Tag Archive for: stage iv

How Is Breast Cancer Staged?

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How Is Breast Cancer Staged? from Patient Empowerment Network on Vimeo.

What do breast cancer patients need to know about staging? Expert Dr. Bhuvaneswari Ramaswamy explains clinical staging and discusses common breast cancer genetic mutations.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

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Thriving With Breast Cancer Tools for Navigating Care and Treatment

 What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

 Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care?

Transcript:

Katherine:

Dr. Ramasamy, how is breast cancer staged?

Dr. Ramaswamy:          

The breast cancer is usually staged by using couple of things. One is clinical staging. So, when you come in with the initial you feel a lump and you get a mammogram. So, we will stage you by   understanding the size of your tumor in your breast as well as whether we are able to palpate your lymph nodes. Second, we, you know, the imaging. What we feel as a size is usually a little bit   overestimated when we look at the mammograms or  the MRIs that you have. And then we’ll see whether in the – in those imagings whether your lymph nodes are looking abnormal. So, we use these initially to do clinical staging. But then when we go to surgery, that’s when we do the correct   pathological staging because now, we know exactly your tumor size. Then they do what’s called a sentinel lymph node biopsy.

We don’t need to take all the lymph nodes to stage your nodal status anymore. We just use this   methodology in the surgery, in this – during surgery  to just pick out those nodes that is draining your tumor back. And whether they’re positive or not. In general, as long as you don’t have a very locally advanced cancer, we don’t need to do staging scans to stage you for breast cancer. But in case you are unlucky enough to have cancer spread in those, and we do scans and you have cancer either in your bone or liver or lung, then that is a higher staging, and that’s what’s called the stage IV cancer.

Considerations That Help Guide Breast Cancer Treatment Decisions

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Considerations That Help Guide Breast Cancer Treatment Decisions from Patient Empowerment Network on Vimeo.

What are key factors that help guide breast cancer treatment decisions? Expert Dr. Bhuvaneswari Ramaswamy explains what is considered and explains the significance of each factor.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

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Related Resources:

What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

 Thriving With Breast Cancer Tools for Navigating Care and Treatment

 Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care?

Transcript:

Katherine:

Another key component of thriving is finding  a treatment that is right for your disease. What are the considerations that guide a treatment decision?

Dr. Waks:

Yeah, great question. So, what we just talked about,  the two things that are very important for us to make a decision, and that’s where we have come far in the last 20, 25 years, is because we are not just taking the staging.

That is anatomical staging, meaning what’s the size of your tumor and the lymph node involvement. We use those. That is important for us because that obviously changes the risk. The higher the stage, the higher risk of   recurrence. The higher the risk, we have to do more treatment to get a benefit, right? So, that’s one side. But what we have come to understand is biomarkers  are very important. That is biology of your tumor.

So, the grade, how quickly it’s proliferating although it’s not a biomarker, but it tells us a lot. And then the three important biomarkers we talked about ER, PR, and HER2. Those all are important for us to make a decision. In addition to that, we do something called a genomic testing called Oncotype  DX assay. There is also another test called   MammaPrint. These are genomic testing.

That is, we look at some of the genes that are up or downregulated in your tumor to decide whether you  are going to benefit for something called   chemotherapy or maybe just targeted therapies enough. So, these are some of the factors that we use to make a decision.

Now, do we use age and your performance status? Meaning how well you are? Do you have   comorbidities? Do you have bad diabetes? Do you have heart disease? Yes, they all go into that whole treatment decision, but the primary is made out of biomarkers and genomic testing and anatomic, and the rest are additional factors that go into our decision-making.

Katherine:

Yeah. What about metastatic disease? Are the considerations different when it comes to treatment?

Dr. Ramaswamy:

It is a little bit different because the first thing that we have to understand is when we are seeing them in stage I, stage II, stage III, which is stage IV is metastatic, stage II – we – our goal is a curator. We are trying to really throw the kitchen sink, although that’s really not what we do. We are trying to still be  tailored therapy, but we are trying to do everything we can to prevent a recurrence.

But now when you have a stage IV disease that is the cancer has   spread, that is the horses have left the  barn in the breast and has gone and settled in distant  organs and gone, our goal is to try to contain the disease. So, prevent further progression, prolong the  life and survival, and also improve quality of life. So, there are those consideration.

The biomarkers still go into consideration. We ensure we biopsy the metastatic site and look for those biomarkers. We do the genomic testing, gene sequencing of this. That will also help with our decision-making. We, of course, look for clinical trials because new novel therapies are always more important, but these are the other factors. And, of course, performance status that is how well you are,  how well your organs are functioning, and what’s your age, and how that affects your morbidity. All of those are also important.

