica y acceder a los recursos cuando los necesite. Si no sabe cómo utilizar el portal del paciente, pregunte en la consulta de su médico, que debe tener un conjunto de instrucciones a la mano 
  • También puede visitar grupos confiables de defensa del cáncer de próstata para informarse sobre su enfermedad. Estas organizaciones suelen ser una excelente fuente de información y apoyo. Pida recomendaciones a su equipo sanitario.  

Recuerde que la información en línea nunca sustituye al consejo médico. Siempre debe consultar a su médico sobre lo que ha aprendido. Esto será más fácil a medida que vayas comprendiendo mejor tu enfermedad y te sientas más cómodo compartiéndola con tu equipo sanitario.  

Anthony: 

Así es, Niki. Pero, como aprendí de primera mano, hablar claro no siempre es fácil. He aquí algunos consejos que me ayudaron: 

  • Anote sus preguntas antes de las citas. Visite powerfulpatients.org/pc para acceder a planificadores de visitas al consultorio que le ayuden a organizar sus notas. 
  • Y trate de llevar a un amigo o un ser querido a sus citas para que le ayude a recordar la información y a tomar notas por usted. 
  • Otro consejo es que sea sincero sobre cómo se siente y comparta con su equipo médico los efectos secundarios del tratamiento o los síntomas que pueda tener. Su médico quiere saber cómo se encuentra y puede ayudarle si tiene problemas.  
  • También es una buena idea considerar una segunda opinión para ayudarle a sentirse seguro de su atención y para estar tranquilo. Esto es especialmente importante si siente que no se le escucha. 
  • Y, por último, usted tiene voz en las decisiones sobre sus cuidados. No dude en hacer preguntas: usted es su mejor defensor.   

Niki: 

¡Es un gran consejo, Anthony! Hemos hablado mucho. Así que no te olvides de descargar la guía que acompaña a este vídeo –– puede ayudarte a recordar lo que hemos tratado. 

Anthony: 

Y visita powerfulpatients.org/PC para ver más vídeos con Niki y conmigo. ¡Gracias por acompañarnos! 

The Power of Shared-Decision Making: A New Revolution of Care

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I remember my treating surgeon discussing my treatment options with me when I was first diagnosed with cancer back in 2017 at the age of 27. I didn’t know much about thyroid cancer, what a thyroid was, or about cancer itself. Of course, no one plans to get cancer in the first place, especially at a young age, so I felt like I was being guided by my care team appropriately. I believed in the “power” of the white coat, a doctor who knew I had my best interest at heart. What I didn’t know was about different options when it came to treating my type of cancer, which my doctor explained to me in terms that I understood. I didn’t know it at the time, but my doctor was engaging in what’s called “shared-decision making,” when the patient and their care team, including their doctor, take the time to talk about different options and how it will affect the life of the patient moving forward. 

To give an example, I was given the option of removing the half of the thyroid that contained the tumor and leaving the other half in, as opposed to removing the entire gland. My doctor explained the pros and cons of both types of surgeries so that I could make a well-informed decision with my caregivers, and as a result, I felt like a more prepared patient. 

From this experience, I learned how important it is to have a good relationship with your entire care team, especially with your treating physician, such as an oncologist, or in my case, a surgeon and endocrinologist. Having an ongoing back and forth conversation that fuels this type of relationship is especially important, too, as I believe it can directly impact patient compliance. For example, as part of ongoing surveillance for my diagnosis, and typically for any cancer diagnosis, ultrasounds and bloodwork are performed on a routine basis, such as every 3-6 months, or even yearly. If a patient doesn’t know why this is being done, they may forgo either of these types of appointments, especially if they’re expensive.

Another example of patient compliance is compliance to medication instructions. Doctors and patients alike should have a conversation about how these medications are to be taken, especially if the medications are newly prescribed. Often patients are labeled as “non-compliant,” but more likely than not, they don’t understand. This is where communication, a strong relationship, and shared decision making come in to enhance patient outcomes. 

As patients, we have to be advocates for ourselves when it comes to our health, which also involves our care team involving us in our own healthcare. We should feel emboldened to do this, not afraid. If you don’t feel comfortable discussing your treatment and your opinions with your physician and care team, then it’s time to find another group, and that’s 100% okay. Be your own empowered patient! 

What Questions Should You Consider Asking Your Prostate Cancer Care Team?

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What Questions Should You Consider Asking Your Prostate Cancer Care Team? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients have engaged conversations with their healthcare team? This animated video reviews key questions patients can ask to help them navigate their treatment and care decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.  

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

Thanks for joining us! In this video, Niki and I are going to walk you through key questions to ask your prostate cancer team as you navigate your care decisions. 

First of all, it’s helpful to ask your physician how much experience they have treating prostate cancer patients. If appropriate, you may want to consider a second opinion. 

