Tag Archive for: patient advocacy

What Steps Can Patients Take to Combat Cervical Cancer Disparities?

Cervical cancer disparities persist, but how can patients help improve disparities? Expert Dr. Shannon MacLaughlan from University of Illinois discusses the value of patient advocacy, elevating patient voices, and proactive patient advice for self-care. 

[ACT]IVATION TIP

“…focus on yourself. I take care of women almost exclusively, and they’re the mamas and the sisters and the daughters, and they’re the caregivers, and they are focusing on everyone else. And now it’s time to focus on yourself and get yourself through this and then circle back, and we’ll start taking care of everybody else together.”

See More From [ACT]IVATED Cervical Cancer

Related Programs:

Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

How Does Insurance Status Impact Cervical Cancer Diagnosis?

How Does Insurance Status Impact Cervical Cancer Diagnosis?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what are the next steps in addressing the disparities you’ve identified in cervical cancer diagnosis and management, and how can patients be involved in this process?

Shannon MacLaughlan:

The most important thing that a patient can do is take care of themselves and get through your treatment successfully. You are a survivor of that cancer the moment you hear the word cancer. The moment you get that diagnosis, you are a survivor, and you focus on that. Try not to isolate yourself, because this is a team, it’s a team sport. Your medical team should have a team, and you should have a team.

Then, when you are feeling healthy, and when you are energized, I need you to spread the word. The most impactful way a patient can contribute to breaking down barriers is to start from the inside, to share your story, to talk about it. Advocacy can be as simple as going home and talking to your family about the kind of cancer that you have, how it started, what they can do to prevent it, what they can do to prevent it in their kids. Just start there, and then when we get you healthy again, then it’s time to elevate your voice.

I feel strongly that when we see disparities in outcomes related to cancer, it is the fault of the system, and it’s a little too easy and maybe not realistic to tell a patient to advocate for yourself with your doctor, because you might not have a choice in your doctors, and that’s just easier said than done. The system has to take ownership. We have to take ownership, and we have to learn from you.

And so those of us trying to break down these inequities and introduce some justice, particularly in the world of cervical cancer, we aim to elevate the voices of the people with the lived experiences and the communities who are experiencing it, because most often patients come to my office and they say, even though this was a thing, I didn’t even know we had our own ribbon. I hand out ribbons to patients with cervical cancer because they’re survivors. I need them to talk about it.

I need them to talk about it in their communities so that they know it’s a thing, and they hold us accountable. So my action item is, one, focus on yourself. I take care of women almost exclusively, and they’re the mamas and the sisters and the daughters, and they’re the caregivers, and they are focusing on everyone else. And now it’s time to focus on yourself and get yourself through this and then circle back, and we’ll start taking care of everybody else together.


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Expert Perspective | The Value of Empowering Endometrial Cancer Patients and Care Partners

 

How can patients feel empowered after an endometrial cancer diagnosis? Dr. Hinchcliff emphasizes seeing a GYN oncologist, asking questions, and bringing a care partner to appointments for support and understanding key decisions.

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

 

Related Programs:

What Questions Should Patients Ask About Endometrial Cancer Testing?

What Questions Should Patients Ask About Endometrial Cancer Testing?

Questions to Ask About Endometrial Cancer Clinical Trials

Questions to Ask About Endometrial Cancer Clinical Trials

Endometrial Cancer | What Is Personalized Medicine?

Endometrial Cancer | What Is Personalized Medicine?


Transcript:

Katherine Banwell:  

As a provider, Dr. Hinchcliff, how do you empower care partners and patients who have been diagnosed with endometrial cancer? 

Dr. Emily Hinchcliff:  

So, I think that one of the most important things about a diagnosis of cancer is to develop the relationship with your physician. I think that it is truly a partnership, and it is an incredibly important thing as you think about the next steps in your treatment. For someone who’s diagnosed with endometrial cancer – or, honestly, cancer in general – making sure that you’re seeing a cancer specialist in obstetrics and gynecology – it can actually be sometimes a little bit difficult. 

You might have gotten your diagnosis with a general OB/GYN, but it’s very important to see a GYN oncologist – a cancer-specific doctor – because we’ve actually shown that patients who see GYN oncologists are more likely to get guideline-appropriate care – so, care within what we think of as the right standard – and then they tend to do better with their cancer. So, that’s kind of the first step, is finding that doctor and developing the relationship with them.  

The second thing that I would say is that you should ask questions. Bringing people to your appointments to have an extra set of ears is always helpful. Taking notes and trying to keep track yourself of what was talked about in your appointment, I always encourage my patients to do, but really, asking questions. So, making sure that you know what those molecular tests are that your doctor is sending, making sure you know, once they’re sent, what your results were and how that might change what your treatment will be. 

Now, you don’t need to go and get a degree in biology or go to medical school. I think that that’s a lot to ask someone going through a cancer journey, but it is really important that you understand where those key decision points might be made because that allows you to feel not only like your own advocate, but that you have some ownership of those decisions and you understand why the decisions are being made in the way that they’re being made. 

How to Create a Cancer Survivorship Care Plan

 

What is a cancer survivorship care plan? This animated explainer video provides an overview of the key components of a survivorship care plan, advice for collaborating with your healthcare team when preparing for life beyond cancer, and the overall benefits of planning for survivorship.

 

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Cancer Survivorship | Ongoing Healthcare and Follow-Up

Cancer Survivorship | Ongoing Healthcare and Follow-Up

Cancer Survivorship | The Positive Impact of Peer Support

Cancer Survivorship | The Positive Impact of Peer Support

What Does Cancer Survivorship Mean?

What Does Cancer Survivorship Mean?


Transcript:

Whether you’ve just finished treatment or are years out from your diagnosis, a Cancer Survivorship Care Plan can help you, your loved ones, and your healthcare team manage your overall health. 

So, what exactly is a Survivorship Care Plan? This plan is your roadmap for the next phase of your cancer journey. It includes information about your diagnosis, prior treatments, follow-up care, and it helps you and your healthcare team monitor your long-term health. 

So, what should your Survivorship Care Plan include? Here are the key components: 

  • It starts with a treatment summary, which lists the types of therapy you received, the dates of treatment, and any complications that arose. This information allows your future healthcare providers to better understand your medical history. 
  • The plan also includes a follow-up care schedule that details regular check-ups, screenings, and tests. These appointments monitor for cancer recurrence and ensure any side effects are managed effectively. 
  • Potential long-term side effects of your treatment are also noted in a survivorship care plan. Having this information can allow you to be more aware, so you can communicate any physical changes with your team.  
  • Tips and guidelines for maintaining a healthy lifestyle are also added to the plan and may include advice on diet, exercise, and mental health support, which can all support your quality of life as a survivor. 
  • Another key component is contact information for your healthcare providers, including your oncologist, primary care physician, and any specialists you see regularly. This makes it easy to reach out when you need assistance or have questions. 

Creating a Survivorship Care Plan is a collaborative effort. Schedule a meeting with your oncologist and primary care physician to develop your plan. Here are some questions to guide your discussion: 

  • What specific follow-up tests do I need? 
  • How often should I see my healthcare team? 
  • What symptoms should I watch for that might indicate a recurrence or new cancer? 
  • What steps can I take to manage any long-term side effects? 
  • Are there specific lifestyle changes I should make to improve my health? 

Once your plan is in place, it’s time to take action. Follow your healthcare team’s recommendations and attend all appointments. So, what other steps can you take to stay proactive in your survivorship? 

  • Regularly update your plan and review it with your doctor or care team. 
  • Set health goals with your healthcare team and plan for potential challenges. 
  • You should also seek counseling to address your emotional and mental health when necessary. Keeping a journal may be helpful too. 
  • And, seek out support and resources from advocacy organizations like the Patient Empowerment Network and Cancer Support Community. 
  • It’s also a good idea to consider financial and legal aspects: Understand insurance, explore financial aid, and prepare legal documents as appropriate. 
  • Maintain a healthy diet, engage in regular physical activity and incorporate enjoyable exercises into your daily routine. 
  • Take good care of yourself – Lean on friends, family, and support groups for emotional and practical support. 

Remember, you are not alone on this journey. By creating and following a Survivorship Care Plan, you’re taking an important step toward living well after cancer. To learn more about cancer survivorship and access support resources, visit powerfulpatients.org.  

PRESS RELEASE: Patient Empowerment Network Joins the National Health Council

A New Chapter in Patient Advocacy

We are thrilled to announce that Patient Empowerment Network (PEN) has become a member of the National Health Council (NHC), a leading organization dedicated to providing a united voice for people with chronic diseases and disabilities.

This partnership marks a significant milestone in our mission to empower patients and amplify their voices in healthcare. By joining the NHC, we are aligning ourselves with a diverse community of over 160 national health-related organizations and businesses, all working towards improving health outcomes for millions of Americans.

Randy Rutta, Chief Executive Officer of the National Health Council, welcomed our organization, stating: “The National Health Council welcomes the Patient Empowerment Network (PEN) into our diverse community of members. PEN personifies the NHC motto of Putting Patients First™ and will bring a valuable perspective from the cancer community.”

Tracy Rode, Chief Executive Officer of Patient Empowerment Network, expressed enthusiasm about the new partnership: “Joining the National Health Council is a significant step forward in our mission to empower patients, their care partners, and healthcare providers. We are excited to work alongside other leading organizations to drive meaningful change in healthcare and improve patient outcomes across the country.”

