PODCAST: The Role of Patient Organizations in Increasing Representation at the Clinical Trial Site Level
This podcast from Patients as Partners highlights strategies from patient advocacy on increasing representative clinical trial participation, empowering local leaders, leveraging community networks and more.
This panel discussion demonstrates how patient advocates are bridging the divide at the site level to improve patient representation in clinical trials. More specifically, this podcast focuses on:
Strategies for overcoming limited resources and lack of infrastructure, which can hinder inclusive clinical trial participation
Successful models for empowering local leaders and leveraging community-based networks to increase participation
Evaluating the impact of outreach and engagement efforts on enrollment representation and overall care equity
When you’re told you have cancer, the impact is not just on your body, it reverberates through your mind, spirit, and sense of self. I remember lying awake at night, my body exhausted from treatment, but my mind racing with fears: What if it comes back? How do I explain this to my children? Who will I be after this?
Cancer does not only test your physical strength; it can shake the foundations of your mental and emotional health. For me, healing wasn’t just about chemo, surgery, radiation or other treatments it was about learning how to take care of my whole self, inside and out.
Why Mental Health Matters
Mental health is essential to overall well-being. While 1 in 5 people will experience mental illness in their lifetime, everyone faces challenges that affect their mental health. For cancer patients and survivors, those challenges often feel magnified. Mental health needs can also be intensified by identity and life context. For example, Black women often face systemic inequities in diagnosis, treatment, and pain management, compounded by the cultural expectation to be the “strong one,” which can make it harder to ask for or receive support. Younger women may grapple with fertility concerns, career interruptions, dating and intimacy challenges, and the isolation of being diagnosed at an age when peers are not typically facing cancer , LGBTQI+ patients may face additional stressors fear of discrimination or misgendering in clinics, strained family dynamics, challenges around intimacy or fertility decisions, and the emotional labor of constantly self-advocating. Immigrant women, students, and those on work visas or awaiting citizenship may carry added worry about employment, insurance tied to a visa, language barriers, and fear of engaging with systems. If this is, you: we see you. Your experience is valid, and you deserve affirming, competent care.
Some of the most common mental health concerns include:
Fear of recurrence
Fatigue, sleep disruption, and physical pain
Changes in body image or sexual function
Anxiety related to treatment or test results
Feelings of isolation or vulnerability
Stress on relationships and communication
Deep questions about life, mortality, and meaning
Navigating identity-based stressors (e.g., discrimination, misgendering, family rejection)
Practical and legal stressors (e.g., job/insurance tied to visa status, language barriers)
Managing mental health alongside treatment can be overwhelming. Depression and anxiety can make it harder to exercise, eat well, connect with loved ones, or stay on top of medical care. But there is hope. Healing may not follow a straight path, but it is possible.
Allyship & Inclusive Care
For Black women:
Seek providers who actively listen and validate your concerns — your voice is central to your care.
If you feel your pain or symptoms are being dismissed, advocate for second opinions or additional testing; bring an ally to appointments if possible.
Connect with survivorship and advocacy groups centering Black women; shared spaces can affirm your experience and provide resources that reflect your reality.
Release the pressure of the “strong Black woman” narrative — leaning on support is strength, not weakness.
For younger women:
Be upfront about fertility, sexuality, and long-term survivorship concerns; ask for referrals to reproductive specialists or sexual health counselors early.
Talk openly with your care team about career and financial impacts — social workers can help you navigate workplace leave, insurance, or scholarships.
Join peer groups for young survivors; seeing yourself reflected in others can ease feelings of isolation.
Remind yourself that your life plans are still valid, even if they take new shape after cancer.
For patients & partners (LGBTQI+):
You deserve respectful, affirming care. Share your name and pronouns once; providers should honor them.
Include your chosen family in appointments if that feels supportive.
Ask for providers with LGBTQI+ competency; request privacy around sensitive history or surgeries.
For immigrants/visa holders:
Ask for an interpreter and translated materials; it’s your right to understand your care.
Tell your team if insurance or employment status limits access—social workers/patient navigators can help problem-solve options.
If paperwork, transportation, or time-off is a barrier, ask about letters of support, flexible scheduling, and community resources.
For allies (family, friends, clinicians, community):
Practice name/pronoun respect, avoid assumptions, and reflect language patients use for their bodies and relationships.
Validate the identity, immigration, financial and offer concrete help: rides, meals, childcare, admin tasks.
Make space for chosen family; don’t gatekeep who “counts” as support.
Taking Steps Toward Mental Wellness
Recognize your feelings. Naming your emotions is the first step toward processing them.
Am I no longer enjoying things I once loved?
Has sleep become an escape rather than rest?
Do I feel persistently anxious, hopeless, or overwhelmed?
