PEN Blog Archives

Multiple Myeloma and The Researcher’s Restless Research for Resources

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The shooting pain left me frozen in place, when I stepped back on my left heel. It shot from my left hip, inward toward my spine. I knew that to mitigate my embarrassment from yelping in front of a group of friends, I’d have to gingerly move my left foot forward and attempt to stay upright while the pain fought to bring me to my knees. This pain had been progressively worsening over nearly two years. A plasmacytoma (tumor) that had “eaten away” one of my vertebrae, was the culprit. This spine tumor wasn’t my only problem…it was dangerously close to my spinal cord and had multiple friends (lytic lesions) scattered throughout my skeleton, including my spine, ribs, skull, and other random places. Multiple myeloma. An incurable blood cancer. A cancer of the plasma cells in the bone marrow. I knew nothing about it.

As a researcher, and with the help of high-dose steroids that fueled my insomnia and decimated myeloma cells, I’ve spent these last 7 years since diagnosis pouring over websites, attending seminars, consulting with myeloma specialists, conducting interviews with myeloma physicians and scientists, participating in renowned conferences, such as American Society of Hematology (ASH) and others, meeting with patients, analyzing clinical trials, serving on Scientific and Medical Affairs committees, advocating in the biotech and pharma industry, and volunteering as a fierce patient advocate, to better understand my disease.

In an effort to help patients and their loved ones understand their disease and become empowered advocates, I have compiled a brief list of my most used resources (not a comprehensive list and in no particular order…I’ll keep my favorites to myself). These resources are reliable and updated regularly. I hope it helps you. Be well. And be empowered.

1. Patient Empowerment Network (powerfulpatients.org)

I volunteer with PEN as an Empowerment Lead and believe in their message of empowering patients to become their own best advocates. PEN is a pan-cancer organization that provides resources to patients for multiple types of cancer, including multiple myeloma.

Resources: Videos, Patient Panels with Q&A segments, Activity Guides

2. International Myeloma Foundation – IMF (myeloma.org) Resources

Infoline: 1-800-452-CURE(2873). The Infoline is staffed with personnel who frequently answer questions about myeloma, how to find a specialist, events for myeloma patients, etc. If they are unable to answer a question, they will direct you to an appropriate resource.

Myelo: The IMF’s AI Assistant, ready to answer your questions based on data collected from the IMF website, which may include information on treatments, clinical trials, support resources, and many other tidbits.

Blogs: Excellent, up-to-date blogs on the latest in myeloma research, clinical trials, current events related to cancer, and advocacy.

Support Groups: The IMF sponsors support groups throughout the country. Review the list to see if there is one near you. Talking with other myeloma patients can be educational, comforting, reassuring, and empowering. If there is not a support group near you, contact the Infoline, or send an email to any group, as most of them offer virtual attendance from anywhere in the country.

EVENTS: This tab directs you to upcoming events. Go to “myeloma.org” and click on “Events” tab to register. Workshops and seminars bring together patients and myeloma specialists for education and connection.

Summary of 2025 events for IMF (myeloma.org)

  • Saturday, June 21, 2025: DENVER In-Person Regional Community Workshop (one day)
  • Saturday, August 9, 2025: SEATTLE In-Person Regional Community Workshop (one day)
  • Friday-Saturday, August 15-16: LOS ANGELES Patient and Family Seminar (two days)
  • Saturday, September 27: Waltham, MA In-Person Regional Community Workshop (one day)
  • Friday-Saturday, October 3-4: CHICAGO Patient and Family Seminar (two days)
  • Saturday, November 15: RALEIGH, NC: In-Person Regional Community Workshop (one day)

Watch for upcoming Facebook Live events with myeloma specialists and additional workshops and seminars.

3. Healthtree (healthtree.org) Resources

Myeloma Coach program: This program allows you to request a “coach” to provide information, support, resources, and encouragement while living with myeloma. You can choose coaches who have experiences similar to your own and/or expertise in particular areas, such as Stem Cell Transplant (SCT), financial resources, and specific treatments. There is no limit to number of coaches requested.

Leif (AI Assistant): Leif can answer questions, using data collected from Healthtree website, including information about treatments, side effects, how to connect to support services, etc.

Healthtree University: An extensive curriculum of resources for patients, from myeloma basics to understanding clinical trials.

EVENTS:

Roundtables: Roundtables bring together patients and specialists to provide information and connection in the myeloma community.

