PEN Blog Archives

The Price of Passion: Self-Care for the Online Advocate 

/in /by

The start of a new year often brings fresh energy and a reinvigorated commitment to creating positive change in the world. For health advocates, this might mean harnessing the power of online platforms to raise awareness, mobilize communities, and drive meaningful change. While the digital landscape offers unparalleled opportunities, it also comes with distinct challenges that can impact our mental and emotional well-being. 

Striking a balance between advocacy and self-care isn’t just important—it’s essential for sustaining this vital work over the long term. By nurturing our own well-being, we ensure we can continue to make a difference while protecting our passion and purpose. 

The Emotional Labor of Advocacy

Patient advocacy is deeply personal. It often involves sharing our own stories or offering support to others navigating similar challenges. While this vulnerability can create meaningful connections, it can also take an emotional toll. The constant exposure to difficult narratives, coupled with the relentless pace of online engagement, can significantly impact our mental and emotional well-being. 

Recognizing Burnout

Burnout can creep in subtly, often showing up as a gradual decline in well-being rather than a sudden crisis. It’s important to pay close attention to warning signs such as: 

  • Emotional Exhaustion: This is a core symptom of burnout, characterized by feeling drained, irritable, and emotionally detached. You may find yourself easily overwhelmed, lacking empathy, and experiencing a general sense of apathy towards your advocacy work. 
  • Decreased Engagement: A significant shift in your advocacy involvement, such as loss of enthusiasm, lack of motivation, and a sense of detachment from your cause. 
  • Cynicism: A growing sense of negativity and criticism towards your own efforts, disillusionment with advocacy progress, and even feelings of hopelessness or despair.  
  • Physical Symptoms: It is also possible to experience burnout physically. Chronic fatigue, sleep problems, headaches, or other physical problems may occur. These physical symptoms can further compound emotional exhaustion and decrease your overall well-being. 

Identifying these signs as early as possible is important for preventing burnout from escalating. Taking proactive steps to address these warning signals can protect your well-being and ensure the sustainability of your advocacy work for the long term. 

Online Advocacy and Self-Care: Practical Strategies

Let’s explore some effective strategies for navigating the online world while maintaining your mental health.

1. Set Boundaries

Creating a healthy online presence begins with establishing strong boundaries. Here are some practical strategies to support this: 

1.1. Implement Time Blocking

Time blocking is a powerful time management technique that helps you allocate your time more effectively and avoid digital overwhelm. 

    • Choose a consistent time for planning, such as the end of your workday or the start of your morning. 
    • Identify your top priorities for the upcoming work session. 
    • Estimate the duration of each task and include a 25% buffer for unexpected delays. 
    • Schedule tasks into your calendar, ensuring you have clear focus periods. 
    • At the end of the day, review your progress to adjust and improve your future planning. 

1.2 Create “Tech-Free” Zones

Designate specific areas in your home, such as the bedroom or dining table, as technology-free zones. This simple step encourages a healthier balance between online and offline life, helping you recharge and stay present in the moment.

1.3. Use Website Blockers

Tools, such as Cold Turkey1, Freedom2 and StayFocusd3 restrict access to distracting sites during designated work periods. These tools help you maintain focused attention on your tasks by removing the temptation to engage in non-productive online activities. By creating a distraction-free digital environment, you can stay on track and accomplish your goals more efficiently.

2. Leverage Online Tools and Resources

2.1 Social Media Management Tools

Schedule posts in advance, analyze engagement metrics, and track mentions of your cause or keywords with tools like Buffer.4 This not only saves you time and effort but can also provide valuable insight into how people are engaging with your content.

2.2 Mental Health Apps

There’s a wide variety of mental well-being and stress management apps available to support your mental health. These apps offer a range of features, such as guided meditation, mindfulness exercises, breathing techniques, and relaxation practices. Regular use of these tools can improve focus, reduce stress, and help you cultivate a sense of calm, making them valuable companions for maintaining emotional balance in a busy digital world.

3. Curate Your Feeds 

Finding a balance between staying informed and protecting your mental health is essential. Curate your online feeds to minimize exposure to negativity by unfollowing or muting accounts that consistently trigger feelings of anxiety, anger, or hopelessness. This intentional approach to managing your digital environment can have a positive impact on your overall mood, helping to reduce stress and lower the risk of burnout.

4. Share Your Truth On Your Terms

Authenticity is important in advocacy, but it’s equally important to prioritize your well-being. Remember you have the right to control what you share and when. Avoid oversharing or disclosing information that may make you feel uncomfortable or unsafe. 

5. Cultivate A Supportive Online Community

Advocacy is not a journey meant to be traveled alone. Building a supportive network is important for both personal well-being and professional growth. Such a network becomes a safe haven where you can express frustrations, celebrate wins, and process complex emotions without judgment. Personally, I’ve found immense validation, encouragement, and friendship through connections with fellow advocates. These relationships have not only enriched my journey but have also inspired me to keep moving forward. By working together, we can amplify our collective impact and achieve far greater success in advancing our advocacy goals. 

6. Develop Strong Communication Skills

Strong communication skills are essential for effective online advocacy and vital for maintaining your self-care. By practicing active listening, engaging in respectful and constructive dialogue, using “I” statements, and mastering de-escalation techniques, you can cultivate a more positive and supportive online environment for yourself and others.

7. Know That It’s Okay to Say No

It took me a long time to learn that it’s okay to say no. When I first became a patient advocate, I felt compelled to say yes to every opportunity, believing that doing so was necessary to make a difference. Over time, I realized that declining opportunities that don’t align with my priorities or that overextended my resources is not a failure—it’s an essential act of self-preservation. By setting boundaries, you create space to focus on the initiatives that matter most to you and where your efforts can have the greatest impact. In the long run, honoring your limits enables you to show up more fully for the causes and communities that inspire you.

8. Prioritize Self-Care

Prioritizing self-care isn’t a luxury—it’s a necessity for sustainable advocacy. Actively nurturing your physical, mental, and emotional well-being is essential for maintaining your passion and effectiveness over the long term. 

  • Make Time For Yourself: Schedule regular breaks from screens to give your mind and body a chance to rest and recharge. Disconnect from the constant influx of information and dedicate time to activities that bring you joy and relaxation. 
  • Physical Wellness: Ensure you’re taking care of your body with regular exercise, a balanced diet, and sufficient sleep. Advocacy work can be demanding, and maintaining physical health helps you stay resilient and energized. 
  • Engage in Activities You Love: Invest time in pursuits that bring you fulfillment, whether it’s spending time in nature, connecting with loved ones, diving into a favorite hobby, or enjoying a good book. These activities reduce stress, lift your mood, and provide a much-needed reprieve from the demands of advocacy work. 
  • Celebrate Your Wins: Take time to acknowledge and celebrate your achievements, no matter how small. Recognizing your efforts—even the seemingly minor ones—can boost your confidence, sustain your motivation, and remind you of the impact you’re making. 

Remember, self-care isn’t selfish—it’s an investment in your well-being. By prioritizing yourself, you’re better equipped to show up fully for your advocacy work and the communities you serve. 