This collaboration will enable us to:

  • Expand our reach and impact in patient advocacy
  • Contribute to shaping patient-centered health policies
  • Share best practices and innovative approaches in patient empowerment
  • Collaborate on initiatives that promote access to quality, affordable healthcare

As we embark on this new chapter, we remain committed to our core values of integrity, collaboration, and patient-centricity. We look forward to working alongside the NHC and its members to drive positive change in healthcare and improve the lives of those living with chronic diseases and disabilities.

Stay tuned for updates on our collaborative efforts and the exciting initiatives that will stem from this partnership. Together, we can create a healthcare system that truly puts patients first.

Read Full Press Release

Harnessing Community Resources to Support Rural Myelofibrosis Patients

How can community resources be utilized to support rural myelofibrosis patients? Expert Dr. Michael Grunwald from Levine Cancer Institute shares his perspective and how conversations with providers can be enriched.

[ACT]IVATION TIP

“…while one cannot trust everything one learns online, oftentimes online communities can point patients toward helpful questions that enrich the conversations they have with their providers.”

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See More From [ACT]IVATED Myelofibrosis

Related Resources:

Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Transcript:

Lisa Hatfield:

Dr. Grunwald, what role can community resources play in supporting rural myelofibrosis patients, and how can they be effectively utilized?

Dr. Michael Grunwald:

Thanks for that question, Lisa. I’ve found that the MPN community is very strong. Patients meet in-person at patient advocacy events sometimes. There are powerful online forums for patients to communicate and teach one another and learn from one another.

Frequently, patients have helpful advice for other patients, and it can be helpful to share experiences. While patients can’t always trust everything that they hear from word of mouth or online, I find that a lot of times patients bring to me very interesting questions about their disease and observations about their disease that are informed by connecting with other patients.

And I think that those connections are available to most patients nowadays. Most of our patients, regardless of where they live and regardless of their access to healthcare, most of them have some sort of device, whether it’s a smartphone or a tablet or a computer where they can interact with others if they are not able to find an in-person forum to meet other patients.

My [ACT]IVATION tip for this question is that while one cannot trust everything one learns online, oftentimes online communities can point patients toward helpful questions that enrich the conversations they have with their providers.


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The Potential of Generative AI to Power Patient Advocacy

Previously we looked at how generative AI tools can help patients cope with cancer.  In this article, we’ll discuss how you can leverage this technology to boost the impact of your advocacy. 

Understanding Generative AI

Generative AI is a type of artificial intelligence that learns from a large number of examples to understand how different types of content are made. Once it has learned, it can produce new, original content based on that knowledge. Examples of generative AI include ChatGPT, Google Gemini, and Microsoft Co-Pilot. Beyond text generation, AI can create images, suggest hashtags, and even draft YouTube descriptions or podcast scripts. 

Practical Applications of Generative AI for Patient Advocacy

We can use Generative AI to boost our advocacy in so many ways. Below are some ideas for you to consider.

1. Content Generation

Enhance your advocacy with AI-driven content creation tools. 

  • Idea Generation: Brainstorm topics for articles, blog posts, social media posts, or even scripts for videos and podcasts aligning with your advocacy goals. 
  • Content Drafting: Quickly generate initial drafts or outlines for your content, saving time and providing a starting point for further refinement. 
  • Language Improvement: Improve the readability, clarity, and impact of your writing with suggestions for alternative phrasing and sentence restructuring. Surfer AI Article Outline Generator (surferseo.com) is a free tool to assist with this. 
  • Headline Generation: Create engaging headlines and titles with AI-powered tools like the Free Title Generator by Semrush (www.semrush.com). 
  • Research Assistance: Gather relevant information, statistics, and references to enhance the credibility and persuasiveness of your content. (Note: The AI may cite sources that are inaccurate or do not exist, so it’s essential to verify these.) 

Example: When writing about a new treatment option, AI can brainstorm article ideas, generate an initial draft summarizing key points, and suggest studies to include.

2. Refine and Optimize Your Message

Here are some ways that AI can help you improve the quality and effectiveness of your advocacy content. 

  • Structural Guidance: Get recommendations on how to organize your content for maximum clarity. 
  • Readability: AI can suggest edits to improve readability. The Hemingway App (hemingwayapp.com) and Grammarly (www.grammarly.com) are excellent resources for this task. 
  • Search Engine Optimization: Expand your reach by incorporating AI-generated suggestions for relevant keywords, making your content more discoverable through search engines. 

Example: Use AI to improve the structure, language clarity, and flow of blog posts and articles before publishing them on your website.

3. Content Repurposing

Turn your existing content into new formats and reach new audiences to maximize its value. 

  • Blog to Video: Publish a blog post or article using a video you have already produced, expanding the reach of your content. Using tools like Video to Blog (www.videotoblog.ai) can streamline this process. 
  • Blog to Social Media: Distill key points from your blog posts into eye-catching social media snippets, infographics, or short videos. Lumen5 (www.lumen5.com) can transform your blog posts into engaging short videos, automatically extracting key points and pairing them with relevant visuals and music 
  • Podcast to Articles: Repurpose podcast episodes into written articles or summaries to expand your content’s lifespan. Try a tool like Podium (www.hello.podium.page) that transcribes your podcast and helps you turn the transcript into engaging articles. 
  • Long-form to Short-form Content: Extract highlights, quotes, or statistics from longer pieces and turn them into impactful social media posts or email newsletters. TLDR (www.tldrthis.com) is a browser extension that automatically summarizes articles, extracting key points and generating concise summaries. 
  • Data to Visuals: Transform raw data into informative infographics or charts, making complex information more understandable and shareable. Vizly (www.vizly.fyi) is an AI tool that creates interactive data visualizations, and you can try it out for free. 

Example: Take a webinar on advancements in cancer research and repurpose it into a series of short social media videos explaining key findings, blog posts highlighting patient stories, and an infographic summarizing breakthrough treatments.

4. Design Eye-Catching Visuals

Beyond text, generative AI can also help you create visual impact. 

  • Generate Custom Images: While advanced tools like DALL-E and Midjourney offer powerful text-to-image capabilities, free alternatives like the insMind AI Image Generator  (www.insmind.com)  provide a great starting point for those without access to paid tools. 
  • Enhance Existing Images: Improve the quality and style of your photos with AI-powered editing tools such as Canva (www.canva.com) and Craiyon (www.craiyon.com). 
  • Create Graphics and Infographics: Easily design informative infographics or engaging social media graphics using AI-assisted templates and tools like Canva or Visme (www.visme.co). 
  • Accessibility Features: Generate descriptive captions or alt text, making your posts more accessible and SEO-friendly on social media. SEOWriting.ai (wwwseowriting.ai) is an AI writing tool for SEO-optimized articles and blog posts. 

Example: Create an infographic illustrating the signs and symptoms of breast cancer.

5. Social Media Optimization

Maximize and optimize your social media impact in the following ways: 

  • Instagram Story Ideas: Brainstorm creative concepts for your Instagram stories and visually appealing ways to present your story for maximum impact. 
  • Hashtag Suggestions: Identify trending or niche hashtags that will help your posts reach a wider and more relevant audience. 
  • Optimal Posting Times: Use AI to analyze your audience’s activity patterns and determine the best times to post for maximum visibility and engagement. 
  • Video Storyboarding and Scripting: Develop storyboards for social media videos and generate a video script using a tool like Invideo (www.invideo.io). a free video editor that transforms text into videos.  
  • Podcast Scripting: Streamline podcast creation by using AI to generate scripts. Tools like HearTheWeb (www.heartheweb.com) can even transform text into dialogue-style podcasts (HearTheWeb offers one free episode, then starts at $15/month for 5 episodes). 
  • YouTube Optimization: Use Google’s AI tool, Gemini, to create YouTube descriptions and concise summaries to boost video discoverability and viewer engagement. 

Example: Generate a series of Instagram stories that highlight patient stories and use AI-suggested hashtags to amplify visibility and engagement.

6. Audience Engagement Tools

Foster engagement with your audience in the following ways: 

  • Polls and Surveys: Gather insights, opinions, and experiences from your followers with interactive polls and surveys. 
  • Challenges and Campaigns: Spark interest and action by developing AI-generated ideas for social media challenges or health-related campaigns that resonate with your audience. 
  • Interactive Content: Create quizzes, interactive maps, or other engaging formats that encourage active participation. 
  • Live Q&A Sessions: Host virtual Q&A sessions with AI-powered chatbots or moderators to answer questions in real time and foster a sense of community. 

Example: Launch a TikTok challenge encouraging healthy lifestyle choices among patients, using AI-generated campaign ideas and interactive content to drive participation and awareness. 

How to Get The Most from Generative AI

Generative AI is a powerful tool, but like any tool, its effectiveness depends on how you use it.  The more precise and detailed your instructions, the better the results. Instead of vague requests, give the AI a clear direction. For example, rather than simply asking for a “blog post about patient advocacy,” specify a working title, the intended goal (e.g., to educate, inspire, or mobilize), the target audience, and a structured outline of key points. 

Ethical Considerations

Generative AI offers immense potential to enhance your advocacy efforts, amplifying your reach and streamlining tasks. However, to harness its power responsibly, it’s imperative to prioritize accuracy, transparency, and authenticity in its use. 

To re-iterate, always thoroughly fact-check AI-generated content to avoid spreading misinformation.  Be upfront about your use of AI tools. In full disclosure, while I used ChatGPT to outline this piece, the content is shaped by my own expertise and passion for the topic.  

Finally, remember, that generative AI is a tool to enhance your work, not replace your unique voice and perspective. AI-generated content should serve as a springboard for ideas,  allowing you to focus your time and energy on developing a message that is authentically yours. By infusing your content with personal stories, and lived experiences you can create authentic connections with your audience ultimately strengthening the impact and resonance of your advocacy messages. 