Podcasts: Podcasts are often moderated by Jenny, the founder of Healthtree, in conjunction with myeloma specialists.

Webinars: Webinars are on a variety of topics such as nutrition, exercise, treatments, etc.

Summary of 2025 Healthtree Events (healthtree.org)

  • Wednesday, June 18: WEBINAR – Should High-Risk Smoldering Myeloma be Treated
  • Thursday, October 23: WEBINAR – Breaking the Silence: Confronting MM Disparities in Black Health
  • Check website for additional Patient roundtables and webinars.

4. Multiple Myeloma Research Foundation – MMRF (themmrf.org) Resources

Patient Navigator Center – This program allows you to connect with professionals to answer questions about myeloma and to provide support to patients and care partners.

EVENTS: 

Patient Summits: Patient summits are in-person, virtual, or both (hybrid) and bring together patients and myeloma specialists for educational and support purposes.

Webinars: Webinars that provide myeloma specific information to patients and the myeloma community.

5. Leukemia and Lymphoma Society (lls.org) Resources

The LLS has a number of resources for myeloma patients. I’d recommend checking out their website to understand their offerings. Briefly, they sponsor a “First Connection” program, where myeloma patients can request to connect with a volunteer who also has myeloma (or experience with myeloma, as a care partner of family member/close friend); they host many Blood Conferences throughout the year, to include information and education for several blood cancer types; they offer myeloma-specific podcasts, webinars, workshops, and Q&A sessions with experts; and very importantly, the LLS is known to provide financial assistance to myeloma patients who are eligible for this financial resource.

How Uncertainty Has Hit Every Pocket of Living and Tips to Help You Through It

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And just like that, we find ourselves in a lot of social, economic, and mental turmoil.

For those who have been under stress with keeping up with healthcare costs and needs, the stakes have gotten so much higher. And though it seems as if it can’t get any worse, we are only just in the beginning stages of our new reality. Here is what is happening and how you may be able to navigate some of the fallout.

Social Security

So far there are offices closing around the country leaving the short staff even more challenged. What are the effects on you?

  • If you are already receiving Social Security: There have been some people who have been dropped from Social Security roles or are late getting their payments. If you find yourself in this situation, you need to make an appointment with the Social Security Office. Make sure you have proper identification as well as payment details. There are long waits on the phone, sometimes 5-6 hours or you may be disconnected. Patience is going to be key. You may see if your office is accepting walk-ins, if so, be there in line before the office opens.
  • If you need to put in a new application for benefits: For retiree benefits, put your application in as soon as possible and put in a future date. (before retirement date).
  • If you are putting in an application for SSDI, consider working with an attorney from the beginning to eliminate application errors and delays. Before the latest office closures, it was taking approximately 255 days for an application to even be processed. That time has now increased. Also don’t forget to include the SSI request at the same time. It may allow for you to get some income while the SSDI is being processed.

If you need to apply for Traditional Medicare: Many Medicare workers have been terminated, making accessing the department even more challenging than it was before.  Know that your part B comes out of your social security payment if you are receiving one. Otherwise, you will be billed for the premium. Apply as soon as you can for Medicare and put an effective date on the application. (Three months before your birth month).How U certainty

ACA-Affordable Care Act

This government sponsored insurance program has subsidies that are set to expire at the end of the year. There is rumor that it may happen before then. If you are covered under one of the healthcare plans, review your needs and options. If you are currently getting help through a subsidy, know that your subsidy may be going away and you will have a much larger premium to contend with. Where will you get the additional funds? Do you have savings or higher income that can compensate? Can you get on a spouse’s plan? Has your income dropped enough that you may qualify for Medicaid?

Medicaid

Some states have started implementing work requirements for Medicaid

Recipients. The problem some people may find is that they make too much to qualify for Medicaid and too little to afford the ACA. Review other options, if you’re working, will your employer insurance plan be more affordable or do you have a spousal option?

Job security: This is a very challenging time especially for many government employees. We will continue to see the unemployment numbers rise and the feeling of job security is becoming more and more obscure. In the tariff war with no end in sight, there will be challenges that employers will have and hard decisions to make. Many will have to pay more for goods and services which will hurt their income stream, passing the added cost to consumers. Many may find that cutting back their workforce as an option for staying in business. Consumers who thought about retiring early may want to reconsider. Retiring in an inflationary economy that may be leading to a recession or even a stagnation where economic growth slows or stops, unemployment increases, and inflation falls. Tapping into your retirement accounts when they are low is never a good idea. Not only will you be taking money out when your account is low, you will not be participating in contributions. It will be impossible to make-up financial losses. Consider staying put until we are out of the weeds on these issues. If you can afford to put more money in your retirement plans, then do so. You will be buying in at a discount. And if you are not yet 70 years old or taking social security, if it will not be touched by the new administration, you should continue to see yearly increases in your social security benefit.

