Tag Archive for: cancer patients

Patient Empowerment Network joins CancerX Initiative

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FOR IMMEDIATE RELEASE 

November 1, 2023

Patient Empowerment Network joins CancerX Initiative 

BOTHELL, WA. – Patient Empowerment Network (PEN) announced today that they have joined the CancerX Initiative, a public-private partnership announced by The White House as a national accelerator to boost innovation in the fight against cancer as part of the Cancer Moonshot campaign. CancerX’s goal is to reduce cancer deaths by 50 percent by 2047.   

“Key to achieving the goals of the Cancer Moonshot is having each and every cancer patient able to access the information they need to engage in shared decision-making,” said Tracy Rode, Executive Director, Patient Empowerment Network. “We believe Patient Empowerment Network (PEN) is an important addition to CancerX because of our focus on health equity and online literacy. We are proud to offer our expertise and energy to CancerX.” 

CancerX is convened and administered by Moffitt Cancer Center and the Digital Medicine Society (DiMe), alongside the Office for the National Coordinator for Health Information Technology and Office of the Assistant Secretary for Health.  

“Multi-stakeholder collaboration is critical to harness the potential of digital innovation in the fight against cancer, and we’re honored to partner with PEN to achieve the ambitious goals of CancerX,” said Smit Patel, Associate Program Director at Digital Medicine Society (DiMe). “Through this impressive collaboration, we will establish best practices, build capacity, and demonstrate the impact of innovation on the life of every person on a cancer journey.” 

PEN’s mission is to offer trusted information to empower anyone impacted by cancer, toward fulfilling our vision of every cancer patient having the knowledge they need to navigate the complexities of cancer.  

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About Patient Empowerment Network 

Patient Empowerment Network (PEN) is a virtually-based 501(c)(3) non-profit organization trusted by millions of cancer patients and care partners worldwide to achieve improved health literacy, equity, and treatment outcomes at every step of their journey. www.powerfulpatients.org. 

  

Media Contact:    

Emily Reed 

Early Light Public Relations 

Emily@earlylightpr.com 

September 2023 Digital Health Roundup

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Technology is helping doctors save cancer patients during treatment and with brand new treatments. Remote patient monitoring is detecting neutropenic fevers early in patients undergoing cancer treatments. Scientists have developed a micro device to implant inside tumors to help treat brain gliomas. With the use of CRISPR, researchers have developed a way to reprogram cancer cells into healthy muscle cells.

How Remote Patient Monitoring Can Save Cancer Patients’ Lives

Neutropenic fever is a common complication for cancer patients undergoing chemotherapy. In fact, one out of every 29 chemotherapy-treated patients is hospitalized, with a startling mortality rate of 7 to 9.5% reports Healthcare IT News. Remote patient monitoring devices include wearable temperature sensors, heartrate monitors, and respiratory rate monitors. Neutropenic fever is a common side effect of chemotherapy, but it can be serious or even fatal. This remote patient monitoring can detect fevers without symptoms or that occur during sleep. It is a simple patch that is Bluetooth enabled and transmits the data constantly. The neutropenic event caught early enough can prevent a hospital admission. Early detection of neutropenic events will improve patient outcomes and decrease the cost of admission by prevention. This success of the remote patient monitoring depends on the training of the monitoring staff. The staff must be able to recognize early warning signs of neutropenic events and respond quickly. Click here for the full story.

Microdevices Implanted into Tumors Offer New Way to Treat Brain Cancer

The shape and size of a grain of rice, the new device can conduct dozens of experiments at once to study the effects of new treatments on some of the hardest-to-treat brain cancers reports Medical Design & Development. Researchers from Brigham and Women’s Hospital designed this micro device to treat gliomas which are brain and spinal cord tumors. It monitors the effects of drugs on the tumors while surgically implanted during the treatment and it is removed before the surgery is over. This device helps to monitor the use of combination therapies and its effects on the tumor. It is implanted for two to three hours while tiny doses of drugs are given, up to 20 different drugs. The data and surrounding tissue are analyzed to learn if the drugs are effective on the tumor’s microenvironment. During the studies, there have been no adverse effects on the patient from the device. Click here for the full story.

CRISPR Used to ‘Reprogram’ Cancer Cells into Healthy Muscle in the Lab

The study published August 28 in the journal PNAS, Researchers found that disabling a particular protein complex in cells of rhabdomyosarcoma (RMS)- a rare cancer in skeletal muscle tissue that mainly effects children under age 10- in the laboratory causes the tumor cells to turn into healthy muscle reports Live Science. Differentiation therapy is the act of changing cancer cells into healthy cells and has been used for blood and bone cancers. This therapy uses CRISPR technology to alter proteins to stop cancer multiplication and can eventually be used as a treatment option. In RMS, a genetic mutation makes a protein that causes the skeletal muscles to turn into cancerous tissue. CRISPR was used to disable certain genes to stop this mutation process, and then turned the cancerous cells into healthy cells. Click here for the full story.

Top Resources for Appendix Cancer

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General Resources, Including Medical Information

Find a Physician

Support and Advocacy Groups

Many support groups can be found on Facebook by type of cancer and/or variant.

Managing Body Image Concerns During and After Cancer Treatments

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Experiencing changes to your body is typical for someone undergoing cancer treatment. Hair loss, surgery scars, weight loss or gain, struggles with movement and balance, sensitive skin, swelling, and changes in sexual drive are some of the most common changes people with cancer encounter in treatment.

We wish these bodily changes were simply a reminder of the strength and courage a person with cancer possesses as they undergo and complete treatment. But unfortunately, going through these changes can fuel body image issues.

Addressing any body image concerns you have is important because having confidence, high self-esteem, and a positive mindset are integral for getting through what is often a grueling treatment process.

The following tips will help you successfully manage your body image concerns and feel confident again as you navigate cancer treatments.

Feel Your Feelings

It’s difficult for many people to acknowledge their feelings and let them run their course, especially when they’re negative. But it’s essential to do so if you want to manage your body image concerns.

Ignoring how you feel and stuffing your emotions down only guarantees they’ll eventually come to the surface, most likely at a time you aren’t expecting them to. Instead, embrace what you’re feeling, whether it’s anger, confusion, or sadness.

When you’re aware of what you’re feeling and what triggers it, you can find more effective ways to cope. Also, when you ride an emotion out, you’ll see that each one does eventually pass. And you become stronger and more emotionally stable because of it.

Engage in Daily Self-Care

As mentioned above, you need a positive self-image to fuel self-worth and be as confident, healthy, and stress-free as possible. All of which help you better cope with what your body goes through during cancer treatments.

Another great way to gain this positive image of your body and self is to engage in daily self-care. Self-care requires you to learn about yourself and embrace your mind and body in every stage. You eventually learn to love yourself unconditionally and provide what you need to feel good about yourself and your life.

Daily self-care looks different for everyone. A patient undergoing cancer treatments will have to be creative in how they approach self-care. The bodily changes touched on above may limit what you can do physically. But don’t let that stop you.

Simple things like taking your medication every day, spending quality time with your family, writing in a journal, or getting the rest you need each night are forms of self-care. Create a routine that’s mindful of your limitations and represents who you are.

Eat Well and Exercise

Eating well and exercising can also be a part of your self-care routine. They can both be impactful in your quest to manage your body image concerns during and after cancer treatments.

Fueling your body with the right foods and prioritizing physical fitness each day can aid healthy insides. It also helps you get in good shape and create the physique that ignites your confidence and self-esteem.

A balanced diet of fruits, vegetables, proteins, dairy, and grains is ideal. However, you should always follow the diet plans your doctor develops. Be sure to also consult them about the exercises that are appropriate for you during and after your cancer treatments to be safe.

Start Going to Therapy

Sometimes, trying to navigate body image concerns and all that comes with treating cancer on your own isn’t effective. You may need to rely on the help of a professional to really dig into your body image issues, cancer’s role in how you’re feeling, and how to improve your situation.

You can expect the following in your first therapy session:

  • Answering questions about yourself and what you’re currently going through.
  • The therapist explaining what kind of therapy they do and how they think they can help.
  • An opportunity to be open about what’s on your mind and follow-up questions from the therapist.
  • A summary of the session and setting goals for future sessions.

