Ronnie

Age at interview: 40
Outline:

Ronnie, age 40, had ductal carcinoma in situ (DCIS) breast cancer and is positive for a mutation on her BRCA2 gene. Her DCIS diagnosis and treatment and subsequent genetic testing have had a considerable impact on her physical and emotional health. The cultural context for sharing of health information within families has played a major role in Ronnie’s experience. A positive outcome of her cancer and genetic testing has been an active decision to practice self-compassion, prioritize work-life balance and generally be kinder to herself.

Background:

Ronnie is a woman of Indian descent who lives in the suburbs of a city in the mid-Atlantic region. Ronnie is single, has an advanced degree and works in health research.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Identified breast cancer mutation

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Ronnie was diagnosed with ductal carcinoma in situ (DCIS) breast cancer at 38, and subsequently found positive for mutation on her BRCA2 gene. Her DCIS was diagnosed because she noticed her nipple was bleeding. Surgery was initially recommended out of caution, and her diagnosis took about 9 months. As part of her DCIS treatment, Ronnie underwent several mammograms, ultrasounds, an MRI, a ductogram, two lumpectomies and radiation, and is currently taking tamoxifen. Treatment hasn’t been as bad as she expected, though she has dealt with fatigue and some hair loss. Ronnie continues to undergo screening for ovarian cancer. She has recently had surgery for endometriosis which did not reveal any cancer. She is planning to have a hysterectomy before she turns 45, as is recommended for those with a BRCA2 gene mutation.

Ronnie “put off genetic testing” because she didn’t have the time or capacity for it during treatment. When she learned that she was positive for a mutation on her BRCA2 gene, that “felt like getting cancer all over again.” Getting the genetic results made her feel really sick, even though she is actually currently healthy, and she struggles with fear for the future. Ronnie is single, and without children. She has a demanding professional life; all of the treatment and testing has been challenging for her work, and she fears risks related to future employability if people knew that she had a BRCA2 gene mutation. She is working to “treat her body better,” and practice self-compassion, and focus on controlling the things that she can. She comments on how not all friends “get it” in terms of what she has experienced, and that God has been with her throughout her journey. She debates whether it would have been better to have known earlier in life that that she had a BRCA2 mutation; she feels that she would have lived her life differently, and treated herself more kindly.

Ronnie’s cultural history has played a significant role in her experience of a cancer diagnosis and her genetic risk. She found the limited sharing of health information in her family to be upsetting. Her father passed away while she was being treated for her cancer, but she was able to ask him some questions about the cancer history from his side of the family shortly before his death. Her mother hasn’t shared much about Ronnie’s health or genetics with her side of the family because people she feels that in her family would talk. Ronnie wants to share information with people who may share her risk, but family dynamics are a challenge, and she continues to be worried, particularly about the girls in her family.

Ronnie has felt that her genetic risk would present challenges in terms of finding a partner, as she doesn’t feel that anybody would be attracted to the risks that she faces as part of their life. She feels that joining a support group could be helpful, but hasn’t been able to make this feasible for her. She has felt some concerns that she doesn’t really “fit” in support groups because she has DCIS, but when she found out about her BRCA2 gene mutation she felt that she had a legitimate reason to be seek support.

 

 

Ronnie describes feeling sick, even when she wasn’t.

Ronnie describes feeling sick, even when she wasn’t.

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So yeah, it’s like you have to manage another set of cancer risks even though you don’t have it. So like, there were all these days when I was actually healthy but the fear of that and that news, it makes you feel very sick even though I wasn’t.

 

Ronnie says that though she is perfectly healthy, she is in lots of conversations about trying not to die from her various cancer risks.

Ronnie says that though she is perfectly healthy, she is in lots of conversations about trying not to die from her various cancer risks.

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There’s fear again now, not just with the breast but now with the ovaries. 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 so, yeah, it’s just been a lot.