Don’t forget to take advantage of copay, coinsurance, deductible and premium reimbursement grants from non-profit organizations. There are also grants available for travel, utilities and rent.

Reach out to your local 211 for additional assistance in your area.

These are challenging times for everyone. Stress will undoubtedly touch us all. Don’t forget to be kind to yourselves and reach out for therapy. There are grants to assist you with this as well.

I try to look at it as if the cup is half full, the missing part is full of possibilities!

A Patient Advocate’s Guide to Medical Conferences

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Has it ever struck you how some patient advocates seem well-connected, confident speaking at events, and informed about the newest healthcare research? One thing many of them have in common is that they attend medical conferences. These events aren’t just for clinicians or researchers; they’re spaces where patient voices are more and more recognized, respected, and included. Showing up can lead to new knowledge and authentic connections and can lead to unexpected opportunities.

Why Go to Medical Conferences?

Medical conferences offer advocates direct access to up-to-date scientific information, innovations, and the people driving advancements in healthcare. But even more valuable is the space they create to connect with others and grow in your advocacy.

In this article, I want to show you how these events can elevate your advocacy and share some ways to maximize these meetings.

1. Conferences Help You Cultivate Professional Relationships

One of the most advantageous aspects of attending a conference is the access it gives you to a diverse network of people—researchers, clinicians, policymakers, fellow advocates, and more. You never know how something you share might inspire someone or how another person’s story might shift your thinking.

Try This: Take the lead in starting conversations. Ask thoughtful, open-ended questions like, “What projects are you working on that you’re excited about?” After the event, follow up with a quick message or email to keep the dialogue going and lay the foundation for long-term collaboration.

2. You Strengthen Your Voice—and Your Confidence

Conferences provide a dynamic environment to sharpen your communication skills, refine your advocacy message, and build confidence. Every interaction – introducing yourself to a new contact, asking a question in a session, or speaking from the stage—helps you refine your message and grow more confident in your role as an advocate. For many advocates, the experience of stepping onto a stage or leading a discussion becomes a turning point—one that affirms their voice and deepens their impact.

Try This: If you’re offered a chance to speak—even briefly—say yes. You don’t need to be perfect—you just need to be present and authentic.

3. You Leave Recharged and Reconnected to Your Purpose

Advocacy can be deeply rewarding but equally draining. The energy of a live event, paired with the shared experiences of others, can bring your purpose back into focus and remind you of why your advocacy matters.

Try This: Jot down key takeaways, moments that moved you, and ideas that energized you.   Then ask yourself: What lit me up—and how can I bring that feeling back into my day-to-day work?

4. You Stay Informed—and Ready to Lead

Healthcare is always changing, so we need to keep learning. Attending conferences provides an excellent chance to learn about the latest research, evolving policies, and emerging innovations. When you’re informed, you’re better equipped to speak with authority, engage with stakeholders, and drive change in your community.

Try This: Choose a mix of scientific, policy, and patient-centered tracks. If something isn’t clear, ask. Curiosity is a strength, and most presenters welcome thoughtful follow-up questions or requests for additional resources.

5. You Find a Community That Truly Understands

One of the greatest rewards of attending conferences isn’t just what you learn—it’s who you meet. In a space where lived experience is valued, you’ll find emotional validation, peer support, and a sense of belonging that’s hard to find elsewhere. It’s a reminder that you’re not in this alone—and that together, you’re part of a larger movement.

Try this:  Make time for informal events like coffee chats or social mixers. It’s often in these relaxed settings where the most authentic connections are made.

6. You Gain Tools That Help You Do More

Beyond networking and inspiration, conferences provide practical tools like handouts or toolkits that can enhance your work. The right tool in the right hands can make a big difference—and those hands are yours.

Try this:  Don’t hesitate to ask speakers or vendors if they have slides, toolkits, or resource links you can share with your community. Most are more than willing to help advocates carry the message forward.

Finding the Right Conferences

Not all conferences are created equal when it comes to welcoming advocates. Here are a few that are known for being inclusive and supportive.

