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Whole Health Series: Navigating the Stages of Healing in Survivorship
I used to think healing had a timeline.
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.
With love,
Maimah Karmo
Broken Federal Program Raises Healthcare Costs. Illinois Patients Deserve Transparency.
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.
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Education, Advocacy, and Empowerment Bloom Eternal at Tigerlily Foundation
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.
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?
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!
The Most Beautiful Sound
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.
Mastectomy and the Reconstruction Decision
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.
Talking About the “C” Word With Your Family: How Sharing Our Health History Can Save Lives
One of the most important things we can do for our health is to share our family health history. Knowing our family’s health history can help us understand our risk for certain diseases and take steps to prevent them or catch them early. This is especially important when it comes to breast cancer. A lot of people know me as the founder of the Tigerlily Foundation and a relentless champion for health, but this wasn’t always the case. I stepped onto this path after facing a health scare that changed the course of my life.
Maimah Karmo
My Mother’s Teachings
My mother, a nurse, instilled in me the importance of breast self-examinations at a young age, and that knowledge ultimately saved my life. Since then, I have dedicated my life to advocating for breast cancer awareness and early detection. I was only 32 years old when I was diagnosed with breast cancer. At that age, most women don’t even think about cancer, let alone know what to do if they find a lump. But because of my mother’s teachings, I knew my body, and while doing a monthly breast self-exam, I found the lump early, and I advocated for myself to get screened, despite doctors saying I was too young. My diagnosis experience ignited a passion within me for advocacy and education. I founded the Tigerlily Foundation, while in treatment, to empower young women to be their own best health advocates, as well as to educate them about breast cancer and to change systems that don’t work in our best interest. I didn’t always feel as fearless as I may have seemed, but I’ve always told myself that I had to use my privilege for power. The privilege is that I am alive, and therefore I have a responsibility to use that power to ensure that other women are equipped with knowledge and resources to help make sure that they too have better health outcomes.
Family Conversations
When I was diagnosed with breast cancer, I knew that this was information I had to pass down to my own daughter, Noelle. She was only 3—too early for certain conversations, but not too young for me to start modeling what self-advocacy, commitment to and compassion for community looked like. While we still don’t know what causes breast cancer, I did know that certain factors increased risk, so I began to eat cleaner, exercise more, get rest, integrate yoga, detoxing, and other complementary lifestyle behaviors. I talked to her about how she felt—emotionally, mentally, spiritually, and physically. When she got older, I talked with her about the importance of self-examinations, just as my mother had done with me. Noelle created her own living legacy piece with Tigerlily Foundation through the Pajama Glam program. This program provides education and resources to young girls about breast health and ways they can implement healthy lifestyle tips in their everyday life to help them feel beautiful and empowered, especially during a difficult time. The Pajama Glam is our most fun event—focused on generational conversations with girls, moms, and families—all wrapped in fun, sparkle, and bling. At each event, families come in pajamas, do Zumba, yoga, fitness, dancing, and more, all while filling out their “Passport to Health” throughout the day.
Genetic Testing and Counseling Offerings from Tigerlily
“Genetic Testing: What You Need to Know” is a free guide that provides information on genetic testing for breast cancer and other cancers. It covers topics such as who should consider genetic testing, what the process involves, and what the results mean. You can download the guide from the Tigerlily Foundation website.
“BRCA Gene Mutations: What You Need to Know” is another free guide that focuses specifically on BRCA gene mutations, which are associated with an increased risk of breast and ovarian cancer. The guide provides information on genetic testing for BRCA mutations, as well as options for risk reduction and management. You can download the guide from the Tigerlily Foundation website.
Tigerlily also has feature articles and videos that address this topic, such as “Black Women and Genetic Counseling: How to Become Your Best Advocate” on the Tigerlily web page and the Breathe Tv series season 2, episode 6, titled “Hereditary Breast Cancer and Breaking the Cycle” on the Tigerlily YouTube page.
