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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
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.

Why me, why cancer can happen to anyone

By Ashleigh Armstrong 

 

I was the first. There was no medal. This definitely wasn’t a win. 
 
The first call to my grandmother was to give her the news, I have breast cancer. The second was to ask if anyone in our family ever has had breast cancer. I had no recollection of anyone ever experiencing breast cancer. Who better to know than my grandmother? The holder of all information. 
 
No one. No one for generations that she could remember had breast cancer. She asked if she could reach out to distant family to see if they had any recollection of distant relatives with breast cancer. She reported back: no one. 
 
I never knew my father or his side of the family. My sister in her adult years decided it was important to reach out to them. I never felt the same. She asked if anyone on that side of the family had ever had breast cancer. No one that they could recall. 
 
My oncologist recommended genetic testing. Most have heard of the BRCA genes. Celebrities like Angelina Jolie have tested positive and opted for a preventative mastectomy. I heard those stories. What I didn’t know was there were other genes that also went hand and hand with breast cancer and caused things like ovarian cancer. I agreed to the testing. 
 
We did a panel of 52 genes. All of the breast cancer genes came back negative. I did have a mutation for colon cancer. This could’ve been inherited from my mother but the geneticist assured me that this gene would not cause breast cancer. 
 
I was so confused. If this wasn’t in my family and I didn’t have a gene mutation, how could I possibly have a rare form of breast cancer at 31 years old? 
 
Still in the middle of a pandemic, I received the news through a video call with the geneticist. My geneticist explained to me that since there is no familial background and I don’t have any genes my cancer is environmental. Environmental?! Yes, this was caused by cancer-causing substances in the environment. 

It could’ve been the food I ate, the water I drank, the air I breathed. I went looking for answers, but they’re just not there. Scientists are still trying to figure out which exposures are harmful. There are still so many questions that haven’t been answered.  

I was so lost when I received this news. I was also thankful. Thankful because this should mean my children can’t inherit a breast cancer gene from me. I wanted a reason though. A reason for this to happen to me.  

If this taught me anything it’s that this can happen to anyone. You don’t have to have a family history. You don’t have to have a genetic mutation. What’s most important in the fight is early detection. If you feel something speak up. Fight for your right to be seen and heard.  

Black Women and Genetic Counseling: How to Become Your Best Advocate

By Maimah Karmo

Black women are just as likely to have hereditary breast cancer mutation as white women, yet their participation in genetic counseling and testing is substantially lower. Being your own advocate is crucial with all health-related matters – especially breast cancer. You can do this, in part, by learning more about breast cancer mutations, finding out if you should be tested, and knowing what to do with your test results if you are.

What is Genetic Testing?

Three of the most well-known genes that can mutate and raise your risk of breast and/or ovarian cancer are BRCA1, BRCA2, and PALB2. A mutation, or abnormal change, in these genes can be inherited from your mother or father. While hereditary breast cancer only accounts for 5%–10% of all breast cancer cases, women carrying a risk-conferring BRCA1/2 mutation have a 55%–85% lifetime risk of developing breast cancer (compared to the average lifetime risk of breast cancer for women of about 12%). Women with an abnormal PALB2 gene have a 33% to 58% lifetime risk of developing breast cancer. With genetic testing you would give a blood or saliva sample that would be analyzed to detect any abnormalities in these genes.

You may have also heard the term “genomic testing,” which is also known as biomarker testing. Biomarker testing is for people who have cancer and it’s a way to look for genes, proteins, and other substances (called biomarkers or tumor markers) that can provide information about cancer. Each person’s cancer has a unique pattern of biomarkers and some biomarkers affect how certain cancer treatments work. Other biomarkers help doctors monitor cancer during and after treatment. If you have been diagnosed with cancer, biomarker testing may help you and your doctor choose the best treatment for you.

Do You Need Genetic Testing?

If you’re interested in genetic testing, start by learning as much as you can about your family history on both your mother’s and father’s side. A gene mutation that increases breast cancer risk is more likely to run in your family if you have the following medical histories:

  • Three or more women in your family have had breast and/or ovarian cancer, particularly if they were diagnosed before age 50.
  • A close relative has had cancer involving both breasts.
  • There is both breast and ovarian cancer in your family.
  • Men in your family have had breast cancer.
  • There is breast cancer in your family and relatives on the same side of the family have had other types of cancer.

If any of these are true for your family, you may be a candidate for genetic testing. A genetic counselor can provide more information and help you decide how to move forward. To find a genetic counselor, talk to your doctor or check with local hospitals or cancer centers. Many insurance plans will cover the cost of genetic testing.

You’ve tested positive for a gene mutation. Now what?

Testing positive for a cancer-related gene mutation DOES NOT mean you have breast cancer, and it doesn’t mean that you definitely will get cancer. A positive test result only means that your risk of developing breast cancer over the course of your lifetime is higher than it is for people in general.

If you’ve already had breast cancer, a gene mutation doesn’t mean your original breast cancer is more likely to come back. But it does mean that you’re at higher-than-average risk of developing a second breast cancer.

Your genetic counselor can help you better understand your results and well as strategies for reducing your risk and the side effects of each.

Some of your options include surgery to remove the breasts (prophylactic mastectomy), surgery to remove the ovaries (the main source of estrogen in the body), more frequent mammograms or breast MRI screenings, or taking a risk-reducing medication such as Tamoxifen, which blocks the effects of estrogen in the breast tissue and therefore can reduce the risk or recurrence of hormone-receptor-positive, early-stage breast cancer.

Reducing Your Risk for Breast Cancer

There’s nothing you can do to change your genes or family medical history. Furthermore, research has shown that aldehydes — a common class of chemicals found in car exhausts, smoke, building materials, furniture, cosmetics, shampoos and more — could increase cancer risk by breaking down they body’s defense mechanisms against DNA damage. The study showed this can occur even in normal healthy cells, but people who have inherited a faulty copy of BRCA2 are particularly sensitive to such damage.