Niki: 

And it’s important to also have a deeper understanding of your disease by asking: 

  • What stage and grade is the prostate cancer? Has it spread beyond the prostate? 
  • Are there additional tests that you should undergo to provide a fuller picture of your disease? 
  • What educational resources are recommended to learn more about prostate cancer? 

Anthony: 

Once you understand more about your diagnosis and disease, then it’s time to really understand what steps could be next.  

And, if – and when – your disease does need to be treated, you should feel engaged in deciding on your treatment plan.  

Niki: 

That’s right. You can start by asking if treatment needs to begin right away or if you will be monitored for any changes. 

  • Then, establish the goals of your treatment plan. Based on your diagnosis and stage of disease, is the goal to try to cure the cancer or to manage the disease symptoms?  
  • Ask what treatment options are available to you and which approach is recommended for YOUR disease? 
  • And inquire if there is a clinical trial that could be right for you.  
  • Finally, ask what your options are if the initial treatment doesn’t appear to be effective or if your disease progresses. 

Once you know your options, ask about the potential short term and long-term side effects of each approach and how they may be managed. 

Anthony: 

You should also find out how your lifestyle may be impacted. For instance: 

  • Find out how each approach could impact your daily life, including your sex life, and for how long. 
  • You may also inquire about how treatment may impact fertility and if you should speak with a fertility specialist. 
  • Ask about the financial implications of each approach and whether there are resources for financial assistance. 

Niki: 

That’s great advice, Anthony. We hope these questions give you a good starting point for engaged conversations with your team. Remember, you may have more questions related to your individual situation, these are just a starting point to help.

Anthony: 

Don’t forget to download the guide that accompanies this video. It will have a comprehensive list of the questions we have reviewed. 

And visit powerfulpatients.org/PC to access more videos with Niki and me. 

You Have a Role in Your Prostate Cancer Care Decisions

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You Have a Role in Your Prostate Cancer Care Decisions from Patient Empowerment Network on Vimeo.

What role do patients play in their prostate cancer care decisions? This animated video reviews the shared decision-making process and outlines steps for patients to engage in their care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

What Questions Should You Consider Asking Your Prostate Cancer Care Team?

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.   

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

Thanks for joining us! In this video, we’re going explain why you should take an active role in your prostate cancer care and review steps to help you engage in the decisions that need to be made. 

Niki: 

That’s right, Anthony.  

Which leads me to the term “shared decision-making.” You may have heard of this term already – basically, it means that you and your healthcare team collaborate on care decisions and the goal is to have YOU be at the center of these decisions. 

Anthony: 

That’s right! For example, when it was time to discuss my care plan, my doctor walked me through the considerations of each approach and how each option could impact my lifestyle. I asked questions and shared my goals during the conversations. And I felt HEARD. 

Niki: 

Exactly – that’s shared decision-making in action. When you are living with cancer, often the risks and benefits need to be weighed to decide which course of action could be best for your individual disease. So why is it so vital to be an active participant? Studies show that patients who engage in their care may have better outcomes and experiences1. And it will help you learn more about your disease and move forward with confidence. 

Anthony: 

Now that you know what shared decision-making IS and why you should become a partner in your care, let’s review steps that will help you become more engaged: 

The first, and most important step, is to educate yourself about your disease.  

Niki: 

Your doctor’s office can be a great source of information and resources, so it’s a good place to start. And there are also several advocacy groups that provide educational materials, for instance: [links on screen as they are read]: 

  • Patient Empowerment Network, the creator of this video. 
  • The Prostate Cancer Foundation. 
  • The Prostate Cancer Research Institute. 
  • The Prostate Health Education Network, which focuses on services and support for Black men. 
  • And ZERO-The End of Prostate Cancer. 

Anthony: 

Once you learn more about your prostate cancer through resources like these, you will feel more empowered to voice your opinions. Remember, it’s important to speak up and ask questions at each stage. 

Niki: 

So, what else can you do to be a partner in your decisions? 

  • First, make sure you understand and communicate the goals of your care before making any decisions. 
  • Then, make sure you are informed about your options and ask for supporting materials if you need clarity. 
  • And ask how your lifestyle may be impacted by each approach. 
  • You should also discuss the risks and benefits of each option. 
  • Request resources to aid in decision-making and information that can help determine the best route for your individual disease. 
  • As always, bring a friend or family member and discuss your options with loved ones. 
  • Finally, remember YOU are at the center of your care. You should feel comfortable with any choice before you move forward. 

Anthony: 

Now that you’ve watched this video, make sure to download the guide that contains highlights of this discussion – and you can print it out or save it on your computer to reference in the future. 

Niki: 

Visit powerfulpatients.org/PC to access more videos with Anthony and me. Thanks for joining us! 