  • Patients as Partners (by The Conference Forum): Focused on patient engagement in drug development. Offers patient scholarships.
  • Global Genes Rare Advocacy Summit: Patient-centered, highly inclusive of the rare disease community.
  • PCORI Annual Meeting: Offers travel support for patient and caregiver participants.
  • EURORDIS Winter School & Summer School: Training and events for rare disease advocates in Europe.
  • DIA (Drug Information Association): Includes patient forums and scholarship programs for advocates.

Sample Email: Reaching Out to a Conference Organizer

Subject: Inquiry About Patient Advocate Participation at [Conference Name]

Dear [Organizer’s Name or Team],

My name is [Your Name], and I’m a patient advocate working in the area of [Your Focus Area]. I’m interested in attending [Conference Name] and would like to learn more about opportunities for patient advocates—whether through attendance, speaking roles, or available scholarships and fee waivers.

Could you please provide information on any support programs available or advise on how best to get involved?

Thank you for your time and for your efforts to make conferences more inclusive.

Kind regards,
[Your Full Name]
[Your Affiliation or Personal Advocacy Page, if relevant]
[Your Email / Contact Info]

Scholarships and Travel Support for Advocates

Many conferences offer scholarships and travel support to ensure that financial barriers do not limit participation.

Here’s how to find and apply:

  • Look for sections like “Patient Engagement” or “Community Track” on the conference website.
  • Apply early—scholarship deadlines often come months before the event.
  • If you don’t see anything listed, send a polite inquiry. Sometimes, support is available even if not widely advertised.

Final Thoughts: Don’t Sit This One Out

Conferences are more than events—they’re platforms for advocacy, learning, and collective progress. Whether you’re attending in person or logging in virtually, showing up puts you in the rooms where decisions are made, perspectives are shifted, and advocacy takes root. Your voice belongs in those rooms. Your story matters.  So show up, speak up, and claim your space.  Because when patient advocates are in the room, everyone benefits.

First Moves When Newly Diagnosed: Getting Ahead of the Financial Game

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As you will find out, cancer is an expensive disease. And as a result, cancer patients are more likely to find themselves burdened with financial toxicity. We recommend you learn about your disease and the ongoing treatment, including:

  • Prescription costs
  • Lab tests and procedures
  • Doctors involved in your care
  • Their practice locations
  • Healthcare travel requirements
  • All associated costs

Contact Your Health Insurance Company

Contact your health insurance company get to know your coverage. The earlier you can do this, the better off you’ll be in the long run. Then establish a budget to help you manage your cash moving in and out.

Identify Your Healthcare Contact Team

Find out who will be your contact team at your healthcare provider’s office. Introduce yourself to those people and get their contact information. It’s better to be prepared ahead of time than to go hunting in a crisis.

Stay Organized

Use Binders to Keep Records

Get a few binders to keep notes in as well as medical bills and EOBs. Getting organized ahead of time will pay off in huge dividends later.

Gather Employer Benefit Information

If you’re still working, get a copy of your employer benefit booklet. This will provide you with the information you will need in the event you must take time off for treatment as well as other benefits that your employer offers.

Review Insurance and Financial Planning

  • Make a binder to keep track of your medical bills and evidence of benefits (EOBs) so that everything is organized.
  • Review your life insurance and understand its benefits.
  • Work with a financial advisor to help you with your budget and ongoing financial needs and goals.
  • Find an advocate who can accompany you on appointments and who can take notes on your behalf.

Questions to Ask Your Healthcare Team

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It’s not always easy to know what questions to ask about your care or the care your loved one is receiving. On the following pages, you’ll find lists of questions organized by topic. These questions may be helpful at different times during your treatment. We recommend printing the list and keeping extra copies for your appointments.

To stay organized, use a binder to hold your questions and add some blank notebook paper for taking notes. Try to prepare everything ahead of your appointment. If you have a lot to talk about, think about calling your doctor in advance to ask for a little extra time or see if some of your questions can be answered during a telehealth visit.

Questions to Ask About Insurance Coverage and Medical Bills

  • Who handles concerns and questions about health insurance in this office or medical center? Reach out to your insurance carrier as well.
  • Will this person help me with my health insurance provider?
  • Will this person help me figure out my medical bills and the codes on the bills to make sure they are correct? Before paying bills, compare your bill with your Evidence of Benefits (EOB) from your insurance company. DO NOT pay the bill until you are sure the bill is correct.
  • If an insurance claim is denied, who can help me file a claim? You can find a lot of information on claim appeals on your EOB. Also reach out to a third party, triagecancer.org
  • Is there anyone who can help me organize my expenses, keep track of incoming bills, and plan my budget? Consider a patient advocate. Make sure they are certified. The cost is not covered by insurance. They are independent contractors.

