Lisa J.

Age at interview: 54
Outline:

Lisa J, age 54, was diagnosed with ductal carcinoma in situ (DCIS) breast cancer at 51 when a lump was discovered in her breast. Her mother died from breast cancer when Lisa J was very young, and as a young adult she tested positive for a mutation on her one of her BRCA genes. To address her increased cancer risk, Lisa J had been on high-alert and getting frequent screenings. In addition to breast cancer, she has several other serious health issues which make both treatment and everyday life complex. Lisa J is an advocate for breast cancer survivors and active in many communities within her east coast community.

Background:

Lisa J. is a 54-year-old African American woman and long-time practicing Nichiren Shōshū Buddhist who is an ambassador for breast cancer advocacy work and lives in the East.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Identified breast cancer mutation

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Lisa J’s mother passed away from breast cancer when she was a child, so though she did not immediately make the “genetic connection,” for Lisa breast cancer was always “imprinted in my head.” When she was in her 20s, she had a benign cyst removed from one of her breasts, and this event made her think about the “possibility of breast cancer.” In her 30s, Lisa J started having regular mammograms and conversations with her clinician around her extensive family history with cancer and being at increased risk. When Lisa J was 36, she got genetic testing which revealed a BRCA gene mutation. This news was “just too surreal.” Lisa J responded by starting “hyper surveillance” which included an MRI, ultrasound, mammography, and a second screening every year. Her clinicians offered the option of a preventative full mastectomy and oophorectomy after her positive genetic test, but this felt “pretty severe” so she said “thank you, but no thank you.” However, the possibility of preventive surgery did bring breast cancer “to the forefront” of her mind.

In her early 50s Lisa J started having “a lot of different symptoms,” and was diagnosed with arthritis, lupus, and later fibromyalgia and thyroid nodules. At around the same time, she went in for her annual mammogram, and that’s when the breast cancer “story comes into full play again” because the exam revealed a lump. Lisa J had a biopsy and was diagnosed with ductal carcinoma in situ (DCIS) breast cancer. With her cancer diagnosis and lupus “running rampant” at the same time, her doctors were “all hands-on deck.” Aside from some poor bedside manner, she could not have had “a better team collaboration.” She had a partial mastectomy and lumpectomy, and with an immune system that “was shot from the lupus,” then experienced “nonstop infections,” which made this period of her life “an incredibly rough time” during which it was necessary to “rethink everything.”

Lisa J shared news of her cancer and co-conditions with just a very few “key people” and did not initially “talk about it otherwise” because “it was just overwhelming.” She had always had a support system, but told herself she was a strong, independent woman who should “just deal, and suck it up.” It was not until her second year of challenging health issues that Lisa J began opening up about her diagnoses. It took her a long time to feel comfortable dating after her health experiences because of changes in her body, but she is in a relationship now and feels her breast cancer and other conditions have forced her to “think about dating differently now after breast cancer” because “you can’t hide” the same way you might have done before. She has had to pull back from her regular job as a chef and take things more slowly since her multiple health issues arose.

Lisa J has been a life-long advocate with her food, community and tenant work. After experiencing breast cancer, she channeled her expertise to become a “survivor advocate” for a community of “ferocious fighters” including her “breast cancer sisters” as well as “men with breast cancer.” Lisa J advocates to this day that men and women alike need to go “get your breasts checked!” and currently acts as an ambassador for breast cancer survivors. She still experiences “scan anxiety” with “every checkup,” but continues with regular mammograms and MRIs. She often still feels like her “job is being a patient,” but this has gotten more manageable with time. Lisa J leans on her family, breast cancer support groups, and her “respectful” and trusted “home attendant” to help with some of her lingering health issues. Lisa J also finds great comfort in being a long-time Buddhist, which does not “fix” anything but helps her “manage it” and mediate on how it is that a “beautiful flower grows in like the sludgiest mud ever?” Lisa J advises other people with breast cancer to “advocate for yourself” and “take it step by step.”

 

Lisa J.’s doctor urges her to be tested.

Lisa J.’s doctor urges her to be tested.

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So we started having these conversations, and there was this, you know, test that came out, the BRCA gene test. So I was-- I'd gone back to school, and I was like, how can I afford this? She said, “well, you know, I'll just write a letter to the insurance that you have.” And they approved it, because of my mother's situation, you know, being that I was genetically predisposed to it.
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And they approved the genetic testing. So I was very fortunate…it was a matter of having a doctor having that foresight.

 

Lisa J.’s memories of her mother’s illness and death from breast cancer color her own experiences with the disease.

Lisa J.’s memories of her mother’s illness and death from breast cancer color her own experiences with the disease.