Recent Advances in Treating Breast Cancer

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Recent Advances in Treating Breast Cancer from Patient Empowerment Network on Vimeo.

What are the latest breast cancer treatment and research advances? Expert Dr. Bhuvaneswari Ramaswamy shares treatment updates for specific breast cancer types and discusses testing for circulating tumor DNA.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

See More from Thrive Breast Cancer

Related Resources:

Thriving With Breast Cancer Tools for Navigating Care and Treatment

 Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care?

 What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

Transcript:

Katherine:

Are there emerging therapies that are showing promise?

Dr. Ramaswamy:  

Oh, my God. There’s just tremendous emerging therapies that are showing extraordinary progress. And I talk about this to my patients all the time. I mean, I tell them like two years ago say in a patient with – patient with metastatic disease, I’ll say, last year this drug wasn’t approved.

This drug is now approved for you to be given, and it shows extraordinary effect. So, every year we have new drugs getting approved, and we are also trying to get it used to be a little bit of a richness on the HER2-positive disease. And now we are seeing definitely a lot of richness on hormone receptor-positive disease. And I think we’re starting to see some new particular immunotherapy and other targeted therapies showing some response in triple-negative breast cancer.

Now, I know that’s a place that we still need to see more newer therapies, but overall, in the stage IV setting, we have really many options to keep them in good quality of life and longer. But people will ask, “Really, why do I even need to get to stage IV?” Really look at me and improve the curative setting. And that again, we are able to pick the higher risk patients, what me – what it means to have higher risk disease, how do we target them, newer drugs to target them. So, I think in so many ways we are doing better. And we are also getting to a place can we detect higher-risk patients, not just  by their initial diagnosis and response, but follow them sequentially by circulating tumor cells?

And we are getting to that place where we can actually do circulating tumor DNA, so just isolate the DNA, and we know what will belong to the tumor. And then circulating tumor cells seemingly even after your curative therapy. And so that is something that’s getting approved. And so we are not only seeing treatment, but we are also trying to see better detection of that reference. So, I think we are in so many ways, improving. And I am – I’ve been in this for 20 years, some of the things that thought was a dream is coming true. So, truly just keep living well and keep thriving. There are options.

Katherine:                     

Yeah. That’s, it’s positive.

Dr. Ramaswamy:          

Yes.

What Treatment Options and Factors Should Be Considered for Endometrial Cancer?

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What Treatment Options and Factors Should Be Considered for Endometrial Cancer? from Patient Empowerment Network on Vimeo.

Endometrial cancer treatment options take different factors into account, but what are they? Expert Dr. Ebony Hoskins explains key factors that play into treatment decisions and shares advice to be proactive in your care. 

Dr. Ebony Hoskins is a board-certified gynecologic oncologist at MedStar Washington Hospital Center and assistant professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center.

[ACT]IVATION TIP

“…asking your doctor based off the stage and grade, ‘What is the standard of care?’”

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Transcript:

Mikki:

Dr. Hoskins, please walk us through a treatment option for endometrial cancer by stage, and what other factors should be considered when making treatment, the decisions?

Dr. Ebony Hoskins:

So this question used to be so easy where I would say, okay, if you had stage I, if someone is diagnosed with stage I, they don’t need any further treatment. If they have stage two, they may need radiation. Stage III and IV, typically chemotherapy and radiation. And I think what makes the difference in this question now is that it all depends not just in stage, but the type of cancer or the grade. So it’s one is the extent of disease. And the second question is the type of cancer. So some there could be a higher risk endometrial cancer, that’s early stage where we may need to give chemotherapy.

So I think my activation tip for this question would be asking your doctor based off the stage and grade, “What is the standard of care?” We always want standard of care, because that’s a golden standard in terms of treatment. And looking at all the options are into that care. Usually standard of care is either usually one, maybe two options. And I think looking at the whole scenario in terms of the patient, any other side effects that they may have, medications or diagnosis.

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Understanding Stages of Ovarian Cancer: What Should Patients Know?

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Understanding Stages of Ovarian Cancer: What Should Patients Know? from Patient Empowerment Network on Vimeo.

What are the ovarian cancer stages, and what do patients need to know about them? Expert Dr. Ebony Hoskins provides an overview of the stages and explains why they are important in both diagnosis and treatment planning.

Dr. Hoskins is a board-certified gynecologic oncologist at MedStar Washington Hospital Center and assistant professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center. Hoskins sees women for gynecological malignancies, which include the treatment of endometrial, ovarian, vulva, vaginal and cervical cancers.