Go into therapy with an open mind and a vision for what you want out of it to get the most out of your sessions.

Keep in mind that there are many different kinds of therapy, including cognitive behavioral therapy, yoga therapy, and dialectical behavioral therapy. You can also engage in individual or group therapy, with remote or in-person sessions available. So, tailoring your therapy process to your needs won’t be an issue.

Develop a Support System

As weird as this sounds, it’s a good thing that everyone doesn’t see you the way you see you. If you’re struggling with negative thoughts about your body and image, it’s nice to know that there are people around you who don’t see those negative things as you do.

Instead, they see your strength, beauty, courage, and joy, and remind you of it often. They lift you when you’re feeling down. They keep you focused on what you can control and are with you every step of your treatment process. That’s the power of a good support system.

Make sure you have the right people around you to help you keep your body image issues in check.

You have enough to worry about during and after cancer treatments. How you look shouldn’t be on this list. Because regardless of the changes your body is going through, you’re beautiful. Believe this wholeheartedly and show yourself immeasurable amounts of grace during this time.

Finding Your New Normal: 7 Steps To Navigating Life After Cancer

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 A cancer diagnosis can turn your life upside down, challenging you physically, emotionally, and mentally. It takes a lot of strength, resilience, and support to get through cancer treatment. However, reaching the end of your treatment doesn’t mean that you’ve reached the end of your journey. Instead, it marks the beginning of a whole new chapter.

After cancer, finding your “new normal” is often an important part of your recovery process, giving you the chance to rebuild your life, reclaim your identity and embrace a brighter future.

A new normal is the adjustment and change that occur after an event or circumstance that has a significant impact on a person’s life, such as a cancer diagnosis. It refers to various aspects of a person’s life that may have been impacted by the disease and its treatment.

There may be physical adjustments required, such as coping with side effects from treatment or adapting to a new lifestyle to maintain health and well-being. You may also have to adjust emotionally as you learn to cope with anxiety and fear of recurrence. Additionally, the new normal may involve reevaluating priorities, setting new goals, and incorporating self-care and support into your daily life.

In this article, we will explore seven essential steps to help you navigate the new reality after cancer. These steps are designed to support your emotional well-being, physical health, self-care, and personal growth.

1. Rebuild Your Physical Strength

One of the most significant aspects of reclaiming life after cancer is physical recovery. Engaging in regular exercise can help you restore stamina, improve your overall well-being, and reduce the risk of cancer recurrence. Whether it’s gentle walks, yoga, swimming, or strength training, find activities that suit your abilities and interests. Start slowly and listen to your body, gradually increasing your activity levels as you gain strength and endurance. Physical rehabilitation programs or working with a certified fitness professional can also provide guidance and support tailored to your specific needs. Focusing on rebuilding your physical strength will help you regain control over your body and enhance your quality of life moving forward.

2. Acknowledge Your Feelings

Equally important as rebuilding your physical strength is addressing the emotional and psychological aftermath of cancer. While treatment targets cancer specifically in the body, the experience doesn’t leave the mind, spirit, or emotions untouched.  The toll it takes has been likened to a natural disaster or trauma. In fact, recent studies have put forward the theory that surviving cancer fits the framework of Post Traumatic Stress Disorder (PTSD).

It’s common to go through a rollercoaster range of emotions when active cancer treatment ends, including fear, relief, gratitude, anxiety, and uncertainty about the future. The fear of recurrence can be overwhelming, and adjusting to the changes in your body and appearance can be a challenging process.

It’s important to acknowledge your feelings and give yourself permission to process them. Understand that what you are feeling is a natural response to the trauma you’ve faced. Allow yourself the time and space to grieve any losses, whether they be physical, emotional, or psychological.

Be compassionate to yourself and patient with the pace of recovery. Support from friends, family, and professional counselors can be immensely helpful. It can help you cope with your emotions and express your emotions in a safe environment. Joining support groups with other cancer survivors can also be helpful, as it allows you to connect with individuals who understand your experiences firsthand. These networks can offer emotional support, inspiration, and a sense of belonging that fosters resilience and personal growth.

3. Embrace Self-Care

Make self-care a top priority by engaging in activities that promote relaxation, reduce stress, and support your overall wellness. Carve out time for relaxation and engage in activities that bring you joy and promote a sense of well-being. This may include pursuing hobbies, spending time in nature, connecting with loved ones, or engaging in creative outlets. Activities such as meditation, deep breathing exercises, or journaling can help cultivate a sense of calm, inner peace, and self-reflection. These practices provide valuable moments for healing and self-discovery.

4. Take care of your diet

Your diet plays a crucial role in supporting your overall health. Adding fruits and vegetables to your diet can support your recovery. Vitamins, minerals, and antioxidants in these foods promote healing and boost your immune system. Get a range of nutrients by including a variety of colorful fruits and vegetables. Whole grains, such as whole wheat, oats, quinoa, and brown rice, are good sources of fiber, vitamins, and minerals. They can help maintain energy levels, support digestion, and provide sustained nourishment.

Proteins such as poultry, fish, legumes, and tofu are essential for tissue repair and regeneration. It is important to include adequate protein in your diet in order to help heal wounds, recover muscles, and maintain strength. Healthy fats, like those found in avocados, nuts, seeds, and olive oil, are important for brain health and nutrient absorption. Including these fats in moderation can contribute to a well-rounded and balanced diet.

Consulting with healthcare professionals or nutritionists who specialize in cancer survivorship can provide valuable guidance on tailoring your diet to meet your specific needs. They can take into account any dietary restrictions or sensitivities you may have and create a personalized nutrition plan that supports your recovery and long-term health goals.

5. Redefine Identity and Self-Image

Cancer can profoundly affect your identity and self-image. You may find yourself grappling with changes in your physical appearance, altered body functions, or a sense of loss. Finding ways to redefine your identity in a way that feels authentic and empowering is important as you navigate these changes.

You are not solely defined by your cancer experience. Explore the aspects of yourself beyond your diagnosis. Recognize and develop your unique strengths, talents, and interests. Engaging in activities that foster self-expression is an effective way to reconnect with yourself and discover what you’re passionate about. Writing, painting, photography, and participating in support programs can help you tap into your creativity and rediscover yourself beyond cancer.

6. Reassess Priorities and Life Goals

Beyond physical and emotional recovery, you may also find yourself questioning your priorities and reassessing your life goals.  Cancer often acts as a wake-up call, prompting us to live more intentionally and authentically. Take the time to reflect on your personal aspirations, dreams, and ambitions. Consider what truly matters to you and how you want to shape your future. This may involve exploring a new career path, nurturing relationships and connections with loved ones, or engaging in activities that bring you joy. Embrace this opportunity for personal growth and create a future filled with purpose and fulfillment.

7. Celebrating Your Milestones

As you navigate your journey toward the new normal, it’s important to honor every milestone, no matter how small it may seem. Every step forward is a victory worth celebrating. Take the time to acknowledge and celebrate the end of treatments, anniversaries of being cancer-free, or personal achievements that you accomplish along the way. Each of these milestones serves as a reminder of your strength, resilience, and progress. Make sure to surround yourself with loved ones who can share in your celebrations and provide support.

Conclusion

The process of finding your new normal after cancer requires patience, self-compassion, and time. Healing is a journey that will have its ups and downs.  Throughout your journey, remember to be kind to yourself and prioritize self-care in all its forms. Nurture your emotional well-being, tend to your physical health, and honor your individuality. Trust in your ability to adapt and grow.

May your journey be filled with healing, self-discovery, and a renewed sense of hope and purpose.

June 2023 Digital Health Round Up

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With the help of technology, this month cancer patients and scientists are making strides in the fight against cancer. A new artificial intelligence chatbot is available to ease cancer patient’s anxiety by answering questions 24 hours a day. Researchers have discovered that turning off a particular gene in T cells can fight cancer. Scientists have found that injecting particular bacteria directly into a cancerous tumor can fight cancer.

