Janice
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Janice has had many annual mammograms. After her regular screening appointment at age 70, Janice was called back for a follow-up mammogram and biopsy to assess abnormalities found in her breast. A week later she received the call that she had ductal carcinoma in situ (DCIS), an early form of non-invasive breast cancer. “The mind plays tricks,” so when Janice received this news, she did not fully realize she was being diagnosed with breast cancer until her doctors insisted she go see a breast surgeon. Janice’s adult daughter, who lives in another state, joined the appointment with the surgeon via video call. When Janice completed the thorough questionnaire she was given, it became clear that the amount of cancer in her family meant it would make sense for Janice to undergo genetic testing.
Although the testing itself was covered by insurance, waiting for results was anxiety-inducing for Janice. She leaned on her “wonderful family” along with meditating, journaling and “a lot of prayers” as she grappled with the notion that if her results came back positive for a BRCA gene mutation, she might need to have both breasts removed. She was relieved to hear she did not carry a genetic mutation, but quickly realized it was now time to “make the decision” about treatment. Janice had a lumpectomy, which was completed by an “all-women team.” Janice was accompanied to her surgery by her mom, sister, and niece so the “woman power” was “fabulous.” Her lumpectomy confirmed that Janice had DCIS, meaning the cancer was contained in the ducts. Janice then saw a medical oncologist, who recommended hormone therapy and radiation or a mastectomy. Janice asked for time to digest the array of decisions presented. She later found that during this waiting period her oncologist reported that she “refused any medical treatment moving forward” – a mischaracterization which undermined Janice’s trust in that provider. Ultimately, Janice moved on from that clinician and decided to pursue radiation, based on a decision aid she used (DCIS Decision RX).
Radiation “was an ordeal” and proved difficult, between the frequency of appointments, the exhaustion she experienced, and the need to “keep moisturizing, keep moisturizing, keep moisturizing.” Overall, a majority of the care experiences Janice had were “marvelous,” but this period was still “really, really difficult,” in part because during treatment your “body is not yours anymore.” Janice struggled with some depression; however, she found a program that offered affordable mental health assistance, which helped with lifting the “overwhelming” feeling of “losing control.” Janice eventually found several support groups and “women helping women” is what helped hold her together. Janice also felt such support and love from her friends and family – her mom survived breast cancer herself, and reminded Janice “Honey, get over it. Move on” which helped her feel it would all be OK.
Having gone through breast cancer, Janice learned that “more black women die from breast cancer than other women” which has inspired her to engage in advocacy work focused on African American women. Though sharing her breast cancer story is “very personal,” Janice cares a great deal about doing her part, especially as a 71-year- old woman. Janice wants others to not feel “frightened” into making a decision just because it is recommended – “we’re not cookie cutter, so we have to find our way.” Janice recommends digging into breast cancer research yourself, based on your age, and then making the best decision for you because this is “your pathway” not “somebody else’s.” For Janice, there was great value in having “the right people in the front row of your life” and to always be “your own advocate” and find your “voice in this” because the journey is yours and you have “the patient rights.”
Janice has regular mammograms because breast cancer runs in her family.
Janice has regular mammograms because breast cancer runs in her family.
Although I did know that breast cancer was very prevalent in my family, so that was why I was doing my due diligence. And so, in April, actually it was the end of March, I went for the first mammography in 2019. And I thought everything was fine and then I went home. I got a telephone call and they said, "We would like for you to come back and redo.” I said, "Really?" They said, "Yes." So, I went back. That was April 1. April Fool's Day. And so, I went and did the mammography, and you know when something's wrong when she says, "I'll be right back." And then she steps out the room, and then they bring in another person. And then they're both chatting. And then they look at you, and they said, "We'll be right back." And then I said, "Uh-oh. Something is not right." So, when they came back, they said, "Could you please put your clothes on and follow us because the doctor, the radiologist, wants to see you."
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And that was the beginning of feeling kind of sort of like a black Alice in Wonderland. You know, I just kind of fell down and down and down and into this breast cancer issue.
Janice describes "driving [my treatment] decisions mainly with my research."
Janice describes "driving [my treatment] decisions mainly with my research."
So, fast forward, that's when I found out that it was DCIS 0. So, I thought, “Oh, well, if it's 0,” I went back to the research and I looked it all up. I said, “Oh, well, then that's like, that means that it has not, it's been contained in the ducts and it hasn't gone outside of the ducts.” And so, I felt that I really had dodged a big bullet because the—what I had could only be read on the mammogram. But if I had decided, oh, I'll just miss this year, who knows what could have happened? So, you know, technology is pretty good with that. But what happened was the decision was to me, well, now with this, we suggest that you have radiation and take these hormonal drugs for five years. And I thought this is insane. What? So, I went off to do more research. And I was very, very anxious, you know. Really, really anxious about that. I'm, like, well if it's contained, then why do I have to go do all of this stuff? And so, I was really pushing back.
When Janice pushed her clinicians for better information to decide whether to have radiation, they offered her a decision tool that could help.
When Janice pushed her clinicians for better information to decide whether to have radiation, they offered her a decision tool that could help.
