Navigating the Uneven Playing Field of Healthcare

When it comes to breast cancer, the deck is rigged. But that doesn’t mean you can’t win. Here’s how to play your cards anyway.

Ronda Brunson was self-employed for years before she received her breast cancer diagnosis. She could not afford insurance on the marketplace under the Affordable Care Act.

When she first found a lump, she paid out of pocket for her OB/GYN appointment, mammogram, scans, and biopsies. She began treatment by self-paying in cash to all of her doctors. Eventually, Brunson signed up for insurance on the marketplace and was accepted.

The company denied all of her claims.

“Imagine that,” Brunson said. “I was newly diagnosed with cancer, and instead of focusing on treatment, I was fighting my insurance company.”

Brunson found an insurance carrier who helped her switch companies. But she often wonders:

“What if I hadn’t? What if I didn’t have someone guiding me through the loopholes?” Brunson said. “So many people don’t have that lifeline, and they’re left drowning in medical bills and bureaucratic nonsense when they should be focusing on staying alive.”

Brunson went on to found Tata Tuesdays, a nonprofit offering support circles, education, and advocacy.

The quest to stay alive and well is complicated by factors other than how your body responds to the best treatment possible. These factors can affect whether you have access to the best treatment — or any treatment. Or screening. Or best practices for prevention.

These factors include insurance (as Brunson experienced), race, financial and employment status, other underlying health conditions, and more. They often intersect and overlap and shouldn’t exist in the first place, but they do. 

There are ways you can advocate for yourself as you undergo breast cancer treatment and for those who will follow in your footsteps, hopefully turning anger and frustration into power in the process.

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The deck is rigged

A breast cancer diagnosis itself can feel like a raw deal. You (understandably) might think, “Why me?” However, it can become more complicated by a system that always seems to have a stacked deck. The system is holding all the aces. You’re left with few cards.

The system should be on your side, but it may not feel that way as you cut through red tape or feel ignored by a doctor.

The list of factors that can affect breast cancer treatment is a long and tangled one. Often, having one risk factor means you’re likely to have another (for instance, racial and economic inequalities can intersect). Research and the experts I spoke with said some of the main circumstances that can affect treatment include:

• race, with people who aren’t white seeing worse outcomes or access to treatment
• income
• insurance coverage
• work status
• social isolation
• education and health literacy
• language differences
• other underlying conditions that might raise the risk of breast cancer or complicate treatment
• where you live, which can affect travel time and access to doctors, treatment centers, and hospitals
• legislative barriers, such as age minimums for Medicare

The list is long and not exhaustive. These factors can block access to and lower the quality of care during many stages of breast cancer diagnosis, treatment, and continuing care.

“These are very serious problems because any barrier that keeps women from getting regular mammograms or prevents them from receiving treatment can impact their chance of cancer prevention, early detection, or survival,” said Marissa Tadi, MSN, A-GNP-C, a nurse practitioner at City of Hope Orange County.

How to play the hand you’re dealt

Unlike cards, breast cancer is not a game. We all deserve access to a system that prioritizes our health over profits, regardless of how we look, where we live, how much money we have, or the insurance we do or don’t have. But the reality is not everyone has equal access, which can leave you feeling powerless.

However, advocates and doctors share that it’s possible to take control of some aspects of your health and treatment. Advocating for yourself now — and perhaps others later — can help you feel empowered and supported.

Prioritize regular screening

The U.S. Preventive Services Task Force (USPSTF) recommends women start mammogram screenings at age 40 and have one every other year until turning 74. However, people with risk factors like a family history of breast cancer or genetic mutations (genetic mutation (like BRCA1 or BRCA2) may receive earlier screenings.

For example, the American Society of Breast Surgeons (ASBRS) recommends starting annual MRIs at age 25 and annual mammograms at age 30 if you have a higher-than-average risk. The American College of Radiology (ACR) also publishes specific screening recommendations for different groups based on risk.

Those recommendations change if you’re in breast cancer remission.