New AI ‘Cancer Chatbot’ Provides Patients and Families with 24/7 Support: ‘Empathetic Approach’

Cancer patients looking for quick answers or support between their appointments can now turn to “Dave”, an artificial intelligence chatbot trained to discuss all things related to oncology reports Fox News. The patient’s questions are mostly about potential treatments and the side effects that can be expected. The chatbot provides answers anytime, day or night, to reduce the patient’s anxiety. The AI is designed to respond with empathy and uses seven years of patient and doctor interactions. These interactions are drawn from a social and professional cancer app. To date, over 10,000 cancer patients have used this chatbot. The chatbot also informs patients of the latest technological advances. “Dave” can provide all kinds of information, however if more specific information is needed, patients are directed to call their doctor. Click here for more information.

Knocking Out Gene Triggers Powerful Anti-Cancer Response

Researchers at Baylor College of Medicine have made what they believe is a groundbreaking discovery in the field of cancer research. Their study, published in the Proceedings of the National Academy of Sciences, reveals the importance of a specific gene, SRC-3, in regulating the immune response against cancer reports Science Blog. With the help of gene editing technology, scientists eliminated the SRC-3 gene in T cells. Eliminating this gene caused a lifelong anti-cancer response in animal testing for breast and prostate cancer. Tumors were eliminated without the side effects typically caused by cancer treatments such as chemotherapy. Researchers are doing further testing to use for possible treatment of cancer in humans. In this study, they found that not only were the tumors gone after the injection of the altered T cells, but the tumors did not reoccur over time. Scientists are very hopeful that this research can be used to make better cancer treatments in the future. Click here for more information.

Intratumoral Bacteria as an Injectable Ant-Cancer Treatment

Scientists at the Japan Advanced Institute of Science and Technology in Ishikawa, Japan have developed an anti-cancer treatment that consists of bacteria that are naturally found inside some tumors reports Medgadget. With the help of technology, scientists can separate the bacteria and inject it into the tumor. The bacteria inside the tumor then causes an immune

response to destroy the tumor without any genetic engineering or advanced methods of drug delivery, making it less costly. This method causes less adverse side effects outside the area of the tumor, unlike other treatments. Tumors by nature, have a lower oxygen environment, which makes an ideal environment for bacteria to grow. These intratumoral bacteria get injected into the core of the tumor to cause an immune response. Mouse models using this method show promising results. Click here for more information.

Full Circle Discussion with Jessica Catlin Replay

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Jessica Full Circle Discussion Replay from Patient Empowerment Network on Vimeo.

Jessica Catlin, our Colon Cancer Empowerment Lead takes a deep dive into her memoir, Full Circle: How Politics, Depression, and Yoga Helped Me Crush Colorectal Cancer and Crisis. Her book is dedicated to people living with colorectal cancer, care partners, anyone impacted by mental health challenges, and anyone seeking inspiration for meeting–and crushing–crisis. Tune into this replay to hear this engaging conversation with Jessica and others as she shares her story and answers questions. 

This program was aired in a meeting format so attendees had the option of having their camera on or off. Some voices you hear may be off camera.

Full Circle: How Politics, Depression, and Yoga Helped Me Crush Colorectal Cancer and Crisis Synopsis

At first, the doctors didn’t believe anything was wrong. Jessica was a politically active, self-aware, health-conscious student of yoga, and the doctors dismissed her bloody stool as a likely hemorrhoid. But nearly one year after she originally sought help, 39-year-old Jessica finally got the life-threatening results: She had Stage 3 colorectal cancer.

In the year that followed, Jessica endured chemoradiation, cancer surgery, ostomy surgery, chemotherapy, and ostomy reversal surgery as well as managing her preexisting mental health conditions. She blogged about the experience every step of the way, giving her readers a window into the fight of her life and encouragement for meeting their own challenges.

Full Circle: How Politics, Depression, and Yoga Helped Me Crush Colorectal Cancer and Crisis is an intimate, page-turning look at one woman’s battle with young-onset colorectal cancer, just as the incidence of this disease is on the rise among the under-40 population. Furthermore, Jessica addresses head-on the additional challenges–and advantages–of being a mental health patient and contrasts the medical system’s treatment of cancer and depression.

This book is dedicated to colorectal cancer patients and caregivers, mental health patients and caregivers, and anyone seeking inspiration for meeting–and crushing–crisis.

The Role of Nutrition in Supporting People with Cancer During Treatment

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Living with cancer is often a challenging experience. You may find you face various hurdles that are physical, psychological, and emotional in nature. Part of the key to navigating these is to have an effective set of tools at your disposal. This isn’t just a practical way of addressing issues, but it can also help you feel more in control of your well-being at a time when you might feel you don’t have much agency.

These tools can take a range of forms. Certainly, the medications and treatments you utilize can impact your health. You might also be seeing a therapist or counselor who can introduce you to strategies to manage the psychological symptoms of your experience. But one of the most important elements that can influence your everyday wellness is your dietary choices.

Boosting Overall Wellness

People’s experiences with cancer can vary. Nevertheless, it’s important to focus on your overall health and wellness so you’re in the best possible position to navigate the challenges of your diagnosis. Nourishing your mind and body plays a key role in this regard.

Certainly, this involves maintaining a balanced diet. Fruits, vegetables, poultry, fish, and nuts can all be important in promoting good health when you are living with cancer. Protein sources such as eggs, seeds, and lentils can contribute to a strong immune system. You should also focus on your hydration by committing to regularly drinking water.

Alongside balancing the good food you put into your body, you should also avoid food and drink that can have negative impacts. In particular, alcohol can have detrimental health effects in both the short and long term. Its effect on your central nervous system can contribute to and exacerbate mood fluctuations, not to mention that chronic alcohol use is a cause of immunodeficiency. It is therefore healthier to cut out or significantly reduce alcohol consumption, at least as you navigate cancer treatment.

Using Substitutions and Supplements

Directly gaining nutrition from food isn’t always practical as a person with cancer. This is especially relevant when treatments can have an impact on your appetite. Not to mention that some drugs — like chemotherapy — may reduce certain protein and vitamin stores in your body. It’s vital to consider how some supplements and dietary substitutions can bridge the gap in your nutritional needs.

It’s important to be mindful when introducing supplements into your diet when you’re being treated for cancer. Take a targeted approach. Speak to your oncology team about what specific vitamins you may be deficient in or those that might have a strengthening or protective impact. You should also be aware that some supplements can be detrimental to the efficacy of treatment. For instance, botanicals like garlic, ginseng, and echinacea can disrupt how your body metabolizes chemotherapy drugs. So, be sure not to make changes without advice from your specialist.

 

One good approach to your nutrition is to find substitutions for difficult-to-digest or generally unhealthy food. For instance, while you may crave sweet foods, processed sugar can be detrimental to cognition, mood, and overall wellness. It is usually best to find substitutions in the form of healthy and naturally sweet food, such as fruits, nuts, and homemade snack bars. This can be a helpful strategy when you’re navigating the difficulties associated with treatment. Not to mention that natural foods may be more palatable when you’re experiencing nausea.

Mitigating Treatment Side-Effects

Navigating the reality of cancer in itself can be challenging. While treatment is a powerful tool in your management and recovery, it can also contribute to the difficulties you experience. The side effects of radiotherapy, chemotherapy, and a range of other elements can affect your quality of life. It’s well worth exploring how your nutritional choices can empower you to address these.

Appetite changes and nausea are among the most common side effects of cancer treatment. One helpful approach to this is to consume smoothies as opposed to solid foods. This may be easier on your digestion while helping you get the servings of fruits and vegetables you need.

In addition, some people with cancer find they live with diarrhea and other bowel or bladder issues as a result of treatment. You might find it better to minimize fried, spicy, or fatty foods, particularly in the immediate days after treatment. You could adopt a clear-liquid diet, involving broth, gelatines, and some fruit juices. Bananas and potatoes can also be positive components, which also serve to replace some potassium that diarrhea can deplete.

Conclusion

Nutrition has a vital role to play in empowering you to support your cancer treatment. There are some generally helpful approaches. Maintaining a balanced diet, using substitutions, and choosing food that helps you navigate symptoms are all essential steps.