Building a Relationship With Your Prostate Cancer Healthcare Team

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Building a Relationship With Your Prostate Cancer Healthcare Team from Patient Empowerment Network on Vimeo.

Who are the potential members of your prostate cancer team? This animated video reviews the key providers who may be involved in your care and provides tools for confidently communicating with team members.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with prostate cancer. Thanks for joining us! 

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

In this video, we’re going to walk you through the members of your prostate cancer healthcare team – and share tips for building strong relationships and communicating more effectively. 

Niki: 

When it comes to prostate cancer, you need a team that collaborates on all aspects of your care. And it’s vital that you utilize ALL the members. After all, they are there to help you. 

So, who IS on your team? 

There are several different providers who may be involved with your prostate cancer diagnosis and care: 

  • Let’s start with a urologist. This is a doctor who specializes in the male reproductive organs and can perform prostate cancer surgery. Some are also trained oncologists – urologic oncologists – who are specially trained in cancer. 
  • Then there could be a radiation oncologist. This team member specializes in treating prostate cancer with radiation. 
  • Next, there may also be a medical oncologist. This is a physician who is trained in non-surgical prostate cancer approaches, such as hormonal therapy and chemotherapy. 
  • And, finally, your primary care physician should also be kept in the loop. 

Anthony: 

And beyond your doctors, there is a whole team of supportive professionals to help you along the way. For instance: 

  • A nurse like Niki can provide you with information to help with decisions and share advice for managing day-to-day issues, including symptoms and side effects. You may also want to work with a nurse navigator, who is specially trained to help guide you through your cancer care. 
  • A social worker can help you navigate the details of your care and suggest support resources for you and your family.  
  • And a palliative care specialist can work with you on helping to relieve symptoms, pain, and even stress-related issues like anxiety and depression. 

Niki: 

 There are several other team members you can rely upon, including: 

  • A pharmacist, who can dispense prescription medications and inform you of their use and potential side effects. 
  • A genetic counselor, who has special training in helping patients understand their genetic testing options and the potential impact of the results.  
  • And don’t forget mental health professionals. Treating your mental health is just as important as treating the prostate cancer itself.  

Anthony: 

Exactly. I struggled emotionally when I was diagnosed, so I reached out to the social worker, who connected me with a counselor and support groups. Seeing a professional and joining a group made feel less alone and more hopeful.  

Niki: 

And last, but not least, a care partner or loved one is another core member of your team.  

Anthony: 

Absolutely! Whether it’s a friend or family member, having someone with you at appointments or to talk about your options is beneficial. 

Now that you know who may be on your team, let’s talk about strengthening communication. By communicating effectively, you can learn about your disease and become an active partner in care decisions. Here are a few tips to help you: 

  • First, make sure everyone on your team is aware of your care goals. 
  • And bring someone to appointments to help you write down important information and make sure to request post-visit summaries to help you retain the information. 
  • Ensure you have access to your patient portal and use the messaging service to communicate directly with your team members. Ask follow-up questions about your appointment if necessary. 
  • Finally, it’s essential to speak up in appointments. Your team wants to hear your questions and know how you are doing. It could help them adjust your care plan. 

Niki: 

Thank you for joining us – we hope you feel more empowered! And remember to download the guide that accompanies this video to review what we discussed. 

Understanding Your Prostate Cancer Diagnosis

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Understanding Your Prostate Cancer Diagnosis from Patient Empowerment Network on Vimeo.

What do you need to know about your prostate cancer diagnosis? This animated video reviews the diagnosis process and provides steps for working with your healthcare team to understand your individual disease.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi! I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with prostate cancer.  

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

In this video, we’ll help you understand prostate cancer and how it is diagnosed and staged. 

Niki: 

So, what is prostate cancer exactly? It starts when cells in the prostate gland grow out of control, forming a cancerous tumor.  

It’s the second most common cancer in American men. And while it can be serious, there are options available for prostate cancer care.  

Anthony: 

And there are certain risk factors that may make you more likely to develop prostate cancer, such as: 

  • Your age. 
  • Your race and ethnic background. For instance, Black men are more likely to be diagnosed with prostate cancer than men of other races. 
  • Your family history and your genetics.  

Niki: 

That’s right, Anthony. Now that we have a better understanding of what prostate cancer is, let’s move on to how it is diagnosed.  

Your healthcare team will use a variety of tests to better understand your disease. 

For example, A PSA test [PSA: Prostate-Specific Antigen on screen] and a biopsy may be used to confirm a diagnosis. And imaging tests—like an MRI or CT scan—are used to find out if the cancer has spread. 

These test results also help your doctor stage your disease. Staging helps indicate the location of the cancer, whether it has spread beyond the prostate, and its impact on other areas of the body. It may also assist in guiding a patient’s treatment plan.  