Dr. Megan Haymart: Why Is It Important for You to Empower Patients?

Dr. Megan Haymart: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients? Expert Dr. Megan Haymart from the University of Michigan discusses the role of shared decision-making, how educating patients changes their approach to treatment options, and the benefits of taking more control in their care decisions.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Radhika Gogoi: Why Is It Important for You to Empower Patients?

Dr. Jeanne Palmer: Why Is It Important for You to Empower Patients?Dr. Jeanne Palmer: Why Is It Important for You to Empower Patients? Dr. Nicole Rochester: Why Is It Important for You to Empower Patients?

Dr. Nicole Rochester: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Megan Haymart:

So for thyroid cancer, I think it’s important that most patients recognize that there’s a role for shared decision-making. So many times there’s preference-sensitive decisions, meaning there’s no right or wrong answer. And so a patient can think about the risks and benefits and what their priorities are and be involved in the decision-making process. And so I think it’s important to empower patients with knowing, one, you have a choice, so it’s not just me telling you what you need to do, I’m trying to like lay out all of the options, risks, benefits of all the different paths.

And then you have a choice in regards to your management, a choice in regards to your surveillance, and then within that, you should also feel that you have freedom to ask the questions that you want either during the clinic visit or by a patient portal afterwards, by, you know, or do you use reliable websites to find the information that you need. And so I think letting patients know that it’s a shared decision-making process, that they’re involved really empowers them to make a choice that they’re satisfied with and that they don’t have regret with down the road.

Dr. Jeanne Palmer: Why Is It Important for You to Empower Patients?

Dr. Jeanne Palmer: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients? Expert Dr. Jeanne Palmer from Mayo Clinic discusses how patient empowerment benefits patients, the importance of understanding a rare disease, and empowerment methods she finds especially helpful for her patients.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Radhika Gogoi: Why Is It Important for You to Empower Patients?

Dr. Michael Kelley: Why Is It Important for You to Empower Patients?

Dr. Michael Kelley: Why Is It Important for You to Empower Patients?

Dr. Nicole Rochester: Why Is It Important for You to Empower Patients?

Dr. Nicole Rochester: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Jeanne M. Palmer:

So I think one of the most important things that I can provide is to make sure I provide good education so they have a good understanding of the pathophysiology of their disease, they have a good understanding of what they’re going to expect with regards to symptoms as well as what benefits they may or may not get from different therapies. It’s a very anxiety-provoking thing to have a rare disease that is generally something that we can’t always offer a cure for and something that they will have to live with for a very long period of time.

So I think understanding that and understanding what the expectations may be is really important. And I really can’t stress enough the importance of some of these patient advocacy groups that really help provide excellent education programs. I tell my patients to go to them whenever possible, just because then they don’t just have to hear me talking about something, they can hear multiple other people. Because sometimes just a difference in a nuance in the way you say something, it’ll all of a sudden click with the patient. And fully recognizing that as much as I try…sometimes I’m not able to convey that. When they hear it in a different way, it can really help.

Also encouraging second opinions. I always encourage patients. I say, “If you have any questions, get another opinion, I will help facilitate it,” to really make sure that they get the information that they need and they feel comfortable with their diagnosis and their plan of care. I think that goes a long way in helping alleviate some of their concerns, especially when you say, “Okay, well, why don’t you see this other person? They’re great. I know this person.” Then they know that, “Hey, we’re all on the same page. We’re all on the same team, working together to make sure that we can treat this patient as best as we can.”

Expert Insights on Overcoming Barriers to Myelofibrosis Care

Expert Insights on Overcoming Barriers to Myelofibrosis Care from Patient Empowerment Network on Vimeo.

How is myelofibrosis care impacted by barriers, and what are solutions for healthcare providers to overcome them? Experts Dr. Raajit Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne Palmer from Mayo Clinic discuss different access barriers that impact quality of care and ways that healthcare providers can help close disparity gaps for patients.

See More from EPEP MPNs

Related Resources:

Expert Insights on Overcoming Barriers to Myelofibrosis Care

Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients


Transcript: 

Dr. Nicole Rochester:

So we’re going to start by diving into the nuanced challenges and practice barriers in myelofibrosis care. We know that some of those factors may be related to socioeconomic factors and health disparities. So, Dr. Rampal, I’m going to start with you. What are the primary barriers in myelofibrosis care, and how might these barriers impact accessing effective treatment for myelofibrosis?

Dr. Raajit K. Rampal:

Well, I think it’s broad in the sense that, if we think about access to care, I think that part of the problem lies in underdiagnosis, and that is really on the end of the spectrum of access to primary care I’d say, are people getting in and getting regular blood count checks, the things that are going to tip somebody off that, you know, if somebody has a hematologic issue or problem, I think that is a big part of the entire discussion and spectrum here. And then the second thing is that this is a rare disease, and there are a handful of specialists throughout the world who deal with this.

And so making sure that patients have access to expert care, which is not to undermine the quality care that’s provided in the community, but this is more a question about do patients have access to, you know, clinical trials or to the most updated knowledge, and that to me really revolves around people being able to have access to tertiary care referral center who has a myelofibrosis expert. So I think those are some of the barriers, at least in my mind.

Dr. Nicole Rochester:

Thank you so much. And, Dr. Palmer, I’d love to get your insight as well. From your perspective, what are the primary barriers to accessing effective treatment, and what strategies can be implemented to overcome these barriers?

Dr. Jeanne M. Palmer:

So I agree with everything that Dr. Rampal said, but I’d also want to add to it, like many people would have to travel a distance to see that specialist. And so one of the ways that I’ve been able to try to overcome that thus far is by telemedicine. So being able to have that ability to contact somebody over the Internet, I think, especially if they’re getting very good care locally, just being able to provide that sort of expert additional advice about how to manage their disease, what different options are available.

Fortunately, this is a space where new drugs are coming pretty rapidly. So I think that having the ability to be able to weed through all of these different drugs, understand the pros and cons of them, and advise patients is good. And if they can’t make it to see you, then they can’t get advice about the medications nor can the providers. Because recognizing this is such a rare disease, a community provider has a lot to keep track of. So trying to keep track of something that impacts so few patients is hard to do. I think the other big barrier is cost and support for getting these medications.

These medications are all, unfortunately, quite expensive, and new drugs that are coming down the horizon will probably be so as well. So being able to find the right support for them, even when insurance covers it, it’s sometimes with a very large copay. So trying to handle access to these drugs, not only in the knowledge of which drugs to give, but also the ability to be able to pay for them.

Dr. Nicole Rochester:

Wonderful. Thank you both for elucidating some of those barriers. And you both mentioned that this is a rare disease and, Dr. Rampal, you also talked about expert care. And so I’d love to know, and I’ll start with you, Dr. Rampal, how do referral patterns impact treatment access in myelofibrosis and particularly for underserved populations?

Dr. Raajit K. Rampal:

This is a really interesting question, because things are changing in the sense that, I think at least in the New York area, but probably true elsewhere, there’s increasing consolidation of healthcare as hospital systems buy up smaller practices. And that means that referral patterns are going to change and are changing. There’s more of an impetus for docs to refer patients within their own health network. And they may or may not have access to expert care within their network. I think that’s one thing to keep in mind.

And the second is that, the elephant in the room here is that you have to have insurance to get into these networks. You have to have the right insurance. And do all of these big academic tertiary centers accept every kind of insurance? The answer is no, they don’t. So right off the bat, you have a systemic barrier, but then with the changing referral patterns, and I think likely certain insurances being more likely to be accepted in certain networks, you’ve already kind of fragmented the entire system. So, is there a streamlined way for patients to get in? Right now, I think the answer is no, there are a lot of barriers.

Dr. Nicole Rochester:

Thank you, Dr. Rampal. Dr. Palmer, do you have anything to add? And also if you can touch on what healthcare providers should be aware of and what they can pay close attention to with regard to these barriers that you and Dr. Rampal have discussed?

Dr. Jeanne M. Palmer:

Right, so I completely agree with everything he said. I think it’s a real challenge, especially as you parse apart these different healthcare systems. I think one of the important things for patients to know and what providers can help with is providing sort of access to some of the patient advocacy sites. On these patient advocacy sites, they can find the name of different providers, and sometimes that helps them call in to get a referral. Now, the insurance coverage is another challenge that’s a lot harder to manage. But I think one thing that patients can do is if within their own network, there isn’t an expert, at least being able to go to these patient advocacy sites, finding out who they should, who they can go see.

Dr. Nicole Rochester:

Wonderful, thank you. Well, we’ve been talking about how certain populations may experience more barriers. And certainly we know that’s at the root of health and healthcare disparities. So I want to move and start to talk a little bit about cultural competency. And I’ll go back to you, Dr. Rampal, what role do you believe cultural competency plays in addressing barriers in myelofibrosis care?

Dr. Raajit K. Rampal:

Yeah, I think one of the major tasks is to be aware that cultural competency is important. That to me is sort of the first step in everything. And in making this a little bit more granular. Not every patient approaches their disease or their diagnosis in the same way. And a lot of that is informed by their cultural beliefs, their community. And this is something, you know, living in a place in like New York where we see people from all different cultures, this is a striking thing because there are people who, for example, you know, they come from, you know, strong religious faith backgrounds. Their approach to things is different.

In some respects, they approach the disease and the need for treatment in a very different way than people who come from other cultural communities or those who are, let’s say, even not coming from a religious setting. But if you’re not aware of those and you try to put the same sort of treatment paradigm on all patients, you’re going to run into conflicts at some point. So I think to me, the first step is to be aware that these things influence how people perceive their disease, how they perceive the treatments or their desire to even be treated. But if you’re not aware of those things at the outset, then you’re going to run into those issues, I think.

