What’s Missing in Breast Cancer Care? 5 Gaps Patients Still Face
Updated: 9 hours ago
From emotional support and integrative oncology to metastatic breast cancer research, financial assistance, and clinical trial access, four nonprofit leaders discuss what it will take to build a more connected system of cancer care.
Laura Carfang, Ed.D. Editorial EDUCATION | SURVIVORSHIP
Key Takeaways
Excellent medical treatment isn’t the same as comprehensive care. The needs that fall outside a clinical appointment — emotional, practical, financial — are central to the cancer experience, not extras.
The problem isn’t missing resources — it’s fragmented access. Whether someone gets support too often depends on where they live, where they’re treated, and whether they know to ask.
Emotional and peer support shouldn’t depend on your cancer center. Personalized, stage-specific connection reaches places clinical expertise alone can’t.
Whole-person care is still priced like a luxury. When integrative and supportive services aren’t covered by insurance, access splits along financial lines — and quality of life shouldn’t.
Metastatic breast cancer needs both research and dedicated support. As METAvivor’s Dr. Kelly Shanahan puts it, “I live because of research” — and living well also requires stage-specific community and navigation.
The biggest opportunity is connecting what already exists. No single organization can do it all; stronger partnerships, referrals, and sustained investment in nonprofits are how the system improves.
A breast cancer diagnosis sets an entire medical system into motion.
There are imaging appointments, pathology reports, treatment plans, surgeries, medications, and follow-up visits. Oncologists, surgeons, nurses, and other specialists work to deliver increasingly sophisticated treatments, informed by decades of research and medical innovation.
But what happens to the needs that don’t fit neatly into a medical appointment?
Who helps someone navigate the emotional impact of a diagnosis? Who addresses the financial strain of traveling to treatment, the difficulty of managing persistent side effects, or the challenge of finding a support community that understands their particular experience?
And who helps patients find these resources when they’re already overwhelmed by everything else?
These questions reveal an important distinction: Receiving excellent medical treatment is not the same as having access to comprehensive cancer care.
To explore these gaps, SurvivingBreastCancer.org brought together four nonprofit leaders for a special episode of Breast Cancer Conversations:
Laura Carfang, Co-Founder and CEO of SurvivingBreastCancer.org
Ellen Friebert Schupper, CEO of ABCD: After Breast Cancer Diagnosis
Kelly Shanahan, MD, President of METAvivor
Sue Weldon, Founder and CEO of Unite for HER
Each organization serves the breast cancer community differently, from peer-to-peer emotional support and metastatic breast cancer research to integrative oncology, education, and community-based programs.
Yet across these different missions, a common theme emerged: The problem isn’t simply that supportive resources don’t exist. It’s that access to those resources remains fragmented, inconsistent, and often dependent on where someone lives, receives treatment, or knows to look.
Here are five gaps that deserve greater attention and what it could take to close them.
Listen now on the Podcast: Breast Cancer Conversations
1. Emotional Support Shouldn’t Depend on Where You’re Treated
A cancer diagnosis changes more than someone’s medical chart. It can alter relationships, employment, identity, family dynamics, and a person’s sense of security about the future.
Yet access to emotional and peer support varies considerably. Some cancer centers have established support programs and patient navigators. Others have limited resources. And even when support exists, patients may not know where to find it or may need something different from what’s offered locally.
For Ellen Friebert Schupper, CEO of ABCD: After Breast Cancer Diagnosis, this is precisely why personalized one-on-one peer support matters.
ABCD specializes in connecting people affected by breast cancer with trained mentors who can offer one-to-one emotional support grounded in lived experience.
This type of connection fills a need that clinical expertise, however valuable, cannot always address.
Someone newly diagnosed may want to speak with another person who remembers the uncertainty of those first appointments. Someone experiencing difficult treatment side effects may need reassurance that their concerns deserve to be heard. A person living with metastatic breast cancer may want a peer mentor where conversations about progression, ongoing treatment, and uncertainty are understood.
During the roundtable, METAvivor President Kelly Shanahan shared the organization’s origins: women living with metastatic breast cancer who found that an existing support group was not prepared to accommodate their experiences.
Rather than abandon their need for community, they created their own.
Their efforts eventually helped build an organization dedicated to metastatic breast cancer research, advocacy, and support.
The lesson extends well beyond any one diagnosis or organization.
Support must be responsive to the person seeking it and not limited by what a particular institution or organization happens to offer.
This is also why partnerships matter. SurvivingBreastCancer.org offers moderated support groups for different stages and experiences including early stage breast cancer, metastatic breast cancer, and inflammatory breast cancer to name a few, while ABCD specializes in individual mentor matching. These services complement one another rather than compete.