When staging prostate cancer, doctors may consider: 

  • The size of the primary tumor and where it is located. 
  • They’ll also factor in if the cancer has spread to nearby lymph nodes or other parts of the body. 
  • The patient’s PSA level is also used in staging. This test measures the amount of prostate-specific antigen in the blood. 
  • And finally, the cancer’s grade, which is based on the Gleason score. A Gleason score measures how likely the cancer is to spread and whether it is aggressive. 

Anthony: 

Thanks for explaining that, Niki. So, what are the stages of prostate cancer?  

Niki:

Great question!  

  • Prostate cancer stages begin at stage I, which indicates a slower growing disease that is confined to the prostate. 
  • And stage II means the cancer is only in the prostate, but the disease may have an increased chance of growing or spreading.  
  • Stage III prostate cancer indicates that the tumor has spread to areas close to the prostate and may be considered locally advanced.  

Anthony:   

And I was diagnosed with stage IV prostate cancer, which means it has spread beyond the prostate and is considered advanced prostate cancer.  

Niki: 

That’s right. And because prostate cancer staging is complicated, it’s important to review test results with your doctor to understand your stage and grade. If you don’t understand your diagnosis, make sure to ask questions and request resources to help you.  

Anthony: 

Here are some additional steps you can take to feel more confident about understanding your diagnosis: 

  • First, ask about the stage of your prostate cancer and whether it is aggressive. 
  • And confirm that you have had all relevant testing to inform an accurate diagnosis, including genetic testing, if appropriate. 
  • Then, be sure to review the test results together with your team to make sure you understand how they impact your care and treatment options. 
  • Also, ask about your Gleason score and how it impacts your decisions.  

Niki:

And find out how experienced your physician is in treating your type of prostate cancer and consider seeking a second opinion with a prostate cancer specialist. 

Anthony: 

Finally, don’t hesitate to request support resources to help you cope emotionally with your diagnosis.  

Niki: 

Visit powerfulpatients.org/pc to view all the videos in this series and download the guide that accompanies this video to review what we’ve discussed.   

Anthony: 

Thanks for joining us! 

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

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Tools for Becoming an Educated and Empowered Prostate Cancer Patient from Patient Empowerment Network on Vimeo.

What steps can you take to become an empowered prostate cancer patient? In this animated video, you’ll learn tools for self-education and self-advocacy to help you partner in your care decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi! I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.  

Together, we’re going to guide you through a series of videos to help you learn more about prostate cancer and give you steps to play an active role in your care and treatment decisions. 

First, I want to introduce you to the organization responsible for this video—the Patient Empowerment Network—or “PEN.”  

PEN’s mission is simple. It’s to provide cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in their goal of receiving the best, most personalized care available.  

[Patient experience depicted in this video is fictional.]

Anthony: 

So, what does it mean to be an empowered patient? The World Health Organization defines it as “a process through which people gain greater control over decisions and actions affecting their health.”1 

When I was first diagnosed with prostate cancer, I was overwhelmed, and I didn’t feel comfortable sharing my concerns and opinions. But through finding out more about my disease, working together with my team and learning to advocate for myself, I felt more in control and more confident speaking up. 

Niki: 

Exactly, Anthony. One of the first steps to becoming an empowered patient is to educate yourself about your disease. You can start learning about your prostate cancer by:  

  • Making sure you can access your online patient portal, if available, so you can view your medical records, communicate with your healthcare team, and access resources when you need them. If you don’t know how to use the patient portal, just ask your doctor’s office – they should have a set of instructions on hand. 
  • You can also visit credible prostate cancer advocacy groups to learn about your condition. These organizations are typically an excellent source of information and support. Ask your healthcare team for recommendations.  

Remember, online information is never a substitute for medical advice. You should always consult your doctor about what you’ve learned. This will become easier as you get a better understanding of your disease and feel more comfortable sharing with your healthcare team. 

Anthony: 

That’s right, Niki. But, as I learned firsthand, speaking up is not always easy. Here are some tips that helped me: 

  • Write down your questions before your appointments. Visit powerfulpatients.org/pc to access office visit planners to help you organize your notes. 
  • And, try to bring a friend or loved one to your appointments to help you remember information and to take notes for you. 
  • Another tip is to be honest about how you feel and share any treatment side effects or symptoms you may be having with your healthcare team. Your doctor wants to know how you are doing and may be able to help you if you are having issues.  
  • It’s also a good idea to consider a second opinion to help you feel confident in your care and to provide piece of mind. This is especially important if you feel like you are not being heard. 
  • And, lastly, you have a voice in your care decisions. Don’t hesitate to ask questions – YOU are your own best advocate.  

