Asante

Age at interview: 44
Outline:

Asante, age 44, was diagnosed with breast cancer when she was 41 years old. Shortly after her diagnosis, Asante tested positive for a mutation on her RAD51D gene, which carries risk for ovarian cancer. Because of her mutation and family cancer history, Asante elected to have a complete mastectomy and hysterectomy. Since her treatment, Asante has been “cancer-free,” works out every day, and is living happily in a large urban city in the East with her husband and son.

Background:

Asante is a 44-year old African American woman who lives in a suburban area in the East with her son and husband. She works as an administrator and a basketball coach.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Identified breast cancer mutation

 

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Asante was 41 when she was diagnosed with triple negative breast cancer that had spread to her lymph node. Since her mother died of breast cancer, Asante had long been aware of her own risk and vigilant about screening and breast self-exams. Asante had discovered several lumps in her breasts before, dating back to college, but all had been fibroids addressed through lumpectomies. Since she was already in the habit of seeking care for suspicious changes in her breasts, the lump which turned out to be cancer was diagnosed quickly. To this day, Asante feels early detection is what saved her life.

Asante initially kept news of her diagnosis within a “small circle” of family and friends, but once she opened up more about her breast cancer she felt “empowered.” Asante “sought out a lot of opinions” and treatment, and started with eight “grueling” rounds of chemotherapy. During this time, Asante’s nurse navigator recommended genetic testing, which came back positive for a mutation on her RAD51D gene. Asante was frightened to learn this put her at increased risk for ovarian cancer, but knowledge of this risk helped her decide to opt for a hysterectomy while under anesthesia for her mastectomy. Following her 13-hour surgery, Asante started radiation. However, she “got sicker from the radiation” than from chemotherapy, so stopped it early. To balance living day to day and facing her disease, Asante took minimally harsh drugs, which allowed her to work full time, exercise, and take care of her son.

Asante had not heard of genetic testing before she went through it and now believes “it’s important that everybody do it” because it forced her to ask questions she had not previously raised about her own family history. When she sat down with her father to discuss her genetic results, it was like “a light bulb went off in his head.” Aside from breaking “the silence” with her family around cancer, the biggest thing to change was Asante’s lifestyle. She adopted a new “radical diet” as well as increased exercise – Asante rows crew every morning before work, with a group of fellow breast cancer survivors called the “survivoars.” Asante is currently the healthiest she has “ever been” and now feels that “breast cancer saved my life.” In addition to lifestyle changes, the support Asante has felt from her husband, family, church family, God, other survivors, clinicians, and counselors was “amazing” and has inspired her now to do the same from others. Asante is a “2.5-year survivor” who describes herself as “cancer-free.”

Asante didn’t understand the importance of self-advocacy until she herself got breast cancer. She remembers it was near-impossible to get her team of doctors all together, so taking notes and “bringing those notes back to each doctor” was critical. Asante believes in the importance of having an “amazing relationship” with your doctor and wants people to know if they go to a doctor and get that “uh-oh feeling,” then “walk out the door” and find someone you are “comfortable with.” Asante wanted to share her story because in her opinion “the black community” does not talk enough “when it comes to breast cancer” and that fear of talking has to be “eradicated.” In addition, Asante hopes her story will help encourage others to “listen to black women, please.” Generally speaking, Asante wants other people to know that your screening is “not prevention; it’s early detection” – but early detection is empowering and is what saves lives.

 

 

Asante’s mother’s early death from breast cancer had a big impact on how her own diagnosis felt.

Asante’s mother’s early death from breast cancer had a big impact on how her own diagnosis felt.

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And when, you know, when I found out that I was diagnosed, there was a piece of me saying “oh, my goodness. I'm going to die.” And then in the back of my mind, I said “oh, no. You're not going to die. You're going to survive for your mom. I'm going to do it for her, and I'm going to be healthy, and I'm going to stay healthy for her.”
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I tried to map out a plan for her the best that I could. And ultimately, it just didn't work. And she didn't want to continue her treatment because she said if it didn't work the first time, why am I going to do it again? And I, we all respected that. And it was hard watching that. You know? And my brother was little. And so I thought history is repeating itself. Like, I have this beautiful baby that I waited for so long, and I'm now going to die? And so I said, “no. No, I'm not going to die. I'm going to live each life to the fullest. And I'm going to get my affairs in order.” And I feel like as much as people think that they have their affairs in order, until you think you're going to die, you have no idea what it really means to get your affairs in order.

 

Asante notes that distrust is a barrier to having genetic testing for many in the African American community.

Asante notes that distrust is a barrier to having genetic testing for many in the African American community.