When I was pushing back on the radiation, that's when I said, "Isn't there something that we can do to help me with this decision?" And they said, "Oh, yes. There's something called DCIS Decision RX." So, I said, "Oh. Okay." So, then they all decided that I needed to—I could go through that process. And so, I said, "Okay, well, then I'm off to [LOCATION]." So, I went off to [LOCATION] to a conference. And during that period, they were doing whatever you have to do to get the answer. And I got the call while I was down in [LOCATION] that my score indicated that I needed radiation. So, I said, "Okay. I'll go with that." So, that moved me to, you know, I felt better after having that done. And that was part of the consultation. But I mean, I had to bring all of that up because I kept saying, "Well, no. I can't seem to make up my mind. I can't make a decision, isn't there more information?" You know, because I was pushing back about the fact that, "Hey, guys! I'm 70." I may not look it.
Janice found radiation treatment to be emotionally harder than chemotherapy.
Janice found radiation treatment to be emotionally harder than chemotherapy.
The first time when I went in. My sister came to meet me, and I didn't know she was coming. She came to be with me at the waiting area, and that was when I met with the oncologist and we spoke with him. And then when I went in for my first time, she wasn't there. I was there alone. And they put you on—in that machine, and they slide you back in. And I just got overwhelmed. And the tears just came.
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It was difficult. It was really, really difficult to have. And afterwards, I said, well, you know, "I could go to Mardi Gras and expose my breasts now because I've exposed them to everybody." You just show them to everybody, and they write on you, and they put these stickers all over you and everything. It's like your body it's like an extension of you. And it's not yours anymore; they take it. And it's really difficult. Difficult to kind of like hold on to yourself and try to come out through that period.
Janice was at first undecided about radiation, but a computer model helped her choose.
Janice was at first undecided about radiation, but a computer model helped her choose.
So, I met with the radiation oncologist. And he, of course, was giving me this big—what I felt was a big pitch for the radiation, you know. Why you need to do it, and how often—and with my background and what I had, he suggested that I needed 20 sessions. And I said, "What? 20 sessions?" And they were, "Well, why not? Why not?" You know, "What's the problem?"
And I said, "Well, you know, I'm already taking a lot of vitamins because I'm running with my issues of just trying to have energy. And I'm already at a low energy level. Then now this radiation, from what I read, could really push you into fatigue." And I was concerned about that. So, we went back and forth and back and forth about whether or not I was going to do it.
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I said, "Isn't there something that we can do to help me with this decision?" And they said, "Oh, yes. There's something called DCIS Decision RX." So, I said, "Oh. Okay." So, then they all decided that I needed to, I could, go through that process. And so, I said, "Okay, well, then I'm off to [LOCATION]." So, I went off to [LOCATION] to a conference. And during that period, they were doing whatever you have to do to get the answer. And I got the call while I was down in [LOCATION] that my score indicated that I needed radiation. So, I said, "Okay. I'll go with that."
Janice chose to forego hormone therapy, based on her age and prior experience.
Janice chose to forego hormone therapy, based on her age and prior experience.
I had decided I wasn't going to do it. And some of my rationale for that was the fact that I was 70, coming up on my 71st birthday. And according to the research, those hormonal drugs, in some women it throws you right back into menopause. Well, damn, I already had menopause, and it was the pits! And I didn't want to back through that again. Who wants to relive that? Maybe if I was 40 or 45, I might want to think about this, but I didn't want to have to take more medicine to go into my body that we really don't know the outcome for and to push for what? Because the bottom line was—what I learned through this whole process is, there are no guarantees. There are absolutely no guarantees. So, what they give you is their best thinking. And you can make up your decision. And so, my decision was, “Hell, no, I'm not doing that.”
Janice says it is important to feel she is doing the best for herself.
Janice says it is important to feel she is doing the best for herself.
I tried to find my voice in this. I've tried to be my own advocate. I think that's very important that you just don't take their—the health practitioner's, word for everything. You just have to listen and weigh and figure out what it is because you do have rights. You have patient rights. So, you have to wrestle those rights back to you, to your side. So, that you feel good about yourself, and that's what I wanted. I wanted to be able to feel that I was doing the best for [NAME]. It was all about taking care of [NAME]. I wasn't going to leave it to anyone else.
Janice advocates for more Black women to get involved in research and freely shares her own story.
Janice advocates for more Black women to get involved in research and freely shares her own story.
When I was doing the research that—I found out that more black women die from breast cancer than other women. And, and we have—afnd that's a real problem. And I think maybe a lot of that has to do with the fact that we don't do research; we're not involved in a lot of research, maybe. So, I am always advocating for that. I belong to an advocacy organization. And I have been for the last 20 years involved in advocating for African American growth in women. And so, I'm always looking to bring that to light. You know, during October, I did my part for, you know, breast cancer month. And I was promoting it on my Facebook and Instagram. And I didn't hide myself from—some people don't want it told. And I have had no problem with people knowing that I had breast cancer. And so, I self-disclosed. And so, there was no issue around that for me. And that's a very personal, yeah, it's very personal.