 

Ronnie had a series of screening tests that came back negative before finally being diagnosed with breast cancer.

Ronnie had a series of screening tests that came back negative before finally being diagnosed with breast cancer.

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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. But she was very kind of cheerful about it. She's just like, one step at a time. But I think the moment you tell a patient that, you know, I feel a lump at whatever.
Mm-hmm.
So then I had to get a mammogram. And I think it was about four or five days-- I think that weekend like it was a Thursday when I saw her, I think. And then the following week like on a Tuesday or something where I had a mammogram and an ultrasound. And this was at [LOCATION].
Mm-hmm.
And nothing showed up. So they didn't see anything. And that was like the biggest relief of my life. When the doctor walked in and I was waiting to hear the results, and that was like the scariest moment. And then she said we can't see anything. And so I was just so relieved. And then I went to a breast surgeon at [LOCATION] who also kind of felt around and then did her own ultrasound. She couldn't detect where the bleeding was coming from. She couldn't really see anything on the ultrasound. But she recommended-- I think she was being cautious because these things can be serious.
Mm-hmm.
They can be indicative of something more serious. But 80 to 90% of cases of the symptom are benign. But I think people are, you know, they don't want to take that chance. And so, she was being kind of aggressive about-- not aggressive-- I mean rightfully so.
Yeah.
She wanted to recommend surgery. But there was something about the surgery, what she was recommending just didn't feel right to me. She said because they couldn't detect where it was coming from it would be some kind of exploratory surgery and they would be kind of looking around. And the recovery seemed, I don't know. It just didn't feel right to me. It wasn't the surgery. It was just the way that they were doing the surgery.
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So, I got a second opinion at [LOCATION]. And then I think [LOCATION] told me I had to-- in order to get a second opinion I had to redo the mammogram and ultrasound. So, I did that again. Mammogram didn't show anything. But the radiologist, there was a slight something in the ultrasound. And he thought it was very suspicious-- not very, but it was like a little suspicious. So really for the next, I don't know, I won't bore you with all those detail. But for the next, I don't know-- it took another several months of testing. So that-- I mean I want to say that was-- that when I went for the nipple bleeding that was I think the fall of 2016 or something. And it was really-- then when I went to [LOCATION], it was like early 2017.
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But it was just like a lot of testing. About nine months. I mean, there was a nine-month period where I didn't really-- where I thought I was benign then not. It was back and forth between these different providers, doing these different tests, being really nervous and anxious, but then being really elated when things came back benign. But then the radiologist's words were always in the back of my mind because he just wasn't satisfied with the results. So even when the bleeding stopped and everything seemed OK, they-- I was told to keep monitoring it. And it's good I did because then the bleeding came back. And I was told come right away back, let your doctors know right away when the bleeding, if it comes back. And so, when it came back, as soon as I was recovered from endometriosis surgery, then I yeah, had it examined. And then, yeah, I found out the night before Thanksgiving.

 

Ronnie wishes she had learned her BRCA2+ status earlier because it would have made her decisions easier.

Ronnie wishes she had learned her BRCA2+ status earlier because it would have made her decisions easier.

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I'm on tamoxifen.
Okay.
So that's for five years. So, it'll be-- I started it in June.
Okay.
…And so, but if I'd gotten the results of the genetic tests-- like if I'd done it earlier-- because one thing I was having a hard time deciding whether to take tamoxifen or not, because I-- it was DCIS. You have the option of taking it or not. And I eventually decided to take it. But if I had done the genetic testing earlier, I would have—it would have been a much eas—I knew I would have had to take it.
Okay.
Tamoxifen is one of the few things that actually helps for genetic breast cancer.

 

Ronnie wishes the professionals talking with her had been better attuned to her fear, and to language that might feel bad to hear.

Ronnie wishes the professionals talking with her had been better attuned to her fear, and to language that might feel bad to hear.