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But you have to understand that we have a systematic history of distrust that is not going to get broken overnight. It's not. And I wish that there with some simple, simple plug that I could put on it, or a Band-Aid that could put on it to say, oh, it's going to get better. I don't see it getting better. People, black people do not trust the medical community. And I feel like they have really good reason not to.
Agreed.
You know? And I think that until that changes, until that, until we can advocate for ourselves in a real way that's going to make real change-- I can talk until I'm blue in the face to tell my dad to get genetic testing, and he is not going to do it. You know, he comes from an area where, you know, horrible things happened. And so I think that's where we're at. But I think it takes us, the younger generation, to, you know, try and advocate and be advocates. To say, you know, there are few, a few doctors that you can trust. You know, there are a few. But the best thing you can do is be your own, know your body. Talk to each other. You don't have to go to the genetic testing person, but we can talk to each other. You can know how your great grandmother died by asking your grandmother. You can know how your aunt died by asking people. Talk to each other.

 

Asante notes that genetic counseling may encourage family conversations about health history.

Asante notes that genetic counseling may encourage family conversations about health history.

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So I said “Dad, you have to tell me. You have to tell me, you know, what did your mom have? What did your dad have? Were there, you know, did you even have, is there any diabetes in your family? Is there anything in your family that I should know about?” Because I have this little boy, you know, who, who needs me. And, and for him, I need to know, you know. I feel like knowing that you have a history of diseases in your family, it might not prevent it because it's genetic, but you can definitely make healthy lifestyle choices.
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After I got the genetic testing, I discovered there is a lot of cancer in my family. My grandmother died of some type of cancer. You know, everyone says it was lung cancer, but we really don't know because we didn't talk. No one talked about it. I didn't know that my grandmother had passed away of cancer until very late in life, through talking to aunts. And my mother was the only child, so the information that she had kind of left with her. And then my father. On my father's side, my paternal grandmother had ovarian cancer. So when I told him about that RAD51D, he-- a light bulb went off in his head to let me know that, you know, in fact, my grandmother had ovarian cancer. And they passed away before I was born, so I never met them.

 

Asante didn’t realize that she might get breast cancer even while doing frequent screening.

Asante didn’t realize that she might get breast cancer even while doing frequent screening.

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And I really, honestly, naively thought that being up on my screening would prevent me somehow from getting breast cancer. And I think that's the missing piece. That's the piece that was missing for me. I said, oh, I go every six months. These people won't let me go. You know, and I would even make jokes about it. I would say, they're so on top of me. They're always on top of my breasts. Like, I even made jokes about it. And so I feel like people need to understand that even though you do go for your screenings every six months, it’s the finding it in-between. So if you didn't go six months and you waited a year, your breast cancer, if you did get breast cancer, would be far less treatable than it would if you found it when it was small.

Yeah that's one thing I want to make clear to people, is that, you know, your screening is not, it’s not prevention. It's early detection.

 

Asante explains her realization that a mammogram can’t prevent breast cancer; it can only promote early detection.

Asante explains her realization that a mammogram can’t prevent breast cancer; it can only promote early detection.

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And I really, honestly, naively thought that being up on my screening would prevent me somehow from getting breast cancer. And I think that's the missing piece. That's the piece that was missing for me. I said, oh, I go every six months. These people won't let me go. You know, and I would even make jokes about it. I would say, they're so on top of me. They're always on top of my breasts. Like, I even made jokes about it. And so I feel like people need to understand that even though you do go for your screenings every six months, it’s the finding it in-between. So if you didn't go six months and you waited a year, your breast cancer, if you did get breast cancer, would be far less treatable than it would if you found it when it was small.

Yeah that's one thing I want to make clear to people, is that, you know, your screening is not, it’s not prevention. It's early detection.

 

Asante experiences her decision to have a mastectomy as empowering.

Asante experiences her decision to have a mastectomy as empowering.

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And then with the surgery, I was so tired of lumpectomy after lumpectomy. I just was like, three is enough. You know, and checking, and this, and I just didn't want that. And, you know, breast cancer can come back somewhere else. I'm rebuking it. It's not going to come back to me. But I just wanted to have, I wanted to take control. I didn't want them to control me. I had very fibrocystic breasts. They were big, they were heavy.

 

Asante describes needing a doctor who could talk with her about terrifying news while sitting beside her instead of across a desk in a white coat.

Asante describes needing a doctor who could talk with her about terrifying news while sitting beside her instead of across a desk in a white coat.

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If you go to a doctor and you get that uh-oh feeling, walk out the door. Just do an about-face and walk out the door and find somebody who you are going to feel most comfortable with. Because you are going to be with that doctor for the rest of your life. And I am with my doctor for the rest of my life. And we have an amazing relationship. You know, a friendship, I feel. And when he was honored, I had to be there. And I'm sure he has a lot of patients that feel that way about him, but I just can't speak highly enough. Because for me, I did not want the doctor in a white coat sitting behind a desk telling me this terrifying news. I needed somebody who was going to sit beside me. And he sat beside me, and he used choice words that I won't say on camera. He was able to drop a couple bombs. And so I felt most comfortable with him. And so that's why I stayed with him.

 

Asante finds conversations difficult, in part because she worries her family members won’t think their own genetic testing will be affordable.

Asante finds conversations difficult, in part because she worries her family members won’t think their own genetic testing will be affordable.

