Desiree

Age at interview: 56
Outline:

Desiree, a 56-year-old African American woman, was diagnosed with breast cancer at age 38, and had a recurrence 8 years later. Testing was not able to 100% rule out a genetic link, and there is some family history of concern. Desiree has used her illness experience to find a strong public voice, work to address health disparities, and deepen her spiritual practices.

Background:

Desiree, age 56, is a breast cancer advocate. She lives in the East with her son.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Family history of cancer

See full story

Desiree first learned she had breast cancer at age 38 because she took advantage of on-site mammograms offered at her job. She had a lumpectomy, and then a second surgery soon after because the first one didn’t result in getting all the unhealthy tissue. She had radiation therapy and also began hormonal therapy because her tumor was positive for both estrogen and progesterone. She had school-age children at the time, and struggled to balance work, family, some illness-related depression, and her breast cancer diagnosis. Before long she realized she needed to “change the narrative,” by getting both her mind and her body as healthy as possible. She also decided to take the breast cancer experience “to the next level” by talking about it in the African American community, where “we don’t really like to talk about cancer because there’s still a stigma surrounding it.”

Desiree found her second lump eight years after her first cancer, following a “spiritual encounter” encouraging her to check her breast. Her surgeon was responsive when Desiree insisted on immediate action, and a few days later she had a confirmatory biopsy. Soon after she had a bilateral mastectomy, and the reconstruction her clinical team had encouraged her to consider prior to the surgery. Recovery from surgery was complicated, as was finding clinicians who would accommodate her desire to blend Western and Eastern approaches as she healed.

Other “life-altering experiences,” such as separating from her spouse and losing her job, also occurred at the same time, so it was a challenging period. Coming out of it, Desiree found she had to “advocate for myself more than I should with the health care system” because she didn’t want to “just sit on the sidelines and be discarded or disregarded” rather than having “what I need so that I could have the quality of life that I want.” Equally important has been her advocacy for others, and her work to address disparities as they relate to health and cancer.

Having cancer made Desiree reflect on people in the older generation in her family who also had breast cancer. Her diagnosis also led to conversations with her dad, though he can be “a man of few words,” on the topic of cancers on his side of the family. Unfortunately, when she had genetic testing done, her insurance wasn’t very good and the full panel wasn’t completed. The results she got were “inconclusive… that it leaned toward not having BRCA, but they couldn’t be 100% sure.”

Desiree’s diagnosis created a “heightened connection” to spirituality, and caused her to “be on a faith journey.” It also taught her how to “get a little selfish, and get a little protective” by setting limits, saying “no” to some of what is asked of her, and limiting her contact with people who make self-care harder instead of easier. She encourages family and friends to “understand there's a whole lot that is not meeting your eye” when you look at people with cancer. And she asks that clinicians do their best to learn how to “make a quick read with your patients, to understand who’s touchy-feely, who’s stoic, etc.” and communicate with each person in an individualized way. Finally, she gives credit to her diagnosis for helping her “step out of my comfort zone,” to talk publicly about cancer and share her story and learning with others.

 

 

Desiree is grateful that her doctor takes her seriously when she raises a concern.

Desiree is grateful that her doctor takes her seriously when she raises a concern.

SHOW TEXT VERSION
PRINT TRANSCRIPT

And I was doing well. I followed up with the guidelines. And so I went, and I had my screenings. And I had my doctor’s appointments. And I was doing well. And then I like to say that I had a spiritual encounter. One morning, I got up, and I went to the bathroom, like most people do upon rising. And I heard a voice tell me to check my breast. And so I started looking around and saying, “OK, I was not out the night before. I wasn't drinking. I don't take drugs. And so where is this person? Because the voice is pretty loud and pretty clear.” And that's when I realized, you know, oftentimes we do hear people say that they've had spiritual encounters. And I presume that was what that was. And that's why I've classified it as such. And so I said, “OK, let me prepare to do a breast self-exam, because that's the only way I know how to check my breast.” And as I prepared to disrobe in front of the mirror to do the exam, I noticed a lump. And I did not see that lump the night before. And I was just like, “Wow, that's interesting.” 
--- 
And I knew that I would hear from my surgeon on Monday. And so Monday morning she calls me. And she says, “Desiree, what's going on?” And I said, “Well,” and I proceed to tell her the story in terms of the voice. And she said, “Oh.” She said, “you know, it's been eight years.” I said, “I'm well aware.” She said, “And you just had a mammogram six months ago, and it was negative.” I said, “I'm aware.” And she said, “I really don't think that it's cancer.” I said, “Hopefully, you're right.” I said, “But I really don't think God would have come at that hour of the morning to tell me to check my breasts if there was no action needed.” And so she said, “That's fair.” She said, “So, you know, Monday is my surgery day. I'm about to go into surgery, but I wanted to call you before I got started. So what I think you should do is come first thing tomorrow morning, and let me see you before I start my day. So try to have a good day, and I'll see you tomorrow.” 