 


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What Can Patients Do to Access Better Colon Cancer Care?

What Can Patients Do to Access Better Colon Cancer Care? from Patient Empowerment Network on Vimeo.

What can patients do to access quality colon cancer care? Dr. Suneel Kamath shares tips on how to advocate for yourself, the importance of quality care versus convenient care, and colon cancer resources.

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

Download Resource Guide

See More from DETECT Colon Cancer

Related Resources:

Why Are Colon Cancer Cases in Young People on the Rise?

Why Are Colon Cancer Cases in Young People on the Rise?

What Are Common Colon Cancer Health Disparities?

What Are Common Colon Cancer Health Disparities?

What Are Colon Cancer Screening Guidelines?

What Are Colon Cancer Screening Guidelines?


Transcript: 

Katherine:  

If patients feel like they’re not receiving good care or they feel like they’re being treated unfairly, what steps should they take to access better overall care?  

Dr. Kamath:  

That’s a touchy one. It makes me sad that that even happens, but it does. I would say just never be afraid to be an advocate for yourself. To me, it’s your life and the consequence of bad healthcare, unfortunately, is not going to be on those providers. It’s going to be on you. Unfortunately, I do hear from a lot of people they worry about burning bridges, or annoying someone, or angering the doctors that they’re working with. I would tell them, “Don’t worry about that.” I don’t think people need to care about my feelings or the doctor’s feelings about the situation. 

You need to make sure you’re getting the best healthcare possible. Always feel comfortable getting a second opinion, going to a bigger center. I always recommend go to the main hospitals in your area. In the U.S. especially, I think we’re too focused on convenient healthcare and not the quality of the healthcare. I would definitely advocate, even if it takes you an hour to drive downtown to Duke or Johns Hopkins in your area, or the Cleveland Clinic, or the Mayo Clinic, or whatever, it’s worth that time compared to the person who just might be five or 10 minutes from you.  

Katherine:  

Right. Are there resources available now that might be useful for people who need, want more information?  

Dr. Kamath:  

Yes, are you talking about things that they could find online or read about? It’s in terms in of accessing care or just generally about … 

Katherine:  

Yeah, accessing care.  

Dr. Kamath:  

Yeah. I think there, again, I would go back to the American Cancer Society. The other ones that are really great, too, are – for colorectal cancer, especially, there are a number of really great patient advocacy organizations. The two that are coming to mind are the Colorectal Cancer Alliance and then Fight CRC. Both of them have phenomenal resources as far as patients who have gone through the whole journey and various phases of the journey. What I love for them, too, is usually there’s somebody that can represent your area in those settings, in those support groups and whatnot.  

I definitely think they’re a great resource in helping people find out who are the best doctors in your area. How did you get connected with them? Unfortunately, we all have phone numbers online and whatnot to find us. But we all know when you call them you end up in this interminable loop, it seems like, sometimes to get an appointment. It’s hard to navigate it all. I think a lot of times these patient advocacy organizations can be great bridges to both finding who the right people are and how do you best get in with them.  

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers from Patient Empowerment Network on Vimeo.

Explore the complex challenges and barriers in myelofibrosis care with Dr. Raajit K. Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne M. Palmer from the Mayo Clinic. Gain insights into therapeutic inertia, effective strategies for overcoming care barriers, and enhancing patient-centric care to improve myelofibrosis outcomes.

Related Resources:

Tracking MPN Symptoms: Strategies for Managing Disease Burden

Tracking MPN Symptoms: Strategies for Managing Disease Burden

Are There Non-Pharmacologic Strategies for Managing Myeloproliferative Neoplasms

Are There Non-Pharmacologic Strategies for Managing Myeloproliferative Neoplasms?

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients


Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients EPEP program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers. In this healthcare provider roundtable, we are discussing breaking through myelofibrosis practice barriers.

We’re going to talk about the nuanced challenges and practice barriers in myelofibrosis care. How do patient socioeconomic factors impact treatment access? We will look at gaps in the field and overcoming practice barriers such as lack of awareness, outdated practices, and therapeutic inertia, while also addressing solutions to enhance patient-centric care in myelofibrosis for improved patient outcomes. 

It is my privilege to be joined by Dr. Raajit K. Rampal of Memorial Sloan Kettering Cancer Center. Dr. Rampal is a clinical translational investigator whose research focuses on the genetic events that contribute to the development and progression of leukemia and myeloproliferative neoplasms. Thank you so much for joining this EPEP program, Dr. Rampal. 

Dr. Raajit K. Rampal:

Thanks so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

It’s also an honor to be joined by Dr. Jeanne Palmer, hematologist at Mayo Clinic. Dr. Palmer’s interest is in identifying novel targeted therapies for patients with myeloproliferative neoplasms. She strives to offer innovative therapies to patients in all stages of their disease through clinical trials. Thank you so much for joining us, Dr. Palmer.

Dr. Jeanne M. Palmer:

Thanks for having me.

Dr. Nicole Rochester:

So we’re going to start today’s discussion by diving into the nuanced challenges and practice barriers in myelofibrosis care. We know that some of those factors may be related to socioeconomic factors and health disparities. So, Dr. Rampal, I’m going to start with you. What are the primary barriers in myelofibrosis care, and how might these barriers impact accessing effective treatment for myelofibrosis?

Dr. Raajit K. Rampal:

Well, I think it’s broad in the sense that, if we think about access to care, I think that part of the problem lies in underdiagnosis, and that is really on the end of the spectrum of access to primary care I’d say, are people getting in and getting regular blood count checks, the things that are going to tip somebody off that, you know, if somebody has a hematologic issue or problem, I think that is a big part of the entire discussion and spectrum here.

And then the second thing is that this is a rare disease, and there are a handful of specialists throughout the world who deal with this. And so making sure that patients have access to expert care, which is not to undermine the quality care that’s provided in the community, but this is more a question about do patients have access to, you know, clinical trials or to the most updated knowledge, and that to me really revolves around people being able to have access to tertiary care referral center who has a myelofibrosis expert. So I think those are some of the barriers, at least in my mind.

Dr. Nicole Rochester:

Thank you so much. And, Dr. Palmer, I’d love to get your insight as well. From your perspective, what are the primary barriers to accessing effective treatment, and what strategies can be implemented to overcome these barriers?

Dr. Jeanne M. Palmer:

So I agree with everything that Dr. Rampal said, but I’d also want to add to it, like many people would have to travel a distance to see that specialist. And so one of the ways that I’ve been able to try to overcome that thus far is by telemedicine. So being able to have that ability to contact somebody over the Internet, I think, especially if they’re getting very good care locally, just being able to provide that sort of expert additional advice about how to manage their disease, what different options are available. Fortunately, this is a space where new drugs are coming pretty rapidly.

So I think that having the ability to be able to weed through all of these different drugs, understand the pros and cons of them, and advise patients is good. And if they can’t make it to see you, then they can’t get advice about the medications nor can the providers. Because recognizing this is such a rare disease, a community provider has a lot to keep track of. So trying to keep track of something that impacts so few patients is hard to do. I think the other big barrier is cost and support for getting these medications.

These medications are all, unfortunately, quite expensive, and new drugs that are coming down the horizon will probably be so as well. So being able to find the right support for them, even when insurance covers it, it’s sometimes with a very large copay. So trying to handle access to these drugs, not only in the knowledge of which drugs to give, but also the ability to be able to pay for them.

Dr. Nicole Rochester:

Wonderful. Thank you both for elucidating some of those barriers. And you both mentioned that this is a rare disease and, Dr. Rampal, you also talked about expert care. And so I’d love to know, and I’ll start with you, Dr. Rampal, how do referral patterns impact treatment access in myelofibrosis and particularly for underserved populations?

Dr. Raajit K. Rampal:

This is a really interesting question, because things are changing in the sense that, I think at least in the New York area, but probably true elsewhere, there’s increasing consolidation of healthcare as hospital systems buy up smaller practices. And that means that referral patterns are going to change and are changing. There’s more of an impetus for docs to refer patients within their own health network. And they may or may not have access to expert care within their network. I think that’s one thing to keep in mind.

And the second is that, the elephant in the room here is that you have to have insurance to get into these networks. You have to have the right insurance. And do all of these big academic tertiary centers accept every kind of insurance? The answer is no, they don’t. So right off the bat, you have a systemic barrier, but then with the changing referral patterns, and I think likely certain insurances being more likely to be accepted in certain networks, you’ve already kind of fragmented the entire system. So, is there a streamlined way for patients to get in? Right now, I think the answer is no, there are a lot of barriers.

Dr. Nicole Rochester:

Thank you, Dr. Rampal. Dr. Palmer, do you have anything to add? And also if you can touch on what healthcare providers should be aware of and what they can pay close attention to with regard to these barriers that you and Dr. Rampal have discussed?

Dr. Jeanne M. Palmer:

Right, so I completely agree with everything he said. I think it’s a real challenge, especially as you parse apart these different healthcare systems. I think one of the important things for patients to know and what providers can help with is providing sort of access to some of the patient advocacy sites. On these patient advocacy sites, they can find the name of different providers, and sometimes that helps them call in to get a referral.

Now, the insurance coverage is another challenge that’s a lot harder to manage. But I think one thing that patients can do is if within their own network, there isn’t an expert, at least being able to go to these patient advocacy sites, finding out who they should, who they can go see.

Dr. Nicole Rochester:

Wonderful, thank you. Well, we’ve been talking about how certain populations may experience more barriers. And certainly we know that’s at the root of health and healthcare disparities. So I want to move and start to talk a little bit about cultural competency. And I’ll go back to you, Dr. Rampal, what role do you believe cultural competency plays in addressing barriers in myelofibrosis care?