[ACT]IVATION TIP

“…for patients with a stage of ovarian cancer, understanding what the stage is, what organs that were involved, and kind of the plan of attack.”

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Transcript:

Mikki: 

Dr. Hoskins, what are the stages of ovarian cancer, and why is it important for treatment planning?

Dr. Ebony Hoskins:  

Well, stages of ovarian cancer, typically we stage cancers in four stages. Stage I, I would look at it very generally as a disease, confined to the ovary. Stage II is disease that’s in the pelvis, kind of below the pelvic bones in that area. Stage III can be disease in the lymph nodes or in the upper abdomen. And when I think stage IV for any disease, I think metastatic disease or distant metastases. So someone who may have an ovarian cancer and now we see liver lesions, that is a stage IV. Someone who may have an ovarian disease, ovarian cancer that is now in the lung, that’s stage IV. So those are the way I look at it I, II, III, IV. In terms of treatment planning, we look at that and there’s data that look and say, “What are the best options for treatment in someone?” It depends on their stage and the grade. And that’s all kind of important in terms of treatment, but as well as for prognosis. So my activation tip for patients with a stage of ovarian cancer is understanding what the stage is, what organs that were involved, and kind of the plan of attack.

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What Are the Noted Disparities in Lung Cancer Screening and Access?

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What Are the Noted Disparities in Lung Cancer Screening and Access? from Patient Empowerment Network on Vimeo.

What are some lung cancer disparities in the U.S.? Dr. Lecia Sequist shares insight about disparities in lung cancer screening and care, some causes of the disparities, and ways that advocacy groups are trying to decrease disparities. 

Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.

[ACT]IVATION TIP:

“…be sure to ask your doctor if genetic testing has been performed on your cancer, and if not, can it be performed? It’s not always the right answer, depends on the type of cancer that you have and the stage, but if you have adenocarcinoma and an advanced cancer, like stage III or stage IV, it is the standard to get genetic testing and that should be something that can be done.”

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How Should Newly Diagnosed Lung Cancer Patients Deal with Disease Stigma

Transcript:

Lisa Hatfield:

Thank you. Dr. Sequist, with cancer care, there are some noted disparities, particularly with access to screening and care. What are some of those disparities with lung cancer screening and care?

Dr. Lecia Sequist:

Lung cancer, unfortunately, there are a lot of disparities around the globe, but even if we focus on the U.S., there’s a lot of regional disparities as far as who’s getting cancer, who’s getting lung cancer, where the cancer treatment centers are located, where the screening is available. Lung cancer screening is really effective as far as finding cancer in the earliest stages. It’s not equally available across the country. Some of it has to do with there are certain states that expanded their Medicaid coverage as part of the medical care reform that happened about seven, eight years ago, and there are some states that didn’t expand the Medicaid, and then that situation translated into whether lung cancer screening was easy to get started in hospitals in that state. So there are some regions of the country, and a lot of them are in the South as well as the Western U.S., where if you want to get lung cancer screening, you may have to travel more than 30 miles or even more than 50 miles in order to get lung cancer screening.

There’s lots of activists and patient advocacy groups that are working to try and fix that problem so that anyone could have access to lung cancer screening within a reasonable distance of where they live, but there’s a lot of barriers. Similarly, there are barriers to getting genetic testing performed. We know that doing genetic testing on a lung cancer, it can be really helpful, especially if you have adenocarcinoma, the most common type of lung cancer, getting genetic testing done to see if there are targeted therapies that can be used to treat the cancer is a really important step in the diagnosis, but not all patients are having that done. And as you might imagine, there’s disparities, racial disparities in who’s getting these tests ordered and who is not having that testing done. And so it is important. My activation tip for patients would be to be sure to ask your doctor if genetic testing has been performed on your cancer, and if not, can it be performed? It’s not always the right answer, depends on the type of cancer that you have and the stage, but if you have adenocarcinoma and an advanced cancer, like stage III or stage IV, it is the standard to get genetic testing and that should be something that can be done. 

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[ACT]IVATED DLBCL Resource Guide en español

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What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma?

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What Is the Ann Arbor Staging System for Diffuse Large B-Cell Lymphoma? from Patient Empowerment Network on Vimeo.

What is the diffuse large B-cell lymphoma (DLBCL) system called Ann Arbor staging? Expert Dr. Nirav Shah from the Medical College of Wisconsin explains how DLBCL differs from other blood cancers and symptoms that characterize each DLBCL stage.