Niki: 

That’s great advice, Anthony! We’ve covered a lot. So don’t forget to download the guide that goes with this video—it can help you remember what we’ve discussed. 

Anthony: 

And visit powerfulpatients.org/PC to view more videos with Niki and me. Thank you for joining us!  

RMC Patient Profile: Lamar Valentina Part 2

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Read the first part of Lamar’s RMC journey here…

Part of Lamar’s cancer treatment occurred during the COVID-19 pandemic. He had to quarantine to keep himself safe, and it was scary to him at times. “But now that COVID-19 has subsided a little bit. It’s still around, I recommend doing some things that you enjoy. Don’t let cancer take away the joy that you still have. If you’re someone who’s active, maybe you just need to scale back on how active you are. Of course, you want to be safe. If you’re someone who likes to travel, find ways that you can still do it safely.”

Lamar found some activities that were helpful for him physically and mentally. “What helped me was being more involved in nature. I would do walks. I would sit outside and watch the clouds. I’d watch the stars at night. And I try to still continue to play basketball with my son. Obviously, he’s starting to get a little better than me. He’s getting bigger and faster, and I’m a little weaker. But I try to still do things that are fun and enjoyable.”

During part of COVID-19 restrictions, Lamar started missing the ability to do things, being self-sufficient, and even getting back into work. People asked why he was in such a rush to get back to work, but work helped him feel a sense of purpose. He felt like he had become a burden to his loved ones who had to cared for him. Lamar recommends striking a balance between accepting help and doing some things yourself. “Let others who want to help you actually help you. If you feel up to doing other things on your own, don’t shy away from that. Don’t let cancer take away a little bit of independence or a little bit of your purpose that you feel. I enjoy doing these PEN interviews, because I think we need that voice, and people shouldn’t shy away. Obviously, I’m not saying go out and be reckless. Be safe but try to do the things that bring you joy.”

People often tell Lamar that he looks so healthy and that he doesn’t look sick, which can be frustrating, since he wakes up with pains and has tumors all over. His biggest takeaway from this journey is how resilient he is. Lots of people tell him that he makes cancer look easy but don’t realize that it’s very difficult. “I just feel like life is short as it is. We all have an expiration date, and we don’t know when it’s going to come. And that’s the only thing guaranteed in life. For me, I really just feel like I want to live each day as if I’m trying to make a mark, at least be as happy as possible, chasing my goals and my dreams. I try to make sure with every encounter that I have with people that I’m not angry or bitter. I don’t want that to rub off on them, so I try to make sure that I greet everyone with a smile.”

If people don’t know specifically from his appearance since his eyebrows and hair are gone or know from someone else, Lamar prefers others to not know what he’s going through. “I don’t want people to feel sorry for me. Just treat me like a normal person, and hopefully I can pass on some positive energy and some happiness to everybody else regardless of what they’re going through to make it a kinder place here on earth.”

Lamar feels blessed about his overall quality of life. He’s at work and still travels for work as a flight chief in the Air Force. I’m not as physically active as I’d like to be. He’s doing chemo every three weeks, and will be starting radiation soon for a spot that’s remaining. The ultimate goal is to achieve no evidence of disease. He’s been in outpatient care for his entire treatment process and has been able to go to the hospital for chemo and then returns home and to work. “It’s been an absolute blessing that I cannot take for granted. But I still go through ups and downs. I have slight pains here and there. I’d love to be able to work out three to four days a week. But I’d rather take it easy and focus on my body healing from the inside out, and I’ll get back to working out more sooner or later.”

His biggest advice to renal medullary carcinoma (RMC) patients and cancer patients is don’t give up hope. “A lot of this fight is mental. Your body follows physically what you think mentally. So speak positive affirmations. Every day when you wake up even on the tough days, speak healing into your body. What you’re eating, whatever you’re drinking, it’s going to provide healing and substance. It’s going to rid your body of cancer. No matter how dark it looks or how dark it gets at any point, do not give up hope. Do not lose your spirit. Make sure you’re smiling and laughing and doing the things you love with the people you love.”  

Lamar looks forward to ongoing research of RMC. “This has been a huge purpose added to my life. Anything I can do while I’m here, I’ll do it. I’m a big advocate for more support and more research for RMC. I know each day we’re getting closer to a cure, and hopefully this won’t impact families as negatively as it has in the past.”

What’s Lamar’s parting advice to other patients? “When you come out of the storm, you won’t be the same person that walked into it, that’s what the storm is all about. When you can’t control what’s happening to you, control how you respond to it, that’s where your power is.”