“After breast cancer diagnosis, screening guidelines depend on the surgery that the [person] received,” said Roshani Patel, MD, FACS, the medical director for breast surgery at Hackensack Meridian Jersey Shore University Medical Center.

For instance, Patel says that mammograms aren’t useful for people who have had mastectomies because there’s no breast tissue under the skin. Patel explains that if you’ve had a mastectomy, your team will recommend:

• clinical exams twice a year for 2 years and once a year for at least 3 more years
• a diagnostic ultrasound if you or your care team notices a lump

If you had a lumpectomy, Patel says your team will refer to the American College of Radiology guidelines, which recommend an annual mammogram. However, the ultimate recommendation depends on your age and breast tissue density.

“Screening intervals will be custom-tailored,” Patel said. “For example, if [you] had breast cancer before age 50 and have dense breast tissue, a doctor may recommend mammogram plus an MRI … It is important for the radiologist and the breast surgeon who orders imaging to determine the best screening plan and communicate that plan [with you].”

Understand your risk

As you can tell, your risk for cancer in the first place can affect when you’re screened. DeiLaSheun​​​​ Richardson, MSN, RN, CCM, the senior vice president of Health Services with Community Health Choice, notes that we don’t control all of our risk factors, including:

• genetics
• family history
• race
• ethnicity
• age

However, knowing these risks can help you advocate for screenings. Additionally, Richardson says you have varying control over other risk factors (depending on finances and food access), such as consuming less red meat and more produce and lean or plant-based protein. Additionally, you can exercise, lower alcohol consumption, and not smoke.

Know what quality care looks like

A 2024 study indicates that people receive the highest quality of care if their team is multidisciplinary, which means you have multiple doctors with different specialties.

“​​A multidisciplinary team helps to improve the quality of care received by taking a holistic approach to treating [you],” Lee said. “This approach takes into consideration all aspects of [your] health, including physical, emotional and social needs, which can lead to personalized treatment plans, improved satisfaction … and better health outcomes.”

Lee notes it can be more challenging for people to access this care, such as people in rural areas with less access to quality healthcare. Some healthcare systems may not be as well coordinated or integrated. However, just knowing what it looks like can help you better advocate for yourself.

Patel says this multidisciplinary team usually consists of:

• breast radiologists
• breast surgical oncologists
• medical oncologists
• radiation oncologists
• genetic counselors
• pathologists
• nurse navigators
• support staff, like registered dietitians and for mental health

To stay on the same page, Patel says the multidisciplinary team meets during a “tumor board meeting” to review your case, imaging, and the most up-to-date treatment options to give you the best care. Nurse navigators also help you effectively coordinate and speed up care.

Advocate for yourself

You may know what quality care looks like, but how can you get it? There are no guarantees, but Lee says there are ways you can feel empowered to self-advocate:

• Stay informed about your condition and treatment options.
• Communicate your preferences with your healthcare team to try and align your treatment with your beliefs and goals.
• Ask questions and for your team to explain things in a way you understand.
• Bring a support person, like a trusted friend, family member, or advocate, to help you remember information and provide emotional support.

Get a second opinion

Another form of advocating for yourself is to get a second opinion. 

“Don’t solely rely on the doctor’s opinion if you are not 100% comfortable with it or if you are being dismissed,” said Nicoletta Sozansky, a board certified patient advocate.

However, you can ask for one whether you’re happy with your current care or not — in fact, Patel always recommends it. You may receive confirmation that your current team made the best recommendation or new information about treatments or clinical trials that may be worth exploring.

Manage other chronic conditions

A holistic approach to care also includes treating and managing other conditions.

Monique Gary, DO, a breast surgical oncologist and chief medical officer of Bexa, says other chronic conditions can become overlooked during breast cancer treatment. However, she says a holistic approach to health involves keeping tabs on these, too, such as managing blood sugar and pressure.

Continue to see specialists for these conditions. Also, don’t be scared to ask your cancer care team how one condition or medication may affect another you’re taking for a different condition.