Cancer Awareness Calendar 2025

/in , /by

January

Cervical Cancer Awareness Month

Blood Donor Month

February

National Cancer Prevention Month

Gallbladder and Bile Duct Cancer Awareness Month

World Cancer Day (February 4, 2025)

National Donor Day (February 14, 2025)

Rare Disease Day (February 28, 2025)

March

Colorectal Cancer Awareness Month

Kidney Cancer Awareness Month

Multiple Myeloma Awareness Month

Triple-Negative Breast Cancer Day (March 3, 2025)

International Women’s Day (March 8, 2025)

Anal Cancer Awareness Day (March 21, 2025)

April

Head and Neck Cancer Awareness Month

National Cancer Control Month

Esophageal Cancer Awareness Month

Minority Cancer Awareness Month

Minority Health Month

Testicular Cancer Awareness Month

World Health Day (April 7, 2025)

AML Awareness Day (April 21, 2025)

May

Bladder Cancer Awareness Month

Brain Tumor Awareness Month

Cancer Research Month

Clinical Trial Awareness Week

Melanoma and Skin Cancer Awareness Month

Skin Cancer Detection and Prevention Month

Melanoma Monday (May 5, 2025)

Women’s Check-up Day (May 12, 2025)

Women’s Health Week (May 11-17, 2025)

June

Cancer Survivors Month

Cancer Survivors Day (June 1, 2025)

Men’s Health Week (June 9-15, 2025)

July

UV Safety Awareness Month

Sarcoma and Bone Cancer Awareness Month

 August

Summer Sun Safety Month

World Lung Cancer Day (August 1, 2025)

September

Childhood Cancer Awareness Month

Uterine Cancer Awareness Month

Gynecologic Cancer Awareness Month

Blood Cancer Awareness Month

Thyroid Cancer Awareness Month

Ovarian Cancer Awareness Month

Prostate Cancer Awareness Month

MPN Awareness Day (September 11, 2025)

World Lymphoma Day (September 15, 2025)

Take a Loved One to the Doctor Day (September 16, 2025)

October

Breast Cancer Awareness Month

Liver Cancer Awareness Month

National Mammography Day (October 17, 2025)

November

Lung Cancer Awareness Month

National Family Caregiver Month

Carcinoid Cancer Awareness Month

Pancreatic Cancer Awareness Month

Stomach Cancer Awareness Month

From Cancer Diagnosis to Healing: 21 Tips and Resources for Body, Mind, and Spirit

/in , /by

Last month, I quietly marked a significant milestone—20 years since my breast cancer diagnosis. It’s a strange thing, this “20-year cancerversary”. It feels like a lifetime ago, yet it still feels raw and surprisingly recent. The shock of that day, hearing the words “you have cancer”, and the surreal weeks and months that followed, remain forever etched in my memory.

Looking back, I often think about the things I wish I had known back then—truths and lessons that could have eased the journey or offered comfort in moments of anxiety. That’s why I want to share some of those insights with you if you’re beginning your own cancer journey. I hope these tips will provide guidance, strength, and perhaps a little light to help you navigate the challenges ahead.

1. Become Your Own Best Advocate: Take charge of your healthcare journey. Ask questions, seek second opinions, and clearly communicate your needs and concerns to your medical team. Don’t hesitate to advocate for information that is tailored to your specific situation, age, and lifestyle.

Further Reading: Patient Advocacy: Understanding Your Illness – Patient Empowerment Network

2. Educate Yourself: Learn about your specific cancer type, treatment options, and the latest research. Knowledge is power and can help you make informed decisions. Use trusted sources like your medical team, cancer organizations, and support groups. Understand that the right information, provided at the right time, empowers you to make informed decisions.

Further Reading: How to Read and Understand a Scientific Paper – Patient Empowerment Network

3. Participate in Shared Decision-Making: Shared Decision Making (SDM) means you and your doctor work together to make choices about your healthcare. You’ll learn about the pros and cons of different treatments, how likely they are to work, and what side effects might happen. Don’t be afraid to ask lots of questions until you feel comfortable with the options presented to you.

Search here for articles on SDM.

4. Explore All Treatment Options: Discuss various treatment approaches with your doctor, including standard medical treatments, clinical trials, and complementary therapies like acupuncture or massage alongside your regular medical care.

Search here for articles on clinical trials.

5. Understand Cancer-Related Fatigue (CRF): Cancer-related fatigue is different from the tiredness you feel after a long day. It’s like having your battery completely drained, and no amount of sleep or rest seems to recharge it. This kind of fatigue can be overwhelming and make it difficult to do even simple everyday tasks. It’s important to talk to your doctor if you’re experiencing this, as there may be ways to manage it and improve your energy levels.

Read How To Cope With Cancer-Related Fatigue for more tips and information.

6. Be Aware of “Chemobrain”: Understand that cancer treatment can affect cognitive function. This is often called “chemobrain,” even if you didn’t have chemotherapy. It can feel like a mental fog, making it hard to remember things, focus, or think clearly. This can be frustrating, but it’s important to know that many people experience this. Staying mentally and physically active can help your brain recover. This could include things like puzzles, reading, socializing, and light exercise.

Further Reading: Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes – Patient Empowerment Network

7. Manage Your Energy Bank: Be mindful of your energy levels. Think of your energy as a bank account – balance energy expenditure with rest and relaxation to avoid “overdrawing” your reserves. Prioritize tasks and schedule activities for times when you have more energy. Build in rest breaks throughout the day.

8. Engage in Light Exercise: Even though you may not feel like it, regular light exercise can help reduce fatigue and improve your mood. This doesn’t have to be anything strenuous – a short walk, some gentle stretching, or chair exercises can make a difference. Start small and gradually increase your activity level as you feel able. Listen to your body and don’t push yourself too hard. Even a little bit of movement can go a long way in improving your overall well-being.

Watch: What Role Does Exercise Play in Cancer Treatment? – Patient Empowerment Network

9. Eat a Healthy Diet: Nourish your body with a balanced diet that supports energy levels and avoid processed foods. Choose a variety of fruits, vegetables, whole grains, and lean proteins. Drink plenty of water throughout the day. Dehydration can worsen fatigue and other side effects. If you’re struggling with taste changes or nausea during treatment, consult an oncology dietitian for personalized advice and support. They can offer strategies to manage these side effects and maintain adequate nutrition.

Further Reading: Nourishing Your Body and Mind: Nutritional Advice For Cancer Survivors – Patient Empowerment Network

10. Prioritize Your Well-being: Facing cancer can be incredibly stressful, and it’s easy to get caught up in appointments, treatments, and worries. But taking care of your emotional and mental health is just as important as taking care of your physical health. Engage in activities that bring you peace and relaxation, such as meditation, spending time in nature, or pursuing hobbies. Even a few minutes of quiet reflection can help calm your mind and reduce anxiety. There are lots of apps and online resources to guide you.

11. Build a Support System: Connecting with others can make a huge difference in your emotional well-being and help you cope with the challenges of cancer. Support groups offer a safe space to connect with others who truly understand what you’re going through. If you’re not feeling up to in-person meetings, online forums and communities can be a great way to connect with others from the comfort of your home.