Am I withdrawing from friends, family, or activities?
Do I find it difficult to focus, eat, or care for myself?
Build routines that lift you up. Whether it’s journaling, walking, or prayer, consistency provides grounding.
What small habits bring me peace, journaling, prayer, or meditation?
Do I feel more energized when I move my body, walking, stretching, or dancing?
Am I starting or ending my day in ways that nourish me?
Which daily rituals remind me of who I am beyond cancer?
Remove toxic influences. Protecting your peace is just as important as caring for your body. Ask yourself:
Do certain environments, people, or media leave me drained or anxious?
Am I safe and respected where I receive care? If not, who can help me switch providers or advocate for me (navigator, social worker, friend, chosen family)?
Am I setting boundaries around conversations, commitments, or relationships that feel harmful?
What would it look like to replace negativity with affirmations, supportive voices, or uplifting activities? Detoxing your environment creates space for healing and resilience.
Connect with others. Community, whether through friends, therapy, or support groups is a powerful medicine.
Who in my life makes me feel safe, seen, and supported?
Am I leaning on friends, family, faith communities, or support groups when I need them?
Have I found communities that reflect my identity and needs (e.g., LGBTQI+ survivor groups, immigrant support orgs, faith/spiritual spaces, campus networks)?
Would talking to a therapist, mentor, or survivor network help me feel less alone?
How can I practice asking for help without feeling guilty? Connection is a powerful medicine. Let others remind you that you are not alone on this journey.
You Are Not Alone
Checking in with yourself regularly helps you notice when something deeper may be happening. Remember: noticing these shifts is not weakness, it’s wisdom. The earlier you recognize patterns; the sooner you can seek support and begin healing.
Routines don’t have to be big to be powerful. Even a few minutes of intentional practice each day can create stability and remind you that healing is not only physical, but also emotional and spiritual, too. Detoxing your environment creates space for resilience. And connection is a powerful medicine. Let others remind you that you are not alone on this journey.
If you are dealing with depression, anxiety, or thoughts of suicide, know this: your feelings are valid, and your life matters. Suicide prevention begins with conversation, compassion, and connection.
If you or someone you love is in crisis, call or text 988 in the U.S. for the Suicide & Crisis Lifeline. Trained counselors are available 24/7.
By caring for your mind as intentionally as your body, you create a more empowered narrative. Small acts of self-compassion ripple outward, uplifting you and everyone connected to you. Remember: mental health is whole health.
When you’re diagnosed with cancer, the world stops. The air shifts. The future you imagined suddenly feels out of reach.
When I was told my breast cancer treatment would leave me infertile, the words hit me like a gut punch. I still remember that day, my mind spinning. I peeked into my daughter’s room, later that night watching her sleep. A deep ache washed over me knowing it would be just her and me. I had hoped to give her a house full of siblings.
“I grieved for the children I would never hold. For the pitter-patter of little feet that would never echo through my home. For the bedtime stories, the scraped knees, and the graduations I would never get to witness. Was it my fault? Should I have had children sooner? Was God trying to tell me something? I was 32. I thought I had more time. For a long time, I sat in that grief. And then slowly I began to find hope again.” ~ Maimah Karmo
A cancer diagnosis can shatter more than your health it can disrupt your dreams of building a family. Women, particularly younger women and women from marginalized backgrounds, often face additional barriers:
Insufficient or late information about options
Limited access to fertility preservation resources
Lack of insurance coverage
Medical bias
These barriers mean too many women are forced to make life-altering decisions, without having all the facts or the resources to act. Here’s what I learned from my journey:
Empower yourself with knowledge. Understand your diagnosis, your treatment plan, and the fertility preservation options available to you. The more informed you are, the more confident your choices will be.
Get a second opinion. If you’re uncertain about your doctor’s recommendations, another specialist may offer new possibilities.
Seek out resources and don’t be afraid to take some time. I can’t speak for everyone, but after my diagnosis, I thought the cancer was growing every second, so I was afraid to wait to find answers. I kept hearing the words aggressive, so took the doctor’s word for it and let my hopes go.
Build your support circle. Friends, family, and healthcare providers who truly listen and advocate for your needs can be your lifeline – and if you can find a support system of other patients, talk to them and learn what they did, when, why and who they worked with and take all the information you learn into account as you make a decision that’s right for you and your long-term health.
Speak your truth. Your healthcare team can only address your concerns if they know them, never be afraid to ask questions or express your preferences.
Navigating fertility after a cancer diagnosis is a journey of self-advocacy, and a decision that will impact you for the rest of your life. Explore every option, and use your voice, you reclaim control over your future. Whatever decision you make, know that it’s the best decision you can make with what you know now.