Dr. Raajit K. Rampal:

Yeah, I think one of the major tasks is to be aware that cultural competency is important. That to me is sort of the first step in everything. And in making this a little bit more granular. Not every patient approaches their disease or their diagnosis in the same way. And a lot of that is informed by their cultural beliefs, their community. And this is something, you know, living in a place like New York where we see people from all different cultures, this is a striking thing because there are people who, for example, you know, they come from, you know, strong religious faith backgrounds. Their approach to things is different.

In some respects, they approach the disease and the need for treatment in a very different way than people who come from other cultural communities or those who are, let’s say, even not coming from a religious setting. But if you’re not aware of those and you try to put the same sort of treatment paradigm on all patients, you’re going to run into conflicts at some point. So I think to me, the first step is to be aware that these things influence how people perceive their disease, how they perceive the treatments or their desire to even be treated. But if you’re not aware of those things at the outset, then you’re going to run into those issues, I think.

Dr. Nicole Rochester:

Thank you so much, Dr. Rampal. Well, we’ve been talking about the barriers that patients face. Dr. Palmer, can you speak to some of the obstacles or barriers faced by healthcare providers themselves when treating myelofibrosis patients?

Dr. Jeanne M. Palmer:

I think one of the challenging pieces, you know, I know in Arizona, we have a pretty big catchment area, because there’s not only the Phoenix metropolitan area, but there are a lot of smaller communities scattered throughout Arizona. And I think one of the issues that we have is, let’s say I want to start somebody on a new medication that potentially has a side effect of anemia or something.

Being able to manage them remotely is difficult, because a lot of times they may require a blood transfusion. Can they even get a blood transfusion where they’re at? Can they afford the 5-hour drive down to Phoenix to get that? So I think sometimes, even access to simple things, well, I guess it’s not that simple, but things like blood transfusions can be hard. Fortunately for labs, you’re often able to get them most places through various Labcorp, Quest, et cetera. But sometimes any type of infusional treatment can be really, really hard to get.

Dr. Nicole Rochester:

Thank you. Do you have anything to add, Dr. Rampal, with regard to barriers faced by providers?

Dr. Raajit K. Rampal:

No, I actually think that’s an important, that’s a really important thing. Because it depends on your area of the country and what access to resources patients have locally. If we’re thinking about this as sort of a hub and spoke model, that may be the outdated model. In other words, it’s not that people can afford to, you know, from a financial perspective or a time perspective, come into the major center and then go back. They need to get access to care locally, but you have to have the infrastructure, the healthcare infrastructure, if you will, to deliver that care. And that’s a difficult problem in many parts of the country.

Dr. Nicole Rochester:

Absolutely. Wonderful. Well, you talked about something maybe being outdated. That’s a perfect segue to our next conversation. And so I’ll start with you this time, Dr. Rampal. Can you speak to unforeseen or maybe outdated practice-related barriers that may hinder your work and that of your colleagues with regard to myelofibrosis treatment?

Dr. Raajit K. Rampal:

Yeah, I guess my broad answer to this is that things are changing rapidly and the pace of change is accelerated. In other words, when we think about myelofibrosis, the treatment paradigm probably, if you think about the last 15 years, in the early part of that, things were kind of relatively static and now they’re not as new knowledge emerges, as new treatments emerge. And the challenge here, again, speaking in general terms is, as Dr. Palmer pointed out, this is a rare disease. It’s not something that’s frequently seen by physicians in the community.

So how do you keep people up to date on something that is not the majority of what they do? It’s a very small percentage of what they see and do. And that’s an ongoing challenge. And I’m not sure there’s any perfect solution to that except for education. It’s just a question of how do you deliver that in a time-effective manner so that people can devote some time to getting up to date? But it is ultimately a good problem that things are changing rapidly.

Dr. Nicole Rochester:

Absolutely. And, Dr. Palmer, do you have any solutions or actions or things that healthcare providers can do as this treatment landscape rapidly evolves?

Dr. Jeanne M. Palmer:

I think it’s a real challenge because even when we look at sort of the dogma of like, well, what’s the response criteria? I mean, when you’re thinking of a lot of like solid tumors, you think, okay, did the tumor shrink a certain amount? Did the tumor go away? With myelofibrosis, when we think about even response criteria, it’s really challenging.

So I think I agree education is part of it, and it’s trying to figure out how to distill down the really important components of how do you manage these patients day-to-day? We can talk about the COMFORT study and the MOMENTUM study and everything else all we want to, that tested, were major studies that tested the drugs that we use, but then the nuances of how to manage them day-to-day is something that I think we could probably improve upon how we educate.

Dr. Nicole Rochester:

Thank you. So as we move on to our final topic, we’re going to start talking about collaborative care. You all have spoken about this being a rare disease, the need for expert care, the fact that not everyone has access to that expert care. And so the reality is that it’s going to take more than just experts like yourself in order to manage these patients. And so, Dr. Palmer, I’m going to start with you. What are the key components of an effective collaborative care ecosystem for myelofibrosis? And how can healthcare providers integrate these components to ensure comprehensive patient care?

Dr. Jeanne M. Palmer:

Well, I think one of the most important things is really making sure you’re having conversations with the patients, are able to sort of elucidate what’s really important to them and how they’re feeling. I think many patients actually are very aware of things that they want to or don’t want to do. And so, and then in a disease like this one, where there are lots of different options, there are also just nuances in the way you sort of treat things like, okay, do you want to take this side effect or that side effect? Or how do you want to approach this? Being able to have those conversations to really get their input on it is very important.

That’s one of the reasons I really enjoy treating this disease is because it’s not so regimented in how you do it. It becomes really a conversation, understanding how the patient’s feeling, understanding the side effects that they’re having, so you can better determine how you should continue with the therapy.

Dr. Nicole Rochester:

Wonderful. I appreciate that. And I appreciate that you brought in the patient perspective when we’re speaking about collaborative care, because, of course, they need to be involved in their part of their medical team. Dr. Rampal, what about the healthcare providers? How can you cultivate a collaborative ecosystem with other healthcare providers as you all provide care for myelofibrosis?

Dr. Raajit K. Rampal:

Part of my advice here is simple, which is to pick up the phone. And I’ll tell you why I put it that way. I think that what happens…and this is something I always emphasize to our trainees, because I don’t think this is something that’s taught. This is, as they call it, a soft skill. But there is, I think, a tendency, at least in academic centers, for people to want to ensconce themselves in the ivory tower. And that doesn’t help, because you have to communicate with the people taking care of the patients.

And the simplest way to do that is to pick up the phone and call the referring doctor who they’re seeing in the community, and say, “Listen, I saw your patient. Here’s what I think. I’d like to share the care with the patient. I can see them every six months. Please keep me updated. This is my cell phone number. Call me if there’s a problem.” That, to me, has been the most simple, effective tool to build collaborative partnerships with physicians in the community. And it’s not something that I think is taught, but we have to do that. We have to break down these barriers between specialty care or academic care and community care. I think that’s one of the best things we can do to help patients get the care they need.

Dr. Nicole Rochester:

And what a simple tool, just picking up the phone. We often try to create complex technological solutions. And you’re right. It’s just as simple as picking up the phone and having that one-on-one conversation. So thank you for adding that. Dr. Palmer, how can multidisciplinary teams be best utilized to improve outcomes in myelofibrosis care?

Dr. Jeanne M. Palmer:

So it always takes a village to treat a patient. I think that making sure that you have…that your social workers or case managers have good access to different resources to help with patients. As I said, one of the biggest challenges is paying for these drugs. So having a good team of social workers or case managers who are really able to tap into resources, so patients can get access to these drugs is really important. Making sure that you have good nursing support.

One of the things that’s really important is I can ask my nurse, “Hey, look, can you check in on this person in the next few weeks to see how they’re doing with their new medication?” And even having good APPs. I’m very fortunate to have a couple of APPs I work with who are very knowledgeable about MPN. So I don’t worry that if I’m not there to see the patient that somebody else who’s seeing the patient won’t be able to assess them in a good way. So I think having that whole cadre of people around you to support the care of that patient is critical.

Dr. Nicole Rochester:

Absolutely. And I appreciate that you lifted up not just the medical providers, but the case managers as well, particularly with some of the challenges that we’ve been talking about today. And, Dr. Rampal, do you have any specific solutions for how to achieve seamless coordination among the different specialists that may be involved in the patient’s care?

Dr. Raajit K. Rampal:

No. I think it’s a difficult problem. I’m not sure there’s a clear solution. Even the simple thing of medical record systems not talking to each other; people use different medical record systems, those things all create barriers. I think that…the only thing that I think is worthwhile is making sure that you’re actively managing this communication.

In other words, when you write a note in your electronic medical system, you’re assuming that it’s getting sent and being read by the referring physician and all of that, but that’s a passive way of thinking about this. And one has to be active. One has to make sure that if there are key things to be communicated amongst all of the people taking care of a patient, as I said earlier, a simple thing is pick up the phone or make sure you have communication about your ideas and plans for the patient so that the other people, providers involved in that patient’s care are all aware of that.

Dr. Nicole Rochester:

Thank you so much. Yeah, the electronic medical record does not sometimes live up to those expectations, which takes us back to what you said earlier, picking up the phone. It’s time to wrap up our roundtable. And I must say I have enjoyed this conversation so much. And as we bring this program to a close, I’d love to get closing thoughts from each of you.

And so I’ll start with you, Dr. Palmer. What is the most important takeaway message that you want to leave other healthcare professionals who may be listening and watching this program around how we begin to eliminate barriers in myelofibrosis care?