Check out this list of Online Cancer Support Groups and Organizations by Type of Cancer – Patient Empowerment Network

12. Allow Yourself to Feel Your Emotions Fully: It’s perfectly normal to have a rollercoaster of emotions when you’re dealing with cancer. You might feel scared, sad, angry or frustrated. Don’t judge yourself for having “negative” emotions. They are a natural part of the human experience, especially during difficult times. Allowing yourself to feel your emotions fully is an important part of processing what you’re going through.

13. Tune into Your Feelings: Taking time to check in with your emotions can help you understand your feelings with more awareness. Think of it like taking your emotional temperature. Set aside a few minutes each day when you can be still and undisturbed. Take a few deep breaths, inhaling slowly and exhaling fully. This helps to calm your mind and body. Ask yourself “What am I feeling right now?” Don’t overthink it, just notice the first emotion that comes to mind. Name the emotion without judgment. For example, “I’m feeling anxious,” or “I’m feeling sad.” Pay attention to any sensations in your body associated with the emotion. Is your chest tight? Are your shoulders tense? Do you feel a knot in your stomach? Don’t try to change the feeling or push it away. Simply acknowledge it and let it be.

Important Note: If the emotion intensifies or becomes overwhelming, stop the exercise and try again later. You can also seek support from a therapist or counselor if you’re struggling with difficult emotions.

14. Write Down Your Feelings: Sometimes, it’s easier to make sense of your emotions when you put them into words. Journaling can be a powerful tool for processing your experiences and navigating the emotional ups and downs of cancer. Looking back on your journal entries can also help you see how far you’ve come and recognize your own strength and resilience.

Further Reading: The Power of Journaling During Cancer Treatment – Patient Empowerment Network

15. Pay Attention to Grief Triggers: Anniversaries of your surgery, diagnosis, and other cancer-related milestones can reawaken difficult memories and emotions. Be mindful of these dates and plan ahead for ways to cope with potential emotional triggers. This might involve scheduling time for self-care, talking to a loved one, or engaging in a relaxing activity. You might also consider creating a meaningful ritual to acknowledge the anniversary or milestone such as lighting a candle or visiting a special place.

Further Reading: Grief, Loss, and the Cancer Experience – Patient Empowerment Network

16. Accept Anxiety as a Normal Response: Anxiety is a natural response to a challenging situation. It’s like an alarm system that gets triggered when your body perceives a threat. In this case, the threat is the cancer diagnosis and all the unknowns that come with it. When you acknowledge and accept your anxiety, you can start to develop healthy ways to manage it. There are many effective strategies for coping with anxiety, such as relaxation techniques, mindfulness practices, and exercise. However, if you find that your anxiety is overwhelming or interfering with your daily life, reach out for help and support.

Further Reading: Coping With Scanxiety: Practical Tips from Cancer Patients – Patient Empowerment Network

17. Identify Your Body’s Stress Response: Stress can manifest in many ways, and often, our bodies give us clues long before we consciously register feeling stressed. Learning to recognize your unique stress signals can help you manage anxiety and take steps to calm yourself down. For example, when you’re anxious, you might find yourself taking short, shallow breaths, or your heart might pound or feel like it’s skipping beats,  Once you’re aware of your physical stress response, you can take steps to interrupt it. This might involve deep breathing exercises, progressive muscle relaxation, or mindfulness techniques.

18. Acknowledge Emotional Trauma: Cancer is more than just a physical disease; it can be a deeply emotional and psychological experience. It can shake your sense of self, challenge your beliefs about the world, and bring up difficult emotions like fear, vulnerability, and grief. Recognizing the emotional trauma of cancer validates your experience and allows you to give yourself the compassion and care you deserve.

Further Reading: Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery – Patient Empowerment Network

19. Honor Your New Reality: For many of us cancer is a life-altering experience. It can shift your priorities, change your outlook on life, and even redefine who you are. It’s important to acknowledge and honor this new reality, even as you grieve for the life you had before. Even in the face of adversity, there is potential for growth and transformation. Cancer can teach you valuable lessons about resilience, gratitude, and the importance of living each day to the fullest.

Further Reading: Finding Your New Normal: 7 Steps To Navigating Life After Cancer – Patient Empowerment Network

20. Find the Joy: Don’t let cancer overshadow the beauty and goodness in your life. Actively seek out experiences that bring you happiness and fill you with gratitude. Spend time outdoors, breathe in the fresh air, and appreciate the beauty of the natural world. Share laughter, stories, and hugs with the people who matter most to you.

Watch: Meditation on Joy – Patient Empowerment Network

21. Live with Purpose: A cancer diagnosis can be a profound wake-up call, prompting you to re-evaluate your priorities and consider what truly matters in life. This is an opportunity to connect with your deeper values and live each day with intention and purpose. Cancer may strip away the illusion of certainty, but it also illuminates what truly matters. Let this heightened awareness guide you as you rebuild your life, find hope in unexpected places, and honor the resilience you never knew you had. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

Wishing you strength and healing on your journey.

Understanding Clinical Trials and Associated Cost and Mitigating Financial Stress

/in /by

Remember the law that passed 2 years ago that prevented medical debt of under $500 from hitting your credit report? That was good news for many people. That, however, doesn’t stop debt from actually happening while potentially compromising your financial future. Let’s take a look at medical debt in the United States and how it is distributed, and what can you do to mitigate the effects of medical debt.  

Clinical Trials: There are several ways to find a clinical trial. You can find them yourself or you can work with your health care team to identify a clinical trial that might be a good fit for you. Some of the resources available to help you find a clinical trial are: 

 It’s very important to talk with your healthcare provider as well as your insurance company to find out what they will pay and what labs, scans or other medical procedures will not be covered under the clinical trial. The Patient and Affordable Care Act requires most private insurance companies to cover the routine costs of your health care when you participate in a clinical trial. The routine costs include office visits, blood tests, and imaging scans that you would receive if you were getting the standard of care. Remember, your insurance company cannot drop your coverage or refuse to let you take part in the clinical trial.  Also, you need to be aware of other associated costs such as: Any research costs that are specific to the trial are not required to be paid for by your insurance company. Check with the trial administrator to see if they will cover these costs. If you are participating in a clinical trial that is out of network, your insurance company is not required to pay for the associated cost if they would not normally cover out-of- network providers. Some insurance carriers will pay at a lower rate, resulting in you having to pay more out-of-pocket. 

For other insurance providers such as government programs includingMedicare, military, and VA plans, different rules may apply. To review coverage go to: cancer.gov/about-cancer/treatment/clinical-trials/paying/federal-programs. 

If you are covered under Medicaid, Medicaid will cover your routine associated costs with the clinical trial. You cannot be denied coverage based on where the clinical trial is conducted or whether the provider is in or out of network. For more information go to: www.medicaid.gov  

  • Location of the trial, which may require additional costs for travel, parking, ground/air, lodging, food, etc. 
  • What is the time commitment and how will it impact your ability to work or care for your family if you need to take time off for an extended period of time, will you still be able to meet your financial obligations? 

What happens if your insurance company says no? 

 First, don’t give up. A large percentage of coverage requests and claims are paid on appeal.  