Questions to Ask About Appointment Costs

Appointment costs should cover everything like seeing specialists, getting a second opinion, lab tests, X-rays, and other services to make sure you get the right care.

First, make sure you can get as much coverage in-network as possible.

  • How much is my co-pay for each doctor’s visit? First call your insurance company with the name of the doctor, treatment facility, and procedure and get a copy of the approval from your insurance company. Keep notes of the call, who you spoke with, the date and time of the call, and the outcome.
  • When is this payment due? This would be listed on the bill. If the bill is being challenged, contact your provider’s billing department and let them know ahead of time.
  • If I need multiple doctor visits, is there a policy where I can pay the co-pay only once or not at all (called a waiver)?
  • Do you offer payment plans? Call the billing department or check with the financial counselor at the treatment facility. Ask about hospital charity care.
  • Will I be billed separately for laboratory tests? Are they covered under my insurance? It would be a good idea to make sure that the lab that’s being used is in-network with your insurance plan. If not, see if you can go to an in-network lab.
  • Does my insurance plan cover other doctor visits, such as second opinions, and other specialists? Check with your insurance company to see if the referral or second opinion is in-network. And if not, would it be covered?

Questions to Ask About Costs Related to General Treatment

  • Who can help me estimate the total cost of the recommended plan including office, lab, and treatment facility visits?
  • If I cannot afford this treatment plan based on being underinsured or uninsured or treatment will be out of network, can we consider other insurance coverage options or treatment options that do not cost as much?
  • Are there pre-approvals required before getting any of the recommended treatments?
  • Do you have any financial conflicts of interest in proposing this treatment plan for me?
  • What expenses does my health insurance cover if I need to be admitted to the hospital? And will that hospital and treatment providers be in-network with my insurance plan? (Again, review your insurance or talk to a case worker at the treatment facility. Keep records of the conversation).
  • What expenses does my health insurance cover if I receive treatment as an outpatient? Call your insurer and be aware that emergency room doctors probably are not in-network and will be billed separately. The more preparation you do ahead of the treatment, the better off you’re going to be.
  • Are there ways to change my treatment schedule, if necessary, to work around my job or child care? If this is going to be an issue, review ADA and/or FMLA rules.
  • Will there be a co-pay for each treatment? Again, ask and get this in writing from your insurance plan.
  • Where can I get low-cost or free counseling or support to help me cope with my diagnosis?

Questions to Ask About Costs Related to Medication

  • What is my prescription co-pay for this drug? Check with your insurance company or financial counselor at the treatment facility.
  • Is this prescription a one-time cost, or will it be an ongoing expense?
  • Is there a generic version of this medication that I can use?
  • Can we regularly review my prescriptions to see if there are less expensive options?
  • For supportive medication that manages side effects, is there an over-the-counter medicine that has the same effect as the prescribed drug? Will it be less expensive?
  • Are there programs that can help cover the cost of my drug(s) for cancer treatment or side effects?

Questions to Ask About Costs Related to Clinical Trials

  • What expenses will I have if I join a clinical trial? Contact the clinical trial manager of the specific clinical trial to see what you will be responsible for.
  • What costs are already covered?
  • How do the costs of the clinical trial compare with the costs of the standard treatment? Does one cost more than the other?
  • Can I be reimbursed for any of the costs of the clinical trial?

Questions to Ask About the Costs Related to Family and Living Expenses

  • If I have problems covering basic expenses, such as food or heat, due to the cost of my cancer treatment, are there organizations that can help me?
  • Where can I get low-cost or free child or elder care during treatment?
  • Where can I get free or low-cost personal items, such as a wig, if needed?
  • Is there an organization that can provide low-cost or free counseling or support to me and my family?

Questions to Ask About Costs Related to Employment, Legal, & Financial Issues

  • Who can I talk to if I have lost income because of my treatment? If you know ahead of time, speak to your HR department about protecting your position (ADA, FMLA).
  • If I have on-the-job difficulties related to my cancer, who can help me understand my legal rights?
  • If my caregiver has difficulties at their job because of my cancer, who can help us understand our legal rights?
  • Where can I find out if my medical and related expenses can be deducted from federal income taxes? (Refer to your tax professional).
  • Where can I get low-cost or free help with estate planning and legal issues, such as writing my will or granting a power of attorney?