2. Whole-Person Cancer Care Remains Out of Reach for Too Many People
Cancer treatment is designed to treat the disease. But the effects of cancer and its treatment can extend into nearly every aspect of daily life. Fatigue, sleep disturbances, anxiety, pain, changes in physical functioning, and other symptoms may persist during treatment and beyond. These concerns deserve attention as part of comprehensive cancer care.
Evidence-informed supportive approaches including exercise, nutrition counseling, psychosocial interventions, and selected integrative therapies can help address particular symptoms and quality-of-life concerns. The evidence and recommendations differ by intervention and symptom, making individualized guidance important.
Yet access is far from universal.
Sue Weldon, Founder and CEO of Unite for HER, experienced this gap firsthand following her own breast cancer diagnosis. While navigating treatment and its side effects, she sought complementary supportive services that were not readily integrated into her medical care.
That experience ultimately shaped Unite for HER’s mission: expanding access to integrative therapies and supportive resources for people affected by breast and ovarian cancers.
As Sue explained during the conversation, the challenge isn’t simply awareness. It’s affordability.
Many supportive services are not consistently covered by insurance, leaving patients to pay out of pocket or forgo them altogether. And when families are already managing medical expenses, lost wages, transportation costs, and other financial pressures, additional wellness services may feel impossible to prioritize.
This creates an inequity: people with greater financial resources may be able to access supportive care that others cannot.
Whole-person care should not be a luxury reserved for those who can afford it.
At SurvivingBreastCancer.org, we’re working to make whole-person support more accessible through free virtual wellness programming, including movement, mindfulness, and other evidence-informed practices designed to support physical and emotional well-being during and beyond treatment.
The strongest model is one in which evidence-informed supportive care works alongside oncology treatment, helping people manage symptoms, maintain function, and improve quality of life.
For healthcare systems, this raises an important question: If we recognize that quality of life matters during cancer treatment, how do we make the services that support it more consistently accessible?
3. Metastatic Breast Cancer Requires Sustained Research and Dedicated Support
Scientific progress has transformed breast cancer treatment, with new therapies and increasingly personalized approaches expanding options for many patients.
But metastatic breast cancer (MBC) remains an incurable disease requiring ongoing treatment and careful management.
For Kelly Shanahan, this reality is both professional and deeply personal.
A physician diagnosed initially with early-stage breast cancer, Kelly later developed metastatic disease. Treatment-related neuropathy affected her ability to continue practicing medicine, and she eventually found a renewed sense of purpose through advocacy and leadership at METAvivor.
During the roundtable, she described the role research has played in her life with remarkable clarity:
“I live because of research.”
Her words underscore why continued investment in metastatic breast cancer research is essential.
Research advances are not abstract scientific milestones. They can translate into additional treatment options, longer periods of disease control, and improved quality of life. But the needs of people living with metastatic breast cancer extend beyond new therapies.
Patients may face treatment changes, progression, cumulative side effects, disruptions to employment, and the ongoing emotional weight of living with an incurable illness.
They may also need stage-specific support that acknowledges these realities rather than minimizing or avoiding them.
Kelly emphasized that metastatic breast cancer research, community, and advocacy are interconnected priorities. That perspective challenges a tendency to separate scientific progress from the daily experiences of people living with advanced disease.
Better treatments matter. So does the ability to live well while receiving them.
A more complete approach to metastatic breast cancer must support both goals. It must also recognize the importance of involving people living with MBC in decisions about research priorities, supportive care programs, and policies that directly affect their lives.
4. Cancer Navigation, Clinical Trials, and Specialized Care Are Still Too Difficult to Access
Cancer care is becoming more sophisticated. Treatment decisions may depend on tumor subtype, biomarkers, previous therapies, genetic information, and a rapidly evolving body of clinical evidence. These advances create important opportunities. They also make it increasingly difficult for patients to navigate the system without specialized guidance.
During the roundtable, Kelly described traveling hundreds of miles to see specialists with expertise in metastatic breast cancer. Her experience highlights a broader access challenge.
For someone living in a rural community, obtaining a second opinion may involve long drives, time away from work, childcare arrangements, transportation expenses, and logistical obstacles. For others, the barrier may be uncertainty about which specialist to see or whether a clinical trial is available. And for people receiving treatment at community cancer centers, access to disease-specific expertise may be limited by geography and resources.
Clinical trials present another significant opportunity and also another potential gap. Patients may not know when to ask about a clinical trial, how eligibility is determined, or where studies are available and discussions about trials may happen inconsistently across care settings.