Again, you will need to file an appeal if your insurance company won’t pay treatment costs. You can contact the drug manufacturer or advocacy groups for assistance. Also, have your healthcare provider reach out to them as well. Your doctor can also file a letter with the appeal telling the insurance company about the benefits of the trial. They can include information about other insurances who have paid for the trial. 

If you need assistance with filing the appeal of your claim, go to: 

I have heard many times patients say, “I don’t want to take money from people who need it more than I do” when they are in situations where they really need it. Non-profit grants used to assist patients with the cost of co-pays, deductibles, insurance premiums, coinsurance, travel and many other needs already have been vetted for the patients they want to serve. If you qualify, then don’t hesitate to seek them out.  

Don’t forget to seek financial assistance from local organizations as well. A number that people seem to forget they can call 211 to inquire about local assistance programs. 

You all probably have heard or even know someone who has resorted to Go Fund Me to raise money to pay for medical bills. Go Fund me has become a standard resource for raising money to pay for medical needs. It’s unfortunate that the need is so great.   

As with many things, the people who are most harmed by the high costs of medical care are those who are already disparaged. Mainly people of color.  

Asking about your treatment options as well as the associated costs before participating in a trial, or getting treatment is key in advocating for yourself. And seeking out help understanding your insurance coverage as well as other available resources is the key to better and sustainable treatment as well as reducing financial stress.   

Sources:  

https://triagecancer.org

https://healthtree.org

https://www.medicaid.gov

https://www.patientadvocate.org 

Estate Planning: Secure Your Future, Protect Your Legacy

/in /by

Estate Planning is probably the least understood area of financial planning. It is also possibly one of the most important components of a solid financial plan. Many people think it is only for the rich, or it can be done later when you’re older. Neither of these are true or wise! There are many benefits to estate planning that are beneficial to you when you are alive.

Your estate is everything you own, minus everything you owe. Everyone has an estate! 

Estate Planning

Estate planning is a well thought out action plan you can use to determine what happens to your assets, such as house, car, savings, businesses, and other valuables as well as your obligations, (debt) while you are alive and after you die.

It is very common for even people with a lot of financial resources to not have any plan in place when they become sick or die. You’ve heard of celebrities like Prince or James Brown that have plenty of money but failed to plan. 

Therefore it is important for everyone to make sure that all of your resources are working, and that there are no gaps or weaknesses that will surface at the moment we need to be concentrating on other things such as your health and recovery. 

A Will 

This is one of your first lines of defense in estate planning. This is a legal document that outlines how assets are distributed, who takes care of children and pets, and other wishes you may have after you die. 

An Executor

An executor is a trusted person you appoint to manage your affairs after death. You should make sure this person is competent and able to manage these affairs as they can become quite complicated. Appearing in court, getting inventory evaluations, debt information collection, valuable papers, are only some of the responsibilities that are required of the executor, 

A Power of Attorney

Not only is it important to “get your affairs in order” in the event of death, but there are many estate planning tools to help you manage your finances while living. For example: A Medical Power or a General Power of Attorney.

A durable power of attorney can help you protect property in the event an individual becomes unable to handle financial matters. It also allows that person to authorize someone else to act on his or her behalf to do things like pay everyday expenses, collect benefits, watch over investments and file taxes. The power of attorney must be drawn up by an attorney. This is important. They will keep a copy on file. I would also suggest that the person you name is someone who has your best interests in mind as they will have access to your money. This person needs to be reliable, trustworthy and responsible. Taking the time to identify this person is imperative. 

A Living Trust

A living trust (also known as a revocable trust) is a separate legal entity that protects property and investments. It’s called a living trust because it’s meant to function while a person is alive. The Trust is controlled by the person who creates it, and they can change the terms, transfer money, transfer property in and out of the trust or end the trust altogether. That individual can also name a co-trustee, such as a financial institution or a loved one to manage the assets in case he or she is unable to do so. Do not wait until you are in a crisis to set up a living trust. 

Keep mind, there are many types of Trusts. Working with an Estate Attorney as well as a Financial Planner can help determine which one is right for you. 

An Advanced Medical Directive

An advanced medical directive lets others know what medical treatment is desired, and it establishes who will make medical decisions for the individual in the event they are unable to make decisions for themselves. Depending on what’s allowed by the state in which the person lives, this document may also include a living will, a durable power of attorney or healthcare, and a do-not-resuscitate order.

Planning Ahead

Planning ahead for these things will allow everyone to know in advance what you want. It will allow expenses to be paid without interruption and can give you peace of mind as to how you want to be medically cared for in the event you cannot make those decisions for yourself.

It is possible to make sure you have your assets titled in a way that can help you manage your assets both before and after your death. If you have a lot of assets and different kinds of assets, a financial plan can be your first line of defense in pulling everything together. You should make sure the person you appoint as executor or successor executor as well as appointing a guardian for minor children are aware of your requests and have access to your documents. 

Some estates are simple and others may be more complex, especially when you have blended families. I suggest talking to an estate attorney to give you direction. Planning now can save you thousands of dollars later. 

You can prepare your funeral request in a will. As well as many other considerations.

Imagine the peace of mind you and your family will have when you have prepared in advance. 

I know it isn’t an easy topic to dwell on, but making sure you have everything in order can save a lot of headache for you later and your family at your death. The financial and emotional cost of waiting is too high! 

Sources:

American Bar Association, Real Property, Trust and Estate Law Section: https://www.americanbar.org/groups/real_property_trust_estate/ 

Trust and Will: What is Estate Planning? Estate Planning Basics Patrick Hicks, Head of Legal, Trust & Will: https://trustandwill.com/learn/what-is-estate-planning 

Men Get Breast Cancer Too: The Forgotten Face of Breast Cancer Awareness Month

/in , , , , /by

There is a popular misconception that breast cancer is a disease that only affects women, but it can affect anyone, no matter what their gender. Rod Ritchie, a male breast cancer survivor and advocate, is working to dispel this misconception, advocating for men with breast cancer to receive the recognition and support they deserve. In this interview, Rod discusses the stigma surrounding male breast cancer, critiques the pink-washing of breast cancer awareness and the exclusion of men from these campaigns, and shares his vision for a more inclusive approach to education and support in the future.

Rod, you’ve spoken about how the ‘Pinktober’ campaign can feel exclusionary to men with breast cancer, and how this can impact awareness, support, and even diagnosis for men. Can you elaborate on these impacts and suggest ways to create a more inclusive campaign?

The pink issue for men starts with many of them being unaware they are even susceptible to the disease. A subsequent later diagnosis can lead to a poorer prognosis. The pink charities need to double down on their efforts to explain and publicize the genderless nature of the disease.

You’ve mentioned that receiving a breast cancer diagnosis was especially challenging as a man. Can you tell us more about that?

My first emotion was the reminder that my mum died from breast cancer when I and my three brothers were young. That said, I quickly sought treatment and was pleased that the pink dollars had funded much research which obviously benefited all genders presenting for treatment.

