Every October we celebrate Breast Cancer Awareness Month not only to honor survivors and fighters and raise money for the cure but to educate communities on how they can make their health a priority. At CEOMOM we want to tell the stories of women on the front line of the fight against breast cancer after October. We are excited to present our Beyond October series dedicated to spotlighting women who bring awareness and education throughout the year whether they are fighters or survivors.
Meet Kisha Carson, a breast cancer survivor who is using her survival story to educate women of color about Triple Negative Breast Cancer through her non-profit organization, Triple Negative Won’t Win.
Tell us the story of your diagnosis. At what age were you diagnosed? What made you go to the doctor? What type and stage of breast cancer did you have?
In June of 2015, I went to my doctor about a knot under my arm that appeared to be about the size of a dime. I was 37 years old at the time. My doctor asked me if I had had dental work. He told me that I had an infection in my mouth and then he gave me antibiotics. I didn’t understand what a knot under my arm had to do with my teeth. In my heart and gut I felt like it had to be something else however I said nothing because I felt my doctor knew what he was talking about. I got my medicine and went home.
I monitored the knot and noticed it had disappeared. I would check for it periodically and about 2 weeks later I discovered that the knot had come back and it was then the size of a plum. I went back to the doctor upset and insisted that he do a mammogram. He apologized and sent me over for a mammogram. Before he sent me over he had me do a Myriad Test. With this test you spit into a tube and it checks to see if you are at risk for any type of cancer. I also did a BRACA1 Test. This test was also to check for cancer and used a swab instead of a tube. I had to wait a week to get the results for both tests. In the meantime, I had two mammograms and both came back negative. I couldn’t rest with that so I asked my doctor to do a biopsy. Later, The Myriad Test came back and I was positive for having breast cancer by the age of 40 and ovarian cancer by the age of 80. The BRACA1 Test came back negative. The doctors did a biopsy and found carcinoma.
I wanted to believe it was wrong because one test said one thing and the other said another. But I felt like something wasn’t right. At that moment my whole life changed. The crazy part was the doctor had no idea where the cancer was located. He told me he had to send me to a oncologist. The oncologist didn’t know where the cancer was either so he suggested that I start chemotherapy immediately. I asked if I had any other options and he responded, “No.” He told me that I had Triple Negative Breast Cancer. He said that this cancer is very aggressive and from his 20 years as an oncologist he was almost certain that the cancer was in the breast area due to the lump under my arm. He told me that I needed to do 8 sessions of chemotherapy. He said the chemotherapy would pull the cancer out and he would be able to determine the stage and my next step. He also said that if the cancer was shown in another place that we would have to stop treatments and start the correct treatments for whatever cancer it was. After 4 sessions of chemotherapy the cancer showed up in my left breast. I was diagnosed with Stage 2b. The doctor decided to change my sessions from 8 to 6 and he said I would have to have surgery. I did my sessions and then I had a mastectomy. After that I had to do 30 radiation treatments which burned me tremendously. I was weak and felt really fatigued.
What is triple-negative breast cancer? What makes it different from other types of breast cancer?
Triple Negative is an advanced breast cancer. Triple Negative Breast Cancer means that the offending tumor is estrogen receptor (ER), progesterone receptor (PR), HER2- negative. On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other sub-types of breast cancer.
Triple-negative breast cancer most commonly affects African-American women, followed by Hispanic women. Asian women and non-Hispanic white women are less likely to develop this type of cancer. A study found that black women were 3 times more likely to develop triple-negative breast cancer than white women.
It also attacks women 40 and under. Normally when you have a history of cancer in your family this is where TNBC steps in.
Triple-negative breast cancer is more likely to occur before age 40 or 50, versus age 60 or older, which is more typical for other breast cancer types.
When people with an inherited BRCA1 mutation develop breast cancer, especially before age 50, it is usually found to be triple-negative.
Walk us through the heart of your fight. What were your immediate feelings, thoughts and fears?
Being diagnosed with such a harsh disease was mind boggling. I started to think about the worse things that could possibly happen. I felt like my life was over. The thought of death kept running across my mind. I started to think about how my children’s lives would be without me. Who would take care of them and where would they go? I wanted to do everything with them so they could have more good memories. I remember oversleeping on my daughter’s first day of school. I became so angry with my husband because he took her to school and didn’t wake me. I felt less than a mother. I took my children to Disneyland just to see them smile even though I didn’t feel well. But while I was there I began thinking about how young I was and how there were so many things I had not done or experienced. I was worried about the chemotherapy making matters worse for me. I thought about losing my hair and if my husband would think I was attractive anymore or if he would leave me. I started thinking about burial expenses and how much of a burden I would be on my family or leave on my family. I felt alone. I became very depressed. I lost weight and I didn’t know what to do. I didn’t want to talk to or see anybody.
Triple-negative breast cancer most commonly affects African-American women, followed by Hispanic women.
Describe the impact on your family, specifically your children. How did they help you fight?
