Asante
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Asante was 41 and a just year out from breast feeding her young son when she was diagnosed with triple negative breast cancer that had spread to her lymph node. Asante’s mother died of breast cancer, so she had been vigilant about frequent screening. Dating back to college, Asante had discovered three lumps in her breasts, but all were non-cancerous fibroids addressed through lumpectomies. Since she was already in the habit of seeking care for her fibrocystic breasts, the cancerous lump was detected and diagnosed quickly. To this day, Asante feels frequent screening and early detection are what saved her life.
Asante is a strong self-advocate, so “sought out a lot of opinions” after being diagnosed with breast cancer. Once she found a doctor she trusted, she began treatment, starting with eight “grueling” rounds of chemotherapy. Asante attributes getting through chemotherapy to not stopping; her doctor told her there are “no benefits to laying around when you have breast cancer” so aside from resting when she was tired, she exercised the whole time, worked full time, and took care of her son and husband. Following chemotherapy, Asante had a complete mastectomy and elected to have a hysterectomy because she tested positive for a mutation on her RAD51D gene. Read more about Asante’s experience with inherited cancer risk here. Asante was then told she needed radiation, however stopped radiation early because it was clear her body “was not accepting” it when she “got sicker from the radiation” than from chemotherapy.
Prior to having cancer, Asante had large breasts that were central to her self-image and feeling about her own body, so it was a big deal when she decided not to have reconstruction after her mastectomy. Asante had a funeral for her breasts with her sister and still “misses them.” Through her cancer journey, Asante realized breast cancer “really takes away your beauty” as well as “your vanity and womanhood.” In addition to changes in her identity, the biggest thing to change was Asante’s lifestyle. She began exercising every day and joined a group of fellow breast cancer survivors called the “Surviveoars” – they row crew three times a week. Asante also adopted a new “radical diet” and feels healthier than she has ever been. Asante now feels “breast cancer saved my life” and describes herself as living 2.5 years (and counting!) “cancer-free.”
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 offer support to others. She 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.” It took Asante a while to find providers she trusted, and she believes in the importance of having an “amazing relationship” with your doctor. Asante wanted to share her story because “the black community” does not talk enough “when it comes to breast cancer” and the only way to “make real change” is to speak up, educate, and advocate for yourself. Asante learned the important of being a strong self-advocate through her breast cancer journey, especially as a black woman. She hopes her story will help encourage others to “listen to black women, please.” Asante wants other people to know that screening is “not prevention; it’s early detection” but early detection is empowering and is what saves lives; she believes it is what saved hers.
Asante has an incredible relationship with her provider and nurse navigator but described the importance of doing research to stay informed.
Asante has an incredible relationship with her provider and nurse navigator but described the importance of doing research to stay informed.
Like, I have my doctor's cell phone, for instance. You know, would I call him in the middle of the night? No, I would not do that. But, you know, if I needed something I could text. And I think that that's the new way of treating people now. Doctors are being more relatable and more reachable, and more down to Earth.
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I think 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.
Asante kept busy with many things.
Asante kept busy with many things.
How I got through chemotherapy, I exercised the whole time; I worked full time; I'm married, so I took care of my son and my husband. I didn't stop because one of the things that my doctor told me was there is no benefits to laying around when you have breast cancer. He told me to stay as active as I possibly could.
Asante chose a complete hysterectomy because she is at genetic risk of ovarian cancer and had uterine fibroids.
Asante chose a complete hysterectomy because she is at genetic risk of ovarian cancer and had uterine fibroids.
I decided to have a complete hysterectomy because I did the genetic testing, and while I did not have the gene for breast cancer, I did not have BRCA1 or BRCA2, and I was not HER2 positive. I did have a variant gene called RAD51D, which is the gene for ovarian cancer.
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I didn't want to have the hysterectomy. I was terrified to do it. You know, but I also failed to mention that I had a lot of issues there too. You know, that could've been a breeding ground for ovarian cancer. I had fibroids—heavy, heavy periods. I had periods sometimes where they would just go into one another, where they would just be like months and months of bleeding. Then I had polyps and cysts, and all kinds of problems. And so it-, you know, I felt like if it wasn't a fibroid, it was a fibroid.
Right. Right.
You know, I was like, "Oh. I'm good here, and then I'm not good there." So, the history of that definitely is what made my doctor say this is something that we have to do.
Yeah.
And so, that's why I decided to do that. And I don't, I have no regrets because like I said it was just-, it was too much. It was too much for one person to deal with and for some reason, African-American women also have fibroids. Heavy, heavy fibroids. Ovarian fibroids. So, that's why I decided to do that.
Asante's surgery lasted 13 hours and included both a complete mastectomy and hysterectomy.
Asante's surgery lasted 13 hours and included both a complete mastectomy and hysterectomy.