Nevertheless, it’s also important to recognize just how nuanced a cancer diet can be. Collaborating with medical professionals on building a dietary plan is vital to not only meeting your nutritional needs but also to avoid mistakes that can negatively affect your treatment. Even something as simple as the frustration of not being able to eat your favorite foods is worth discussing with dietary experts. They may be able to direct you to ways you can safely incorporate flavor profiles you enjoy.

There’s no denying that your cancer treatment will be a challenging process. But with some planning, knowledge, and expert guidance, you can find nutritional approaches that bolster your experience.

Patient-Centric Care

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Tailoring Information to Meet the Changing Needs of Patients Along Their Healthcare Journey

Being diagnosed with cancer can be a frightening experience. The diagnosis can bring up a range of emotions such as fear, shock, anger, and sadness. When I was diagnosed with breast cancer, I was initially overwhelmed by the flood of information that came my way. It seemed like there was so much to learn about the disease, its treatment options, and the potential outcomes. I found that trying to process all this information while dealing with the emotional impact of the diagnosis was incredibly challenging. It was difficult to know where to start or how to make sense of it all.

When making decisions about cancer treatment, it’s important to take your time, get organized, and be informed. Breast surgeon, Dr. Deanna Attai of the David Geffen School of Medicine at the University of California Los Angeles recommends that patients approach their appointments with a clear plan and bring along a trusted friend or family member if possible.

Having someone you trust with you during appointments can help provide support, ask questions, and take notes on important information that you may not remember later. But if you’re unable to bring someone with you, Dr. Attai suggests requesting a recording of the consultation so that you can review it later and focus solely on listening during the appointment.

Sorting through information and making treatment decisions can be overwhelming. It’s important to take the time to do research and ask questions of your healthcare team. Don’t be afraid to ask for clarification or more information if needed. The more informed you are about your options, the better equipped you will be to make the best decision for you.

It’s also helpful to stay organized and keep track of all the information you receive. This can be done by taking notes during appointments, keeping a binder or folder with important documents and test results, and creating a list of questions to bring to your appointments. By staying organized and informed, you can feel more in control of your healthcare journey and make decisions with confidence.

Changing Information Needs

As my own cancer journey progressed, my information needs changed. Initially, I focused on understanding my diagnosis and treatment options. During treatment, however, I became more interested in coping with side effects and managing the emotional toll of a cancer diagnosis.  It was at this point that I discovered that the information provided by healthcare professionals didn’t always keep pace with my changing needs. This is when I turn to the internet to seek out more information.

While there is a wealth of health information available online, it’s important to approach it with a critical eye. Not all sources are trustworthy or accurate. That’s why it’s crucial to learn how to evaluate the information you find online. This previous article How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News has many helpful tips and resources to guide you.

It’s important to remember that not all information is relevant to every patient, and what works for one person may not work for another. That’s why it’s essential to discuss what you find online with your healthcare team and ask them to help you put the information into context for your particular situation. They can help you sort through the information and determine which sources are credible and relevant to your needs.

Information Is Power

As a patient, I know that information is power. Feeling empowered and informed throughout my healthcare journey has been crucial in helping me make the best decisions for my health in line with my own personal values and needs.  For example, when I was diagnosed with breast cancer, the information that was provided to me wasn’t tailored to my needs as a young woman with breast cancer. The information was aimed at a much older patient demographic and didn’t reflect the impact that breast cancer would have on me as a young woman living with the disease. It’s crucial that healthcare providers take the time to understand the unique needs of their patients and provide tailored information that helps them make informed decisions about their healthcare. Research has shown that when healthcare providers provide the right information at the right time, it increases the patient’s ability to have a more active role in decision-making.

Information and Shared Decision Making

Information plays a critical role in shared decision-making (SDM). In shared decision-making, patients and healthcare providers work together to make healthcare decisions. In order to achieve this, patients need to have access to relevant, accurate, and understandable information about their healthcare options. Providing patients with this information in a non-judgmental, unbiased, and clear manner is the responsibility of healthcare providers. It is important to provide information on the potential benefits and risks of various treatment options, the likelihood of success, and any possible side effects of medications or procedures. SDM should also consider the patient’s personal circumstances, preferences, and values.

It is the responsibility of healthcare providers to ensure that patients understand the information they receive. This may involve using visual aids, providing written materials, or using plain language to explain complex medical concepts. It is also important to give patients the opportunity to ask questions and clarify any misunderstandings they may have.

One of the key benefits of providing information in shared decision-making is that it empowers patients to take an active role in their healthcare. When patients are informed and engaged, they are better able to make decisions that align with their personal goals and preferences. Research studies have shown that patients are more satisfied with their care when they are more engaged and involved in decision-making. Furthermore, patients who are actively involved in decision-making experience less decisional conflict. Decisional conflict refers to feelings of anxiety, uncertainty, and doubt that patients may experience when making a healthcare decision. Including patients in decision-making can reduce negative emotions and improve patients’ overall well-being.

Conclusion

It has been many years since I received my diagnosis of breast cancer and as I reflect back on the journey I have taken to becoming a patient advocate, I can see how the sources of information I received helped me progress along the way.

In the beginning, I relied on information from my doctors, followed by my own research on the Internet, and then finally connecting with fellow patients online. I gained confidence as I learned more about my disease and treatments, and now I try to help people who are going through a similar thing.

As patient advocates,  I firmly believe that it is our responsibility to ensure that all patients receive information that is timely, accurate, and easy to understand, to help them make informed decisions. We, as cancer patients, have accumulated a wealth of valuable information and knowledge through our personal experiences, and it’s crucial that we share this knowledge generously with those who are now starting their own patient journeys.

Myeloma and NHL Patients Discuss Their Go-to Sources of Laughter

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Myeloma and NHL Patients Discuss Their Go-to Sources of Laughter from Patient Empowerment Network on Vimeo.

Lisa, Thomas, Donna and Diana all share what keeps them laughing. From TED Talks to TikTok videos—Thomas shares it’s always best to start your day with something positive.  

See More from PEN-Powered Activity Guide 12

Transcript:

Lisa Hatfield:

I wrote down two sources of laughter right now, and just so people are watching this, something that they can look up, or a positivity or something that there’s just like having a low day go onto this activity guide or watch this thing, two sources of positivity or laughter or humor from any one of you want to start with, Diana? 

Diana:

Number one would be my book, no I’m kidding. You know what I have found? Every morning I have since retired. And every morning since I’ve retired, I get on Facebook and TikTok and I look at Penny the talking cat. I love Penny the talking cat videos, it’s just stupid, stupid humor. I also adopted a new kitten and he brings me joy, such joy on the silly stuff that he does, so I think whatever you can find that brings you humor, do it every day. And start your day with it.

Lisa Hatfield:

That’s a good tip. Start your day with it. Yeah, getting off on the right foot. Donna, how about you? 

Donna:

Well, I mentioned it a little bit earlier, one of the comedians that I really love, because he always talks about family issues, Italian Jewish issues all the time, back and forth, back and forth. That’s Sebastian Maniscalo. 

He is so funny, and I watched those videos either on Facebook on TikTok, on YouTube, whatever, and he relates to everything that you could think of, whether it’s growing up in situations that are awkward, whether it’s awkwardness at holidays, whether it’s the awkwardness to going out with his children or his wife or whatever, so it’s all family-related. And it just makes me laugh. It puts me in a different place and I laugh and I find it very relaxing, and I just say, wow, I can relate to that or whatever. But he makes me laugh all the time cause it’s his voice that says mannerism, and the subject matter is always great, and it’s never raunchy actually. Never. 

Lisa Hatfield:

That’s nice. Yeah.

Diana:

This January, I broke my foot. I had a stress factor, my foot, so I had to sit on the couch for six weeks, I couldn’t go to the gym, I couldn’t walk 12000 steps a day, which is what I typically do. I watched all 178 episodes of Seinfeld over those six weeks and it’s what kept me going.

Lisa Hatfield:

Awesome. So, Thomas, what are two sources or Donna were you done? Thomas, a couple of sources of inspiration or humor for you? 