Dr. Jeanne M. Palmer:

Well, I think one of the key factors here is to make sure that you understand what you know and then understand what you don’t know. And there are lots of us out there who are very willing to help and support in any way we can. I think this is a really challenging disease to treat. Speaking as someone who started to treat it mid-career, it was something that I realized that it’s not just about reading papers, there are a lot of nuances to it. So really not having the fear of asking.

Also, to really tap into patient advocacy organizations. There are a number of really good organizations that provide excellent education opportunities for patients and making sure that patients are aware of those so that they can be able to do their own Google search, but not necessarily in a non-constructive fashion. So really tapping into those patient advocacy groups is really important.

Dr. Nicole Rochester:

Wonderful. And what about you, Dr. Rampal? What’s a closing takeaway message for our audience?

Dr. Raajit K. Rampal:

I think open lines of communication. I think that from the perspective of providers in the community, we want to know that you have questions. We want to make ourselves available to answer those questions. And so I would much rather be inundated with questions specific to a patient’s care than not to hear from somebody.

And then I think from the specialist side of things, we have to make ourselves available to address these questions and make ourselves accessible. So I think in as much as possible, opening up lines of communication is one of the keys to overcoming some of these barriers. Obviously, there are systemic barriers here that require systemic solutions, but on a granular level I think those are the things we can do.

Dr. Nicole Rochester:

Well, I want to thank you both. Thank you, Dr. Palmer. Thank you, Dr. Rampal. As always, this has been a very informative conversation. We talked about many of the barriers to myelofibrosis care. We talked about some of the systemic and structural barriers, but we’ve also talked about barriers that healthcare providers can overcome.

And ultimately, the take-home message for me is communication. Communication with our patients in a way that they can understand, in a way that they like to receive information, having respect for cultural differences, and communication and collaboration with each other. So again, thank you both for all of the information that you shared. And thank you all for tuning in to this Empowering Providers to Empower Patients Patient Empowerment Network Program. I’m Dr. Nicole Rochester. Thank you for watching.


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Cancer Survivorship | The Positive Impact of Peer Support

Cancer Survivorship | The Positive Impact of Peer Support from Patient Empowerment Network on Vimeo.

Dr. Kathleen Ashton and Erica Watson, a cancer survivor and patient advocate, discuss the importance of giving and receiving peer support for people with cancer and its positive impact.

Dr. Kathleen Ashton is a board-certified clinical health psychologist in the Breast Center, Digestive Disease and Surgery Institute at Cleveland Clinic. Learn more about Dr. Ashton.
 
Erica Watson is a breast cancer survivor and patient advocate.
 

Related Resources:

What Does Cancer Survivorship Mean?What Does Cancer Survivorship Mean? Cancer Survivorship | Ongoing Healthcare and Follow-Up

Cancer Survivorship | Ongoing Healthcare and Follow-Up

Becoming Empowered: Navigating Obstacles to Empowerment That Can Lead to Better HealthNavigating Obstacles to Empowerment That Can Lead to Better Health 

Transcript:

Katherine Banwell:

Dr. Ashton, what can you tell us about the importance of peer-to-peer support in cancer care and survivorship?  

Dr. Ashton:

I think peer-to-peer support is so important for survivors.  

It really gives survivors the chance to talk with other people who really understand what it’s like going through this process. So, as a professional I can tell patients the science and give them tools and what works, and their oncologists can tell them what’s important for them to do, but the lived experience is so important. So, in our group program they get some of that peer-to-peer support. And when Erica says, “Hey, it really helped me to bring someone with me to my scan,” a patient really hears that in a different way than when your professional tells them.  

So, it’s just that much more meaningful. There’s another program at the Cleveland Clinic called   4th Angel, and it’s a national program that any patient can take advantage of, and it matches you with a peer mentor.  

And they often check in by phone with each other, someone who’s been through a very similar experience, and patients often find that incredibly helpful. And many patients that move into survivorship, then they become a mentor and they’re able to help another patient.  

And that really feels good to be able to give back in that way.  

Katherine Banwell:

Yeah, that’s wonderful. Erica, you have a family history of breast cancer, so you’ve been really vigilant in your care over the years. What advice do you have for other patients and family members facing a cancer diagnosis? Where do you find your strength?  

Erica Watson:

Well, I got it from a handful of sources. I learned a lot on my faith. I talked to my family members who were diagnosed with breast cancer and that are currently living. I was not afraid to ask questions. I cried a lot. I just really leaned heavily on my medical team.  

I feel like it is so important as Dr. Ashton was saying to be able to reach out or connect with someone that has actually lived the experience, because I was one of those women. I heard it from the medical team, but they were leaning on science, and I needed someone that actually went through what I was going through.

That allowed me to understand and to trust what they were telling me. Not that I didn’t trust my medical team, but the family members or anyone else that I leaned on to support actually lived the life that I was getting ready to live, experienced what I was getting ready to experience. So, that really helped me a lot.  

Katherine Banwell:

Yeah. As you navigated care, were there any obstacles or hurdles that you faced?  

Erica Watson:

Well, the main one that sticks out to me today was as an African American woman, I didn’t feel as if I had a lot of resources that were catered to me and my needs. And so, that kind of stifled my search for research or for resources, because I didn’t have an experience with women that looked like me, that talked like me, that lived like me, that would have experienced the hair loss like I experienced, my skin changes with the sun.  

So, those were the obstacles that I faced, and it was tough. Of course, I had my family to lean on, I have my aunt my sister, but there are so many women out there that don’t have family members that have gone through breast cancer, and I feel so like it’s necessary for us to be able to see and to experience the diversity in that area. 

We make up a huge demographic, but we are just not represented the way that I feel like we should.  

Katherine Banwell:

Yeah, I absolutely agree. And I know that the medical community is trying to reverse this issue; they’re trying to make it easier and more supportive for people of all colors and races. Why do you think it’s important for survivors to actually be an advocate and help other people as they navigate cancer?  

Erica Watson:

I believe the most important reason is just so that they know that they’re not alone. We can, as a breast cancer survivor, I know it was – my first response was to just go into a shell and hide.  

I didn’t want to share it with anyone. Of course, my family did not, they would not have understood, and this was before reaching out to my sister and my aunt. But yeah, just so that we’re not alone, to know that there are other women out there that are experiencing and feeling the exact same thing that we are experiencing and feeling; the questions, the concern, the guilt, the fear, we just need to be able to know and connect in that way. So, I just – yeah, I’m so passionate about that, and that’s it.  

Katherine Banwell:

Yeah. It’s so helpful to know you’re not alone in how you’re feeling, in some of the symptoms you’re having, to know that other people have experienced the same thing is vital. 

Cancer Survivorship | Ongoing Healthcare and Follow-Up

Cancer Survivorship | Ongoing Healthcare and Follow-Up from Patient Empowerment Network on Vimeo.

Dr. Kathleen Ashton explains what a cancer survivorship care plan is, what to expect following after active treatment, available survivorship tools and resources, and she reviews follow-up care for cancer survivors. 

Dr. Kathleen Ashton is a board-certified clinical health psychologist in the Breast Center, Digestive Disease and Surgery Institute at Cleveland Clinic. Learn more about Dr. Ashton.
 
Erica Watson is a breast cancer survivor and patient advocate.
 

Related Resources:

What Does Cancer Survivorship Mean?What Does Cancer Survivorship Mean? Cancer Survivorship | The Positive Impact of Peer SupportCancer Survivorship | The Positive Impact of Peer Support Becoming Empowered: Navigating Obstacles to Empowerment That Can Lead to Better HealthNavigating Obstacles to Empowerment That Can Lead to Better Health 

Transcript:

Katherine Banwell:

Dr. Ashton, we often hear about the importance of creating a survivorship care plan. What is that exactly, and where do you and a patient start when you’re creating such a plan?  

Dr. Ashton:

That survivorship care plan is such an important part of the process. I think for many patients it really helps relieve a lot of anxiety. When you’re finished with your active treatment there’s really a thought of what next, right?  

You’ve just gone through surgery or chemotherapy, radiation; you’ve been actively treating the cancer, and then you’re kind of left like, what is this new normal? So, one of the things we do at the Cleveland Clinic is patients have a survivorship visit. So, it’s either with their oncologist or with a nurse practitioner, and they spend an hour with the patient and go through what are all the treatments you’ve done? What’s your plan for the next five years? How often do you come in to see your doctor? What kinds of tests are you going to get, what kind of scans? What you need to be looking for? What would be a sign of something to be concerned about? And then a big part of that plan is also the lifestyle changes that occur in survivorship. So, eating a healthy diet, exercising regularly, stress management, getting enough sleep. And that’s where as a psychologist a lot of times I come in.  

We have a group called Breast Cancer STAR (Survivorship Tools and Resources), so it’s a five-week program for our survivors to work on changes with lifestyle, stress management, all of those changes in their life moving forward.  

And that’s a virtual group program where survivors can talk to each other about that survivorship plan as well as learn some skills to take with them.  

Katherine Banwell:

It’s great to have that support. We know that this varies by cancer, but what is the typical follow-up that occurs when monitoring for recurrence?  

Dr. Ashton:

So, I usually would probably leave that question to the oncologist, and so many different kinds of breast cancer are going to have different kinds of monitoring. But very often that first-year patients will check in with their oncologist every three months. They’ll have a breast exam at many of those visits. If they still have breast tissue, then they would have mammograms or possibly MRIs. So, there’s some scans that go along with that. And many patients are also on ongoing medications or treatments that go for sometimes several years after their initial breast cancer diagnosis.  