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So when I was diagnosed in 2016, it was a huge shock to my family. They were scared. They were unaware of the new technology.
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Yeah. Were those conversations hard for you to initiate?
 It was difficult, because I didn't want them to think that just because I got cancer, you're going to get cancer now.
Right.
You know? And that was the biggest thing. So it was-- I had to strike a balance on how to have that conversation. You know, one of it was-- the woman at the local hospital, I’ll, you know, I had told them her name. And I said, you know, in fact, she said that you don't even have to go through the hospital. They have a laboratory that is so much cheaper. So I use the it's not expensive tactic.
Right.
 Because everybody thinks oh, if I have to get this genetic testing and my insurance doesn't cover it because most times insurance don't cover these things. So I went at it from this is a laboratory that you can get the testing back in six to eight weeks. And it's affordable, so you should do it.

 

Asante is trying to understand patterns of illness in her family by talking with her dad and studying her family tree.

Asante is trying to understand patterns of illness in her family by talking with her dad and studying her family tree.

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So I said “Dad, you have to tell me. You have to tell me, you know, what did your mom have? What did your dad have? Were there, you know, did you even have, is there any diabetes in your family? Is there anything in your family that I should know about?” Because I have this little boy, you know, who needs me. And for him, I need to know. I feel like knowing that you have a history of diseases in your family, it might not prevent it because it's genetic, but you can definitely make healthy lifestyle choices.
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I can talk until I'm blue in the face to tell my dad to get genetic testing, and he is not going to do it.
You know, he comes from an area where, you know, horrible things happened. And so I think that's where we're at. But I think it takes us, the younger generation, to try and advocate and be advocates. To say, you know, there are a few doctors that you can trust. You know, there are a few. But the best thing you can do is be your own-- know your body. Talk to each other. You don't have to go to the genetic testing person, but we can talk to each other. You can know how your great grandmother died by asking your grandmother. You can know how your aunt died by asking people. Talk to each other. I'm very fortunate in my family that my cousin put together a family tree that goes back generations. But we never talked about health. We just talked about where we came from and how that worked. So if I look at that family tree and I try to go back to see how these people died, that’s a huge task on me. But that's something that I owe my son. You know, so I'll add that to my list of many thousand things that I need to do.

 

Asante’s breast cancer spread to her lymph node while she was pregnant.

Asante’s breast cancer spread to her lymph node while she was pregnant.

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You know, in 2016, I was diagnosed with breast cancer. And it had traveled to my lymph node. Which was upsetting, because I did, you know, I couldn't do the physical screening because I had a baby. I was cooking a baby inside of me. And so that little sneaky bugger got in there somehow when I-- from the time that I was pregnant to the time that I gave birth to my son. And, you know, it could have-- we could all say that it could've been the hormones. You know, the extra hormones that you have when you're, when you’re pregnant.

 

Asante stresses the importance of finding the right people for support.

Asante stresses the importance of finding the right people for support.

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And I traveled far and wide to find the right people who were going to be there for me. And my family, I can't say enough about my family and my church family. You know, they, they supported me.

 

Asante says being informed is part of the patient’s job.

Asante says being informed is part of the patient’s job.

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I think, you know, as a patient, you have to do your research, too. You have to be informed so that when you do go to the doctor and they're telling you something that you don't understand, you have to do your own homework.
Yeah.
It's as much their job as it is your job to be informed and to educate yourself. And I think the only way you can do that is not by Google searches, because that will terrify you. I've done that. I've been there. But just really talking to people in the industry. Talking to survivors. You know, talking to nurses. Nurses definitely know their stuff, especially oncology nurses. And if you have a nurse navigator, I don't know if a lot of hospitals have a navigator. A person who-- a point person who is going to lay out all of your treatment. But really, talking to each other about it, is-- I felt that that's been the most helpful in seeking out people and seeking out organizations that are on your side, on your team.

 

Post-cancer, Asante has a mission that links her past and her future.

Post-cancer, Asante has a mission that links her past and her future.

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My purpose now is to educate myself first on the science of breast cancer in black women, women of color, and give back in any way that I can. In 2004, when my mother passed away, I wanted to do something so badly, but I didn't have the courage. And I was scared. And I didn't understand. And I was mad. Frankly, I was just really upset. And now, I want so badly to start something. And I have something in the works that I think is going to be great.

 

Asante notes that doing a breast self-exam can lead to early detection, but also warns that screening identifies rather than prevents breast cancer.

Asante notes that doing a breast self-exam can lead to early detection, but also warns that screening identifies rather than prevents breast cancer.

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I just want to spread the message that, you know, early-- I felt strongly that early detection is what saved my life. Because knowing my risk and knowing how to do self-breast examinations, I found my lump myself. And I immediately went to my doctor, and they immediately took action. There was no second guessing. You know, the only second guessing was me seeking out other opinions. And so I just really feel strongly that early detection is what saved my life through, through this cancer battle.

Yeah that’s one thing I want to make clear to people, is that, you know, your screening is not, it’s not prevention. It's early detection.