Questions to Ask About Costs Related to Caregiving, At-Home Care, & Long-Term Care

  • Are there any ways to change my treatment schedule, if necessary, to work around my care partner’s job and schedule? (ADA and FMLA).
  • Can we talk about the costs of care if I do not have a family member or friend to go with me to appointments or to care for me at home?
  • Are there local organizations that can give low-cost or free home care or other services?
  • Should I plan financially for long-term medical care, such as a nursing home or hospice care?

Resources:

Asking for Financial Assistance Opportunities

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If you find you are uninsured or underinsured and cannot meet your financial obligation for paying medical bills or paying for prescription drugs, you may have options.

Opportunities for Assistance

  • Find out what your prescriptions are and if any biosimilars may be less expensive than brand-name drugs.
  • Know your insurance.
  • Where are you getting treatment? Are the facility and the doctor in-network for your insurance?
    • What kind of assistance can the hospital give you to pay for your treatment, such as hospital charity care, or an arranged payment program?
    • Make sure your providers are in-network, and if not, see if you can get an exception from your insurance company in writing before getting the treatment or prescription.
  • Check with the pharmaceutical company to see if they have Patient Assistance Programs for that particular drug.
  • Depending on the cancer you have, check for co-pay, co-insurance, deductible, and premium financial assistance through non-profit organizations.
  • Other financial assistance can include help for travel costs or lodging associated with medical treatment.
  • Understanding and finding financial resources for clinical trials: Refer to your insurance for coverage of clinical trials.
  • Medical supplies and vehicle modification
  • Local and State Financial Assistance: There are financial resources that may be available to you based on your financial circumstances. Please refer to these links to find the resources and the criteria for applying:

Tips When Requesting Financial Assistance

Keep a list of pharmaceutical companies and/or nonprofit organizations where you have requested financial assistance. A binder can help you keep this organized and in one place.

Keep a record of:

  • Name or organization
  • Phone number
  • Address
  • Date your assistance starts and ends
  • Amount of grant or assistance
  • What medication or insurance co-pay or deductible it covers
  • Requirements to keep assistance/grants in force

Keep a good record of who you spoke with as well as the time and date of the call.

Keep notes about the purpose of the call. If they make promises of assistance, ask that a copy of that promise be sent to you immediately either through email or a hard copy.

See More from the Financial Resource Guide

Resources:

conquercancer.org

medicare.gov

triagecancer.org

PRESS RELEASE: Murali Joins Patient Empowerment Network’s Board of Directors

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Contact Information:   

Nicole Normandin Rueda, LMSW, Communications Director,  Nicole@powerfulpatients.org  

Tuesday, March 11, 2025 

 
MURALI JOINS PATIENT EMPOWERMENT NETWORK’S BOARD OF DIRECTORS
 

Bothell, WA – The Patient Empowerment Network (PEN) announces that Dr. Bhavna Murali has joined its Board of Directors. 

“We are thrilled to have someone of Bhavna’s caliber and passion for cancer advocacy join PEN’s governing board,” said Darla Brown, Board Chair. “Her professional oncology expertise adds tremendous value to our esteemed group of directors, helping to expand PEN’s impact across patients, care partners, and health care professionals.” 

Dr. Murali is a cancer biologist by training and currently a Senior Consultant in the Oncology and Specialty Therapeutics team at Oracle Life Sciences. Prior to joining Oracle Life Sciences, she was a postdoctoral researcher in the field of translational cancer biology with a focus on novel therapies targeting the tumor microenvironment to treat breast cancer metastases and chemotherapy-induced bone loss. She holds a Ph.D. in Molecular Cell Biology from Washington University in Saint Louis and a B.A. in Genetics from Ohio Wesleyan University. Her passion stems from personal experiences supporting friends and family through cancer diagnoses, where she witnessed firsthand the challenges and anxiety patients face in understanding their treatment options. Recognizing the value of her oncology knowledge, she is dedicated to bridging this gap and supporting a broader patient community, which led her to join PEN. 

Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization dedicated to empowering cancer patients and care partners through health equity and literacy, education and advocacy. PEN provides free online resources and programs to enhance the cancer journey and enable shared decision-making.  

For more information about Patient Empowerment Network and its initiatives, please visit www.powerfulpatients.org.   