Thomas:

We all have this in common is we all go to TikTok in the morning and just look at something to get our day going. So that’s one of the things that I do. And then the other thing is, I give calls, sometimes I call them or via text to some… My guys that I ride my bike with, one of the guys are so animated with every story that he tells, he makes you laugh even when you don’t even want to laugh because of how he animates the story. So, between him and what I see on TikTok and social media, that really brightens my day up in the morning before I start it. And it has to be something positive, anything negative, I try to scroll past that even so fast that it doesn’t even get into my brain. 

Lisa Hatfield:

That’s awesome. Yeah, avoid the negative. I like to look up every once in a while, when I’m feeling just… I need a good laugh. I look up YouTube videos of babies laughing, for some reason, you see it, there was a video with Dad Laughing, the baby with her sneezing and the baby would have this huge belly laugh that just got me laughing pretty good, and I also like… There’s a podcast just for positivity that I have listened to, the guy’s name is Shawn. I think it’s pronounced Achor, it’s like anchor without the n, but he talked about… He studied happiness, I think he taught at Harvard for a little while, and he does these experiments and I think would be really funny to watch, but when he goes in and talks to groups he tells everybody to pair up two different… Everybody’s in a pair, and then he’s okay, somebody’s number one, and the pair, somebody’s number two, it doesn’t matter who’s which number right now, and then he proceeds to tell people for the next seven seconds, I want you to control your behavior, so I’m going to tell you to do something for seven seconds, you can’t partner with somebody you’re married, you can’t be paired up with somebody that you know really well, so what he does is he says okay, all the number ones… 

I want you to go neutral, go blank. No emotion, nothing. Number two, for seven seconds, I want you to stare deeply and warmly into the eyes of number one, now mind you, these might be complete strangers and both of them are supposed to not… They’re supposed to totally control their behavior, so for seven seconds they do that to stop, and then he reverses it, so number two is now number one, and vice versa is supposed to show no emotion and not smile, not laugh, and he said, Success is by controlling your behavior failure is you did something, usually laughing or smiling when somebody’s gazing deeply in your eyes and you’re supposed to be totally neutral. He does these experiments… He said 85% to 90% of people fail because they cannot control their emotions, they can’t help, but they’ll laugh or they’ll giggle or whatever, and he said it’s universal. It really predicts nothing, but it’s universal, it happens every time, but he talks a lot about the mirror neurons that we have, you know, if somebody’s yawning, we feel like we have to, Jon, but smiling and laughter is sort of contagious because of these mirror neurons. 

So, if one person starts laughing at the partner, the other one does too, and it’s just kind of one of his funny experiments, so that would be… I guess my take away is this podcast by… Or a couple of podcasts by Sean Achor. They’re funny to listen to. He describes him, he’s just super funny to hear talking anyway, he had some TED talks out there. So those are my two go-tos. 

How Have You Maintained Positivity in Uncomfortable Situations?

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How Have You Maintained Positivity in Uncomfortable Situations? from Patient Empowerment Network on Vimeo.

Despite feeling down or just not feeling well there are time when you have to show up for others whether it be family or friends. Lisa and Thomas, living with Myeloma along with Donna and Diana living with NHL share times when they’ve had to show up for others even when not feeling like their best selves.   

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Transcript:

Lisa Hatfield:

Have any of you ever felt the need to be positive even when you might feel like crap, just so others don’t feel awkward, just so other people don’t feel uncomfortable? So, we’ll go around we’ll start from… I’ll start from my left, Donna, Diana and then Thomas if you have any of those… Those instances, what do you do about that, Donna? 

Donna:

My situation was, I literally felt like crap, I was sleeping 10, 14 hours a day. My kids came home for Thanksgiving and I’m like, let’s just order from Whole Foods or from Jewel, we’ll get the complete meal, and they were like, No Mom, I really want to cook Thanksgiving will help you, we’ll do everything, and you can just supervise and… So, our meal was set up, we sat down at the table, my children made the stuffing… My son made the mashed potatoes and the stuffing, and my daughter made the gravy, we cooked the turkey, everything was cold… I mean literally cold, but we all sat there with a few friends, and I just wanted to just go in the bedroom and go to sleep. But I put up a good front. I was so happy we did it, they were so proud of themselves to make the meal for me that it brings tears to my eyes now, because they just wanted to have something normal, and for me, it was very difficult, but it was wonderful just to sit there and I kept putting my hand behind my back or maybe sit up straight because I was slumping and I was ready to fall asleep, but I’m telling you that situation for me, I still remember, and we talk about it every Thanksgiving, about what a wonderful meal it was even though it was the coldest Turkey and the coldest mashed potatoes I ever ate. The gravy was already curdling because it was so cold. It was just unbelievable. 

So, it’s a great experience. And it meant a lot to all of us really. 

Lisa Hatfield:

Well, now, it kind of did turn into a positive because you can talk about it with a smile and kind of laugh about it. Yeah. Sometimes we forge ahead. It turns into that sometimes it doesn’t, but thankfully, the cold mashed potatoes turned into a positive or something to laugh about later. Exactly. Yeah. Diana, do you have any thoughts on that? 

Diana:

Honestly, I don’t… I had the opposite situation that Donna did. I felt so bad leading up to my diagnosis, not knowing what was wrong with me, that once I started my treatment, I felt better on chemo. Who does that? I don’t know, but… So, when I took advantage of short-term disability, my immune system was compromised. This was well before covid, so I was in a great place once covid came because I knew exactly what to do and I had enough sanitizer to get through it, but going through treatment, I would always just put on my positive attitude before I left the house, and it just stayed with me and I surrounded myself with positive people, including the people who are treating me. 

Lisa Hatfield:

Yeah, good to hear that. Thomas, you ever feel like I have to put on a happy face even when you don’t feel like it? 

Thomas:

I do… As I mentioned earlier, maybe off-camera, we are always being watched and being a pillar in the community. I know that when I go to the clinic or when I go out in public, I’ll run into somebody that has seen me on an interview or know I have myeloma or maybe a patient that’s going through the exact same thing, and some of those days I am at my worst, I feel bad, but they will never know because they will always see the same happy go lucky Thomas that they see on video in the clinic or on the posts that I post on my social media. Always smiling. So, it’s something that I deal with all the time, but what I do is I do have an outlet. I have you guys… Because I always feel that I can talk to somebody that has been through some of the same things I’ve been through, they get an understanding of what I’m dealing with, instead of getting the generic… I understand answer. It’s something that happens more than a lot of people like to talk about, but it happens all the time. 

Lisa Hatfield:

Would you say sometimes you do go out into the community; I just have to ask… And this is kind of personal. Do you feel like that’s sort of a burden to put on a happy face, or do you just immediately go to your outlet of connecting with others and working out to let it not feel like a burden? 

Thomas:

I won’t look at it as a burden because I know that it’s inspiration to them. You know as long as I can inspire somebody else that’s dealing with their disease, or not even a disease, I hear it all the time, I’m in the gym, and people that’s not even diagnosed with cancer or any other disease, they look at me and say, Man, I know what you’ve been through, and I see you in here smiling and laughing and talking and working out, and I’m complaining that I had to get up and come in the gym this morning. So now that I’m in the gym and I see your exercising, you’ve really changed my day, but unbeknownst them that I’m on dexamethasone, I’m wide open… I have scar tissue from some of the areas, scar tissue pain from some of the areas I’ve had radiation. But no one will ever know that. 

Has Toxic Positivity Played a Role in Your Cancer Journey?

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Has Toxic Positivity Played a Role in Your Cancer Journey? from Patient Empowerment Network on Vimeo.

Toxic positivity is a buzzword that has been thrown around lately. Lisa, Thomas, Donna and Diana all share their thoughts on toxic positivity and how it plays a role in their lives now.  