Fertility Preservation: What to Know
Cancer treatments can affect fertility temporarily or permanently. That’s why it’s essential to have conversations before treatment begins about:
Egg & Embryo Freezing (Cryopreservation): Mature eggs can be frozen unfertilized or fertilized with sperm and stored as embryos.
Ovarian Tissue Freezing: Still experimental, but an option for some patients, including younger girls.
Ovarian Transposition: Surgically moving ovaries out of the radiation field.
Fertility-Sparing Surgery: In select early-stage cancers, part of the reproductive system can be preserved.
Ovarian Suppression: Hormonal treatment to temporarily pause ovarian function during treatment.
Financial Costs of Fertility:
“I would love to see a shift in fertility coverage by insurance and grants for women who want to use the eggs or embryos they have stored” ~ Shoni Brown MS, ED, Angel Advocate
Fertility preservation is not only an emotional decision; it’s a financial one. For many young breast cancer patients, the high cost of egg or embryo freezing can be a major barrier. Patients often invest significant time, energy, and money in fertility preservation, with studies showing they may spend an average of 125 hours, go through about 2.7 assisted reproductive technology (ART) cycles, and pay around $25,000 over an 18-month period, all without a guaranteed outcome (Frankel et al., 2025). It’s important to know your options early. Patients should ask about fertility referrals as soon as possible after diagnosis and advocate for financial navigation support, including grants, discount programs, or employer-sponsored benefits. Fertility is a deeply personal journey and ensuring affordability is a critical part of equitable care.
Tip: Always ask about potential risks, hidden costs, and success rates, and request a full breakdown of fees.
Helpful Resources to Explore:
Livestrong Fertility: Discounted medications and services at partner clinics.
Reprotech’s Verna’s Purse: Reduced rates for egg, embryo, and sperm storage.
Worth the Wait: Grants for fertility preservation and family building.
ReUnite RX, HeartBeat, and Fertility LifeLines: Discounted fertility medications.
Your fertility story doesn’t end with cancer. Even if the path looks different than you once imagined, there are still ways forward whether that’s through preservation, surrogacy, adoption, or embracing new definitions of family. I share my story to remind you: you are not alone. You have options. And you have the right to the information, care, and resources that can help you choose the future you want. If you are navigating this journey right now, breathe. Ask the hard questions. Seek the right team. And know that hope is still yours to hold. A few of my friends have adopted one or more children.
My daughter is almost 23 years old. She is my only child and my everything. While I’d hoped to give her siblings, the relationship that we share is profoundly beautiful. I have had nearly 20 more years with her and she with me and we have made each one of those years count and look forward to many more. We have a relationship that has been made even closer because of the gift of each other and when we are sitting together quietly on the sofa reading or watching a movie, we’ll often joke about what it would be like if she had grown up with a house of boys like I did. We laugh about it. It took us both time to accept that I couldn’t give her the house full of siblings she saw that many of her friends had; but we could love the life that we had the blessing to live. Every survivor’s story is different, but I’m confident that you’ll write yours with compassion, love and hope.
To learn more about fertility preservation, resources, and patient support, visit us at www.tigerlilyfoundation.org
That once you rang the bell, you got to move on. That after the surgeries, the chemo, and the tears, life would pick up where it left off. You’d bounce back grateful, wiser, and ready for your “new normal.”
But survivorship doesn’t follow a script. And healing? Healing has a mind of its own.
Enter Ria Patel, a young ovarian cancer survivor, who reminded me of this truth.
Ria was still deep in her chemotherapy journey when it happened. Her grandfather had just come home from the grocery store, and like she always had, she stepped outside to help. She reached for the gallon of milk and couldn’t lift it. Her arms gave out. Her body, once strong and familiar, whispered: not today.
It wasn’t just the milk. It was the weight of everything she’d been carrying in silence.
Something broke open in that moment. Ria realized that healing wasn’t about “getting over” cancer; it was about learning how to live after it. She had survived, yes. But now, she had to relearn how to thrive in a body and a world that had been forever changed.
“Your experience with cancer will always be a part of you, but it will never define you. Survivorship is going to be a journey of trying over and over again. If you find yourself failing, you’re doing it right.” — Ria Patel, Ovarian Cancer Survivor
Ria spoke of the changes in her body, the shifting in her relationships, and the emotional toll of appointments that stacked up like bricks, each one heavier than the last.
But Ria is a fighter.
She signed up for a weightlifting class with her best friend, Sophie. Slowly, her strength returned. Deadlifts. Front squats. Each rep became a way to reclaim her body—inch by inch. But healing wasn’t linear. There were follow-up scans. Missed milestones. New waves of anxiety. Doctor’s visits that blurred together. Endless referrals. More tests. More waiting.
And yet, in the midst of it all, Ria chose to write. To speak. To heal out loud.