RMC Patient Profile: Lamar Valentina Part 1

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When Lamar Valentina shares his renal medullary carcinoma (RMC) patient journey, you can tell that he loves serving and helping others in his work and free time even as a cancer patient. As an active duty Technical Sergeant in the U.S. Air Force, Lamar has continued to work throughout his cancer treatment. When a lump on the side of his neck combined with extreme abdominal pain and flank pain concerned him, Lamar decided to have his symptoms checked out at the hospital. His RMC diagnosis came shortly before he turned 35, and his chemotherapy started about two weeks after his diagnosis.

Lamar is fortunate to have some friends who work in cancer centers, and they were connected with experts at Dana-Farber Cancer Institute, which is in Boston where his son also lives. The COVID-19 pandemic created a delay for some of his chemo, but it ended up as a benefit to give his body a break. Lamar recalls feeling some measure of relief about his tumor scans, “…we saw that there was a little bit of growth, it wasn’t alarming growth, but there was some growth, but it still hadn’t gone to where it was when I first was diagnosed, so that was the good thing that it wasn’t as aggressive as it’s known to be.”

After the things he’s gone through during his cancer journey, Lamar feels he has much to share to help other patients with what they’re going through. For newly diagnosed patients, he recommends that patients take advantage of resources and oncology therapists that most cancer centers provide. “Take the time to process the news of your diagnosis. I was sort of like a deer in headlights. Everything went blank, and I felt like I was in a nightmare of a dream, trying to wake up. So process your diagnosis and go through the emotions. You’re going to feel sad. You’re going to be depressed. You’re going to be angry. You’re going to be curious as to why you. But once you process those emotions, make sure you don’t compartmentalize those emotions and you express them to somebody whether it’s a friend, a caregiver.” 

Early after his diagnosis, Lamar decided to go full-on vegan and lost a lot of weight. “It was very frightening, because losing weight made my body become a lot more frail and weak. So I started to eat fish and chicken. His advice to other patients, “I think specific things like that definitely talk it over with your primary doctor, your medical team to make sure you’re doing what’s best for yourself and that you’re not going to hinder your treatment.”

Lamar feels fortunate to have connected with the Patient Empowerment Network (PEN) RMC Empowerment Lead Cora Connor through a Google search and found R.M.C., Inc. He also feels that the RMC community is a very tight-knit community, “I really like to pay homage to those we have lost. One of the first friends I met was Chad Alexander, Ava Cummings, Kai Penn, Da’Corey Kimbrough, Seth Calhoun, Caleb Wheeler, Feninna Vasilou, and there are so many other people I’ve met…they’ve since passed away. These are a few of the RMC warriors we have lost. I continue to fight for them and to everyone still battling RMC, I wish nothing but clear scans as we fight on the front lines together! Finding people who are going through this whether RMC or another form of cancer, I think you can relate more to cancer patients, because they understand what you’re going through.” 

Lamar advises patients to empower themselves. “You want to be able to at least know what questions to ask. And it starts with educating yourself. So I think you want to be able to go into those appointments and know what questions to ask, know if you get a certain answer to that question to know what a good follow-up question would be.” Early on in his care, he would record his conversations with his doctor to ensure he got all the information. Lamar also advises writing down questions before you go to your appointments to make sure you don’t forget about them. 

According to Lamar, being involved and learning about trial treatments are vital ways for patients to take part in their own care. “A lot of people have asked me about my treatment plan, but we’re all different. Our bodies are different. The way we can handle certain treatments are very different. So I try not to compare my care and the chemotherapy to what other people had. Because if you go based off that, you may turn down a treatment that may possibly work better for you with your genetics, and it may not have worked well for someone else, and you deny that based off their reaction to that treatment when it could be really helpful for you.”

Read the second part of Lamar’s RMC journey here…

Empowering One Another: Helping Your Healthcare Team Help You 

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Life is all about making choices, and I think the same could be said about cancer in some capacity. If we take the time to think about it, we have choices in: 

  • What doctor we see for diagnosis and whether we seek a second opinion 
  • How we’re treated by our doctors and healthcare team 
  • What type of treatment we receive, if we’re lucky 
  • How we feel about our diagnosis and perceive our prognosis 
  • What we do with the information we receive and the knowledge we gain 

So you see, it’s all about empowering ourselves and our healthcare team. But how do we go about empowering our healthcare team in the choices we make? Here are ways to try: 

  • Tell them about your needs, including spiritually, emotionally, physically, and mentally. How can your healthcare team meet these when: 
  • Explaining your diagnosis and prognosis: 
  • Do they sugarcoat or “give it to you straight” based on what you told them about how you want to receive the information? 
  • Do they give all the details or only the “need to know” info? 
  • Do they communicate with you in a way that you understand? 
  • Do they give you resources to further educate yourself with?

Choosing your treatment options: 

Do they give you choices based only on what they know, or do they take into consideration research that you’ve done on various options, clinical trials, etc? 

Do they help with options based on what your insurance covers? 