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I think it also maybe invoked, you know, memories of our mom. And really watching that as kids, you know, that's a trauma unto itself. I didn't even think it was traumatic until like I speak about it now or remember at times speaking about it, and there are certain times that, you're a kid, and you're watching your parent or, in this case, your mom, and I remember going into the hospital with her as a kid. I was a taller kid, and I could speak in a way that maybe gave me a few years. But I remember going up the back staircase. They didn't have the same kind of security that they had then, and I would go up to this back space, because I was too young to go see her. The age was like 14, you know, at that time. So I was too young. But, you know, I was a taller kid, and I could, you know, get through a conversation where it seemed like I was older. So sometimes I could fool the guards, and sometimes I couldn't. But I always-- I found a way like off the cafeteria to go off the stairwell and go see my mom.
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And then, you know, you're flooded with-- this is what happened with my mom, and then the more rational side of you at some point kicks in. Oh you know, given the time that that happened to your mom, this happened to your mom in like 1970s, right? And she was diagnosed probably at a later state. They didn't know as much. So you're trying not to like-- you're trying to brace yourself, because there is that moment if I allowed myself, I could have just, like, broken down. But I chose to sort of go in the-- let me just keep going and plan this and do this. And then I'll break down later, you know?

 

Lisa J. explains why the possibility of adoption helped take the pressure off.

Lisa J. explains why the possibility of adoption helped take the pressure off.

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But I always loved kids. And I always thought, well, you know, I think one day I can-- I'd like to have kids. You know, marriage, not marriage, as long as I afford them, I'm going to have kids. So then, I’m getting-- that's when the BRCA test came back, and it's like, oh, ovarian cancer. Oh, you have a higher rate for ovarian cancer.
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So I was like-- then I did some research into adoption, and they're like, you can adopt at any age. So all of a sudden, my pretty quiet biological clock just shut down. I said, “oh, any adoption, any age, as long as you're healthy or as long as”-- you know, whatever the criteria was, I met it. So I’m like, OK. So if something happens, because that was also very big for me too, I’m thinking “if this does happen to me...” That’s when I re-flash back to my mom, you know, and how I was left young. So I'm like, all right, let me take that off the table. I can adopt. And as long as I could, you know, provide or make sure they're OK, then I can have kids. But as far as, you know, having children biologically, it took the angst off the table, because I realized I had this BRCA gene. So then it was like-- then it became like a louder message in my head. I said, “OK, so I've got the adoption handled, you know, if I want to, that's an option.”  Foster, adoption. Like I found out all these different options. It's like phew.

 

Lisa J. warns men that they too are at risk of BRCA-linked breast cancer.

Lisa J. warns men that they too are at risk of BRCA-linked breast cancer.

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I do a lot of talking about men with breast cancer.
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I tell men, “yes, you need to go get your breasts checked.” I wear a t-shirt, men have breasts, too. You know, and I've had men say, “men can't get breast cancer,” and it's like, yes, you can. You have breasts. You have a mom. She could have passed the BRCA gene to you, because you can get it.

 

Lisa J. emphasizes the importance of researching your doctors and being clear about who you are.

Lisa J. emphasizes the importance of researching your doctors and being clear about who you are.

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But the point being was that-- they-- and this is something in terms of advocacy-- you have a- you look at your network in terms of your insurance. But you also have to do a little research on your doctors. You know, even if it's a quick Google scan, it's better than nothing. Sometimes if you can call and maybe get a feel from the office. But I- I also like to group my doctors. You know, they don't have to know each other. But it's nice if they can refer to each other or, you know, you trust this one to refer. And also being very clear with your doctor the type of patient that you tend to be. You know, I'm not someone who really-- it's not that I don't take medication every day-- but I do-- but it's- it’s- I'm not prone for medication. Like if you just say, you should take this, I'll most likely say no first. And I'm like that about surgery. You really have present it. 

 

Lisa J. says sometimes you have to relearn how to be someone’s friend after they get diagnosed.

Lisa J. says sometimes you have to relearn how to be someone’s friend after they get diagnosed.

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So sometimes we have to relearn how to be someone's friend or how to be someone's, you know, sister or brother or whatever your relationship. We have to learn something different about how to work with them or how to be with them, because they're not the same.  

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I remember a friend-- and we're still friends-- but I- part of it was my fault for not saying anything. She knew I was sick, but she didn't know to the extent. And she kept saying, oh, my brother's coming up from Canada. I want to be here. My brother's coming up. And then he came up. And she didn't call me to tell me the weekend or the day that he was coming. And he goes back. And he's asking about me. I'm asking about him. And she's like, oh, it was just too cold. And I'm like, well, sometimes the heat wasn't great. But if I wanted to go out in the cold, I would have made it there. And I was like, OK. You know, and I didn't take it like, oh, so it's going to be like that, huh? But it was more like, no, how about you ask?