Request a patient navigator

Navigating breast cancer treatment can feel overwhelming, especially if your circumstances leave you more vulnerable to limited or blocked care. But you don’t have to go it alone.

“Patient navigators can help address various barriers to care, including financial, geographic, and social barriers,” Lee said.

A navigator may hold titles like patient navigator, financial navigator, social worker, and nurse navigator. The person can help you with:

• coordinating appointments
• learning about your diagnosis
• understanding your treatment options

Lee says this support can help you improve your outcomes and feelings about your care. It can also guard against unnecessary delays. You can request one at the treatment center.

Build a support network

“A support network is necessary for people going through their breast cancer journey where they might experience overwhelming and complicated emotions,” Gary said.

Research suggests that social isolation might also factor into a person’s breast cancer risk and prognosis.

Gary recommends:

• reaching out to family and friends
• joining breast cancer communities online and in person
• getting involved in advocacy or volunteer groups
• developing and maintaining a strong relationship with your medical team

Engage in advocacy

Advocating for laws that will go into effect after your treatment concludes may boost your mental and emotional well-being.

“Advocating for laws and policies that will improve the lives of [people with] cancer, including education, medical research, and access to insurance and screening, can feel very empowering for some people who want to bring about positive change for themselves and others in the future,” Tadi said.

Tadi suggests tapping into the American Cancer Society Cancer Action Network for opportunities.

Susan G. Komen also has a Center for Public Policy.

“Legislative efforts, such as the Metastatic Breast Cancer Access to Care Act, aim to improve access to care by addressing benefit access issues, including ending the waiting period to receive financial benefits through Social Security Disability and sooner access to Medicare coverage,” Lee said.

Calling your legislators to encourage them to pass this law is another way to engage in advocacy.

Make use of available resources

Numerous organizations offer support, and laws and agencies have policies in place to protect you. The experts we spoke with shared multiple resources that might help you navigate care and level the playing field.

• American Cancer Society: Hope Lodge offers free lodging during treatment, and Road to Recovery provides free rides to cancer appointments. Air Care Alliance connects people to volunteer pilot organizations that can help them access distant medical care.
• Angel Flight East: The provides free flights to medical facilities for qualified people and their families.
• CancerCare: This program assists with resource navigation and coping with cancer while uninsured. It also offsets transportation, child care, and financial burdens through AvonCares.
• Living Beyond Breast Cancer: This nonprofit connects people with education and resources.
• Lazarex Cancer Foundation: It provides financial assistance resources, clinical trial navigation, and genomic testing resources
• Needy Meds: They share resources to afford prescriptions and understand other healthcare options.
• SistersNetwork: They provide mammogram support for uninsured women, financial assistance, and other support.
• The Assistance Fund: It’s a breast cancer copay assistance program that helps people with significant copays.
• The Pink Fund: 90-day grants are provided to assist with non-medical expenses like transportation, housing, and utilities.
• The Susan G. Komen Treatment Assistance Program: This program provides financial assistance, resources, and support.
• Triage Cancer: This organization provides information on legal and practical issues that may affect someone with cancer or their family.
• Touch BBCA: This group provides resources for the Black community.
• Unite4Her: It provides therapies, services, education, and resources to improve quality of life.
• U.S. Equal Employment Commission: It provides information on the accommodations employers must provide when you’re undergoing cancer treatment.

The endgame

In an ideal world, healthcare is a fundamental human right, and the way you look or the money you have in the bank has no bearing on your breast cancer treatment or survival.

But, that’s not the case in this world. Race, financial and insurance status, language differences, and geography are just a few of many factors that can affect your access to care through no fault of your own. 

You can take steps to advocate for yourself and receive better care, such as asking your doctor questions, requesting that they explain your options in simple terms that you can understand, and seeking a second opinion.

Nonprofits may offer assistance, such as financial or transportation assistance. Finally, advocating for change can leave you feeling empowered, connected, and hopeful.