During the treatment process: 

  • Are they readily available (or at least within 48 hours) to answer questions? 
  • Do they explain the process as it continues (ie. next steps)? 
  • Do they check on you to see how you’re doing? 

After treatment ends: 

  • Do they explain next steps? 
  • How often to get blood work, scans, routine appointments? 
  • Do they provide a survivorship care plan? 

All of this work that we do as patients goes hand in hand with how we want to be treated by our healthcare team. As we empower ourselves, we empower them too, and there’s nothing better than a great team that’s on the same page. 

Living with a Cancer Diagnosis Amid the Pandemic

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Living With a Cancer Diagnosis Amid the Pandemic from Patient Empowerment Network on Vimeo.

Empowered patients, Honora Miller and Barry Marcus, share what it has been like living through a pandemic while being immunocompromised because of their multiple myeloma diagnosis.

Transcript

Barry Marcus:

I have really never hesitated from telling people that I have cancer and I’m immunocompromised and it wouldn’t be a good idea for me to get together with them and people understand that. They know what kind of times were in so I feel like I haven’t really put myself at risk, I have gone out to dinner a few times at restaurants that have outdoor seating, which is now pretty common in my area, and I’m also very fortunate to have gotten both doses of the Pfizer vaccine, so the interesting part of that is going to be whether I’m going to change my behavior because of that, I know I will continue to wear a mask, always when I go outside even though I’m now vaccinated.

Honora Miller:

Yeah, I have found it interesting actually, among a group of my friends, we meet via Zoom every Wednesday, and it’s been interesting to see over the course of the year that we’re now in this. They certainly know that I am compromised, but they forget, and so, of course, I’ve been directed very clearly that I need to do as much sheltering in place as possible to not go grocery shopping, to have things delivered, or my husband often goes grocery shopping and to really…you know, I can’t go to the gym. The gym has been opened a couple of times during this process, it opens and closes, but I can’t go to the gym, I need to do my exercise differently, I can’t go swimming, so there have definitely been changes and I have taken extra care because I’ve really been told in no uncertain terms that I need to. I’m a little anxious about when my son, who I have a high school student, he’s been having remote school when he goes back to school, if I haven’t been vaccinated yet, I’ve been told that I will need to quarantine from him, so we’re hoping that everything will coincide so that I don’t need to do that.

It requires ongoing planning, and I do have friends who have just spent ski week up and Tahoe, and they invited me to come and I can’t come. It’s not something I can do now, and I feel clear in my mind that this is a period of time where I need to not do things so that I can tell the tale later on, and what this experience was like Once COVID is over ’cause it will be.

Read the Full PEN-Powered Activity Guide VI

How Can You Overcome Hurdles in Your Health Journey?

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How Can You Overcome Hurdles in Your Health Journey from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, discuss the biggest hurdle they faced in their health journey and the importance of finding a healthcare team you are comfortable with.

Transcript

Honora Miller:

Hi, I’m Honora Miller, it’s my pleasure to be the Myeloma Network Manager for Patient Empowerment Network and I look forward to speaking with Barry Marcus.

Barry Marcus:

I’m Barry Marcus. I am 70 years old; I was diagnosed with myeloma in 2015. I am a retired Geologist, I worked for the sacrament of County Environmental Management Department for 20 years, and I’ve been retired since 2012. I think my biggest hurdle was finding an oncologist that I was very comfortable with that didn’t hesitate to give me all the information that I wanted, and it took me a while. When I first had my diagnosis, I was in a health plan where I had a very hard time understanding my oncologist, I didn’t have a lot of confidence in him, and I was able — because I had just turned 65 to get on Medicare and change health plans outside of the open enrollment process, and I was fortunate enough to find an oncologist that I now have complete confidence in, and I’ve been seeing him for four or five years now, and I wouldn’t want anyone else.

Honora Miller:

That’s great to hear that you have found someone you’re comfortable with. That makes such a difference. I found that for myself personally, the greatest challenge was to actually get diagnosed, I was comfortable with my medical providers, yet we didn’t know what was going on with me, and it was through their perseverance in tolerating my ongoing questions, they were really helpful in continuing to do testing, because we had no idea I had mild anemia that persisted and I had fatigue, and they had no idea what that was, and I was fortunate enough that I felt confident in those medical professionals that when I did get a diagnosis, through a lot of perseverance I felt like, okay, we got to roll. The data showed that I needed to move quickly. I can’t imagine what I would have done in that moment if I didn’t feel comfortable with them.

Read the Full PEN-Powered Activity Guide VI

Is There Value in Seeking a Second Opinion?

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Is There Value in Seeking a Second Opinion from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, share the importance of getting a second opinion and how to navigate if you are reluctant to ask for another physician to review your case.