You and Rob Fincher created the “Male Breast Cancer Manifesto”, which aims to raise awareness and improve outcomes for men diagnosed with breast cancer. Can you highlight some of its key action points,

The Manifesto is now seven years old and I’m really pleased to see how much progress has been made in achieving its goals. These include a reduction of sexual stereotyping, a day set aside in October for men, more inclusive imagery, and better information. Remaining on the list are, more research on men and the disease, and advocacy for screening programs for men with a genetic propensity and/or a family history of breast cancer. Unfortunately, Rob is not around to see if these last two points are achieved.

For someone who wants to raise the issue of male breast cancer but feels hesitant, what advice would you give them to confidently and constructively engage with a charity?

Breast cancer charities are generally keen to get feedback, so I’d say make a list of changes you’d like them to consider and send them to the director. And, if at first you don’t succeed, hang in there. All real change takes time.

Sharing personal stories is a powerful advocacy tool. What was the most impactful or surprising response you received after sharing your story publicly?

I was surprised by how readily and enthusiastically my story was received by the breast cancer community, how widely it was shared, and how much media attention I received. I must say this has kept me optimistic about change and is the reason I’m still on the case 10 years later.

Looking ahead, what are the most critical areas where you believe we need to focus our efforts to improve the support and outcomes for men with breast cancer?

More research on breast cancer in men and other genders would help refine treatments and improve their effectiveness. Additionally, providing better access to screening for everyone at risk is crucial for early detection and successful outcomes.

About Rod Ritchie

Rod is a Sydney-born writer, internet publisher, and breast cancer patient activist, diagnosed in March 2014, with Stage IIIB IBC. Two years later, he was diagnosed with prostate cancer. Currently he’s NED for both cancers. He has a website MaleBC.org and you can follow him on X @malefitness.

Male Breast Cancer Manifesto

https://malebc.org/?page_id=875

PRESS RELEASE: Patient Empowerment Network Joins the National Health Council

/in , /by

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

Giving Cancer Patients a Voice: The Role of Patient-Reported Outcome Measures

/in , /by

The diagnosis and management of cancer profoundly impact every aspect of a patient’s quality of life. Yet, despite its importance, quality of life (QoL) is not always a focus in cancer research and clinical trials. Perhaps this is due to the difficulty in accurately measuring something so inherently subjective and complex. While existing tools capture different aspects of QoL, no single tool covers every dimension. In addition, traditional clinical trials tend to emphasize physical well-being, underrepresenting psychological and social factors despite their importance for patients’ overall well-being. 

Given the challenges in capturing the full spectrum of QoL, Patient-Reported Outcome Measures (PROMs) provide a solution by allowing patients to share their direct experiences, including the physical, emotional, and social impacts of cancer and its treatment.  

PROMS – Giving Cancer Patients a Voice

Besides providing direct communication between patients and their healthcare providers, PROMs also give patients a higher level of autonomy when it comes to their healthcare. Treatment adjustments can be made based on these insights in order to align with patients’ personal goals, whether it’s prioritizing quality of life over survival or balancing symptom management with treatment efficacy. 

On a broader scale, PROM data can drive systemic improvements by offering concrete evidence of patients’ needs, which can inform policy changes, resource allocation, and advocacy for enhanced cancer support services. 

Challenges and Considerations in Implementing PROMs

There are several challenges and considerations to implementing PROMs in routine cancer care and research. 

Standardization and Validation: It is important to develop validated and standardized PROMs to accurately reflect cancer patients’ experiences. Quality of life is impacted by cancer types and disease stages differently, so disease or stage-specific PROMs are needed. PROM guidelines emphasize the need for comprehensive and robust measures to ensure their validity and reliability across a wide range of patient populations.1 

Complexity of Measurement: Capturing the multifaceted nature of quality of life, which includes physical, emotional, social, and psychological dimensions, requires comprehensive tools. This complexity can make it challenging to develop PROMs that are both thorough and easy for patients to complete. 

Integration into Clinical Practice: Incorporating PROMs into routine clinical workflows can be difficult due to time constraints, the need for training healthcare providers, and ensuring that the data collected is used effectively in patient care. 

Patient Burden: For PROMs to be successful, they must not be excessively burdensome for patients to complete. Long or complex questionnaires can lead to lower response rates and incomplete data. 

Cultural and Linguistic Adaptation: PROMs need to be culturally and linguistically adapted to be relevant and understandable for diverse patient populations.  

How Can Patient Advocates Overcome These Challenges? 

As a patient advocate, you have a unique role in improving cancer care.  You can help ensure that patient voices are heard and that quality of life is prioritized in cancer care. 

Here are some specific actions you can take: 

  • Host Educational Sessions: Organize workshops, webinars, and support groups to educate other patients about PROMs and their importance. Share practical tips on how to complete these measures and discuss their benefits. 
  • Public Speaking: Share your personal story and experiences at conferences, workshops, and community events to highlight the importance of PROMs. 
  • Social Media Advocacy: Use social media platforms to raise awareness about PROMs and their benefits. Share informative posts, patient stories, and advocacy messages. 
  • Create Resources: Develop easy-to-understand materials such as infographics, videos, and online content that explain PROMs and their role in cancer care. 
  • Engage with Healthcare Providers:  Encourage healthcare facilities to implement pilot programs using PROMs and share success stories from institutions that have already benefited from PROM integration.  
  • Policy Advocacy: When engaging with policymakers, present case studies or data showing how PROMs have improved patient outcomes and satisfaction in similar settings. 
  • Collaborate with Researchers: Partner with academic institutions and research organizations to conduct studies using PROM data. This can help identify areas for improvement in cancer care. 
  • Data Sharing: Advocate for the sharing of de-identified PROM data to facilitate broader research and quality improvement initiatives. 

The Future of PROMs in Cancer Care

As the development of more refined and targeted PROMs continues, the future of cancer care looks promising. With advancements in technology, digital health tools will make it easier to collect and analyze PROM data in real time, enabling more dynamic and responsive care.   

A key driver of this technological progress is artificial intelligence (AI). By streamlining data collection through adaptive questionnaires, improving data analysis with predictive algorithms, and enabling real-time patient health monitoring, AI will revolutionize how PROMs are used in healthcare. For instance, AI-powered tools like natural language processing (NLP) can analyze free-text responses, making PROMs more personalized and comprehensive. Predictive analytics will empower healthcare providers to anticipate and address declines in a patient’s quality of life, leading to quicker, more proactive interventions. Furthermore, AI will help reduce bias in interpreting PROM data and ensure that these tools are culturally and linguistically adapted for diverse populations. 

By fully integrating PROMs into standard practice, we can shift towards a more patient-centered approach to cancer treatment—one that values not just survival but also a meaningful quality of life. This patient-centered approach has the power to transform cancer care, ensuring that all aspects of the patient experience are considered, respected, and addressed, making cancer care more holistic and responsive to the needs of each individual.   

The Potential of Generative AI to Power Patient Advocacy

/in /by

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. 

How to Download PEN’s Health Storylines App

/in /by

Patient Empowerment Network (PEN) has partnered with Health Storylines to bring you a mobile app to access PEN’s resources and Health Storylines’ tools on the go.