At the time it was just my husband and my 3 younger children. My children started to see my hair fall out and I could tell my eight year old was worried. My five year old daughter came in my room and asked, “Mom, are you okay?” I could see in her eyes that she was worried. This made me feel horrible. I sat up and told my daughter that I was fine. She began telling me about a dance class that she wanted to attend. Not long after that my four year old son came in the room. He started asking for something to drink. I smiled because I realized that this is the reason I had to live. I got out of bed, the kids and I went into the kitchen and I started preparing dinner. As tired as I was from the chemotherapy, I put some gospel music on and began cleaning my home. Once dinner was done my children, my husband and I sat down for dinner. It seemed as if it was the best dinner and time spent with the family I had ever had. I heard so many good stories and laughed so hard that I didn’t want that night to be over. As I put the kids to bed later that night I took my shower and prayed. I decided to let go and let God deal with it. At that point I began to believe that I could fight, that I could win this battle and be able to live a long prosperous life. Everything that had been foggy and confusing became so clear to me. Looking at my children lifted my spirits and I knew that they needed me. With that I decided to live. I decided to enjoy the possibilities of my life. I wanted to continue to be a loving wife, a wonderful mother and a good friend. Then I saw hope, I saw love, I saw faith and I wanted it all to be a part of my life. It was time to get rid of this disease and do everything I could to keep it from coming back. Triple Negative had to go.
Where are you now in your fight against breast cancer?
It’s been three years since I found out about the cancer and 19 months since the mastectomy. I have made the three year mark of surviving Triple Negative Breast Cancer and I’m looking forward to making it to the five year breast cancer mark of survival. I am in such a good place. I know I will survive this. I know I have beat cancer’s butt. I am stronger than I have ever been. I have a supporting family and friends and I enjoy being a breast cancer advocate. I started a dance group called TNWW Girls that consists of eight girls doing dance routines for the community to get them to come and hear me speak about TNBC. They also dance for cancer patients to lift their spirits. I continue to reach out to businesses and other people to help me with my movement and to put the word out about TNBC. I changed my way of eating and I use dancing as my exercise. I spend a lot of time with my children and allow them to help me with my non profit Triple Negative Won’t Win. I now have shirts, hats and backpacks. I’m in the process of getting scrubs. I had an MRI, Cat scan and Pet scan and all tests came back negative. As of November 2018, I am still healed and a winner. I am confident and believe that I will continue to be a winner. I continue to help others and I stay connected to God. Without him I would not be here today.
Tell us about your organization, Triple Negative Won’t Win. What do you do and who do you serve?
TNWW provides assistance for cancer patients and their families during and after treatments. We help with clothing, food and utilities. With many years of experience in personal hair care we also provide emotional support to those who suffer from hair loss by providing wigs and other cosmetic needs. We aim to help the client look and feel better with things such as body lotion, body soap and makeovers. (TNWW) provides workshops with educational pamphlets about breast cancer and cervical cancer. We encourage more frequent screenings which help with early detection.
What specific moment or event in your fight inspired you to start Triple Negative Won’t Win?
I thought about all the things that I can do to make the community more aware of this particular cancer. Everyone knows about cancer however some are not aware of the names of the cancers or how some cancers affect you, or what specific groups they attack. With me knowing that, I wanted everyone else to be educated about it as well. I survived it and I want others to know what they can do to possibly beat this particular cancer and to know what signs to look for.
What plans do you have for the organization in 2019?
In 2019, TNWW plans to assist women with free mammograms and exams. We will also be able to provide a licensed counselor or psychologist to facilitate groups on topics such as Dealing with Cancer, Living Life After Cancer, Coping Skills, Husband and Wife Counseling and much more. In addition, we plan on providing clients with more financial assistance. To help our clients and their families, please visit us at http://triplenegativewontwin.com and donate to our organization. You can also contact us at 909-733-3951 to join the movement by raising money or volunteering your time.
What words of wisdom and encouragement would you give to someone who has been newly diagnosed?
Stay positive. Get a well grounded support group. Let others be there for you. Speak positivity over your life. Believe, have faith and keep hope. Don’t allow anything or anyone to take away your joy. When in doubt start praying until you feel relieved of those thoughts. Fight. You fight until you have won the battle. Don’t give up. Do what you’ve never done before and have no regrets. Apologize for your wrongs and if your apology is not accepted keep moving and let God deal with it. But most of all, Live Your Best Life. I want to leave you with 3 things.
1. Get checked regularly:
Our bodies will tell us when something is wrong. The body will always give you a sign. A headache, backache or soar throat can be many things. It can be something as simple as what it appears to be or it could be a sign of something life threatening. Regular check-ups such as exams and tests are important because they can help find problems before they start. Why wait to find out?
2. Eating healthy and exercise
Good eating habits and exercise are the keys to living a healthy lifestyle. Regular exercise and the consumption of healthy foods can lead to happiness, good health and a long life. This can be hard, however we must practice mind over matter. When you set your mind to not do something, you won’t do it. Eating healthy is not about strict dietary limitations, staying unrealistically thin or depriving yourself of the foods you love. You don’t have to adopt an extreme fitness routine, however eating healthy and exercising will have you feeling and looking great, give you more energy and improve your health.
3. Have a spiritual connection
We must have a relationship with God. In order to believe and have faith you have to know who God is. When you walk by faith, anything is possible. Our spirit has a soul that lives in our bodies. Our minds and emotions connect with the spirit and the body. When you are closely united with your heavenly Father all the power of heaven is at your disposal. If you don’t have a relationship with the higher power, now is the time to start one.