Conquer

February 28, 2024

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.

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?

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!

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February 27, 2024

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.

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February 26, 2024

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.

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February 23, 2024

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.