In My Life Matters magazine, she didn’t just tell her story with beautiful vulnerability; she used her voice to establish yet another bridge towards survivorship. One that helps lay the stones for every young woman sitting in a waiting room. For every survivor who thought they were “past it” until fear crept back in or some aftereffect from treatment manifested that wasn’t expected. Sharing her experience gave voice to so many others who look okay on the outside but feel shattered within.
Reading her words reminded me why platforms like My Life Matters magazine exist. Why Tigerlily exists. Why so many other organizations giving voice, support, and empowerment to patients exist.
Why we must keep telling our truths even when our voices shake.
Because survivorship isn’t the end of the story. It’s the beginning of a new one.
And somewhere right now, there’s another young woman standing in her kitchen, realizing a gallon of milk is suddenly too heavy. The gallon of milk that represents so much of the weight that others can’t see and that many of us carry for a lifetime. The gallon that is so filled with gratitude for the blessing of life, yet heavy with the other things. This is the truth about survivorship, and the gallon of milk is in some ways carried as well by those who love us.
Someone said to me the other day, I don’t know how you stayed in one job for twenty years. I smiled. This “job” is me; it has been my lifeline, it has given me community, it has allowed me to serve, and it gives me a platform to amplify the experiences and voices of millions of cancer patients, survivors, thrivers, and those who love them.
A cancer diagnosis can force patients to choose between paying for treatment and affording necessities like housing and groceries. Unfortunately, these challenges are exacerbated for underserved patients and communities of color. While many Illinois patients need financial relief, some healthcare entities are exploiting a little-known federal program, that was intended to help these patients, in pursuit of greater profit. At the same time, Illinois lawmakers are advancing legislation (SB 2385/HB 3350) that would expand the program and create further opportunities for health system middlemen to generate profits at the expense of vulnerable patients.
The 340B Drug Pricing Program was established by Congress to help vulnerable populations access medications. Created with good intentions, the program enables hospitals and clinics that serve a large number of uninsured or vulnerable patients to acquire deeply discounted treatments from drug manufacturers. In turn, 340B “entities” are expected to use the savings from these discounts to provide affordable care to these communities.
“A lack of program transparency has enabled many 340B covered entities to mark up the discounted cost of medicines instead of helping patients better access care.”
However, the program has gone severely off track, benefiting large hospital systems, for-profit, chain pharmacies, and health system middlemen that use 340B discounts to boost profits. A lack of program transparency has enabled many 340B covered entities to mark up the discounted cost of medicines instead of helping patients better access care. Research has shown medicine price markups are nearly seven times higher at 340B hospitals than at independent clinics. Nearly 70% of Illinois hospitals provide levels of charity care below the national average. Since 2015, almost 70% of audits conducted on Illinois 340B entities included adverse findings, such as illegal distribution of 340B-discounted drugs.
Discounted medication purchases under 340B reached over $66 billion in 2023. Despite the massive size of the program, there is no transparency into how savings from 340B drug discounts are used. This has enabled for-profit pharmacy chains and pharmacy benefit managers (PBMs) to siphon off billions in profit – rather than increasing access for vulnerable Illinoisians.
“Since 2015, almost 70% of audits conducted on Illinois 340B entities included adverse findings, such as illegal distribution of 340B-discounted drugs.”
Through relationships with pharmacies contracting with 340B covered entities, PBMs can generate significant revenue as they rake in the “spread” – the difference between the discounted 340B purchase price and the full cost of the medicine charged to patients or their insurers. Moreover, as the number of contract pharmacies has ballooned in recent years, the proportion of pharmacies in socioeconomically disadvantaged areas has decreased. Some covered entities that gained 340B status because of the populations they serve have turned away from the very communities they were meant to support.
Any expansion of the 340B program without transparency measures to ensure savings are not being used to pad the bottom lines of health system middlemen runs in direct opposition to efforts, including those championed by Governor JB Pritzker, to address how profiteering practices negatively impact patients and independent pharmacies in Illinois.
“Some covered entities that gained 340B status because of the populations they serve have turned away from the very communities they were meant to support.”
The ability for hospitals to profit deeply from 340B medications is fueling significant consolidation of the nation’s cancer care system, with large hospital systems seeking to acquire community oncology practices in pursuit of increased 340B discounts. This leads to closures of local oncology clinics, shifting patients to more expensive hospital settings and often forcing them to travel longer distances to get the care they need. Larger 340B hospitals were responsible for about 80% of hospital acquisitions between 2016 and 2022.
The lack of transparency in 340B has a real impact on Illinois patients.
“It’s unacceptable that some hospitals misuse 340B savings while patients struggle with outrageous medical bills. I was one of the lucky ones — someone stepped in to help me. But no one’s survival should depend on luck,” said LaTia Maxwell, a Tigerlily Foundation ANGEL advocate living in South Holland.