In the video below, you will learn:

  1. How to download our app
  2. The benefits of our app
  3. The tools automatically available for you to use

 

Download the App Today

Download the app to your mobile device today by using the link or QR code below:

Download App

 

How Does a Disability Impact Spending in Retirement?

/in , /by

For a variety of reasons, people who have suffered a disability before retirement age and after finding themselves having to manage their spending in retirement quite differently than if they had not had a disability. Let’s review the major reasons that a disability will affect retirement spending. 

 First, we will look at the pitfalls of a disability prior to full retirement age. 

As you know, full retirement age, according to the Social Security Department, is age 66 or over depending on your birth year. This age will allow you to qualify for Medicare and not be reliant on an employer plan. If you become permanently disabled prior to 65 Medicare qualifying age, then you may face additional cost for health insurance if you are not covered by another plan. Additionally, you may not be able to make additional savings in a retirement account, thereby reducing your retirement assets. Reduced income, as a result of leaving work early, may also mean you are tapping into retirement savings to meet everyday living or healthcare expenses. It may become even more daunting if you have a spouse who left work early to become a caregiver. All these things add up. And it not only affects your personal financial needs, but also those of your spouse and family. And don’t forget, to qualify for Medicare, prior to age 65 you have to be considered permanently disabled through the Social Security administration for 24 months (about 2 years) before qualifying for Medicare. 

Another barrier to income before full retirement age is Social Security. First you must have paid into Social Security for a period of time before you can qualify for Social Security benefits. If you do not have the required time, you will not qualify for social security at all. This, however, does not apply to the spouse of a social security beneficiary regarding spousal or survivor benefits. 

Now let’s review the effect of disability in retirement when you’re at full retirement age. At this point you automatically qualify for Medicare which gives you the assurance of health insurance. However, if you have a disability, you need to make sure that the Medicare plan you choose is going to cover your healthcare needs. Carefully review your options. Buying an additional Advantage plan or Supplemental plan with a stand-alone Prescription plan should also be included in your overall retirement expenses/costs. Patients that have a long-term illness as well as an expensive one such as cancer, need to be extremely diligent in controlling and managing the cost of their care. Careful due diligence must be maintained in understanding treatment cost, availability of care and type of care. 

Patients must also consider other healthcare needs and costs arising from the aging process. For instance, are you going to have to downsize your home and what kind of market are you going to find yourself in at that time? Long term planning is always a good practice when considering these things. Are you going to need long term care or nursing home care, and for how long? Where will the funds come from to manage these costs?  

Unlike years ago, when multigenerational families lived together and shared expenses as well as caregiving, we have long been in an age of “self-reliance” and autonomy. Which means the burden of caregiving is often difficult to acquire. A personal experience. 10 years ago, I lived in a community and subdivision of nineteen homes. Four of which housed multi-generational families, out of medical necessity. My husband and I even had plans drawn up for a large carriage house to be built on our property for his mother and mine in the event they needed to be near family for caregiving. It did not work out that way as my husband shortly after began his journey with Myeloma and I became his caregiver. And I did leave work for several years to be a caregiver for him. He retired early from his career, we spent more on healthcare as a result of his illness and our “planned retirement lives were forever changed as a result. We had planned, but even that planning fell far short of what was really needed for future healthcare needs. And the expenses and costs go far beyond the normal medical bills. 

What I have learned from my experience is to plan for the unexpected. Not only the cost of future healthcare expenses, but also, look at how to manage your financial lives if employment changes. Consider current and future housing needs. Are steps manageable, are doors and halls wide enough for wheelchairs, do you have access to bathroom and bedrooms that are easily accessible from outside? Do you need to consider moving to be near family?  

My suggestion is to look at scenarios and make achievable plans before you are in a crisis.  

It is true that hindsight is 20/20. If I could do it all over again with what I know now, planning for the future would have been considerably different. Now, as a widow, my needs have changed. Because I had to leave work for a period of time to care for my husband, I was no longer depositing into a retirement savings program. And because we spent so much of our retirement savings on his care, I am in makeup mode. I’m also considering my needs, imaging as well, as if I should find myself unexpectedly with an illness that may cause my early exit from the workforce. I have purchased Cancer insurance, reviewed, and expanded my life insurance portfolio, (not just for beneficiary needs) and purchased a home that I can age in. Though I am not yet 65, I am keeping abreast of Medicare changes so that I can make the right decisions when that time comes.  

It’s never too late to plan and make adjustments that can benefit you now and, in the future, no matter what your life status or health status is currently.  

Looking back at ASCO 2024

/in /by

If you’ve been following PEN on social media, you know that we had a whirlwind of activity in Chicago 5/30-6/3. The American Society for Clinical Oncology (ASCO) annual conference, with more than 45,000 attendees, is more than anything else, a venue for significant results of clinical trials to be reported and – in many cases – celebrated.  

While the therapies being studied may be many years from approval for public use, we can still take hope from the positive results and innovative ideas presented. Here are a few of the exciting news items from ASCO24: 

  • Gene mutations took center stage, as advancements in therapies based on often difficult-to-treat mutations showed great promise. The KRAS gene mutation, in particular, often presents challenges in a variety of cancer types; results presented at ASCO24 show the potential of a continually expanding assortment of KRAS inhibitors. 
  • Cancer vaccines shared the spotlight, with multiple pharmaceutical companies collaborating to move innovation forward quickly. mRNA technology (in the news since 2020 because of the COVID vaccine) has been a subject of oncology research since the 1970s and stands poised to make possible a melanoma vaccine.  
  • Antibody drug conjugates (ADCs) continue to show promise, allowing targeted therapies with fewer side effects and better outcomes. With tremendous success in the already-approved ADCs for breast and lung cancers, studies proceed to learn the impact on other cancer types. 
  • We learned of promising clinical trials that improve on the standard of care in many specific cancer types. An example is a trial that showed using an immunotherapy drug, rather than a chemotherapy, is more effective in certain colorectal cancers than the standard of care. 
  • There is a growing research focus on prevention and understanding the increased cancer risk that factors such as obesity create. 
  • Trials on better testing and early detection yielded some great results, with a DNA blood test that can predict breast cancer recurrence garnering much interest. 
  • Over and over again, we heard the importance of patient involvement and how the patient voice is being incorporated earlier in clinical research. 

For a better understanding of the clinical trials process, read What’s Really the News You Can Use.

A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis

/in , , , , , /by

A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis from Patient Empowerment Network on Vimeo.

Meet Paloma, a 58-year-old acute myeloid leukemia (AML) survivor. After experiencing breathlessness, sore gums, and other symptoms that were initially misdiagnosed, she trusted her instincts and sought further medical support, leading to her AML diagnosis. Discover Paloma’s journey and the vital importance of being proactive and staying [ACT]IVATED in your cancer care.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

 How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

 Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 

Transcript:

Being ACTIVATED in your cancer care is critical and also a continuous journey.  My name is Paloma, and I’m eager to share my journey as an acute myeloid leukemia patient in the hopes that it will help other patients and families. AML doesn’t discriminate; it can affect anyone, regardless of lifestyle or healthy eating habits.