So, they would be checking in with their oncologist on those medications at each visit as well.  

Katherine Banwell:

Erica, the follow-up care that goes along with being a survivor can be anxiety inducing or cause some call it scan-anxiety. What advice do you have for coping with these types of emotions as a survivor?  

Erica Watson:

As a survivor I will have my first scan next month, but I would just encourage survivors to just be okay with the process, ask questions, as many questions as they possibly can, take someone with them, which was suggested to me.  

I don’t have anxiety necessarily about the scans. My breast cancer was detected by pain or through pain, so I experienced anxiety with that, any kind of breast pain that I experienced from surgery or radiation therapy. And I also would just advise the patient or survivor to just experience the process, allow themselves to be afraid, talk through the reality of what’s really going on, talk through the fact that they had all the treatments, they did everything that was in their control as far as going to the appointments, getting all the care, to stop the reoccurrence.   

Katherine Banwell:

Dr. Ashton, primary and preventative care continues to be essential regardless of someone’s diagnosis. What tips do you have for keeping up with overall health and well-being?  

Dr. Ashton:

Yeah, I think as women we often put ourselves last in the priority list. And for breast cancer survivors, well-being is incredibly important. And I tell patients it’s not an optional thing or something that you’re being selfish by doing, it’s actually part of your prescription as a survivor. So, the time that you take for stress management, whether it’s meditation or being outdoors or whatever brings you joy is really part of your prescription for wellness in survivorship. Exercise is incredibly important. They recommend for survivors 150 minutes of exercise a week and two days of weight training, keeping your weight normal.   

So, all of the healthy eating, healthy habits are actually what’s going to help prevent recurrence. And they’re things that or in patients’ control, so that feels good too to be able to take that time and recognize that it’s an essential part of their health, not an optional part.  

What Does Cancer Survivorship Mean?

What Does Cancer Survivorship Mean? from Patient Empowerment Network on Vimeo.

Dr. Kathleen Ashton and Erica Watson, a cancer survivor, explore the difference between being a survivor and survivorship. They discuss what cancer survivorship entails and Erica’s experience of finding a new normal in her journey as a survivor.

Dr. Kathleen Ashton is a board-certified clinical health psychologist in the Breast Center, Digestive Disease and Surgery Institute at Cleveland Clinic. Learn more about Dr. Ashton.
 
Erica Watson is a breast cancer survivor and patient advocate.
 

Related Resources:

Cancer Survivorship | Ongoing Healthcare and Follow-Up

Cancer Survivorship | Ongoing Healthcare and Follow-Up

Cancer Survivorship | The Positive Impact of Peer SupportCancer Survivorship | The Positive Impact of Peer Support Becoming Empowered: For Cancer Care Partners_ How to Access the Support You Need

For Cancer Care Partners: How to Access the Support You Need


Transcript:

Katherine Banwell:

Dr. Ashton, I’d like to start with a definition. If you would tell us what the difference is and the importance of survivor versus survivorship?  

Dr. Ashton:

Sure. So, people define being a breast cancer survivor at different points along the way, and even different oncologists really think about it, dating it from different times. So, some people date it from when they were diagnosed. Other people will date survivorship from after they had their surgery or after they completed chemotherapy.  

So, everyone looks at it a little bit differently. But survivorship is really more of that process throughout someone’s life after breast cancer; taking care of surveillance, working with their doctors, ongoing lifestyle changes that they may be undergoing after breast cancer.

Katherine Banwell:

And, Erica, what does survivorship mean to you?  

Erica Watson:

I am just living with a purpose now, I guess. I have not defined where my survivorship term starts or end or starts actually. So, I’m intentional about laughing more and doing things that bring me joy and sharing my story.  

I try not to pay attention to the small things in life that used to get me all stressed out. I talk to my medical team, I ask questions, I dance in the mirror when I hear good music. I mean, I’m just trying to get the most out of life that I can at this point. And I wake up every day with gratitude, and I just go.  

Katherine Banwell:

Yeah. Do you feel like you’ve had to adjust to a new normal?   

Erica Watson:

Oh my gosh, yes. I tend to, I guess I’ll say question things a little bit more than I did in the past, and specifically as far as my medical team; I’ll ask if I can do a thing or another with traveling, whether or not I can exercise or sit in the sun.  

I have to pay more attention to my body. I have to pay more attention to the things that I eat, those kinds of things. Which I really didn’t pay too much attention to in the beginning, but breast cancer is a part of my life and will be a part of my life. It does not define my life, but it is a part of it, and I have to pay attention to that.  

Cancer Survivorship | An Expert and a Survivor Share Inspiration and Advice

Cancer Survivorship | An Expert and a Survivor Share Inspiration and Advice from Patient Empowerment Network on Vimeo.

How is survivorship defined, and what can one expect after cancer treatment is complete? Dr. Kathleen Ashton, a clinical health psychologist, shares key advice about what to expect in follow-up care and the importance of planning for the future. Dr. Ashton is joined by Erica Watson, a breast cancer survivor, who provides her personal perspective on navigating life with cancer, discusses the impact of peer support, and shares why she’s passionate about patient advocacy.
 
Dr. Kathleen Ashton is a board-certified clinical health psychologist in the Breast Center, Digestive Disease and Surgery Institute at Cleveland Clinic. Learn more about Dr. Ashton.
 
Erica Watson is a breast cancer survivor and patient advocate.
 

Related Resources:

Non-Melanoma Skin Cancer Staging | What Patients Should Know

Non-Melanoma Skin Cancer Staging | What Patients Should Know

Advanced Non-Melanoma Skin Cancer | Establishing a Treatment Plan

Advanced Non-Melanoma Skin Cancer | Establishing a Treatment Plan

An Expert’s Perspective on Advanced Non-Melanoma Skin Cancer Research

An Expert’s Perspective on Advanced Non-Melanoma Skin Cancer Research


Transcript:

Katherine Banwell:

Welcome and thank you for joining us. With us today is Dr. Kathleen Ashton. Dr. Ashton, welcome. Would you please introduce yourself?  

Dr. Ashton:

I’m Kathleen Ashton. I’m a board-certified clinical health psychologist, and I specialize in working with patients with breast cancer and those with hereditary risk for breast cancer.   

Katherine Banwell:

Erica, would you introduce yourself?  

Erica Watson:

Sure. I am Erica Watson, wife, mother, grandmother, neighbor, friend, employee, sister, aunt, all those in addition to a, I’m going to say six-month breast cancer survivor.  

Katherine Banwell:

Congratulations. 

Erica Watson:

So, thank you.  

Katherine Banwell:

Well, welcome to both of you. We really appreciate you taking the time to join us. Erica, I’d like to start with you. When were you diagnosed with breast cancer?  

Erica Watson:

So, I got the official I have cancer, or you have cancer call on the 28th of February 2023. So, a little over a year ago.  

Katherine Banwell:

And how did you work with your team to decide on a treatment plan once you were diagnosed?  

Erica Watson:

Initially I went into my first appointment just automatically knowing that I was going to have a double mastectomy, because I just could not imagine having to go through any part of this process ever again. But then I settled, I listened to my medical team, we settled on doing chemotherapy first and then I made the decision on what type of surgery to have about a month-and-a-half to two months later.  

They allowed me to make the decision. And so, I didn’t feel any pressure or anything like that from them. So, it was really me listening to my medical team.  

Katherine Banwell:

Okay. And how are you feeling today?  

Erica Watson:

I’m good. I had my three-month appointment with my oncologist yesterday. I got a gold star on my blood work, it’s looking great. I’m good, I’m good.  

Katherine Banwell:

That’s such great news.  

Erica Watson:

Thank you. 

Katherine Banwell:

Dr. Ashton, I’d like to start with a definition. If you would tell us what the difference is and the importance of survivor versus survivorship?  

Erica Watson:

Sure. So, people define being a breast cancer survivor at different points along the way, and even different oncologists really think about it, dating it from different times. So, some people date it from when they were diagnosed. Other people will date survivorship from after they had their surgery or after they completed chemotherapy.  

So, everyone looks at it a little bit differently. But survivorship is really more of that process throughout someone’s life after breast cancer; taking care of surveillance, working with their doctors, ongoing lifestyle changes that they may be undergoing after breast cancer.  

Katherine Banwell:

And, Erica, what does survivorship mean to you?  

Erica Watson:

I am just living with a purpose now, I guess. I have not defined where my survivorship term starts or ends or starts actually. So, I’m intentional about laughing more and doing things that bring me joy and sharing my story.  

I try not to pay attention to the small things in life that used to get me all stressed out. I talk to my medical team, I ask questions, I dance in the mirror when I hear good music. I mean, I’m just trying to get the most out of life that I can at this point. And I wake up every day with gratitude, and I just go.  

Katherine Banwell:

Yeah. Do you feel like you’ve had to adjust to a new normal?  

Erica Watson:

Oh my gosh, yes. I tend to, I guess I’ll say question things a little bit more than I did in the past, and specifically as far as my medical team; I’ll ask if I can do a thing or another with traveling, whether or not I can exercise or sit in the sun.  

I have to pay more attention to my body. I have to pay more attention to the things that I eat, those kinds of things. Which I really didn’t pay too much attention to in the beginning, but breast cancer is a part of my life and will be a part of my life. It does not define my life, but it is a part of it, and I have to pay attention to that.  

Katherine Banwell:

Dr. Ashton, the next question goes to you. We often hear about the importance of creating a survivorship care plan. What is that exactly, and where do you and a patient start when you’re creating such a plan?  

Dr. Ashton:

That survivorship care plan is such an important part of the process. I think for many patients it really helps relieve a lot of anxiety. When you’re finished with your active treatment, there’s really a thought of what next, right?  