Dr. Nirav Shah is an Associate Professor at the Medical College of Wisconsin. Learn more about Dr. Shah.

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“…make sure they really understand their scan and what stage they are, and how that impacts the treatment that the doctor is offering.”

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How Are Bispecific Antibodies Being Used in Diffuse Large B-Cell Lymphoma Treatment?

Transcript:

Lisa Hatfield:

I know as a blood cancer patient, my number one question is, what stage do I have and what is my prognosis? So can you explain the staging system a little bit, I think it’s called the Ann Arbor staging system for DLBCL and then maybe prognoses that you may or may not feel comfortable giving to each patient.

Dr. Nirav N. Shah:

Yeah, so lymphoma is a little bit different, because it’s a blood cancer that involves lymph nodes, and so how we stage it is based on the location and the number of lymph nodes involved, if, for example, you had one lymph node in your neck, and that’s all you had, we would consider you to have stage I diffuse large B-cell lymphoma. If you had more than one lymph node, but on the same half of the body, thinking of your diaphragm as sort of a midpoint, we would then consider you to have stage II disease. If you have lymph nodes on both halves of the body, we would then consider you to have stage III disease, and if you have organ involvement, so bone marrow involvement, liver involvement, kidney involvement or lung involvement, we consider those patients to be stage IV.

Now, to a certain degree, the higher the stage, the worse the prognosis, but as I stated earlier, even patients with stage IV lymphoma can be cured, and that’s different than other cancers, right? When we think about stage IV colon or stage IV breast, many of those patients, we actually tell them that they’re in a non-curative setting, and so while the prognosis for stage III and IV is a little bit worse than those patients who have stage I to II disease, I do try to focus on that we do treat with curative intent, and we do alter our treatment regimens according to the stage of disease that they present with, and so my activation tip for patients in this setting is to make sure they really understand their scan and what stage they are, and how that impacts the treatment that the doctor is offering. 

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How Is Diffuse Large B-Cell Lymphoma Explained to a Newly Diagnosed Patient?

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How Is Diffuse Large B-Cell Lymphoma Explained to a Newly Diagnosed Patient? from Patient Empowerment Network on Vimeo.

How do diffuse large B-cell lymphoma (DLBCL) experts explain this cancer to newly diagnosed patients? Expert Dr. Nirav Shah shares his perspective on how he leads patients through their diagnosis and treatment phases and key points that he shares to educate his patients.

Dr. Nirav Shah is an Associate Professor at the Medical College of Wisconsin. Learn more about Dr. Shah.

[ACT]IVATION TIP:

“…learn as much as they can about this diagnosis and take notes, because I know that often patients in that first visit don’t really register everything. Just because they’re feeling overwhelmed.”

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Why Is Clinical Trial Participation Vital for Diffuse Large B-Cell Lymphoma Patients

Transcript:

Lisa Hatfield: 

Okay. So, Dr. Shah, you have a patient that comes into your office newly diagnosed with DLBCL, maybe from their…or they’ve heard it from their primary care provider, they understand, they looked it up on the Internet, diffuse large B-cell lymphoma, they see the lymphoma, I would anyway, I’d see lymphoma, and I know it’s cancer. What’s included in your initial evaluation, how do you explain in basic terms to a newly diagnosed patient what DLBCL is? 

Dr. Nirav N. Shah: 

Yeah, great question, Lisa. I think that any time somebody gets that diagnosis with a cancer label on it, it’s incredibly overwhelming, and so what I try to do when I see my new patients is first simply just learn about them. How did this come about, what symptoms led to this diagnosis? Learn about their past medical history, which impacts how I might treat them and what options I’m going to give them, and sort of learn about who they are a little bit, learn about their family, what they do for a living, because I think those are important values to know about your patients, when trying to make a treatment decision.

What I try to explain to these patients is that DLBCL, yes, it is a cancer. Yes, it is, unfortunately, an aggressive cancer, one that can be very rapidly growing, but unlike a lot of cancers, it is a curable type of cancer, and I really try to highlight that like all cancers, unfortunately, not every single patient is cured with diffuse large B-cell lymphoma, but initially, I think there’s reason to have optimism and hope because the goal is, for me, when I meet a new DLBCL patient to provide a curative intent treatment approach for them.