Managing Financial Stress in an Uncertain Politically Charged Environment

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I noticed in the last few weeks that I’ve been having a really difficult time sleeping. I experienced heart palpitations as well as short periods of minor panic attacks. This is accompanied by a bit of a lack of interest in doing things outside of my home. One evening, a friend asked me to go out and enjoy a wonderful evening of dining and music at what once was my favorite yet forgotten restaurant. I used to frequent it often before COVID but had not since.  

When we sat down, I immediately requested that we refrain from any political discussions or anything that is at the forefront of mind in the news. He agreed. The band was already playing soft jazzy music with classics and even some great renditions of more modern pieces. For example, the lead song from the movie Barbie. It was wonderful!!!!  Unfortunately, we did get off task and reverted to politics a few times out of habit but quickly recovered ourselves to go on and enjoy the evening. It wasn’t until we had finished our dinner and sat back to listen to the music that I realized how much I missed just being!  

You may find yourselves in a similar state. I would suggest you find out how much information you need and how and when to access it. Hint: not necessarily daily and not before bedtime.  Here are some things you can do now to prepare for the worst that may happen if new regulations and cuts to needed departments are put into place but still hope for the best. 

  • Try to mitigate financial stress by making sure you have cash on hand for emergencies. Usually, 6 months of monthly expenses. If you don’t already have that, start to build it up. Look at your discretionary funds and save for those rainy days. 
  • Reduce spending by reducing unnecessary spending, such as eating out and subscriptions. Consider cooking at home and reducing grocery shopping to every other day rather than buying in bulk. Reduce food waste. 
  • The cost of goods is sure to rise, and you need to be prepared.  
  • If you need maintenance done on your car, don’t wait if you don’t have to. The tariffs may make getting parts a challenge.  
  • Review your investments and make sure they have some inflation-proof financial instruments.  
  • Really take a hard look at where you are spending your money. Consider what you want vs what you need.  

Other financial worries may include ongoing clinical trials or wondering if you should even look at one, considering changes that are now in effect or may continue with funding issues. Speak to your doctor to find out what trials you qualify for and verify that they are not in jeopardy. Also, find out where they are, as some research facilities may not be conducting that trial anymore. You may have to get additional prior authorizations, and your out-of-pocket costs may be higher if you need to travel further for the treatment. Some of the additional costs may include travel, lodging, food, etc. 

Other concerns you may have may be related to how Medicaid or Medicare may be continued to be funded as there is talk that Medicare may also be of concern as well as if the Affordable Care Act (ACA) will continue subsidies for your coverage. Medicaid may be somewhat defunded, and there may be work requirements for some enrollees. These are all areas that are rumored to be targeted by the new administration. Continue to be diligent about your insurance. Make sure you have all the information you need from your healthcare provider regarding possible new treatment recommendations as well as their associated costs. Be proactive in getting to really know your healthcare insurance as well as possible changes to your plan when and if you are entitled to them.  

Another big concern of many patients is the possibility that their current prescriptions may be more difficult to access or that their insurance carrier is no longer covering prescriptions.  Review your insurance often. Make sure you don’t ignore mailings; they may be time sensitive and contain important information regarding your coverage.  

If you find your insurance is no longer covering your medications, speak to your doctor about a generic or other alternative. You can also request an appeal and have your doctor send in another prior authorization with the medication being medically necessary.  

Be aware that some Medicare Advantage plans dropped some expensive cancer medications for this new year 2025. If you find yourself in this situation, the drug manufacturer may be able to assist you. 

Unfortunately, the uncertainty surrounding us can put tremendous stress on an already stressful situation. Be kind to yourself. There are programs available to cancer patients that will assist them in getting mental counseling.  

Also, lean on the members of your local support groups. If you aren’t a member, consider joining. Reach out to organizations that offer patient support and coaching. Talk to your healthcare provider and see if they have resources at their facilities for stress reduction. Many cancer resource centers offer programs.  

Again, be diligent and mindful of your needs. Reach out to someone if you have concerns or questions. Be kind to yourself and place your health first. ALWAYS!

Sources

The Two Big Decisions That Will Drive Health Policy

Trump Endorses Budget That Would Slash Medicaid Funding 

Cancer Drug Shortage: Causes, Trends, and Implications for Clinical Trials

The Future of Patient Advocacy: 5 Key Trends for 2025 and Beyond

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As a patient advocate, your firsthand knowledge of navigating health challenges positions you as a valuable voice in improving patient care. By championing change, advocating for policies and practices that prioritize patient well-being, and ensuring equitable access to quality care, you are uniquely positioned to ensure that patients get the care they need. But as the healthcare landscape evolves, so too does the role of advocacy. New technologies, research models, and policy shifts are reshaping the future. Staying informed about these trends will enable you to keep your efforts forward-thinking, inclusive, and powerful.