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Transcript:

Lisa Hatfield:

So, talking about being positive and optimistic, and I don’t know if any of you heard of the phrase, it’s kind of a trendy buzzword or buzz phrase, toxic positivity, and I’ve only heard it once, and somebody had mentioned to me that I was too Pollyanna-ish with my diagnosis, and I think we’ve all mentioned it, it’s not… We can be positive, but it doesn’t mean we don’t have days that are a little bit darker or a little… We feel a little more down… It’s just that we tend to focus more on the positives when they’re there… Which they’re there a lot of the time, I mean, post there a lot of time. So, I actually had to look this up because I didn’t know the best definition of toxic positivity, and then I had… I brought up here, I want your thoughts on this. So this is from Psychology Today, I’m not sure if that’s a legitimate source, but they describe or Psychology Today explains toxic positivity as the act of avoiding, suppressing or rejecting negative emotions or experiences, this may take the form of denying your own emotions or someone else, denying your emotions insisting on positive thinking instead, so people say things, Well, look on the bright side, you get a lot of casseroles when you have cancer, which is true, and that’s great, but sometimes you’re not in the mood to hear that. 

Toxic positivity. What are your thoughts on that? To me, it almost sounds like maybe the positivity isn’t what’s toxic, it’s just people are in denial or avoidance of a situation, which is… I think I’m not a professional, but it seems pretty natural, especially when you’re first diagnosed, have you ever experienced toxic positivity or thought about it, or know anything about it, heard about it? Diana? 

Diana:

I mean like you, I had to look it up. When it was brought to my attention. And like you, I tend to take the positive route because that’s what’s best for me, but it’s okay not to be okay also, and I do acknowledge that in my book, there are some serious excerpts and there’s some serious quotes in the book, but I just… I think each person is different, and I appreciate it when people relate it to me in a positive manner, you know, I knew they were lying when they said, you look great bald, you have a great head. I’m like I really don’t, I really don’t but I still wonder to this day, I watch football and I’m looking at these guys with this long hair underneath their helmet, I’m like, why, if you’re a man, I would shave my head every day. But I’m totally going off subject here, but I just think it’s each individual person and how you respond to being positive, I think positivity begets positivity, you know humor begets humor. And kindness begets kindness. So, I don’t know, I’m a positive person. 

Lisa Hatfield:

And we know that about you. Yeah, that’s awesome. And I think we feed off of that too, I know when we were all together in our meetings working on projects your positivity, cracking jokes and Thomas making us laugh for a variety of reasons every 10 minutes, it helped all of us feel better. I wasn’t in the best place when I arrived on that trip, having just gotten my bone marrow biopsy results, but when you were around people that feel good and act that way… You can’t help but feel like, Oh, this is awesome, this is great. It just changes your perspective and outlook. Donna, I think you were going to say something a minute ago. Do you remember? I thought you raised your hand. 

Donna:

I was going to say something. I think for me, because I tend to be a pretty serious person, but I do like humor. After being diagnosed and several other family situations that were happening simultaneously, I had to think positive and I couldn’t be around anybody that wasn’t positive. I felt like anybody that was not positive or trying to be light on the subject was just too overwhelming for me. And I think the outcome from this, like I explained to you guys for a while ago, that I used to be an A plus plus person, just completely like your typical A plus plus person. And it’s changed me. And now when I speak to people or I speak to groups, whatever, and even in my own life, positivity, really a positive outlook really helps, and I think that’s one of the things that we should all stress, if any of us speak to any cancer survivors or anybody going through it is you have to find a place where you can just kind of think about something positive because you never know, and there’s always hope, and there’s great treatments out there, so if it’s all possible, think positive, that’s really how I feel. 

And it taught me a great lesson to be honest with you. 

Lisa Hatfield:

Great comments. Yeah. 

Thomas:

Yeah, being the most tenured on the panel, I’ve had numerous… I’ve had three stem cell transplants, I’ve also relapsed numerous times afterwards, and toxic positivity is something that again, acceptance is a reason that I could answer, or I can speak on how I relate toxic positivity to myself. Some of the phrases that I use are, it’s just another test to add to my testimony, that’s the positive part about it, that I have a testimony and that I’ve relapsed, but this test is something that’s going to… I need this test to get back to add to my testimony to get to where I need to be right now.

So that’s what I took away from the toxic positivity aspect of the conversation, and then as I was speaking to one of my friends yesterday, he enlightened me in conversation, we’re talking, and then he gave a toxic positivity speech, unbeknownst that I was already talking about. I was thinking about some things that he said that his father-in-law passed away, and he said that he’s in a better place, and that’s the toxic positivity that he used to explain to his wife because his wife was struggling with it, and he had to tell her that, hey, although he’s gone, he’s in a better place. 

So, we all use toxic positivity, and we don’t even know that we’re using it, but being that I’ve relapsed so many times, I utilize toxic positivity for myself because mentally, I need that drive to say, Okay, I relapsed again. I don’t want us to come to a dark place where I can’t believe I’m back into a position where… Why me, why me, why me, why me? And I just want to stay on the why not me side of the aspect, so that’s what I utilize toxic positivity for myself. 

Lisa Hatfield:

Those are great comments, and I think you’re right, I think what is called toxic positivity is sometimes just acknowledging what is not so great, but trying to make a positive out of it because we have to… It’s part of survival mechanism sometimes, and so… Yeah. 

Diana:

We have to keep from crying. 

Thomas:

Yeah, that’s why… That one that I always say, this is just another test to add to my testimony, that’s just something that keeps me on a higher level to not be an it down in the dumps about my disease that I’ve relapsed once again.  

Lisa Hatfield:

I love that comment too. It’s a great…

Diana:

I know I wrote it down. 

Lisa Hatfield:

That’s a great mantra. Maybe you can make one for me too, I’ll put up on my wall here… Yeah, I love that. And I do think, yeah, sometimes I think people have wondered if I’m in denial about what’s going on, I have my dark days, but it’s not denial, it’s just sometimes choosing not to focus on the negative news because we have to keep propelling ourselves forward, dealing with what we have… Yeah, we have cancer. Sometimes I don’t like when people say, oh, you’re a cancer patient, well I’m a person who has cancer, but I know it’s a common thing to say as a cancer patient, so… Yes, we’re cancer patients. 

Thomas:

But just say you’re a cancer survivor. 

Lisa Hatfield:

Cancer survivor. That’s true. Yeah, that was true. 

Lisa Hatfield:

Yeah, that is very true. So yeah, I think that that’s toxic positivity, it was something that somebody brought up to me before and said When I act kind of Pollyanna-ish, that that’s what that’s called… I had no idea what it was. I think I truly believe. I think sometimes people don’t know what to say. I think, Thomas, that you said that people just don’t know what to say when they know you have cancer, they don’t know what to say when they see you again and you look pretty good. Do I say she looks great? Do I say he looks good? Do I say, oh, I’m happy you’re doing well. They don’t really know, do you still have cancer, they don’t know if they can ask that question, so I think that… I’m not sure what I was going down a path with that, but I think people, whenever they say something, even if it sounds, may come across as, oh, you’re lucky you don’t have this or that, I think that’s another state of toxic positivity. It’s well-intended, I believe. I always believe people have the best intentions, they just don’t know what to say, so… 

And for myself, I might choose toxic positivity. I’m not sure if mine’s toxic or not, but I choose positivity too, so thanks for all of those comments and then Donna? Yeah. 

Donna:

I was just going to reiterate; I agree with you. I think it’s such an uncomfortable subject for patients and family and friends that they don’t know what to say, they try to say something positive. But sometimes it doesn’t come out. And for us, we have to be on a higher ground, we just have to be because we are dealing with something that’s emotional, physical, psychological, however you want to put it. And it’s a struggle some days. But the more we stay positive, the better we are, and like Thomas, Thomas has been through a lot, you’ve been through a lot, Diana and I’ve been through our own experiences, but we try to maintain positivity and… I really believe that it’s a very difficult subject, and there will always be a difficult subject for anybody to deal with whenever they’re diagnosed, so it’s difficult, but I think that we all try to figure out a better way to deal with it. And family is supportive, and so I try to get up every day and put my wig, my make-up on, and I had my uniform when I went out the door with a big smile, even if I was like dreading it. 

But you just have to do it. And so, I think it’s important for all of us to just maintain as much as we can maintain. 