As a part of that initial evaluation, we need to know more about where their disease is and in lymphoma. We often use a PET-CT, which is a special type of scan that sort of lights up areas that can be involved with lymphoma. In some cases, we do a bone marrow biopsy, although that is less indicated now because of how good the PET scans are, and then we talk about other testing, a lot of the chemotherapies can cause problems to your heart, so we often do an ultrasound of your heart to make sure it’s healthy enough to be able to tolerate some of the regimens that we consider for this disease, and then we talk about access in terms of how are we going to get the chemotherapy into the patient, and whether or not they would need a device like a port. But the main focus of the conversation is explaining the disease, teaching about the disease and focusing on that unlike other cancers, even stage III or IV diffuse large B-cell lymphoma is a curable entity, and the key is moving promptly getting the workup done in an efficient but complete manner and then initiating a treatment plan. 

Lisa Hatfield:

Right, thank you. And if you had one tip for patients when they first come in, what would you tell this patient that’s coming to see you in? 

Dr. Nirav N. Shah:

Yeah. I think my activation tip would be to learn as much as they can about this diagnosis and take notes, because I know that often patients in that first visit don’t really register everything. Just because they’re feeling overwhelmed.

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[ACT]IVATED DLBCL Resource Guide

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Tools for Accessing Quality Prostate Cancer Care

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Tools for Accessing Quality Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What factors could impact a prostate cancer patients access to quality, affordable care? This animated video reviews common obstacles and provides tools and resources to help address barriers to care.

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Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Anthony: 

Hi! I’m Anthony, and I’m living with advanced prostate cancer. This is Niki, my nurse.  

Just like prostate cancer doesn’t behave the same way in every patient, each prostate cancer patient has different factors that could impact their access to quality, affordable care. 

Niki: 

Exactly, Anthony. There are obstacles that may affect their potential to manage their cancer.    

These barriers, which are also called health disparities1, are complex and may include things like:  

  • Not having health insurance – or having limited insurance. 
  • Experiencing racism and discrimination. 
  • Language barriers if English is not the language you are most comfortable with2. 
  • Cultural barriers. 
  • Experiencing financial constraints. 
  • A lack of sick time or paid time off in the workplace. 
  • Living in a remote or rural area with limited access to care. 
  • Or, a lack of education or health literacy. 

Anthony: 

And overcoming or addressing these barriers is the goal of health equity.  

Niki: 

Right! EVERYONE should have the access to quality care. And while it isn’t possible to solve these problems overnight, there are resources and support services to help people with prostate cancer. It is important to identify and to discuss your barriers with your healthcare team as they are unique to each individual patient. 

Anthony: 

First and foremost, as we’ve mentioned in prior videos – don’t hesitate to speak up if you feel you are receiving unequal care. You can consider changing doctors if you don’t feel you’re receiving fair treatment, or if you’re not comfortable with your team. 

But the burden to access better care shouldn’t fall on you. Your team is there to help, right, Niki? 

Niki: 

That’s what they are there for! And the best place to start is by reaching out to a nurse navigator or social worker on your team. They may work with you and identify any challenges in your way and offer support resources to guide you in the right direction.  

Anthony: 

Exactly – my social worker helped me find an organization that provided transportation to and from my treatment appointments.  

Niki, are there other services that a nurse navigator or social worker help you connect with? 

Niki: 

Absolutely – let’s walk through some examples: 

  • There are resources that can help with the financial strain of cancer care. Patient assistance programs are in place for people who don’t have health insurance or who are underinsured. They are managed by government agencies, pharmaceutical companies, and advocacy groups; and, in some cases, these programs can help cover the cost of medications or provide them at a discounted rate.
  • Team members who provide emotional support are available to help you such as a social worker, counselor, therapist, or psychologist. 
  • If language is a barrier, translators can be made available to join appointments with you, so you can actively participate in your care discussions and decisions.  And you can ask for materials in the language you are most comfortable with. 
  • And if your job is affecting your ability to get care, many advocacy groups have resources that can support you in advocating for your rights in the workplace. 

Anthony: 

Those are all wonderful support services, Niki. 

I also want to add that if you are having trouble understanding your disease, advocacy groups have excellent materials in patient-friendly language. Download the guide that accompanies this video for a list of recommended organizations. 

Niki: 

That’s right. And, many medical centers have patient advocates available to help you communicate with your team, so you can get the care you need and feel confident in your decisions. Remember, you are not alone! 

We hope this video helped you feel more empowered to ask for resources. Thanks for joining us! 

Anthony: 

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

Prostate Cancer Care Partners: Getting the Support You Need

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Prostate Cancer Care Partners: Getting the Support You Need from Patient Empowerment Network on Vimeo.

 What do care partners need to know to help care for their loved one AND themselves? This animated video reviews the role of a care partner, discusses steps for supporting a loved one and provides tips for maintaining self-care.