Here are five trends that will shape the future of patient advocacy in 2025 and beyond—and how you can lead the way.

1. AI-Powered Healthcare

Artificial intelligence (AI) is transforming healthcare with new possibilities. Beyond symptom checkers and virtual assistants, AI can tailor medical information to individual patient profiles. However, as AI systems process sensitive health data, privacy and consent concerns become even more pressing. To protect their privacy, patients must have control over their data. Algorithmic bias is also a concern. Healthcare disparities will worsen if AI is trained on biased data. For example, an AI trained mainly on data from white patients may be less accurate for patients from other racial or ethnic groups.

Advocacy Role

  • Collaborate with policymakers to strengthen data privacy and security regulations.
  • Educate other patients and the public about their rights and the risks of AI-driven systems.
  • Advocate for AI systems to be trained on diverse datasets to minimize bias and promote equitable care.

2. Patient-Led Research

Traditional research models have often sidelined the patient perspective. Today,  patient-led research is gaining momentum. Patients are no longer passive participants but active researchers, study designers, data collectors, and knowledge sharers. Online platforms and social media make it easier than ever for patients to connect and collaborate on research projects. The “Count Me In” initiative, which helps patients share their health data for cancer research, is a great example. [1]  Patients contribute to a large dataset by pooling their data, speeding up our understanding of cancer and leading to new treatments. Similarly, the Metastatic Breast Cancer Project allows patients to share their tumor samples and clinical data, leading to important discoveries. [2]

These initiatives show how patient communities can drive research and make a real difference. Yet, challenges remain—ensuring the scientific rigor of patient-led research, safeguarding privacy, and addressing potential conflicts of interest require collaboration between patients, researchers, and healthcare providers.

Advocacy Role

  • Forge partnerships with academic institutions and research bodies that actively involve patients in every research phase.
  • Help develop best practices that balance scientific rigor with ethical standards.
  • Promote patient-driven research as a valuable contribution to scientific progress.

3. Digital Health Divide

Digital health tools and telemedicine have the potential to revolutionize healthcare access—especially for individuals in rural areas, those with mobility issues, or those managing chronic conditions. From virtual consultations to wearable devices that track vital health data, technology is putting more control into patients’ hands. However, a digital divide persists. Millions lack reliable internet access or the skills to use these technologies, creating disparities in care.

Advocacy Role

  • Offer workshops that teach patients how to use digital health tools.
  • Champion the development of accessible mobile health apps and wearables.
  • Advocate for policies that expand broadband access, ensuring no patient is left behind.

4. Expanding Influence in Health Policy

Patient voices are no longer just a token presence in policymaking— they’re becoming central to shaping healthcare systems, influencing research funding, and improving treatment access. Governments and healthcare organizations increasingly recognize that patient voices bring invaluable insights to decision-making processes.

Advocacy Role

  • Monitor healthcare policy changes and hold decision-makers accountable.
  • Stay engaged by tracking legislative actions, attending public hearings, and speaking out on issues that matter to patients.
  • Amplify patient voices by participating in advisory boards, councils, and public forums.

5. A Stronger Focus on Health Equity

At the heart of patient advocacy is the idea that everyone deserves equal access to quality healthcare, regardless of their race, ethnicity, gender, sexual orientation, or socioeconomic status. Unfortunately, health inequities persist—particularly for marginalized communities, who often face higher rates of chronic illness and shorter life expectancy due to systemic barriers like discrimination, poverty, and lack of access to care.

Advocacy Role:

  • Make sure marginalized communities are heard.
  • Advocate for equitable resource allocation and culturally competent care.
  • Hold healthcare institutions accountable for addressing disparities and promoting equity.

Looking Ahead: Building a More Inclusive, Patient-Centered Future

The future of patient advocacy is both challenging and full of possibilities. As we move into 2025 and beyond, the goal is clear: to foster a healthcare system where every patient is seen, heard, and empowered to help shape the future of their care.

Stay informed. Stay involved. And, most importantly, stay inspired—because your voice has the power to transform healthcare for the better.

[1] www.joincountmein.org

[2] www.mbcproject.org

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

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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

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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

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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

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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

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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

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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