“Any expansion of the 340B program without transparency measures to ensure savings are not being used to pad the bottom lines of health system middlemen runs in direct opposition to efforts, including those championed by Governor JB Pritzker, to address how profiteering practices negatively impact patients and independent pharmacies in Illinois.”
Unless we instill much-needed transparency into 340B, bad actors will continue to profit off the underserved communities the program was meant to protect. State lawmakers must not advance SB 2385/HB 3350, or any legislation that expands the program and allows for its continued abuse at the hands of for-profit middlemen.
A patchwork approach to 340B legislation will only enable for-profit corporations and large hospital systems to profit, while failing to support patients in need through increased access to care. Lawmakers should follow the Governor’s lead and focus on efforts that will meaningfully support patient access and reduce costs at the pharmacy counter.
“Unless we instill much-needed transparency into 340B, bad actors will continue to profit off the underserved communities the program was meant to protect. State lawmakers must not advance SB 2385/HB 3350, or any legislation that expands the program and allows for its continued abuse at the hands of for-profit middlemen.”
Maimah Karmo is a breast cancer survivor and is the founder and CEO of Tigerlily Foundation, a national women’s health and oncology organization.
Gary E. Kay, M.D. is a board-certified oncologist and internist at Northwest Oncology & Hematology in Rolling Meadows.
An interview with Maimah Karmo about her life’s work of empowering young women with breast cancer
Sixteen years ago, Maimah Karmo established the Tigerlily Foundation. Her vision was to create a global organization to provide education, awareness, advocacy, and support to young women before, during, and after breast cancer, and to transform the lives of patients as well as the healthcare ecosystem to achieve health equity for all.
Kristin Siyahian
Establishing a foundation with these goals is a huge undertaking, not to mention a noble one; but what’s astounding about Tigerlily’s founding is the timing. Maimah, a young mother to then 3-year-old Noelle, created Tigerlily while in the midst of receiving chemotherapy for triple-negative breast cancer.
Maimah Karmo is Founder and CEO of Tigerlily Foundation and a 16-year breast cancer survivor.
The only way Maimah knew how to deal with or make sense of her diagnosis was to use her experiences to give back to this community—a community that she didn’t yet fully understand. She describes the decision to establish Tigerlily as divinely inspired as she recounts the evening she went to bed “bald, sick, and scared” and asked God to restore her spirit. In return, she would do whatever God asked of her.
She says she awoke a new person. Her mind flooded with new ideas, and she began writing them down as quickly as they came to her. Those ideas were the beginnings of the Tigerlily Foundation.
Today, Tigerlily Foundation is a national leader (with a growing global footprint) in breast cancer education, awareness, and advocacy for young women. Maimah reports that the work is enriching and beautiful.
I was fortunate enough to have the opportunity to speak with Maimah about the significance of the Tigerlily flower, the importance of advocacy, and the changes she’s seen in oncology care. What follows is our thoughtful exchange.
Tigerlily ANGEL Advocates and supporters at the Tigerlily Foundation’s Young Women’s Breast Health Day on the Hill.
Curiosity is getting the better of me, why is the foundation named after the Tigerlily flower?
Tigerlily ANGEL Advocates and supporters at the Tigerlily Foundation’s Young Women’s Breast Health Day on the Hill.
Lilies are perennial. They are dormant in the fall and winter, but they will bloom again in the spring. Just like a lily that loses its petals for a season, a woman going through breast cancer treatment may lose her hair, she may lose one or more breasts, but it is possible to come through treatment stronger, more beautiful, and transformed by the journey. She can bloom again, even in the midst of her journey.
Advocacy is a big part of the Tigerlily mission. How would you advise a newly diagnosed woman to advocate for herself?
When a woman is diagnosed, her most common initial reaction is fear. When she contacts Tigerlily, the very first thing we do is love her and reassure her that she is not alone. We’re here for her; we will hold her hand throughout the process.
Then, we listen. We ask about her immediate needs, and we listen closely so we can help to meet those needs.
Ultimately, we want to instill a badass mentality in her! (Please excuse the expression!) We want her to go from fearful to educated and empowered. An educated and empowered woman is best able to advocate for herself and make important, timely decisions about her healthcare options and planning. At Tigerlily, we have many programs to educate and empower our members. In fact, we just launched our “Barrier Toolkit” series to empower women to remove barriers to their care. The toolkits address topics such as health literacy, financial barriers, healthcare access, and other social issues in the healthcare system. Women can access and download these toolkits directly from our website.
What about women who have not experienced breast cancer firsthand, how does Tigerlily advocate for them?