I was 58 when I was diagnosed with AML, and my diagnosis was pretty shocking to me. I learned that you really need to trust your instincts when it comes to your health. I felt like something was off with my body, but my initial symptoms were only some breathlessness upon exertion and sore gums. But then additional symptoms started including a dry cough, some flu-like symptoms, and lumps under my armpits. I saw my primary care provider, and she prescribed antibiotics and sent me for a chest x-ray that came back without issues. 

When my breathlessness worsened along with profound fatigue, my doctor then sent me to get an ECG and additional blood tests to help determine what might be wrong. While I was waiting for my test results, my co-workers noticed that I looked thinner with my skin also being paler than usual. This was just the beginning of my AML journey. My blood tests came back with abnormal hemoglobin and blast levels, and my doctor arranged for me to be admitted to a well-regarded cancer center. I was fortunate that it was only 20 miles away but realize that not all cancer patients are this fortunate.

After seeing my AML specialist at the cancer center, he wanted to start my chemotherapy right away to fight the cancer. I was fortunate that I didn’t have issues with my intravenous line for receiving my chemotherapy. But I learned that this can be a common issue for AML patients after I joined an online AML support group. I had my first round of chemotherapy, and my daughter was able to visit me during this time. However, my care team kept monitoring my neutrophils and decided that I needed to start a second round of chemotherapy. It was now during the COVID-19 pandemic, and hospital visitors weren’t allowed.

I counted myself as fortunate that I could still continue with receiving chemotherapy. What would have happened if I’d gotten seriously ill during the early pandemic? I shudder to think that things likely would not have been easy. The hospital staff helped to keep my spirits up and also with setting up a tablet for me to do video calls with my family and friends while I was in the hospital.

Though that round of chemotherapy put me into remission for a period of time, I later came up as MRD-positive and received a targeted chemotherapy as a third round of therapy followed by a stem cell transplant. I had some graft-versus-host disease issues but got through them. I feel fortunate that there are some different treatment options for AML and would like to participate in a clinical trial to help advance treatments if I need another option on my journey. I’ve kept in touch with other patients in my AML support group during my journey from diagnosis, treatments, and recovery. I know that I couldn’t have gotten through my physical and mental challenges without them.

Though AML sounded scary at first, the future of treatment looks bright to me with emerging research and treatment options. I hope that sharing my story will make a difference for other AML patients and especially those who may come up against barriers. 

No matter who you are, being proactive is a critical step in your AML journey. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.

Share Your Feedback About [ACT]IVATED AML

[ACT]IVATED: Empowering Endometrial Cancer Awareness & Action

/in , , , , , , , , , , /by

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the endometrial cancer community. Endometrial cancer treatment options are ever-evolving with new treatments, and it’s important for patients and families to educate themselves about clinical trials, risk factors, barriers to and disparities in care. With this goal in mind, PEN continues to build on to its  [ACT]IVATED Endometrial Cancer program, which aims to inform, empower, and engage patients to stay updated about the latest in endometrial cancer care.

Endometrial cancer awareness needs more visibility for multiple reasons. The incidence rate and mortality rate for endometrial cancer is increasing rather than decreasing, and the rates are rising more rapidly in non-white patient groups and ethnicities. 

PEN is proud to add information about endometrial cancer to educate more patients and their families about this rising health concern. Cancer survivor Lisa Hatfield interviewed expert Dr. Charlotte Gamble from MedStar Health and Dr. Emily Hinchcliff from Northwestern Medicine as part of [ACT]IVATED Endometrial Cancer.    

Endometrial cancer patient Sharon also shared her personal journey with cancer and highlighted some things she has learned. “After my cancer experience, I want to educate other women about what I’ve learned about endometrial cancer. Black women have nearly twice the death rate from endometrial cancer compared to white women. Hispanic, Black, and Asian women are not represented in clinical trials at equal rates to white women. And Black women are also diagnosed more frequently with rare but aggressive endometrial cancer forms.”

Endometrial Cancer Risk Factors

 Endometrial cancer may result from one or more risk factors, so it’s vital for patients to educate themselves about risk factors for early detection and treatment. Dr. Emily Hinchcliff from Northwestern Medicine discussed known risk factors for endometrial cancer. “I… think the important ones to highlight are certainly obesity. This I think is a large driver of why there is increasing incidence of endometrial cancer. This relates to kind of the hormonal regulation. Obesity results in increasing levels of estrogen that disproportionately affect the endometrium. And then similar to that, certain hormonal syndromes where women have irregular or infrequent periods like polycystic ovarian syndrome can also put them at higher risk. More globally, I think age, family history are also risk factors. And then as I mentioned, unfortunately, women who are non-white have a higher risk of endometrial cancer mortality, especially as relates to some of the higher risk endometrial cancer subtypes.”

Some patients may have questions about the endometrial cancer risk of using hair straightening beauty products. Dr. Charlotte Gamble from MedStar Health discussed what is known and what still needs more research about this potential risk factor. “…within the past few years, there have been a few major studies that have looked at patients, looking back at patients who have then developed endometrial cancer and seeing what kind of risk factors they might have had compared to patients who didn’t develop endometrial cancers. And looking at the types of patients within these studies, there are some subtle differences that need to be addressed. 

Dr. Gamble explained about the patient group in the research study. “One of the major studies was done in a cohort group of patients who had actually close family members who had breast cancer. And so this is actually a very specific type of patient population where they were already at somewhat of an increased risk of developing a type of a cancer, because they had a relative that had breast cancer. And in this cohort of patients, they found that the frequent use of hair straightener products was associated with a higher likelihood of developing uterine cancer.” The patient group was not only comprised mainly of patients with a relative with cancer but also mostly white patients rather than Black patients who most commonly use hair straightener products. With these major study issues that need additional research studies to resolve, there may be an endometrial cancer risk with the products, but no concrete conclusions can be drawn yet.

Endometrial Cancer Disparities and Challenges

 At the National Institutes of Health (NIH), endometrial cancer is one of the lowest funded studies. Dr. Gamble discussed some of the encouraging news about endometrial cancer treatments. “…having major trials come out over the past couple of years that really look at survival opportunities with the leveraged use of immunotherapies is something that is both exciting and invigorating to the field and hopefully can potentiate further funding from the NCI to be able to study this disease type.”

Endometrial cancer is a cancer that shows some disparities in health outcomes. Dr. Hinchcliff discussed racial disparities and how research can help address disparities. “We know, as a field, as a kind of medical subspecialty, that there is a racial disparity in endometrial cancer mortality. While there is a lot of research going on to address the kind of potential biologic component there, is there something different about the cancers that are developed in different racial groups? I think there’s also really important research going on about the kind of systemic and cultural barriers and differences that women of different races experience that also can dramatically impact their cancer care.”

Clinical trials are the primary way to move research and treatment advancements forward for endometrial cancer patients. Dr. Gamble discussed primary reasons for clinical trial challenges. “A lot of times when we see that these trials that are published might not represent a racially diverse group of patients. Oftentimes it’s because of two reasons. One, patients aren’t even offered clinical trials, even if they are eligible. Or two, patients might be getting care at a health facility that doesn’t have access or the infrastructure to enroll them on these clinical trials that could be available, perhaps at a regionally nearby cancer center.”