Diana:

I was going to going to say, if you’re having one of those bad days, and like you said, most people are very well-meaning when they say something to you positive, again, just respond in a positive manner and then talk to somebody else who’s been there that you can vent about, like this group for me. I could vent with you… I worked for the Alzheimer’s Association for nearly 14 years. My mother died of younger onset Alzheimer’s, there’s nothing funny about that, there really isn’t… I felt like I could maybe joke about it because I’ve been there done that, but I didn’t want people coming up to me and saying, Oh, you work for the Alzheimer’s Association, I forgot that. You know that’s not funny, but you just try and respond because it’s an awkward situation, so just to respond to it in a positive manner and then you can… Vent to somebody who’s been there, done that. 

What Are Your Go-to Coping Mechanisms While Living With Cancer?

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What Are Your Go-to Coping Mechanisms While Living With Cancer? from Patient Empowerment Network on Vimeo.

Lisa and Thomas, living with Myeloma along with Donna and Diana, living with NHL share their unconventional ways they’ve found to cope with cancer. They share times when humor has helped them through dark moments and how exercise keeps them in high spirits.

See More from PEN-Powered Activity Guide 12

Transcript:

Lisa Hatfield:  

Hi, my name is Lisa Hatfield, I’m the myeloma Empowerment Lead for Patient Empowerment Network. We are going to have a program today., I’m super excited about with some panelists who are going to a little bit lighter program, going to talk about humor in cancer and maybe laughter, happiness and cancer. Quick disclaimer that this program is solely based off of our patient experiences, and it is not intended to be a substitute for your professional medical advice. Please talk with your medical team if you have any questions about your medical condition. So we’re going to start right off with our panelists introducing themselves, and we have actually two different types of cancer that are being represented today, we have protected blood cancer, multiple myeloma, and diffuse… I remember how to say it, diffused large B-cell lymphoma. I think it’s a type of non-Hodgkins lymphoma, is that correct? Okay, yes. So, I’m one of the Multiple Myeloma patients I’ve been… I’ve had multiple myeloma for four years now, doing relatively well, my bio markers in my blood are stable, I’m not really in remission because my bone marrow biopsy has come back positive, but doing well in general. Mentally, I’m doing great. 

Feel pretty good about things. And that’s why we’re here today. So, we’re going to just go around the room, the Zoom room, and I’ll just start from my left to right around. So, with Diane, you can just give your name, type of cancer, any treatment you’ve had, where you’re at now, and anything else you want to share about yourself? 

Diana:  

Sure, Diana Bosse, and I am one of those diffused large B cell lymphoma survivors. I was diagnosed in April of 2019, so I’m about getting close to four years out, which is promising. Doing great today. And just really happy to be here. I’m the author of a book called The Perks of Having Cancer, which I wrote during my treatment, so it was what kind of motivated me and kept me going.

Lisa Hatfield:  

Thanks, Diana and going around my room here… Thomas, your next in line. 

Thomas:

Hi, I’m Tomas Goode, and I am a multiple myeloma survivor. This year, 2023 makes 18 years for me. I was diagnosed at a very young age of 34 years old, and I am now living with this disease, and I want to show everybody how to… How I utilize my time to live with this disease. 

Lisa Hatfield:

Alright, thanks, Thomas. Donna. 

Donna:

Hi, I’m Donna Landsman, I’m also a diffused large b-cell survivor. I was diagnosed in 2013. I was re-diagnosed two years ago with follicular lymphoma, which is indolent and slow-growing, and honestly, if I never have symptoms, I never have to be treated, so fingers crossed. 

Lisa Hatfield:

Alright, we’re crossing them. Thanks, Donna. So, I was going to just mention, you guys can jump in a time… How all four of us met, we came together just a few months ago, I feel like we know each other super well now because we’ve stayed in contact, but in case anybody is wondering, we were brought together by the patient advocacy segment of a biotech company on the east coast near Boston. We did not know each other prior to that, and we worked on helping this particular organization understand the patient perspective, we also did a couple of activities where we all tried to support other patients who are… Who are may be located in hope lodges or receiving treatment and staying in hope lodges around the country. So over the course of two or three days, the four of us who were complete strangers coming together, had the best time together, at least that’s my perspective, I might be projecting that on to you thinking I had the best time, but we had a great time together, and I’ve always tried to maintain a decent attitude, a pretty positive attitude about my cancer and my diagnosis after having met the three of you and working together, it really reinforced how important positivity and having a sense of humor, even if it’s about our cancer, which we’ll talk about a little bit later.  

So, we’re going to be talking about humor and cancer, and that incorporates anything about positivity and cancer humor or laughter, happiness, they’re all different, but I think pretty important in dealing or coping with our cancer diagnosis. So just wondering if any of you have anything to share about how prior to diagnosis or just in life in general. So, anybody watching this has some thoughts or tips on what do you do to create more humor in your life or to acknowledge more humor, to be more humorous or have more positive in your life? Donna, any suggestions, any thoughts on how you… 

Donna:

Well, you know, you kind of brushed upon a subject a little bit it before, and so I really do need humor in my life, I need comedy, and so for me, I try to watch whatever I can… Like you had mentioned, America’s Funniest videos, I watch comedians. You know our own personal experiences, like with Sebastian Maniscalo, I listen to a lot because I relate to that type of humor, and so that actually took some of the edge off of a lot of my uneasiness or when things were like a really dark, deep day for me, I really look for humor and I need it, and you know like you said, we can find humor of going through our cancer experiences, and some of it is relatable and some of it isn’t. For some of it we can say Ah ha, yeah, I’ve been there. And so, it’s a way to touch upon something that another person can relate to, so I thought that was… I really liked the subject because I think we need more humor, and I think it needs to be lighter, so… It’s great. Yeah, really. 

Lisa Hatfield:

And Thomas, I know both you and Donna mentioned, it doesn’t really have to be humor, but even how you cope with some of the things that you talked about, working out, exercise, so you can talk about humor or exercise or both, how you used those for coping mechanisms. 

Thomas:

You know with humor, I utilize my groups, this group that I’m in, my group of guys that I ride my bikes with, the group of guys that I exercise with, we all keep each other laughing so much just by sending us stupid stuff we find on the internet, TikTok, whatever, and that really enlightens our day. But another coping mechanism is me in the gym. All throughout my myeloma journey I’ve utilized that as a way of outlet… A way of de-stressing you realizing that as an opportunity to take out everything that I have on the exercise equipment versus me sitting in and thinking about it, so I like to cope with anything that I’m dealing with in the gym like that. 

 Lisa Hatfield:

That’s awesome. And Thomas inspires all of us by sending pictures out so we can see him in the gym, makes us get up off the couch or you guys probably are good about the other two ladies, I’ll be like, Oh, I better get moving cause Thomas just sent a picture, I’m better going to do something. So yeah, Donna go ahead. 

 Donna:

I wanted to say that actually, I tell my children, I tell everybody that exercise is my drug of choice, and I exercise all through my chemo treatments, whether I did five minutes, whether I did seven minutes, my gym was open in my building 24 hours and I just needed to get down there to do something, and it was really a way to release… We really weren’t able to drink alcohol and not that I drink a lot anyway, but I needed to do something and the physical outlet was the best for me, really. And so, I’m with Thomas. Thomas and I worked out the day of our last day in the Boston area. 

Diana:

We saw the pictures. 

Thomas:

Yes, we took a one-handed selfie. 

Diana:

I agree, I think exercise is a great release, and for me, if you… I went to yoga classes when I was going through my treatment, and if you saw me trying to do some of the yoga poses, that in itself was very humorous. I get tangled up. 

Lisa Hatfield:

I’m like you guys, I like to work out. I don’t work out as much as you do, but I go for walks and whatnot, and that definitely helps me cope, and also just being around my friends. Thomas mentioned being in groups, but being around other people… I have a friend who is Greek, and she embodies that Greek passion and exuberance, and she is the side of me that… Things that are going through my head, she says them out loud, I love being around her, and I’m just going to mention this really quick, cause it has to do with my friend who’s that with my friend who is Greek, but Diana is an author, like she mentioned, she wrote, I have this book as my prop here, The Perks of Having Cancer, and no, Diana has not paid me or bribed me, or even given me chocolate for talking about her book, I just talk about books, that I like to read, but there’s one excerpt in there about watching  reality TV, and it references Dr. Pimple Popper. Well, what I did actually right after I was diagnosed for fun, I think was I never watched reality TV, especially the really gross things, but I found it the grossness of that kind of funny. 