While it’s important to reach women who are patients, it’s just as important to reach women who have not had breast cancer to teach them about their personal risk factors. We want all women to be better equipped to reduce their risk, access timely screening, detect cancer early, and access personalized and targeted treatments.
We teach women to live a healthy lifestyle in the hope of reducing risk; and while we don’t know how to prevent cancer, we want to find it early.
We advocate for all women to know their family health history. Even if you do not have breast cancer in your family, you can be your own health advocate by knowing your body, performing your breast self-exams each month, speaking up if something isn’t right, and talking with your family about your health history.
Women can explore these topics on our site. For example, our BREATHE Tv series features several episodes on the power of advocacy as well as the role family plays in understanding cancer risk.
Can you tell us about the Tigerlily ANGEL Advocacy Program?
Yes, of course. ANGEL stands for Advocate Now to Grow, Empower, & Lead. The ANGEL Advocacy Program works to address disparities and barriers to care for women of color, particularly black women, but it’s open to all women.
Women between the ages of 21 and 50 years who have been impacted by breast cancer can become an ANGEL Advocate. Advocates receive educational trainings on breast cancer and disparities that affect certain groups of women, as well as trainings on creating change, how to become a better self-advocate, and advocating on behalf of others. Once trained, we provide opportunities to join advisory boards or speak on panels. We give them tools to conduct community outreach. There are opportunities to join scientific platforms and partner with stakeholders, including pharmaceutical companies or other advocacy organizations, to serve as expert advisors locally and nationally. ANGEL Advocates have amazing opportunities to improve care and improve lives.
During your 16 years as a survivor, what has changed the most for women with breast cancer?
I believe general awareness of breast cancer has increased, and screening has become more available to women at younger ages. Also, survivorship support and psychosocial support are more accessible now.
Mostly, I feel like the patient’s voice is more highly respected and valued now. I strongly encourage all women going through breast cancer treatment to think of themselves as an expert. Just like your oncologist is an expert at treating cancer, you are an expert at living with cancer. As an expert, you are an equal partner on your healthcare team. As an equal partner, your voice should never be dismissed.
What still needs to change?
Health equity is still a major issue, and there’s a lot of work to be done to achieve equity in healthcare in this country. At Tigerlily, we launched our #InclusionPledge and received more than 10,000 signatures from community-based to global organizations and major cancer centers in several weeks. People who sign the pledge make specific, measurable, tangible actions that will result in health equity for black women.
Is there a Tigerlily success story you’d like to share?
Honestly, there are so many! I could tell you about the woman whose insurance company wouldn’t cover screening when she found a lump. We got involved and helped her navigate access to screening, and thankfully, it was not cancer. I could tell you about the woman who was homeless while navigating breast cancer, but with our support she’s now working and her family life is stable, as is her health. I could tell you about the young girl who volunteered at Tigerlily years ago and because of that experience chose to work in the healthcare field and still volunteers with us to make a difference. To me, every woman we come into contact with is a success story.
What about you? What is your biggest success?
I think that the biggest success for me personally is that I get to be here to raise my daughter. That’s my success. I just marked the 16th anniversary of my diagnosis. My daughter and I spent that day together; we had manicures and pedicures, we went out to dinner, and we just sat there and smiled at each other. Being able to do life with her is my biggest success and gift!
There’s a sound researchers want you to hear – the sound of cancer cells being destroyed.
Researchers have achieved the first-ever recording of cancer cells being destroyed, and it has people talking. And listening.
Kristin Siyahian
The idea to capture this sound was born several years ago when the team at Grey Group was considering how to make an invisible enemy like cancer more “real.” They asked a simple question, “What if you could actually hear cancer cells being destroyed?” and determined that if a recording of a cancer cell death was possible, it would certainly be the most beautiful sound anyone could hear.
In their quest to make the invisible audible, the team contacted researchers and labs all over the world before finding a partner in Associate Professor Conor L. Evans, PhD, of Harvard Medical School.
To make this recording widely available, they partnered with the American Society of Clinical Oncology (ASCO) and Health@WPP to plan the launch, reveal the sound, and promote a campaign.
While their program has captured the imaginations of the entire oncology community and inspired posts on social media, their goal is to get this sound to the people who need it the most. People affected by cancer.
I had the chance to talk to 3 members of the team, Dr. Conor L. Evans, Ankit Vahia, PhD, and Alice Norcia, who achieved the recording and created the campaign that promotes it; a campaign perfectly named The Most Beautiful Sound. What follows is our thoughtful exchange.
Where did the idea originate to attempt a recording of cancer cells being destroyed?
Dr. Vahia: I think a universal truth for people who have been diagnosed with cancer is that cancer is invisible, it’s isolating, it’s debilitating, and you may have no sense of whether the treatment is working. The question was how can we change an invisible journey?