 

Desiree describes the natural progression from helping herself to helping others.

Desiree describes the natural progression from helping herself to helping others.

SHOW TEXT VERSION
PRINT TRANSCRIPT

And so I then became aware that there are really a lot more health disparities than people really focus on. And there's just so much work that needs to be done as it relates to health, as it relates to cancer, as it relates to people that are medically underserved, underrepresented, et cetera. And so I continue to try to educate myself so that I'm able to educate others about the disease, and try to be informed, and try to be empowered, and try to have a voice because, unfortunately, I have found that I have had to advocate for myself more than I should with the health care system. But not wanting to just sit on the sidelines and be discarded or disregarded, I've just fought to make sure that I'm getting what I need so that I could have the quality of life that I want for myself, but also to help me to be able to advocate for others, whether it be family or just encourage other people on how to advocate for themselves has really been the, one of the biggest outcomes of my journey.

 

Desiree’s testing for BRCA left her with inconclusive results.

Desiree’s testing for BRCA left her with inconclusive results.

SHOW TEXT VERSION
PRINT TRANSCRIPT

Although I did have genetic testing done, unfortunately, when I had the testing done, I didn't have great insurance. And so they did not agree to do the full panel of genetic testing. And so they kind of gave me a inconclusive, that it leaned towards not having BRCA, but they couldn't be 100% sure. And it is something that I do think about, now that we've moved so far in the genetic testing world, and that the cost has come down, et cetera, that I will revisit that in the future. So at this particular time, I don't know. I am saying I am not BRCA-positive. But I can't say definitively, just because of the test that I did have.

 

Desiree emphasizes that health disparities mean under-represented people may not get the care they need.

Desiree emphasizes that health disparities mean under-represented people may not get the care they need.

SHOW TEXT VERSION
PRINT TRANSCRIPT

I, you know, also had the financial toxicities that can come from a cancer diagnosis as well. And so, so much of my life changed as a result of the second diagnosis for the better. But also, I would say that it definitely was not a cakewalk under any stretch of the imagination. And so I then became aware that there are really a lot more health disparities than people really focus on, or... And there's just so much work that needs to be done as it relates to health, as it relates to cancer, as it relates to people that are medically underserved, underrepresented, et cetera. And so I continue to try to educate myself so that I'm able to educate others about the disease, and try to be informed, and try to be empowered, and try to have a voice because, unfortunately, I have fo-, I have found that I have had to advocate for myself more than I should with the health care system. But not wanting to just sit on the sidelines and be discarded or disregarded, I've just fought to make sure that I'm getting what I need so that I could have the quality of life that I want for myself, but also to help me to be able to advocate for others, whether it be family or just encourage other people on how to advocate for themselves has really been the, one of the biggest outcomes of my journey. 

 

Desiree says it's important to connect with others who have walked your journey.

Desiree says it's important to connect with others who have walked your journey.

SHOW TEXT VERSION
PRINT TRANSCRIPT

And so, one of the reasons why I started facilitating support groups was to provide a space for people to be able to come together, and connect, and really talk about and learn that, OK, if you're six months, then this is what potentially may come at a year. It doesn't have to be, but these are some of the things that can happen, just to be able to manage people's expectations, because oftentimes, we have no idea what's around the corner. And when things happen, even though it may be the course of survivorship, because we didn't anticipate it, it could freak us out. And if you don’t, if you tell your family, they're like, oh, you'll be fine. You look good. And they're quite dismissive. But if you're with people who have been on the journey, they could say, oh, yeah, you kind of go through this at this point. But it passes. Can't really always say that it will pass for you as quickly as it passed for me, but know that it will, and give you time points and give you more insight in terms of how the journey could be, what the road could be, with its twists, its turns, and its winding. So I think that, you know, getting support is important. 

 

Desiree, noting the non-visual manifestations of chemotherapy, emphasizes the need to be a good listener of words and of body language.

Desiree, noting the non-visual manifestations of chemotherapy, emphasizes the need to be a good listener of words and of body language.

SHOW TEXT VERSION
PRINT TRANSCRIPT

Well, one of the things that I often, I have talked about is we tend to be visual people. And we make a lot of assumptions about how one is doing based on what we see. And although cancer treatment can have an outwardly impact, i.e., loss of hair, you know, loss of eyebrows, the truth of the matter is there are certain chemotherapies that you don't lose your hair. And so with that, that would be a totally different look.  

…  

And so I just always encourage individuals who are newly diagnosed or someone who said, oh, a friend or family member has been newly diagnosed. I always encourage people, don't just look at them outwardly. Understand there's a whole lot that is not meeting your eye. And so this is where you now need to be a good listener. You need to be able, and if you know a person, their body language can often tell, even if they're not articulating it"