Transcript

Barry Marcus:

I sought out a second opinion right after my initial diagnosis, I knew very little about multiple myeloma when I was first diagnosed, and as I just mentioned, I didn’t have a lot of confidence in the doctors in my initial HMO, so I wanted to make sure just for myself and for the future, whether what they were proposing as a treatment plan made sense for me, and so I did seek out a second opinion and I was so glad that I did. It did give me a little bit more confidence in what the initial HMO was proposing because the doctor that I saw, said, Yeah, this is the correct thing to do for you. Now, since I’ve been with the same oncologist now for a number of years, I have gotten second opinions on things that he’s told me I wanted to do, and I did have to overcome my initial reluctance to do that for kind of fear of hurting his feelings or thinking that maybe he wouldn’t like me as much after that, but in speaking with many of the infusion nurses, they say it’s quite common and the doctors don’t mind at all, and it’s really something that I need to do to feel like I’m getting the best course of treatment.

Honora Miller:

I have found too that in speaking with people that same reluctance around not wanting to hurt feelings, but indeed the doctors themselves, I’ve have talked about it directly with my doctor, it’s so common at a practice. It’s just part of their world. Of course, we don’t know that and we’re trying to be sensitive, but they’re not concerned about it at all. In fact, even changing doctors, they don’t even blink at it because they’ve got so many patients that they don’t concern themselves when you decided to move on to a different doctor, ’cause I have changed doctors when I didn’t feel like it was the right fit, oncologists, and that has been a really good thing to do when I didn’t feel comfortable.

When I didn’t feel, I guess it was as a result of COVID, it kind of gave me like another lens to look at my relationship with my doctor and my comfort level, ’cause I’ve had several oncologists, several of them have moved on. Once I realized, okay, this is living with myeloma during COVID, do I feel comfortable with this oncologist being my doctor that I was realizing, no, okay, I need to switch doctors till I feel comfortable, and I did get a referral within the same practice of a different oncologist, and I’m so happy that I did that, ’cause it makes all the difference.

We communicate much more easily, and I feel like if anything goes on with COVID, like I could rely on him to make some good decisions around my health.

Barry Marcus:

One of the things that I’ve come to realize is that treating myeloma is just as much an art as it is a science, and there is no one-size-fits all for any patient, and if I get a suggestion from a second doctor, I bring it back to my primary oncologist, he’s been very accepting of it and willing to consider making some changes maybe that I got from seeking out a second opinion. So, I feel like I’ve been fortunate in that.

Read the Full PEN-Powered Activity Guide VI

Empowered Patients Empower Patients: How to Take Charge of Your Diagnosis

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What comes to your mind when you think of the word “empowerment?” Do you think of a specific person, thing, or event? What about an “empowered” patient? Do you think of a patient or patient advocate who goes above and beyond and fights for their health care, or embodies themselves with a wealth of knowledge about a specific disease? At the Patient Empowerment Network (PEN), we believe that patients have power. They have the power to learn about and understand their diagnosis, find a healthcare team that understands their needs, values, and morals, and support other patients on their cancer journey – all to create better health outcomes. Are you looking to become an empowered patient? Here a few ways:

  • One of the most important things about your journey is that it is your own. No cancer diagnosis is alike, just like no patient is alike. Your story is unique, and the power of sharing your story is unmatched. Storytelling is what connects others and develops strong bonds. Share your story with your family and friends, post about it on social media, and connect with patient advocacy organizations (including PEN!) to share your story across the globe. 
  • Create your own advocacy blog: This article has how-tos and best tips. 
  • Participate in Tweet chats: Tweet chats are chats that occur on Twitter at different times/days using a hashtag. PEN has a tweet chat called #patientchat that occurs every other Friday. These chats are hosted by a variety of organizations around different topics. As a participant, you answer a series of questions prompted by the host. It can be a great environment to express your opinions and talk about your experience. You can find Tweet chats relevant to you by using Symplur’s Healthcare Hashtag Project, which lists hashtags specific to what you’re looking for. You can also see if specific organizations you’re following on Twitter host chats or start your own! 
  • Join a support group in-person or online. There are a number of different organizations that offer support groups (here are some of my favorites!) where you can share your story and hear other’s, ask questions, and relax knowing you’re in a judgement-free environment. 
  • Utilize PEN’s Digitally Empowered Program: This program consists of 10 modules with videos and resource guides to navigate all that technology has to offer including navigating healthcare resources, forming a support network, using social media, navigating your health with different devices and apps, and using telemedicine. 
  • Keep updated on the latest research about your diagnosis, and share what you find relevant to you with your healthcare team and/or on social media. This article explains how to read scientific papers. 
  • Utilize PEN’s online resources tailored to the cancer community, as well as specific cancers, that focus on what to do when you’re newly diagnosed, testing and treatment options, clinical trials, and accessing and affording healthcare.