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Transcript: 

Anthony: 

Hi! I’m Anthony, and I am living with advanced prostate cancer. This is my nurse, Niki.  

And this is my wife, Jane. She’s not just my wife, she’s also my care partner. From helping with my appointment schedule to communicating with my healthcare team, she works with me to manage my prostate cancer. 

Jane: 

And many of you may be care partners like me. The goal of this video is to help you understand your role and to gain tools to help you support your loved one in their cancer journey. And that includes prioritizing your own self-care.  

Niki, we’ve talked about some of the things I do to help Anthony, but how would you describe the role of a care partner?  

Niki: 

A care partner is someone who works with their loved one on their care every step of the way – from diagnosis to survivorship.  

It’s important to mention that anyone can play this role – friend, family member, or loved one – whomever you trust with supporting your health.  

Jane: 

And there isn’t a single way be a care partner. You can provide support in a way that feels comfortable and natural to you. 

Niki, what are some of the ways a care partner can help?   

Niki: 

Yes – let’s review a few steps. Care partners can assist by: 

  • Learning about your loved one’s prostate cancer, so you can feel confident in participating in conversations and decisions. You can ask their healthcare team for educational resources. 
  • And participating in doctors’ appointments by taking notes and requesting post-visit summaries so that you can review the information presented. 
  • Next, helping your loved one access and use their patient portal and maintaining schedules and organizing medical records. 
  • Listening to your loved one and assist in weighing the pros and cons of care decisions. 
  • And monitoring your loved one’s emotional health. 

Jane: 

That’s a great point, Niki. Sometimes a care partner will notice that their loved one is feeling low or acting differently before they notice anything themselves. Care partners can help communicate these issues to the healthcare team, and can even reach out to a mental health professional or social worker to help.  

Niki: 

And that leads me to the next important step that many care partners often overlook: Taking care of yourself.  

Anthony: 

Right – and as we experienced firsthand, this is essential. Jane struggled with making time for herself after I was diagnosed, and it negatively impacted her health.  

Jane: 

I was totally drained. But adding time for myself on the calendar and keeping up with my self-care appointments made me feel better. What else can you do? 

  • First, prioritize your health by scheduling and keeping your OWN health care appointment. 
  • Continue doing the activities that you enjoy – there are ways to make time in the schedule, even if it doesn’t seem like it.   
  • Find and use strategies that work for you to manage stress, like exercise, reading a book, or anything you find relaxing. Even a short walk with a friend can have a big impact. 
  • And make a list of tasks you can pass off to friends and family members who offer to help.  

Niki: 

That’s great advice, Jane. I’ll also add that caring for a loved one can be challenging – it’s normal to feel a range of emotions. If you’re feeling overwhelmed, talking with someone about how you’re feeling can make a difference. And speaking candidly and openly with other care partners in a support group setting can also provide comfort and peace of mind. 

Just like Anthony sought the advice of a counselor and social worker, it’s important that Jane find that support SHE needs as a care partner. 

Jane: 

We hope this video helped you gain tools and strategies for helping support a loved one – and yourself. 

Anthony: 

Download the guide that goes with this video to review what you learned.  

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

Living With Prostate Cancer

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Living With Prostate Cancer from Patient Empowerment Network on Vimeo.

What follow-up care is important for people with prostate cancer? This animated video discusses support and tools for managing life with prostate cancer.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

 Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

 Tools for Accessing Quality Prostate Cancer Care

Transcript: 

Niki: 

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

Anthony: 

Thanks for joining us!  

In this video, we’re going to discuss tools for managing life with prostate cancer.  

Niki:  

Living with prostate cancer means that patients will be monitored for signs that the cancer may be progressing, and assess if it is time to treat the cancer or consider a different treatment plan.   

Anthony:  

But for all patients, an important part of living with prostate cancer is follow-up care. This may include:  

  • Disease monitoring and managing symptoms and side effects, 
  • As well as emotional support. 
  • And, in some cases, creating a survivorship plan with your team.  

Niki:  

Let’s start with disease monitoring: This may include regular exams and testing to keep an eye on your disease progression or recovery. And your individual situation and risk will determine the frequency of your appointments. 

Anthony: 

And for patients like me who have had treatment, managing short and long-term side effects is an essential part of living with prostate cancer.  

One issue that can be challenging for some prostate cancer patients is the impact of treatment on a patient’s sexual function and self-image.  

Niki: 

That’s right, Anthony. It’s important to note that there ARE options that may help manage certain side effects, but you have to talk about them with your healthcare team. While bringing up sexual side effects or bladder control issues to your provider may be difficult, it’s the only way your team can assist you.  