Where patients live also has an impact on their health outcomes. Dr. Gamble shared information about patients residing in rural areas. “And it looks like patients who are living rurally don’t live as long as patients who live in the cities. And so just finding differences and seeing kind of how, again, this critical race practice and how the systems and structures in the United States have contributed or might contribute to these differences that we’re seeing, has classically and historically been easy low hanging fruit.”

Endometrial Cancer Care Solutions and Successes

 With endometrial cancer disparities gaining increased awareness, researchers and healthcare systems have undertaken some efforts to reduce disparities in health outcomes. Diagnostic testing tools and clinical trial support are two ways to help improve endometrial cancer care in underrepresented communities. Dr. Hinchcliff discussed undertakings by Northwestern University. “So one of the ones that I have been working on closely is there is an ever-increasing number of diagnostic testing tools that we have within our kind of armamentarium. And so one particular test that patients may have read about or heard about is something called circulating tumor DNA.” Dr. Hinchclliff continued about efforts to improve clinical trial access, “The other thing that one of my colleagues here is working on is trying to really create access for women who have limited access to healthcare. So we have developed a clinical trial platform to allow the women, specifically of Chicago, to better understand their options for clinical trials across the institutions in Chicago.”

[ACT]IVATED Endometrial Cancer Program Resources

The [ACT]IVATED Endometrial Cancer program series takes a three-part approach to inform, empower, and engage both the overall endometrial cancer community and endometrial cancer patient groups who experience health disparities. The series includes the following resources:

Though there are endometrial cancer disparities, patients and care partners can be proactive in educating themselves to help work toward optimal care. We hope you can take advantage of these valuable resources to aid in your endometrial cancer care for yourself or for your loved one.

AI Allies: How Artificial Intelligence Can Support Patients To Cope with Cancer

/in /by

A cancer diagnosis can be both physically and emotionally challenging. As cancer patients learn how to cope with the disease[1] and manage side effects[2], artificial intelligence (AI) tools like ChatGPT are emerging as valuable allies. This article explores ten ways ChatGPT can help you manage your cancer journey more effectively.

What is ChatGPT

ChatGPT is an AI language model developed by OpenAI[3], designed to simulate human-like conversation. Think of it as a smart chatbot that can craft responses that sound like they came from a person all based on what you ask or tell it.

ChatGPT 4 is the latest version, offering advanced features and improvements over previous versions. [4] However, you have to pay to get the full benefits of ChatGPT 4. ChatGPT 3.5, though older, is still available for free and is a reliable option for those who don’t need the full capabilities of ChatGPT 4.

Are there Alternatives to ChatGPT?

Yes, several other chatbots and AI language models can understand and generate human-like text. Examples include Microsoft Copilot and Perplexity.ai.

10 Ways To Use ChatGPT to Cope with Cancer

1. Explaining Medical Terms

Medical jargon can be confusing. ChatGPT can break down complex terms into understandable language. For instance, you could ask, “What does ‘carcinoma’ mean in simple terms?” This can help you understand essential terms without feeling overwhelmed by medical language.

2. Detailing Treatment Options

ChatGPT can provide an overview of various treatments. For example, you might ask, “Can you explain the different types of chemotherapy?” Understanding your options can empower you to make informed decisions about your care.

3. Treatment Side Effect Management

Knowing what to expect from treatment can ease anxiety. ChatGPT can inform you about common side effects and how to manage them. For instance, you can ask, “How can I manage nausea during chemotherapy?” ChatGPT can provide detailed, user-friendly responses, helping you prepare for and cope with treatment side effects.

4. Medication Questions

Managing cancer medications can be complex, especially with multiple drugs involved. ChatGPT can help you understand your medication schedules, potential interactions, and what to do if you miss a dose. Sample questions might include, “Are there any foods or drinks I should avoid while taking this drug?” or “What should I do if I miss a dose of my cancer medication?”

5. Managing Stress and Anxiety

A cancer diagnosis can take a heavy emotional toll. It’s common to feel anxious, fearful, and uncertain, and having a supportive resource can greatly reduce these feelings. ChatGPT can serve as a virtual companion, available 24/7. While it cannot replace human interaction, it can offer a comforting presence during lonely or anxious moments. For instance, you might express, “I’m feeling overwhelmed,” and in return receive a supportive response such as, “I’m here for you. Let’s discuss what’s troubling you.”

6. Finding Resources and Support Groups

ChatGPT can suggest resources, including support groups and educational materials, to help patients connect with others and stay informed. It can be helpful to ask, “Can you recommend any online support groups for cancer patients?”

7. Exercise Recommendations

Engaging in exercise while undergoing treatment can enhance both your emotional and physical health by boosting your mood and energy levels. If you ask ChatGPT, “What are some safe exercises for someone undergoing cancer treatment?” it will  give you some suitable options.

8. Nutritional Advice

Proper nutrition can support your body’s healing process and improve your overall health. Ask ChatGPT, “Can you recommend a diet that supports cancer treatment?”

9. Preparing for Doctor Visits

ChatGPT can help you prepare questions for doctor visits so you can get the most out of your appointments. For instance, you might ask, “What questions should I ask my oncologist about my treatment plan?”

10. Symptom Tracking and Management

ChatGPT can provide tips on how to monitor and manage your symptoms more effectively. For example, you could ask, “How can I track my symptoms and know when to call my doctor?” This can help you stay proactive about your health.

How to Ask Clear Questions to ChatGPT

If you want the best responses from ChatGPT, it’s important to ask questions that are clear and specific. Below are some tips to help you do this.

  • Be specific: Clearly state what you want to know. Instead of asking, “Tell me about cancer,” ask, “What are some common side effects of breast cancer treatment?”
  • Provide context: Give background information if relevant. For example, “I am undergoing radiation therapy for lung cancer. What side effects should I expect?”
  • Ask follow-up questions: If the initial response isn’t comprehensive, ask additional questions to get more detailed information.

Using AI with Discernment: A Word of Caution

While ChatGPT can provide valuable support, it’s important to use it with discernment. AI is not a doctor; it’s a sophisticated algorithm designed to process and generate human-like text. As much as ChatGPT aims for accuracy, it may occasionally produce incorrect or outdated information. Always cross-check with reputable medical sources before making decisions based on AI advice. As AI continues to evolve, its role in healthcare will likely expand[5], but human oversight remains indispensable.

[1] Optimizing ChatGPT: How Patients With Cancer Can Use AI as a Thought Partner | Cancer Nursing Today

[2] Artificial intelligence chatbots will revolutionize how cancer patients access information: ChatGPT represents a paradigm-shift | JNCI Cancer Spectrum | Oxford Academic (oup.com)

[3] Introducing ChatGPT | OpenAI

[4] GPT-4 vs. ChatGPT-3.5: What’s the Difference? | PCMag

[5] Walker H, Ghani S, Kuemmerli C, Nebiker C, Müller B, Raptis D, Staubli S Reliability of Medical Information Provided by ChatGPT: Assessment Against Clinical Guidelines and Patient Information Quality Instrument J Med Internet Res 2023;25:e47479

URL: https://www.jmir.org/2023/1/e47479

DOI: 10.2196/47479