Ronnie
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Ronnie noticed her right nipple was bleeding some when she was in her late 30s. She thought it was “strange” but “kind of ignored it” because she was “very busy at work at that time.” A few weeks later, Ronnie “happened to see” a public health infographic with “a bunch of lemons” where “each lemon shows a different visual symptom of breast cancer.” One of the lemons showed “clear or bloody” nipple discharge as a common symptom of breast cancer. Ronnie saw her primary care provider right away. They did a clinical breast exam and felt a lump and when Ronnie “heard that word” it was “kind of a nightmare.” Ronnie’s provider recommended they take it “one step at a time.” Ronnie did just that but had no idea she would remain in a “cycle” of being “nervous and anxious” then “really elated when things came back benign” for 9 months before receiving a diagnosis.
After another mammogram and ultrasound showed “nothing,” Ronnie went to see a breast surgeon. Though they “couldn’t detect where the bleeding was coming from” they recommended “exploratory surgery” which “didn’t feel right” to Ronnie. She got a second opinion, and another mammogram and ultrasound, which “didn’t show anything” however, the radiologist noticed something that was “a little suspicious.” It took “another several months of testing” including an MRI, mammograms, ultrasounds, a biopsy, and a painful ductogram. The bleeding went away and then came back and upon its return, they noticed a “mass.” Ronnie underwent a lumpectomy, and her breast cancer was confirmed; Ronnie had ductal carcinoma in situ (DCIS) at 38. After they confirmed the diagnosis, Ronnie underwent another lumpectomy because they “only got some of it” in the first procedure. Ronnie later learned she was positive for a mutation on her BRCA2 gene; learn more about Ronnie’s experience with inherited cancer risk here.
After surgery, Ronnie started radiation, and the treatment itself “wasn’t bad” other than some lingering fatigue. Ronnie was then put on Tamoxifen, a form or hormone therapy, which she will continue for five years. Despite hearing warnings of the “scary stuff” Tamoxifen can do to your body, Ronnie has experienced almost no side effects other than “some hair loss” and she is able to “do things to cover it up.” Ronnie has a very demanding job and took off a good bit of time from work for the appointments and treatment and worried whether her employer wanted to “keep” her “around.” Ronnie also felt pressure from her family; she is in her 40s, is single, and doesn’t have children so feels pushed by her traditional family to “find a husband and start a family.” Due to her BRCA2 gene mutation, Ronnie plans to get a hysterectomy at 45 and this coupled with her hormone therapy treatment makes her worry about being “alone the rest of” her “life” because she doesn’t think anyone “would want that in their life.”
Ronnie’s culture has also played a role in her experience of a cancer diagnosis. Her family was “very conscious of not telling too many people” because “Indians can be very gossipy” and that doesn’t make her “feel very good.” Ronnie is interested in joining a support group but has felt some concerns that she doesn’t really “fit” in groups because she has DCIS, which is Stage 0, and Ronnie doesn’t feel like “a legitimate breast cancer diagnosis.” However, Ronnie has found strength and support through her journey. Her workplace was “very supportive” and allowed her to telework the “whole time.” Ronnie has also been inspired to “treat her body better,” practice self-compassion, and focus on controlling the things that she can. Ronnie feels not all of her friends “get it” in terms of what she has experienced, however has felt God with her throughout her journey and meditation has helped her “process” everything. Ronnie wishes health care professionals would be more “attuned to people's fear” and do what they can “to alleviate it” and to not make people feel “stupid for not comprehending clinical information” or for “being fearful.” Ronnie wants others in a similar position to know “you shouldn't be alone” and to find “support” where you can.
Ronnie had bleeding from her nipple and was prompted to act by some public health information she saw.
Ronnie had bleeding from her nipple and was prompted to act by some public health information she saw.
I noticed some like, bleeding from my, the nipple of my right breast. Like it was just a really weird thing, just some spotting. And I don’t know. I didn’t, sometimes you, there’s spotting down here so I thought maybe it’s just something that happens. So, I kind of ignored it. I thought it was strange, but I ignored it. It was just very busy at work at that time too. But then I saw this infographic—I don’t know you may have seen. It it’s this egg carton with lemons.
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"Yeah. So, one of the—so each lemon shows a different visual symptom of breast cancer. I think the caption said you may have breast cancer if you have one of these signs. And so, one of the lemons showed like fluid, like either clear or bloody fluid. And so that's when I was like, oh, gosh. And so, then I talked to my mom about it. And she said you have to see the doctor. And then I saw my primary care provider. And she did like a clinical breast exam. She said she felt a lump. And when I heard that word, yeah, that was kind of a nightmare.
Ronnie was satisfied with less information.
Ronnie was satisfied with less information.