The Tigerlily Foundation website also has a “Resource Library” that includes a variety of information on genetic testing and cancer risk, as well as other topics related to breast cancer and women’s health. You can search the library by keyword or browse by topic to find resources that are relevant to your needs.
The Power of One
My story has come full circle. From my mother’s teachings to my own diagnosis and advocacy work, to passing that knowledge down to my daughter and seeing her create her own legacy. She’s sharing her story at events, educating her peers, and now also leads Tigerlily’s Hope Box program, through which she sends boxes of hope to newly diagnosed patients. Together, she and I have built a grassroots organization with global reach, starting when she was 3 and I was 32 years old. This is evidence of the power of one and the impact of using that power to impact millions of lives.
Tigerlily Foundation is a national breast cancer organization whose mission is to educate, empower, support, and advocate for young women ages 15 to 45 before, during, and after breast cancer. Tigerlily Foundation is dedicated to ending disparities of age, stage, and color. To learn more, visit tigerlilyfoundation.org.
Your Health History
If you don’t know your family history, this is a call to start having those important and powerful conversations. Talking with your family should be as easy as doing it while you’re on a drive, out having a meal, or doing chores around the house. So, I encourage you to approach the conversation with empathy and understanding—and it doesn’t have to be so serious. Let your family know that you care about their health and that you want to make sure that everyone has the information they need to live their best lives possible.
If you do have a family history of cancer, it is important to talk with your doctor about your risk and any screening or prevention measures you should take. You may also want to talk with a genetic counselor, who can help you understand your risk based on your family history and any genetic testing you may have had.
Lifesaving Conversations
I know firsthand how important it is for families to create generational awareness about health history and being proactive. We need to make sure that we are talking about health with our families, and that we are getting the screening and prevention measures we need. And we need to know that health is wealth.
Talking about cancer can be scary, but it is also lifesaving. By sharing our family health history and talking openly about cancer, we can empower ourselves and our loved ones to take control of our health and catch cancer early. It is up to each of us to create our own legacy of awareness and education, so that future generations can live healthy, cancer-free lives.
About the Author
Maimah Karmo is the founder of Tigerlily Foundation, a breast cancer survivor, and an Advisory Board member of Conquer.
Originally published in Conquer Magazine.
Increasing Enrollment within the Black or African American Community in the TAPUR Study
The underrepresentation of Black or African Americans in clinical research trials within the United States is a problem that has an impact on healthcare equity and public health. Despite making up a sizeable proportion of the U.S. population, Black Americans have not been fairly represented in medical studies in the past, and this inequality continues to this day. The average enrollment of Black or African Americans within cancer clinical trials is approximately 3%. The effects of this lack of representation are far-reaching. Clinical trials serve as grounds for evidence-based medical practices and treatments. When a particular population, such as Black Americans, is not adequately represented, it can lead to disparities in healthcare outcomes and the effectiveness of treatments for that group. What works well for one population may not have the same efficacy to another.
The Targeted Agent Profiling Utilization Registry (TAPUR) Study is proud to share that the Black or African American participant enrollment in the study is higher than the national average. As of August 3rd, 2023, the TAPUR Study has registered 3,947 participants and enrolled 2,710 participants. Out of those participants, the TAPUR Study is proud to report that 459 (11.6%) of the 3,947 participants registered were reported to be Black or African American, and 313 (11.5%) participants enrolled were reported to be Black or African American. These efforts are a direct result of the TAPUR Team’s dedication to increasing enrollment within racial/ethnic minorities, including activating additional clinical research sites, and collaborating with patient advocate organizations.
The TAPUR Study is a multibasket study which means that the study looks at multiple diseases, multiple gene alterations, and multiple treatments rather than one. The study is also designed to be pragmatic, which means it is meant to be practical and focused on what works best in real-world settings. For example, the study has broad eligibility criteria and allows patients with advanced and metastatic disease, collects the minimum necessary data (no additional data is collected only for research purposes), allows for flexibility including flexibility in treatment decisions, and having the option for study drug to be mailed to the participant homes (if oral drug).