So, I talked, I asked my best friend one night. Let’s have a gross TV night and watch something, not Dr. Pimple Popper, but just totally disgusting called The Toe Bro. And I might add, if I’m allowed to say that we do happen to have a retired podiatrist, so talking right now, Donna. So, where she might make money off of looking at feet… I’m disgusted by feet, so we watched The Toe Bro and my friend who has no problem making she’s full of one liners, she’s ridiculously funny watching The Toe Bro. She was making comments, I was laughing my head off, watching reality TV, which is so out of character for me anyway, that’s how I found humor and laughter, I guess before and during my treatment with my myeloma… Go ahead Donna. 

Donna:

In my defense as a retired podiatrist, I just want to say that it’s better than some of other aspects of our anatomy, so toes were fine for me 

12 Tips to Create an Educational and Inspiring Roundup of Healthcare News

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Staying current with healthcare news is essential for patient advocates. However, the sheer volume of information available can be overwhelming.  It can be challenging to sift through all the noise to find the most relevant and important news.

A healthcare newsletter or roundup can be really helpful here. Resources like these curate the most relevant and impactful healthcare news, usually by topic. They can help your readers stay informed about the latest scientific breakthroughs, research, and policy developments without having to spend hours scouring the internet for information.

With a well-crafted news roundup, you can build trust and credibility within your community, while also positioning yourself as a reliable source of healthcare news. In this post, I’ll share some best practices for creating a regular roundup of healthcare news that educates, informs, and inspires your readers.

1. Gather Your News

Before creating your roundup, you first need to gather the news. Throughout the week, make a note of healthcare stories you come across. It could be breaking news, new research, or policy changes. You can subscribe to Google Alerts to get notified when new articles are published on a specific topic.

2. Prioritize the Most Impactful Stories

With so much information available, it’s essential to be selective and focus on the most significant news stories. Pick three to five stories that are most relevant to your audience. It goes without saying that you should get your news from reputable sources. Whenever you use a source, evaluate it critically to make sure it’s reliable.

Carolyn Thomas, women’s health advocate and author at myheartsisters.org  shares this helpful tip:

“A specific online resource I regularly use is Retraction Watch, a site launched in 2010 under the auspices of the Centre for Scientific Integrity. RW has so far reported almost 25,000 scientific papers that have been retracted by journal editors – the majority due to authors’ scientific misconduct”.  Because I frequently cite emerging medical research and/or authors, it’s important to double-check that the studies have not been retracted, nor their authors discredited.”

3. Write a Summary

A concise summary explains what the story is about and why it matters. It should highlight the key points of each news item while providing context for people who are unfamiliar with it. In addition to statistics and quotes, summaries can include relevant quotes from experts and officials.

4. Categorize Based on Topic

Make it easier for readers to navigate your content by grouping news items by topic. Some common categories for healthcare news roundups are medical research, policy changes, technological advancements, and public health updates.

5. Stick To A Standard Format

Your roundup will be easier to navigate if you follow a standard structure. This can include including a headline, a concise summary, and a link to the original article for each story. By using a uniform layout, your readers will quickly become accustomed to your roundup’s format, making it more accessible and easier to digest

6. Link To The Original Source

Make sure to link to the original source of your news item. Readers can click on the links to read the full article if they want to know more. Seeing where the information comes from allows readers to assess the credibility of the source for themselves, so the roundup is transparent and credible. Don’t forget to check the links and make sure they go to relevant articles.

7. Set a Regular Publishing Schedule

Establish a regular publishing schedule for your roundup, such as weekly or bi-weekly. In this way, your readers will know when to expect your round-up and know they’re getting the most current information.

8. Include Visuals

Adding images to your roundup can make it more visually appealing and engaging. Select high-quality images that add value and are relevant to your content. Infographics and charts can be particularly effective at presenting statistical information, while video interviews can provide additional context. Additionally, visuals can increase the shareability of your content on social media platforms, helping to expand your reach and engagement with your audience.

9. Share On A Variety Of Platforms

Sharing your roundup on a variety of platforms is an effective way to reach a wider audience and increase engagement. Aside from promoting it on social media, post it on healthcare forums or discussion boards.  Additionally, consider sending it out in a newsletter or email blast to your subscribers.

10. Follow Up On Important Stories

Healthcare is a field that’s constantly evolving, so new developments can happen at any time. By following up on important stories, readers know they will get the most relevant and up-to-date information from you. When following up on stories, it’s important to provide context for readers who may not have read the previous roundup and to link back to any relevant content.

11. Encourage Reader Engagement

Create a sense of community by encouraging readers to leave comments and share their thoughts. You can do this by asking readers to share their thoughts, opinions, and experiences at the end of the round-up. It is also good to keep an eye on comments and respond so that a discussion can be facilitated and questions can be answered. Also, include social media share buttons on the post so readers can share it with their friends, increasing engagement and visibility. By encouraging reader engagement, you can create a more dynamic and interactive healthcare news roundup that is more likely to be shared and talked about.

12. Establishing Trust Through Consistency

This last tip comes from Terri Coutee, founder of DiepCFoundation.org, a non-profit organization that focuses on providing education, research, and support for patients who have undergone breast reconstruction surgery using DIEP flap procedures.

“Patient advocates often take on the role of curating content for a particular community. It is important to establish trust within a community by reporting consistently and with care and integrity. When you express interest in keeping a community updated on the latest evidence-based information, they count on you and look for new content. It is important to report accurately while at the same time understanding your reader and weaving skills of caring and compassion into your content. Establishing trust through consistency brings access to articles and information others may not seek on their own. You become their source of trusted information.”

By following the tips and best practices outlined in this post, you can curate the most relevant and impactful news stories while providing valuable context and insights for your readers. Your efforts will not only keep your audience informed and educated but also demonstrate your dedication and commitment to patient advocacy.

What Does Informatics Mean for Cancer Care?

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What Does Informatics Mean for Cancer Care? from Patient Empowerment Network on Vimeo. 

What kind of impact can informatics have on cancer care? Watch as expert Dr. Joseph Sirintrapun explains the components of informatics and the benefits they provide in care of cancer patients.

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Transcript:

Lisa Hatfield:

So, Dr. Sirintrapun, as far as informatics goes, can you give us the layperson or a patient-friendly version of what informatics is and what it means for cancer care?

Dr. Sirintrapun:

I really appreciate Dr. Palmer giving the segue for the informatic system. So this is…let me start with maybe when I explain to colleagues and other people about what informatics is. When you think of informatics, you think of three pillars, and we always…I almost have it down like a parrot. So it’s people, processes, and technology. And people always think it’s the technology, but it’s also people and processes, and that’s always been…whenever you see informatics, that’s the three pillars, but I wanted to add one more that Dr. Palmer also mentioned is data and information. You incorporate all those, so imagine all the four pillars coming together to enable the practice of medicine care and at a very high level, what I like to think of informatics is, it’s the science of bridging the gap, decreasing the chasm between the right caregiver to the patient who needs it. Because there are chasms everywhere, in terms of logistics, space, physicality, you have to travel five states to get with a rare tumor.

Those are chasms there. And I see informatics as bringing all those different pillars together. How do we do it so that the chasm is decreased? Or if it’s not a chasm, decreasing the friction, decreasing the burden between making these things work, making things more efficient. So I think I was hearing a little bit earlier about how can we automate things? As Dr. Palmer mentioned before, data, data abstraction data, being able to pull data from these gigantic enormous resources, it’s tough. And it’s not like we can hire the entire high school student population on their summer internship to go and read through these notes. And there’s not enough money, there’s not enough knowledge. And we need to find different ways that we can use automation, AI, or other things like that to do it.

And this is where informatics kind of delves in. How do we apply all these different things so that people can use it, because you never can forget about people. It works in the processes that take place and it’s the right technology. Because sometimes technology, it’s a great technology, but it’s not ready for certain things. I see a lot of technology kind of ahead of its time. It’s basically a tool in search of a problem and people try to stick it somewhere where it doesn’t fit. So it’s a lot of that. And as you can tell, I’m pretty excited about it because that in a nutshell gives you a feel of what informatics is all about, so.

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