I talked to him and he said, "Asante, you know, the worst thing that I would want to happen is that you go through this breast cancer thing, and you come back in a year, and you have ovarian cancer." It's like, “I don't want that for you.” And it's funny because we planned this whole surgery with robotics and all this thing. It was a real high-tech surgery that he did. When I got to the room to actually get it, I did not want to do it. I was terrified. I was terrified of a 13-hour surgery where you were taking all my lady parts; my breasts, my ovaries, everything. And that's when he sat me down. He held my hand. He said, "I'm gonna give you some tough love right now, and I don't want you to come back in a year with ovarian cancer." He said, "I've seen it time and time again."
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The surgery was 13 hours. They did it both at the same time. The recovery was harder, I felt, than chemotherapy was.
Asante has good insurance, but her mother, who died of breast cancer, did not.
Asante has good insurance, but her mother, who died of breast cancer, did not.
You mentioned having really good insurance. Anything to add about that? You totally don't need to, but just opportunity if there was anything?
The difference between getting chemotherapy in the facility that you have insurance and the difference between giving it in the clinic.
Yeah.
That's life or death.
Yeah.
You know? And I do feel like if my mother had better health insurance, that she would be alive today.
With good communication, Asante is restoring her sexuality.
With good communication, Asante is restoring her sexuality.
I feel like my sexuality has changed. My sexuality has been compromised, and I'm just building back. Building back. I have very little desire because I don't have any lady parts. But I feel like there are other intimate things that you can do with your partner that have very little to do with sex, and I think what's really sexy to me is great communication. And I feel like we will get back to where we were it's just not now.
Asante carefully planned her schedule to balance work and treatment.
Asante carefully planned her schedule to balance work and treatment.
So, I would get chemotherapy on Thursday. I would go to work on Friday. I'd be down for the count on Saturday, I'd be okay. I'd be down for the count on Sunday and Monday, and then go back to work on Tuesday.
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So, then I would have time to like recover and build up. And then, you know, Thursday would come around again, this, the second week, and then the cycle would complete.
Asante wanted another child but breast cancer changed her perspective.
Asante wanted another child but breast cancer changed her perspective.
I wanted to have another baby so badly right after I had my son, and then breast cancer saved my life. And I say that breast cancer saved my life because when you are so focused on one thing, sometimes you need to take a step back, and realize that there is more life to live. And if God is giving you this one child, you should be happy with the one child that you have.
Asante says talk to people, do your research.
Asante says talk to people, do your research.
I think 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.
Asante cautions against giving advice.
Asante cautions against giving advice.
Don't contradict what their doctor says to them. You know, like if your doctor says you should have this type of chemotherapy, don't say, "Well, I heard that this person had this type of ..." No. Just listen. The best-, the best support you could give is the support that just by being there and listening, you know.
Yeah.
Because giving advice, even me, till this day, I have to tell myself, just listen. You know, because you can't give advice to someone who doesn't want to hear it, first of all. And your might-, your advice might not be the right advice.
Asante talks about how urgent it is for clinicians to listen to Black women.
Asante talks about how urgent it is for clinicians to listen to Black women.
Listen to black women, please. That's the biggest thing. Like, I feel like we are expected to be so strong and have such a high threshold for pain when it comes to the medical industry. And if we're complaining about something, I'd like them to listen and take action. And if you run a million tests and nothing comes back, then you've done your job. But don't shrug us off and say it's nothing.
Right.
Because that is how many of us are dying. So, not my doctor, specifically, but I know doctors out there who were not listening.
Exactly. Yeah.
And I think that is the key to-, that's one of the reasons why we don't have trust. We don't have faith in our medical system. You know, and I feel like sometimes, it's important to sometimes seek out someone who looks like you. You know, my surgeon looks like me. And that's important for me. You know, representation matters. So, if you have to seek out someone who looks like you, do it. You're your best advocate.
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Trust what I'm saying to you. Trust that, you know, if I'm coming to you, it took a lot for me to get here. And I need you to really take the time to listen to me.
Yeah.
And don't assume that, you know, I have a high threshold for pain because I'm African-American.
Right.
You know, and a female. You know, we're dying. We're dying of childbirth in 2019 because of that. We're dying of cardiac arrest in 2019 because of that. You know, and I know that breast cancer is no different, because I know that people, women, black women have been shrugged off and said, it's a fibroid, or this or that, and we didn't follow up because we trusted what you said.
Asante says it is up to African Americans to “break the silence” about inherited breast cancer in their communities.
Asante says it is up to African Americans to “break the silence” about inherited breast cancer in their communities.
Well, I think that it's up to us, as African-Americans to educate ourselves and our community, and to break the silence. Breaking the silence on incurable or curable diseases is so important. 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 was some 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. Black people do not trust the medical community. And I feel like they have a really good reason not to. Agreed. You know? And I think that until that changes, 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 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.