Well, I think my oncologist gave some information. Like yeah, I got a folder with some information from [INSTITUTION] on breast cancer. And then I think I limited myself to a couple two or three credible websites. I didn't dig deeply into it. I got some facts. And when I felt like it was enough to know, I stopped myself from reading more.
Ronnie wants to wait and do a full hysterectomy when she is a little older.
Ronnie wants to wait and do a full hysterectomy when she is a little older.
And then I had to meet with my OBGYN. And he was suggesting since I’m 40 to take every, you know, to take out the ovaries, take out the fallopian tube. He wanted me to do a full hysterectomy and, so, yeah. The last few months, even though I was perfectly healthy, I’ve been in all these conversations about trying not to die and yeah. It’s just been a lot.
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The conversations, I think, have mostly stopped. I think at 44 or 45 they’re recommending that I take everything out. Just to because people with BRCA2, like for BRCA1, if you have that, they recommend taking everything out by 40 at the latest. Like, 35 or like 40 at the latest, or younger. But for BRCA2 they find those who develop ovarian cancer happens later. And so, you can wait a little bit later.
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But then there's also like, you know, I mean, I'm single. I don't have children. There was and then the all this stuff about ovarian risks. Then there was a whole other, like what if no man wants to be with me? You know, there's all that risk about will I ever get married and will I ever I was already in my 30’s getting a lot of pressure from my mom to, you know, find a husband and start a family.
Ronnie says her work arrangements felt increasingly fragile.
Ronnie says her work arrangements felt increasingly fragile.
I think risks are more for in future employment situations, ‘cause my mom was basically forced to retire early when like after she went through treatment. They didn’t want, they were afraid she was going to get it again, and treatment costs a lot of money, and so she was kind of forced to retire. It's not legal. But I mean, they didn't, I don't know exactly how it went down. But she, but they didn't want to run the risk of her getting it again, and her workplace having to pay for all of that again. And so, I think I was, I had concerns that were sort of similar. Would my workplace still want to keep me around? Would I have a job? And if I don't have a job, then I don't have insurance, and then if I get cancer again. Then like, I don't have a way to pay for it, and then I'm going to die.
Meditation helped Ronnie cope with getting her diagnosis.
Meditation helped Ronnie cope with getting her diagnosis.
It took like, a prescription for meditation from a behavioral psychologist for me to do it. And I think that was probably the single most helpful thing. That whole staying in the present thing sounds very cliched but it was really the reason why, when I got the news of the diagnosis, I was able to keep it together. Even though it was emotionally very difficult, I remember being in the right mind to take notes on what he said, ask certain questions. Just coming to your senses and being in tune with what is happening. It really helped me, I think, process that information.
Ronnie feels some of her friends “don’t really get it.”
Ronnie feels some of her friends “don’t really get it.”
Yeah, so it's mostly been friends, but even like one friend, one friendship ended, another one, you know, and then other people, they don't really get it. They'll listen. And I don't expect them to get it, but I think friends have been, the ones who I've trusted, have been more supportive. But, like, I had a roommate for nine years, and she really didn't say much. At the same time, I was diagnosed, she lost somebody, one of her friends, she lost to cancer. So, I'm thinking that must have had something to do with that. But really, after I told her, there was really no communication from her about how I was doing, which surprised me, but it might be because she was going through her own grief. And then she was newly married. So, I don't know. But there was really no response. And then another friend came one weekend. Saying, it was my first week after radiation treatment. And she, I don't know. I said something, and then she got really angry. She drove from [LOCATION], saying she would, wanted to help and provide support. And then we got into an argument, and then she left. She said all these things about me, how I'm ungrateful, and I'm, I just, I’m into my own problems. Yeah. So, I mean, it was just, we were going to lunch, to a restaurant, and then her car, it showed the check engine light, and then I was, like oh, I was a little bit concerned. And then I was getting a little anxious about that and then and trying to help her figure things out. She got offended by that. I said, I off, I also offered to take my car. She got offended that I was anxious about that. And she said, “What's going on with you?” I said, “Well, I have this—I'm going through cancer treatment.” And then she just got very upset. And, yeah, she said a lot of bad things about me, and then I didn’t, yeah, and she went back to [LOCATION]. I don't want to resume that friendship.
Ronnie worries that DCIS isn’t taken seriously in support groups.
Ronnie worries that DCIS isn’t taken seriously in support groups.
DCIS is weird. I think, to people who don't have breast cancer, it’s cancer. But then to people who have cancer, my perception is that it's not legitimate. It's stage 0. And so, some people call it pre-cancer. It's like a weird in-between place to be. I didn't feel like this was a legitimate breast cancer diagnosis. So, I thought for somebody with stage 4 breast cancer this would probably seem like nothing. And part of me didn't want to go into a place where people at stage 2, 3, 4, and then here somebody with stage 0. I didn't want to be dismissed as like, this is nothing.