You’ve just gone through surgery or chemotherapy, radiation; you’ve been actively treating the cancer, and then you’re kind of left like, what is this new normal? So, one of the things we do at the Cleveland Clinic is patients have a survivorship visit.

So, it’s either with their oncologist or with a nurse practitioner, and they spend an hour with the patient and go through what are all the treatments you’ve done? What’s your plan for the next five years? How often do you come in to see your doctor? What kinds of tests are you going to get, what kind of scans? What you need to be looking for? What would be a sign of something to be concerned about? And then a big part of that plan is also the lifestyle changes that occur in survivorship. So, eating a healthy diet, exercising regularly, stress management, getting enough sleep. And that’s where as a psychologist a lot of times I come in.  

We have a group called Breast Cancer STAR (Survivorship Tools and Resources), so it’s a five-week program for our survivors to work on changes with lifestyle, stress management, all of those changes in their life moving forward.  

And that’s a virtual group program where survivors can talk to each other about that survivorship plan as well as learn some skills to take with them.  

Katherine Banwell:

It’s great to have that support. We know that this varies by cancer, but what is the typical follow-up that occurs when monitoring for recurrence?  

Dr. Ashton:

So, I usually would probably leave that question to the oncologist, and so many different kinds of breast cancer are going to have different kinds of monitoring. But very often that first year patients will check in with their oncologist every three months. They’ll have a breast exam at many of those visits. If they still have breast tissue, then they would have mammograms or possibly MRI’s. So, there’s some scans that go along with that. And many patients are also on ongoing medications or treatments that go for sometimes several years after their initial breast cancer diagnosis.  

So, they would be checking in with their oncologist on those medications at each visit as well.  

Katherine Banwell:

Erica, the follow-up care that goes along with being a survivor can be anxiety-inducing, or cause some call it scan-anxiety. What advice do you have for coping with these types of emotions as a survivor?  

Erica Watson:

As a survivor I will have my first scan next month, but I would just encourage survivors to just be okay with the process, ask questions, as many questions as they possibly can, take someone with them, which was suggested to me.  

I don’t have anxiety necessarily about the scans. My breast cancer was detected by pain or through pain, so I experienced anxiety with that, any kind of breast pain that I experienced from surgery or radiation therapy. And I also would just advise the patient or survivor to just experience the process, allow themselves to be afraid, talk through the reality of what’s really going on, talk through the fact that they had all the treatments, they did everything that was in their control as far as going to the appointments, getting all the care, to stop the reoccurrence.  

Katherine Banwell:

Right. Dr. Ashton, what can you tell us about the importance of peer-to-peer support in cancer care and survivorship?  

Dr. Ashton:

I think peer-to-peer support is so important for survivors.  

It really gives survivors the chance to talk with other people who really understand what it’s like going through this process. So, as a professional, I can tell patients the science and give them tools and what works, and their oncologists can tell them what’s important for them to do, but the lived experience is so important. So, in our group program they get some of that peer-to-peer support. And when Erica says, “Hey, it really helped me to bring someone with me to my scan,” a patient really hears that in a different way than when your professional tells them.  

So, it’s just that much more meaningful. There’s another program at the Cleveland Clinic called Fourth Angel, and it’s a national program that any patient can take advantage of, and it matches you with a peer mentor.  

And they often check in by phone with each other, someone who’s been through a very similar experience, and patients often find that incredibly helpful. And many patients that move into survivorship, then they become a mentor, and they’re able to help another patient.  

And that really feels good to be able to give back in that way.  

Katherine Banwell:

Yeah, that’s wonderful. Erica, you have a family history of breast cancer, so you’ve been really vigilant in your care over the years. What advice do you have for other patients and family members facing a cancer diagnosis? Where do you find your strength?  

Erica Watson:

Well, I got it from a handful of sources. I learned a lot on my faith. I talked to my family members who were diagnosed with breast cancer and that are currently living. I was not afraid to ask questions. I cried a lot. I just really leaned heavily on my medical team.  

I feel like it is so important as Dr. Ashton was saying to be able to reach out or connect with someone that has actually lived the experience, because I was one of those women. I heard it from the medical team, but they were leaning on science, and I needed someone that actually went through what I was going through. That allowed me to understand and to trust what they were telling me. Not that I didn’t trust my medical team, but the family members or anyone else that I leaned on to support actually lived the life that I was getting ready to live, experienced what I was getting ready to experience. So, that really helped me a lot.  

Katherine Banwell:

Yeah. As you navigated care, were there any obstacles or hurdles that you faced?  

Erica Watson:

Well, the main one that sticks out to me today was as an African American woman, I didn’t feel as if I had a lot of resources that were catered to me and my needs. And so, that kind of stifled my search for research or for resources, because I didn’t have an experience with women that looked like me, that talked like me, that lived like me, that would have experienced the hair loss like I experienced, my skin changes with the sun.  

So, those were the obstacles that I faced, and it was tough. Of course, I had my family to lean on, I have my aunt, my sister, but there are so many women out there that don’t have family members that have gone through breast cancer, and I feel so like it’s necessary for us to be able to see and to experience the diversity in that area. 

We make up a huge demographic, but we are just not represented the way that I feel like we should.  

Katherine Banwell:

Yeah, I absolutely agree. And I know that the medical community is trying to reverse this issue; they’re trying to make it easier and more supportive for people of all colors and races. Why do you think it’s important for survivors to actually be an advocate and help other people as they navigate cancer?  

Erica Watson:

I believe the most important reason is just so that they know that they’re not alone. We can, as a breast cancer survivor, I know it was – my first response was to just go into a shell and hide.  

I didn’t want to share it with anyone. Of course, my family did not, they would not have understood, and this was before reaching out to my sister and my aunt. But yeah, just so that we’re not alone, to know that there are other women out there that are experiencing and feeling the exact same thing that we are experiencing and feeling; the questions, the concern, the guilt, the fear, we just need to be able to know and connect in that way. So, I just – yeah, I’m so passionate about that, and that’s it.  

Katherine Banwell:

Yeah. It’s so helpful to know you’re not alone in how you’re feeling, in some of the symptoms you’re having, to know that other people have experienced the same thing is vital.  

Dr. Ashton, primary and preventative care continues to be essential regardless of someone’s diagnosis. What tips do you have for keeping up with overall health and well-being?  

Dr. Ashton:

Yeah, I think as women we often put ourselves last in the priority list. And for breast cancer survivors, well-being is incredibly important. And I tell patients it’s not an optional thing or something that you’re being selfish by doing, it’s actually part of your prescription as a survivor. So, the time that you take for stress management, whether it’s meditation or being outdoors or whatever brings you joy, is really part of your prescription for wellness in survivorship. Exercise is incredibly important. They recommend for survivors 150 minutes of exercise a week and two days of weight training, keeping your weight normal.  

So, all of the healthy eating, healthy habits are actually what’s going to help prevent recurrence. And they’re things that are in patients’ control, so that feels good too to be able to take that time and recognize that it’s an essential part of their health, not an optional part.  

Katherine Banwell:

Erica, what advice would you give to someone who is newly diagnosed with cancer?  

Erica Watson:

I would tell them to process, take some time, slow down, trust family members and friends, listen to their medical team, know and realize that they are not alone, seek resources, and just to know that it’s not their fault, because I dealt with a little, a smidgen of that in the very beginning of my diagnosis. And to understand that there is, that today’s breast cancer is not yesterday’s breast cancer; it looks different, it feels different, and that they can do it.  

That is something that is vital. I believe that we – I know when I was first diagnosed, I remember looking in the pamphlets and hearing stories, and I just knew that there was no way that I was going to make it. I couldn’t do the sickness, I didn’t want to deal with the hair loss, all the things; I didn’t want to do with the pain, all the things that came along with a breast cancer diagnosis and treatment from chemotherapy, radiation, or surgery, but it’s not like that today. And so, I just would encourage the survivor or the patient to just be aware, do research, but don’t Google as much research, because it’s not a lot of good information on Google; it will definitely scare you.  

Katherine Banwell:

No, that can be dangerous.  

Erica Watson:

Yes, it will, it will scare you. But most of all, lean on family members and friends, ask for help, which is something that I did not do initially, because I am a woman and I can do it all on my own, and that didn’t work out well for me in the beginning. But just seek guidance, just reach out to someone that they know, advocate, any kind of mental health resources that are offered through the hospital or even in the community through nonprofit organizations, to do all those things. And Dr. Ashton has really encouraged me and pushed me to think of myself, to put myself first and understand that breast cancer or cancer in itself is a disease.  

It’s sickness, it needs to be treated properly, and that’s what I would give them.  

Katherine Banwell:

Yeah. I want to thank both of you so much for joining us. And do you have anything else to add?  

Erica Watson:

Well, I’m very excited to hear Erica’s point of view as she goes through this process, and excited for her to share her experience as an African American woman. I think absolutely as healthcare providers in the system we need to do better, and I know her reaching out in this way is going to make a difference for someone listening to her story who is thinking about getting a mammogram or is starting to go through treatment. So, I just appreciate her today.  

Katherine Banwell:

Yeah. Erica, do you have anything to add?  

Erica Watson:

I just want to thank Dr. Ashton. I want to thank you. I just want to thank – I’m grateful and honored for the opportunity to be able to share my story. I am a true believer, and if it helps one person then that’s mission accomplished.  

And I believe in locking arms and let’s just, accomplishing the goal and fighting this fight together.  

Katherine Banwell:

That’s a great way to end the interview. Thank you both again so much, it’s been a pleasure.  

Erica Watson:

Thank you.  

Dr. Ashton:

Thank you.