While breast cancer is often thought of as something to be proactive about after 40, in this series, Breast Cancer At Any Age, we speak to women who had scares or battled breast cancer at a much younger age than expected.
The year was 2006, and Maimah Karmo was taking a shower. The then 31-year-old was in the midst of her morning routine. She’d said her prayers, greeted her then 3-year-old daughter with a good morning kiss, prepared breakfast and was off for a quick cleansing. She turned on Diana Ross’s greatest hits, specifically “Ain’t No Mountain High Enough,” and danced as the water washed over her. What felt like the normal day soon was turned upside down.
“My mom taught me my breast exams at 13, so I’ve been doing them as just part of my ritual. I didn’t need to have a tag to remind me. I might even do it more than once a month because I’m washing, I would just feel while I’m washing, whatever,” she says. “But that one morning I did it and I just felt a lump. I was like, ‘What is that?'”
By knowing her body well thanks to her mom’s recommendations, Karmo was able to pinpoint that she was feeling something abnormal. She says it felt like a pebble under her skin and it wasn’t there the month before. “In that moment when I touched my chest and I felt the lump, I heard her words saying, ‘You’ll know,’ in my head,” Karmo says of being taught to feel for any changes. “And I knew it wasn’t a good thing.”
She knew it, but Karmo couldn’t seem to get other people to believe it. Namely, her doctors. She went to her OBGYN at the time and asked for a mammogram, which came back clear. When she told them that their “technology is flawed” and that she could certainly feel something, they tried to dissuade her from worrying about it, telling her she was “under the age” to be concerned about breast cancer since she didn’t have a family history of it. But she had made up her mind that she wanted the lump checked out and would do everything possible to rule out all problems before letting it go. So she sought out a biopsy.
“I had to push for a biopsy for months and months and months and months and months. And then finally I got it. The doctor, the day I got it, she was kind of dismissing me like, ‘Why are you doing this? This is a waste of my time. There are other people who are really sick. You have nothing wrong with you,’ when she was doing it. So I felt really uncomfortable,” she recalls.
But she was right all along. When the results came back, she was diagnosed with triple-negative breast cancer at 31. She received an apology for the lump previously being missed, and was told it was because of her “dense breasts.” She was understandably distraught, and the information she was being fed certainly didn’t help.
“It’s aggressive,” Karmo says. “It recurs at a much higher rate [for Black women] than other populations. It is very deadly, and until about three years ago, there was no treatment targeting triple-negative breast cancer in any setting. And so pretty much they told me that I would probably recur in five years, at which time it would be metastatic and I would die. And that was what I was looking at.”
With no treatment for this form of the disease, there were no receptors that could be attacked with chemotherapy. After surgery to remove the lump, she tried two different chemotherapies in the hopes that any extra cancer cells in the body could be killed. She had rounds for several months and went through it physically as she took different medications. The first one made her ill. With the second, her skin would itch unbearably as she broke out in welts all over her body. She was close to stopping treatment altogether. “My mom said, ‘You can’t stop because you have to live.'”
In that time her relationship fell apart, combined with treatment side effects, Maimah found herself emotionally, financially and physically overwhelmed, burning through PTO at work, but all the while focused on taking care of her then 3-year-old daughter and staying alive.. She was weak, had become infertile (she was told that she would need to start chemo immediately and couldn’t harvest her eggs, which she says was “not the truth”), lost a great deal of weight and battled with the mental toll of facing the disease. She wondered how other women, with a lot less than her and balancing things like children and part-time jobs, were getting through the same ordeal.
“Over time I began to ask, ‘Why did all these bad things happen to me? ‘What happened and what’s broken and why?’ And then after a while I was like, ‘Well what can I do to change this while I’m still alive?'” she recalls. That’s how her organization, the Tigerlily Foundation, came to be.
“My work began out of a sense of this is a very dire need. People are dying. This is sick care, not healthcare. And if I have the opportunity to make a difference in my five years I have left, whether it’s less than that or not, I’ll do whatever’s in my power to make a difference and to ensure that people have the right to live,” Karmo says.