If you or a loved one is a person living with advanced breast cancer with a BRAF gene mutation that has not responded to standard treatment the TAPUR Study clinical trial has an open arm that may be a good resource. Talk to your oncologist about the Regorafenib (STIVARGA) study arm on the TAPUR Study. There are over 250 clinical sites across 28 states in the United States. For more information on the TAPUR Study, visit the TAPUR website at www.TAPUR.org. You can also visit the website to find a report of current treatment options on the TAPUR Study and/or locate a participating center near you https://www.tapur.org/map.
Tigerlily presents at ASCO
Author: Virginia Leach, Research Manager
Hello everyone!
My name is Virginia Leach and I’m TLF’s Research Manager. I’ve had the pleasure of working with several patient-advocates and members of the organization to discuss the exciting opportunities we have in sharing our research with the community.
The Role of Patient-Advocates
One of the many roles of patient-advocates is to collaborate with others to ensure the patient voice is heard throughout the entire research process. With input from our patient-advocates and community-at-large, our focus for 2023 is Triple-Negative Breast Cancer (TNBC). With the help of members, TLF shares important research with key stakeholders in the cancer care community including medical providers, industry partners and patient-advocate organizations.
American Society of Clinical Oncology Conference
The fourth conference attended by Tigerlily in 2023 was the American Society of Clinical Oncology (ASCO) in Chicago, IL from June 2nd-6th. ASCO’s mission is “conquering cancer through research, education, and promotion of the highest quality, equitable patient care,” and has been established since 1964 and represents more than 45,000 oncology professionals who care for people living with cancer.
TLF’s Research Study
On behalf of the research team and members of TLF, I presented the research conducted by members of the TNBC Alliance of DC and Dallas/Fort Worth, TX. After reviewing the literature on Triple-Negative Breast Cancer (TNBC), the team found very few community-based interventions addressing the risk of and diagnosis with TNBC in Black or African American women. This breast cancer sub-type negatively impacts Black women in comparison to other racial groups in the United States.
Presenting our research in the form of an academic poster allowed TLF to shine in the midst of other important research highlighting the impact TNBC. TLF was one of few community-based organizations selected to share research by and for the TNBC community. It was an honor to share our findings, provide solutions to reduce the disparities within TNBC, and discuss the resources and services TLF provides.
Acknowledgements
TLF thanks our sponsor Gilead Sciences for their support in this research. We also thank our collaborators ASCO Patient Advocacy and GRASP for championing the way patient-advocates can mobilize their collective voice. Congratulations to the co-authors of this research study for being selected to present at ASCO 2023. See their names and affiliations below.
If you’re interested in attending conferences or community events in the future, please reach out to me via email (virginia@tigerlilyfoundation.org) for upcoming opportunities.
ASCO 2023 Abstract #1089
Title: The case for acceleration of prospective multi-stakeholder led community-based research in young Black women with triple negative breast cancer (TNBC)
TNBC Alliance of DC and Dallas/Fort Worth
Jeanne Regnante, Tigerlily Foundation & Patient 3i LLC, Stone Ridge, VA
Maimah Karmo, Tigerlily Foundation, Stone Ridge, VA
Virginia Leach, Tigerlily Foundation, Stone Ridge, VA
Mandi L. Pratt-Chapman, GW Cancer Center, Washington, DC
Kristin Bodiford, Premier Allied Sciences, Charlotte, NC
Regina Hampton, DC Breast Care, Lanham, MD
Glenda Maria Delgado Ramos, UT Southwestern Medical Center, Dallas, TX
Chika Nwachukwu, UT Southwestern Medical Center5, Dallas, TX
Adrienne Tilbor, Patient 3i LLC
Virginia Leach, TLF Research Manager, at ASCO 2023
Supported by grant funding from Gilead Sciences, Inc. Gilead Sciences, Inc. has had no input into the development or content of these materials.
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