Anthony: 

In my case, I found it easier to communicate my sexual issues in writing, using the patient portal. Plus – don’t forget that care partners can be a resource to help bring up difficult topics. 

Niki: 

Exactly – utilize your resources and communicate in a way that you feel most comfortable! 

And, as we mentioned, there can also be emotional side effects for men living with prostate cancer. Patients may feel stressed about their diagnosis or anxious about their cancer returning or progressing. Working with a health professional like a social worker, counselor, therapist, or psychologist may help reduce anxiety and worry.  

Anthony: 

Right – the other approach that really helped me emotionally was participating in a support group. 

Support groups allow men to meet and interact with others who are living with prostate cancer and provide a platform to share experiences and information. In a support group setting, it may be easier for men to share details that they don’t necessarily want to share with loved ones.  

Niki: 

That’s a great point, Anthony. Studies show that participating in a support group can help cancer patients cope with anxiety and depression.  

Anthony: 

It certainly encourages me to know that other men are facing similar challenges. While my support group meets in person, there are online options for people who prefer to connect in a virtual setting.   

Niki: 

But as much as it can be reassuring, the support group format isn’t for everyone. Talk to your social worker or counselor about additional support options to find an approach that feels most comfortable to you.  

Anthony: 

Now that we’ve walked through disease monitoring and resources for emotional support, let’s talk about survivorship. Niki, what is a survivorship care plan?  

Niki: 

Sure. A survivorship care plan organizes your follow-up care. It may include: 

  • Information about the treatment you received. 
  • A follow-up schedule for exams and tests. 
  • A list of potential symptoms and side effects. 
  • And lifestyle recommendations to establish and to maintain healthy habits.  

Your healthcare team, along with a care partner, can help you develop and stick to a plan. 

Anthony: 

That’s great advice, Niki. Now that we have learned some tips for living with prostate cancer, what can you do to participate in your follow-up care?  

Niki: 

  • Make sure to schedule and keep regular visits with your team – including your general practitioner – so that all aspects of your health can be monitored.  
  • Report any new symptoms that you experience – no matter how small. 
  • Next, don’t hesitate to speak up about lingering side effects – including bladder and sexual side effects – so your team can identify solutions. 
  • And ask for emotional support and resources. 
  • Finally, if it’s right for you, talk with your doctor about a survivorship care plan. 

Anthony: 

Thanks for joining us! Be sure to download the guide that goes with this video to access the information we discussed.  

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

What You Should Know About Clinical Trials

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What You Should Know About Clinical Trials from Patient Empowerment Network on Vimeo.

What do you need to know about prostate cancer clinical trials? This animated video reviews the clinical trial process and provides questions to ask your healthcare team about trial participation.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

 Tools for Accessing Quality Prostate Cancer Care

 Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Anthony: 

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

Niki: 

Thanks for joining us! 

Without medical research, advances in prostate cancer treatment can’t move forward. Throughout this video, Anthony and I are going to discuss a key part of research: clinical trials. We’ll review what they are and how they work.  

Anthony: 

Niki, what is a clinical trial exactly? 

Niki: 

Excellent question, Anthony. Clinical trials are research studies in people who have a specific condition, or are healthy volunteers, to help find new ways to treat diseases – like prostate cancer.  

Most clinical trials examine the safety and efficacy of medicines, vaccines, and other medical treatments. 

And clinical trials are the main path for cancer treatments to be approved. The U.S. Food and Drug Administration – also known as the FDA – requires that all new medicines and treatments go through the clinical trial process before they are approved. 

So, why would someone consider participating in a trial? Some people choose to participate to access a potential new medicine or treatment that’s not yet approved to see if it helps their condition. And some people want to help move research forward to help others with the same condition – while other people participate for both reasons. 

Anthony: 

That’s right – advancing research through participation is an important path to new options for treating prostate cancer.   

So, Niki – can you explain how clinical trials are designed to answer key questions? 

Niki: 

Yes, of course. Most importantly, each clinical trial has a protocol, which is a document that sets guidelines that define and outline the activities of the clinical trial as well as who may be eligible to participate. 

The early phase trials determine the safety of the treatment, and the latter phases typically examine if the potential therapy is effective. 

All along the way, the study clinic staff  – including nurses, researchers, and study doctors  –check clinical trial participants regularly to monitor for any safety concerns.  

Anthony: 

But to be successful, clinical trials require people to volunteer. And people interested in participating will have to meet the trial criteria to participate, correct? 