That said, it’s been 17 years since she felt that lump in her breast and she’s still here — looking not a day over 35 and feeling good thanks to a change in lifestyle. She’s on a raw vegan diet, constantly consumes alkaline water, makes time for colonics and sauna visits to purge toxins, tries meditation, reiki and acupuncture, gets plenty of rest, fasts (juice fasting for a week or two, occasionally, just water for a week), and avoids stress with the help of yoga. All of this is done to have her body in a state of autophagy, which is the way our body moves out unnecessary and dysfunctional cellular components.
Sure, she has some cardiovascular and neurological challenges from her treatments, including radiation, and she knows many women who haven’t survived their battles, but she’s here. Through the Tigerlily Foundation, Karmo is saving lives through advocacy, education, empowerment and programming that helps women, from those who don’t have breast cancer to those who are going through it. For the latter group, Karmo is pushing for Black women to take part in clinical trials. Recent studies have found that many Black women, nearly half with cancer, are never informed about these trials, which could be the treatment they need. For the record, Black people are less than five percent of clinical trial participants despite having some of the highest death rates across a variety of diseases, including breast cancer. So that’s where Tigerlily Foundation’s “My Living Legacy Campaign,” in partnership with global pharma company GSK, comes in.
“If we’re not getting into clinical trials, what’s happening to us?” Karmo asks. “We’re getting cancer because of skincare products, hair care products, genetic disposition, lifestyle, just whatever it is that’s causing us to get it at higher rates, and the worst kind of cancer. And because we’re not getting involved in clinical trials, then there’s no treatment for us to have.”
But she understands the hesitancy Black people might have to exposing themselves to clinical trials. With a history that includes Henrietta Lacks and the Tuskegee Experiment, there’s some understood skepticism. Karmo, however, says times have changed, and what’s at stake is greater than what concerns us.
“It’s not about this weird thing where they stick you with medication in a room that locks and you can’t escape. You go to the doctor and they say, ‘Here’s an experimental drug that can help you live longer,'” she says of how the trials work. “And oftentimes most of the drugs help people live between 18 months to three years longer, and some will actually stop cancer in it’s tracks for a long time, up to 10, 15 years. I’ve had friends who’ve lived 15 years past a diagnosis of Stage 4 cancer because they were on a clinical trial, an experimental drug. It’s not like this scary thing that is not regulated. There are things put in place to protect patients.”
She adds, “By the grace of God, I’m here 17 years past my exploration date. And so getting Black women to understand the power they have to change… the history can’t be changed, but the legacy of the future can be changed, hence the name, ‘My Living Legacy.’ And how do you use your legacy, your living legacy for present change and future change for your children and for yourselves?”
When it comes to her own living legacy, in addition to the Tigerlily Foundation, Karmo’s daughter, Noelle, who was three at the beginning of this journey, is now 20. Running the Foundation’s Hope Box Program aimed at supporting those recently diagnosed, she’s doing this important work alongside her mom and is also self-aware when it comes to knowing her body. “As a mother, all you can do is teach your kids. If I leave her with nothing in this lifetime and no money and nothing material, if she knows how to love herself, love her body, be her best advocate, be proactive, live a full life of joy, take care of herself and be a good person, that’s what I want. To me, that’s the biggest thing I would give to her. Just create the most beautiful, epic life you can have,” she says.
Both mother and daughter are looking to empower Black women, whether it’s to speak to their doctors about clinical trials as they fight through breast cancer and to encourage those without it to know their bodies so anything they find can be treated sooner than later — among other things. “I want girls to start knowing their bodies intimately in and out, knowing what you’re eating, get your rest, hydrate, see your doctor every single year. If you have breast cancer, stay with the treatment, get support, all those things. Get screened annually. Also, if you’re at risk, get screened earlier.”
“Watch what you’re spending your money on. If you ask somebody, ‘What’s your money going into?’ People will say, ‘I can’t afford mammograms.’ But then you see they bought some new shoes,” she continues. “And whatever you consume is what you become. Are you spending hours on TikTok or are you spending some hours on rest and meditation? Are you spending all your money on going out partying and drinking or buying clothes and shoes? You can do that too, but are you spending money on eating healthy, detoxing, getting your body free of unhealthy things? And what kind of products are you buying?”
Karmo adds, “It is just a matter of people looking at what you’re consuming with your eyes, with your mind, with your heart, with your thoughts. Are you seeing your doctor regularly? People set aside dates with their friends months in advance for brunch. Why don’t you schedule your mammography appointments every year? Put it on your calendar. It’s all of these things that matter.”