Nevertheless, some things are still in your control. Some lifestyle changes can help reduce your risk of breast cancer. Recommendations from the American Cancer Society include:

While the science isn’t clear on how diet affects breast cancer risk, a diet low in fat, processed and red meat, and sugary drinks, but high in fruits and vegetables can certainly have many health benefits. And some studies have found that the Mediterranean Diet could be beneficial to health in general and help protect against breast cancer risk and recurrence in particular.

Be your best advocate by eating well, exercising often, and learning more about genetic testing.

Genetic Testing: My Brave Decisions

By Ashley Dedmon

My Family History 

In 2003, my mother was diagnosed with Stage IV metastatic breast cancer and unfortunately lost her four-year battle at the young age of 52. Shortly after my mother’s battle with cancer, my father was diagnosed with prostate cancer at age 53. He elected to have his prostate removed and is currently doing well. I knew that the odds were against me as I was born into three generations of women affected by breast cancer. After experiencing my mother’s battle and witnessing my father deal with prostate cancer, I naturally believed I was next. I was scared. I had questions, and I needed answers.

Genetic Testing 

It was then that I took immediate action. I reached out to my OB/GYN, updated her on my family history, and she suggested genetic counseling and screening for the BRCA genetic mutation. At the age of 22, my Myriad BRCA Analysis revealed that I was BRCA2 positive, a leading marker for the disease. Having this genetic mutation increased my risk of breast cancer to 87%, compared to the average woman who is at a 12-13 % risk over her lifetime. It increased my risk of ovarian cancer to 63% and elevated my risk for other cancers. I am unsure whether I received the BRCA2 gene mutation from my mother or father. Although, there are multiple breast cancer cases on my mother’s side, I could have inherited the gene mutation from my father since he had prostate cancer, which is an indicator of a BRCA gene mutation. The simple blood test I took not only saved my life but gave me knowledge and empowered me to know my options and make informed decisions. 

Exploring My Options

I was referred to a high-risk oncologist at the age of 22, but my pride got the best of me and I refused to see her. I walked out of her office before I had the opportunity to meet with her. “This is not for me. They have the wrong person,” I muttered to the receptionist as I walked out. I did not want to face or accept my reality. Being in the office reminded me of the many days my father and I spent with my mother in her oncologist’s office for chemotherapy. A cold, empty white space where I saw my mother fight day in and day out.

I finally went back to the oncologist knowing that I had a responsibility to take care of my health. I was stubborn, scared, and didn’t want to face the reality just after losing my mother, but I knew this test would give me the answers. I knew it would help me to navigate my health going forward. I had a responsibility. At my second visit to the oncologist, she gave me the humbling experience I needed. Her words changed my life forever, and I accepted my BRCA2 positive diagnosis as a gift of knowledge and not a death sentence. She said, “Ashley, you have options. Your mother, she didn’t have options. My other patients, they don’t have options. So, let’s explore those options.”

After we discussed my various options, hormone therapy (which would drastically reduce my risk by 50%); surveillance (which would aggressively monitor my breast and ovarian health); and prophylactic options (which would reduce my risk down to a below 1%-2% residual risk); we decided that for my age and current life circumstances, that ongoing surveillance was the best option for me, and prophylactic options could be visited at a later time.

I spent ten years undergoing breast MRI’s, ultrasounds, mammograms, and transvaginal. Early on, I encountered medical personnel who said, “You are too young for these preventive services,” and advised me to “Come back at the age of 40.” I realized that those individuals were not educated on my mutation or risk, and they were not used to seeing women in their 20’s being screened for a disease that usually develops in older women. We are no longer in those times. This disease can impact anyone as early as 20 (and younger). Waiting was out of the question for me. Being high-risk, I wanted to be proactive and not reactive. 

Over the next ten years, God blessed me with a husband and a beautiful daughter. I went from just thinking about me to thinking about us. I was physically exhausted and mentally drained from the on-going screenings, and I still felt scared every time the phone rang, or I was called in to hear my results. I could not keep living like this and I had to make a tough call. Besides, I knew what it was like not having a mother, and I refused to allow history to repeat itself. I had a family to consider. What would my legacy say about me? Although cancer took my past, I would not let it take my future. I had a legacy to protect. 

New Game Plan

After knowing my options as a healthy undiagnosed woman, I began to think about a prophylactic procedure. An oophorectomy was not an option since my husband and I wanted to have more children. I had the honor and privilege to breastfeed our first baby, and it was a joy and bond like no other. I knew that having a baby and breastfeeding was not only a good thing for my daughter, but a good thing for my breast health, but it wasn’t enough. I breastfed my baby for four months and had some milk stored up to provide her for 5 ½ months. During my first year as a mother, I began to pray and have conversations with my husband about my breast health. My screenings had temporarily been put on hold since I was pregnant and breastfeeding, but I knew it was time to pick up where I left off. I did not have time for all these appointments anymore, but that was not an excuse. The accountability was on me. I had seen my mother forget about her health, and I saw where that led her. So, that was not an option. I needed a new plan for my new normal. I had to pivot. 

When my daughter was 2, I decided to have a prophylactic bilateral mastectomy. Although the potential onset of disease was not supposed to occur until 40, this was the right time. I was between children, and I was young enough to bounce back. In December 2016, I underwent a bilateral prophylactic mastectomy and reconstruction the following March. This preventative procedure reduced my risk of developing breast cancer from 87% to a below 1 to 2% residual risk, and I would continue my annual transvaginal and CA-125 screenings to aggressively monitor my ovarian health.