Niki: 

Yes, that’s correct, and this can include things like a person’s age, disease stage, prior treatments, and overall health. Remember that everyone’s situation is unique. 

Anthony: 

And people often have misconceptions about clinical trials that prevent them from considering participation. Let’s run through a few common concerns. 

For instance, some people worry that they will receive placebo – which is a non-active medicine  –  if they participate in a clinical trial. Niki, is this true? 

Niki:  

A cancer patient would never receive only the placebo without the current standard-of-care and will always be told that the trial will contain a placebo in advance of their participation. 

Anthony: 

OK, that makes sense. Some people also wonder about the risks and safety of a clinical trial.  Niki, can you share some information about this?  

Niki:  

Great question. Most importantly, research must meet ethical standards to ensure that participants are protected. There is a strict screening and testing process that occurs before a person can participate.  

And, clinical trials are voluntary  – participants have the right to leave the trial at any time.  

Additionally, there is an informed consent process, which ensures that people are fully informed about all potential risks and benefits and helps people understand their rights before taking part.  

Anthony: 

Ok. Thank you for clearing that up. Niki, what about the misconception that clinical trials are just a last-resort treatment option?  

Niki: 

They are not just a last-resort option at all, Anthony. No matter when a patient was diagnosed with prostate cancer, or where they are in their care, clinical trial participation may be an option.  

Anthony: 

So, if someone is interested in participating in a clinical trial or learning more about clinical research – where do they start?  

Niki:  

Your doctor is the best source of information. You can ask your doctor: 

  • What trials are available to me? 
  • Is there a clinical trial that you would recommend for me? Why? 
  • What are the possible risks and advantages of participating in this clinical trial? 
  • Are there costs associated with the trial, and will my health insurance help cover costs? And if not, is there financial assistance available?  
  • Where is the trial being conducted? Is there a clinical trial available to me in my local community? If the trial isn’t nearby or convenient, is there transportation and/or housing assistance? 
  • Finally, if you want to learn more about ongoing prostate cancer research and clinical trials, ask your doctor for a list of credible resources. 

Anthony:  

Be sure to download the guide that accompanies this video to access a list of these questions and to help you review what you learned. 

Niki: 

Thanks for joining us! And visit powerfulpatients.org/pc to access more videos with Anthony and me. 

Collaborating With Your Doctor on Your Prostate Cancer Care Plan

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Collaborating With Your Doctor on Your Prostate Cancer Care Plan from Patient Empowerment Network on Vimeo.

How can you engage in your prostate cancer care? In this animated video, you will learn about factors that may impact a prostate cancer care plan and tools for partnering with your healthcare team on treatment decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

What You Should Know About Clinical Trials

What You Should Know About Clinical Trials

 Living With Prostate Cancer

Prostate Cancer Care Partners: Getting the Support You Need

Prostate Cancer Care Partners: Getting the Support You Need

Transcript: 

Niki: 

Hi, thanks for joining us! I’m Niki, and I’m a prostate cancer nurse practitioner. And here with me is Anthony, who is living with advanced prostate cancer.   

Anthony: 

Throughout this video, Niki and I are going to discuss factors that may impact a patient’s prostate cancer care plan.  

And as we’ve mentioned in previous videos, it’s important to set goals with your team and understand all of your options before deciding on an approach.  

Niki: 

Right, Anthony. So, what could impact a treatment plan decision? Factors may include: 

  • Your age and overall health, including any existing conditions that you may have.
  • Disease-related symptoms may also affect your options.
  • The stage and grade of your prostate cancer and whether you need to be treated right away.
  • Test results, including genomic testing, which identifies the presence of genetic mutations in the cancer and may inform how your cancer will behave. 
  • Possible side effects, both short term and long term, may also affect your choices. 

Anthony: 

And, of course, your personal preference should guide the decision as well as how the option may impact your lifestyle. Be open with your care team about what’s important to you and be clear with your goals, including life plans and personal commitments.   

Here are some tips to take a more proactive role in your care: 

  • Talk with close family members and friends about your options. 
  • Consider a second opinion to help confirm your approach. 
  • Talk to your healthcare team about your condition and care options. And ask them for resources available to you, including financial help and emotional support, when making decisions.​ 
  • You can also visit advocacy group websites that have information about prostate cancer, treatment options, and support groups, to help you understand what’s available.​ 

Niki: 

Those are great tips! It’s also a good idea to ask your doctor what they feel is the best approach for you and why. Remember, there is no one-size-fits all approach, and what works for one person may not work for you. 

Anthony: 

Thanks for joining us! Be sure to download the guide that accompanies this video to help you review what you learned.  

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