Can you describe, in layman’s terms, how you achieved the recording?
Dr. Evans: My team developed an imaging technique called Coherent Raman Imaging. We used this method to acquire images of cells at the moment of death. These images were then converted into time-varying signals that Ankit and his team transcribed into sounds that you can hear.
I have to ask, is the sound what you expected?
Dr. Evans: Yes and no. From looking at the signals we collected, I had a rough idea of how the sound could be—how it could potentially reflect cell death. But it really didn’t “click” until Ankit called me up and played the sound for me. That was a very powerful moment.
Can you speak to the importance of this sound and potential of therapeutic value?
Dr Evans: Cancer is frightening, not only for patients, but for their colleagues, friends, and loved ones. The entire process, from diagnosis to treatment, can be abstract, even for those of us who study cancer. It can take away your power and agency. I feel that anything that can make cancer and cancer treatment more tangible has the potential to give people the ability to better understand and internalize the treatment process and hopefully help to restore some of that agency.
Ms. Norcia, you were involved in launching The Most Beautiful Sound campaign. We’re curious how you took this sound and built a campaign around it.
Ms. Norcia: The sound itself is so powerful, we knew we needed a strong campaign to bring it to the world. We videoed people with cancer listening to the sound, and the film beautifully captures the raw emotion of that moment.
This is a complex story to tell, and coordinating timing of the launch was extremely important to ensure it received the attention it deserves. With our partners Health@WPP and ASCO, we officially launched at the ASCO national conference. It was just as impactful as we hoped.
How have people reacted to the sound?
Dr. Vahia: The reactions were startling. We heard comments like, “What a sweet sound of death.” I saw someone post a comment that said, “It’s the sound of the mighty crescendo of hope.” In talking with the founder of Cancer Dojo, he said, “This sound helps you visualize what you’re fighting.” That’s exactly what we wanted to hear.
What are your next steps?
Dr. Vahia: We want to get this to as many people fighting cancer as possible. It’s an open-source sound. We encourage you to download it, listen to it, put it on your iPad, put it on your phone, listen to it in the infusion room. Play it loud.
Adapted from an interview in the Journal of Oncology Navigation & Survivorship.
Real Women. Different Surgeries. An Exploration of Your Options.
Your oncologist has recommended surgery as part of your treatment plan for breast cancer. But it’s not that simple: there are decisions to make about the type of surgery for your treatment plan and then more decisions to make about surgery for your cosmetic plan. Surgical options regarding your treatment plan may include lumpectomy (also known as a partial mastectomy), unilateral mastectomy (removal of one breast), or bilateral mastectomy (removal of both breasts). After making that decision, you are asked to make more decisions about cosmetics—specifically, whether you’d like to have reconstructive surgery, or not.
Katelyn Carey, RN
That’s a lot of decision-making for someone who is still grappling with the news of a cancer diagnosis. Speaking from experience, the amount of information and required decision-making can feel overwhelming. Cancer treatment decisions are about protecting your life and your future; but especially with surgeries that change our appearance, they can also be about protecting our sense of self along the way.
Surgical decision-making can be made easier by seeing examples of women who have gone through this and remain beautiful and strong. Many of us felt this was so important that we worked together to find a more reassuring way to share surgical information and recovery tips. This article shares some of our surgical decisions and photos, taken from the book Beauty After Breast Cancer. Shared with the participants’ permission, these partial excerpts from the book will hopefully serve the purpose we intended: guiding and providing hope (and the knowledge that you’re not alone) as you navigate this breast cancer space.
Insurance Coverage
The Federal Women’s Health and Cancer Rights Act1 ensures that insurance companies help cover the following costs:
Reconstruction of the breast that was removed by mastectomy
Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy
Any external breast prostheses (breast forms that fit into your bra) that are needed before, during, or in place of reconstruction
Any physical complications at all stages of mastectomy, including lymphedema (fluid buildup in the arm and chest on the side of the surgery)
Unfortunately, there are a few exceptions to this act, such as varying state laws and certain types of insurance that do not cover mastectomies, and therefore are not required to cover any associated expenses. If your insurance pays for the surgery, then they should also cover reconstruction or prostheses. Insurance issues can be challenging; my advice is to talk to your medical team, especially your oncology patient navigator, if you need help.
Personal Preferences
The recommendations of your treatment team in combination with insurance considerations set the framework for your surgical decisions. But then, it gets personal. Really personal. There are many factors that can impact how you feel and ultimately help you determine what you want. There are critical questions that many women, including myself, have found helpful when it comes to making surgical choices:
How big a role do my breasts play in my overall identity?
Do I have other risk factors that might guide me to a more radical surgery choice?
How willing am I to have additional surgeries in the future?
How does having or not having breasts potentially affect intimacy for me?