As the panel discussed, clinical trials should not be framed solely as a last resort. Depending on the diagnosis and circumstances, they may be relevant at different points in care.
But awareness alone is not enough. People diagnosed with breast cancer and living with metastatic disease also need practical help understanding options, identifying appropriate resources, and navigating the steps required to explore participation.
This is where stronger cancer navigation could make a meaningful difference. Imagine a system in which someone diagnosed with breast cancer could easily access:
Clear, understandable information about their diagnosis and treatment options
Guidance on obtaining an appropriate specialist consultation or second opinion
Information about clinical trials and how to discuss eligibility with their care team
Referrals to emotional, financial, and supportive care services
Help identifying resources that match their diagnosis, location, and individual needs
Some of these services exist today. The challenge is making them easier to discover, access, and coordinate.
Patients should not have to become experts in navigating healthcare systems simply to receive the support they need.
Improving access will require collaboration among cancer centers, community oncologists, patient organizations, researchers, and industry partners. It will also require attention to rural communities, historically underserved populations, and people who face language, transportation, financial, or digital barriers.
5. The Financial Burden of Breast Cancer Extends Far Beyond Medical Bills
When we discuss the cost of cancer, attention often centers on treatment expenses, insurance coverage, and prescription medications. But the financial impact of a diagnosis reaches much further. A person receiving treatment may need to travel regularly to appointments, purchase groceries while unable to work, arrange childcare, or cover household expenses while income is reduced.
For people living with metastatic breast cancer, these challenges are lifelong. The roundtable highlighted direct financial assistance as an important unmet need, alongside better navigation and access to supportive services.
This is particularly significant because financial hardship can affect more than a household budget. It can influence whether someone can reliably travel to appointments, access supportive services, or manage the practical demands of treatment. Nonprofit organizations play an important role in addressing these needs, but charitable assistance alone cannot eliminate the broader financial burden of cancer.
At SurvivingBreastCancer.org, financial assistance for people living with metastatic breast cancer is one component of our commitment to whole-person support, helping address nonmedical needs such as transportation, food, and essential household expenses.
These forms of assistance may appear separate from medical treatment, but they are deeply connected to the experience of receiving care. A treatment plan does not exist independently of someone’s life.
When we talk about access to cancer care, we must also talk about whether people can afford the everyday realities of getting that care.
The Bigger Challenge: Connecting the Resources That Already Exist
Perhaps the most important takeaway from this conversation was not any single gap but rather, the recognition that no organization, hospital, or healthcare professional can address every need independently.
ABCD specializes in one-to-one emotional support.
METAvivor focuses on metastatic breast cancer research, advocacy, and community.
Unite for HER expands access to integrative therapies and supportive care.
SurvivingBreastCancer.org brings together evidence-informed education, community, wellness programming, navigation resources, and financial assistance.
These organizations have distinct missions, expertise, and models.
And that is a strength.
During the discussion, the leaders spoke openly about the importance of understanding where their organizations are uniquely positioned to contribute and where partnerships can better serve patients than duplicating existing programs. This approach requires a shift in how we think about the breast cancer support ecosystem. Rather than asking every organization to provide every service, we should be asking how to create more effective pathways between the services that already exist.
That means building relationships across institutions, improving referral systems, sharing trusted resources, and making it easier for patients to understand their options.
It also means recognizing that nonprofit programs require sustainable investment. Behind every free support group, educational webinar, peer mentor program, and patient assistance initiative are people, technology, training, infrastructure, and operational costs.
Sustaining those services is part of sustaining access. If we want high-quality, reliable patient support to remain available, we must invest not only in individual programs but also in the organizations and systems that make those programs possible.
What Should the Future of Breast Cancer Care Look Like?
The future of breast cancer care will undoubtedly be shaped by scientific breakthroughs. New therapies, improved diagnostics, biomarker-driven treatment decisions, and advances in clinical research will continue to influence how breast cancer is treated.
But medical innovation is only part of the equation. Progress must also be measured by how effectively people can access care, understand their options, manage symptoms, maintain quality of life, and find meaningful support.
That requires a broader definition of comprehensive cancer care. The question is not whether every organization can do more, it is whether, together, we can build a system that works better for the people depending on it.
Because the goal is not simply to create more breast cancer resources. It is to make the right resources easier to find, easier to access, and more meaningfully connected to the care people receive.
That is the opportunity in front of us and it is a conversation worth continuing.
At SurvivingBreastCancer.org, we believe patients and families deserve clear, evidence-based information that helps them ask informed questions and feel more confident in conversations with their medical team.
Disclaimer: This article is for educational purposes only and is not medical advice. Treatment decisions are personal and should be made in partnership with your oncology team.