How cautious do I want to be regarding potential risks and side effects?
Are there personal or treatment-related reasons to select a certain surgery or certain timeline?
First Things First
Your decision about surgery should be based on your treatment needs. Your medical team will make a recommendation based on your individual situation—including the type of cancer, the stage, how aggressive the cancer is, and how likely it is to return. Many times, your treatment team will recommend initial reconstruction steps to be completed during the first surgery; but keep in mind, if you are on the fence about reconstruction, these steps do not have to occur simultaneously.
This is worth repeating: you do not need to make an immediate decision regarding reconstruction. You may need to make a quick decision about the type of initial surgery, but you do not necessarily need to rush into a decision about reconstruction. In most cases, reconstruction can be addressed at a later time. My advice? If you need more time, take it. And, as in the case of Amy, it’s okay if you change your mind down the road.
Amy
Amy chose a skin-sparing mastectomy with the intention of having reconstruction surgery later. She ultimately decided against reconstruction or even a surgery to have the extra skin removed and tucked flat—she just didn’t care enough to go through another surgery.
When she wants her profile to appear symmetrical under clothes, she can use a prosthesis in her bra. A custom prosthetic would work particularly well for Amy because it would be designed to her exact shape.
Reconstruction Options
Surgical reconstruction involves using either your own body (muscle flaps and fat), implants, or a combination of the two to build up a new breast shape. There are multiple reasons why your surgeon might recommend one versus the other. Surgeries that take muscle from other areas may involve longer recovery times; surgeries that involve implants may require additional surgeries at a later date to replace the implants.
In Photo Album 1, you will see results of reconstructive surgery from four women who underwent different types of surgeries.
Photo Album 1: Reconstructive Surgery Results
Why Some Women Choose Not to Reconstruct
There are potential side effects or complications with any type of reconstruction. If minimizing the number of possible complications is a high priority for you, starting off without a reconstruction might be your best option. If maintaining your presurgical look is a higher priority, that would steer you towards reconstruction. Either way, it is important to know that your body will not look or feel the same after surgery. Numb areas are a common result of surgery, and your physical appearance will not exactly match the version of you that you’re used to seeing. That can be hard. It’s also important to recognize that the way your body looks immediately postsurgery will be different (and sometimes more alarming) than what you see after a few months of healing.
One of the best ways to explore nonsurgical options is to find a mastectomy apparel shop in your area. These shops are staffed with professionals who are specially trained to fit you for different clothing and breast prostheses that will give you a more typical silhouette after surgery. Often, they can also suggest other products that help you look and feel more like yourself during treatment too—everything from wigs, to eyebrows, to compression garments, to prosthetics. With all the prosthetic breast options available, I find that I’m almost always able to be comfortable in my clothes and my body using one of those choices. I jokingly say that every morning I pick out my outfit, my jewelry, and my boobs. Then I’m ready for the day.
In Photo Album 2, you will see results of four women who who opted to forego reconstructive surgery.
Final Thoughts
Many women, including myself, have changed their minds as time goes on and opted for reconstruction years after a mastectomy, or deconstructed a reconstruction. For now, just know that you have a right to make an educated decision. Make use of as many resources as possible to explore your options and remember that you are allowed to take time if you are not certain about reconstruction. You may not regain your exact body after surgery, but you can still feel confident and beautiful again.
Reference
Centers for Medicare & Medicaid Services. Women’s Health and Cancer Rights Act (WHCRA). Accessed August 30, 2023. www.cms.gov/CCIIO/Programs-and-Initiatives/Other-Insurance-Protections/whcra_factsheet.
About the Author
Katelyn Carey, RN, is a nurse educator and author who specializes in the science of compassion. Using trauma and cognitive science in combination with 20 years’ experience in ER, hospice, and acute care, Katelyn teaches communication strategies and recovery tools that help patients and caregivers navigate stressful times successfully. She is author of Beauty After Breast Cancer.
That’s a lot of decision-making for someone who is still grappling with the news of a cancer diagnosis. Speaking from experience, the amount of information and required decision-making can feel overwhelming. Cancer treatment decisions are about protecting your life and your future; but especially with surgeries that change our appearance, they can also be about protecting our sense of self along the way.
Amy chose a skin-sparing mastectomy with the intention of having reconstruction surgery later. She ultimately decided against reconstruction or even a surgery to have the extra skin removed and tucked flat—she just didn’t care enough to go through another surgery.
Katelyn Carey, RN, is a nurse educator and author who specializes in the science of compassion. Using trauma and cognitive science in combination with 20 years’ experience in ER, hospice, and acute care, Katelyn teaches communication strategies and recovery tools that help patients and caregivers navigate stressful times successfully. She is author of Beauty After Breast Cancer.