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People are going to be fearful. Any mention of cancer, even if it's the earliest stages of testing, people are going to be afraid. And you have to be-- I think you have to-- if you can do something to cater to that a little bit more, because then you feel like, oh, the fear isn't-- why am I-- you feel bad for being scared. And it's totally understandable. But people are going to be fearful. And I don't know. You have to recognize and be attuned to people's fear and do what you can to alleviate it.

 

In Ronnie’s family, conversations eventually made clear which side of the family actually has high genetic risk for breast cancer.

In Ronnie’s family, conversations eventually made clear which side of the family actually has high genetic risk for breast cancer.

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Yeah. Just more that it was my mom was sure it wasn’t genetic, but she said, you know, you should do it anyway. Because I think she was a little bit concerned. ‘Cause when I got it young-- and then people-- and then when doctors asked, “oh, is there a family history?” I said, well, my mom had it. And so, I think she was uncomfortable with kind of being blamed for it in a way, that she gave it to me. But I mean didn’t see it that way. Nobody wants to give this to anybody else. But yeah, I think she was always uncomfortable-- I think she was uncomfortable with that. And she thought it would be a good idea just to kind of prove that it didn’t come from her.
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When I was diagnosed, and going through treatment, and all that, my father was starting to die. And so that survey for the genetic testing, it was asking some questions about his side of the family. And so basically while he was in hospice on his deathbed, I had to ask him questions about his side of the family. He got really upset. He didn’t want to talk about it. But he gave me the information. And then, because I was trying to ask my mom, I didn’t think it was a good time to ask my father that information. And she said, no, you should ask him. But he wasn’t well. I went and asked him anyway. And then he wasn’t really happy about it. And then I was sort of angry at-- I was a little upset at him. I mean I understood like he just wasn’t feeling well. But also, like he was not too tired to tell my mom and I to do other things. And I thought, you know, if I was dying, I would want to help my kid—my child—in whatever way it’s possible. Even if it’s painful, if this is something that can help me in my treatment, like I would want to do that even if I was dying. So, I was a little upset about that.

 

Awareness of her elevated risk makes Ronnie feel sick sometimes even when she’s not

Awareness of her elevated risk makes Ronnie feel sick sometimes even when she’s not

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But yeah, so I had to start the process once again of meeting back with my doctors. Because a year ago I had to meet with like the medical oncologist, the radiation oncologist to kick off the cancer treatment. And then now a year later I’m kicking off these appointments again to talk about not future breast cancer risk but also ovarian risk. So, I had to meet with my OBGYN, an OBGYN gyne—what is it—oh, gynecological oncologist. Yeah. And I think my breast surgeon, I think I needed to meet with him too. So yeah, it’s like you have to manage another set of cancer risks even though you don’t have it. So there were all these days when I was actually healthy but the fear of that and that news, it makes you feel very sick even though I wasn’t. So, I didn’t like that. It just kind of—those months were pretty ruined, I think.
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There’s fear again now, not just with the breast but now with the ovaries. 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 so, yeah, it’s just been a lot.

 

Ronnie finds meditation very helpful.

Ronnie finds meditation very helpful.

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So, 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. But it really, I don't know if meditation is exactly spirituality in this context. But it definitely-- I mean, it’s just-- that whole staying in the present thing sounds very cliched, but it's actually like, the key to-- it was really the reason why, when I got the news of the diagnosis, I think I was able to keep it together. You know, it's like devastating.
Mm-Hmm.
But I remember at the breast surgeon giving me the results. And I remember just staying very-- like listening-- even though it was emotionally very difficult. I remember being in the right mind to take notes on what he said, ask certain questions. Like I wished I could be that present or to be that way, the way I was when I got one of the most-- worst news of my life. I wish I could be that way in the rest of my life. But it's really through the principles, not always doing meditation. But, well, meditation practice plus the principles of underlying meditation that really I think help you. I wish I had a better way of saying it than just being present with…
Mm-Hmm.
…but that's really what it's about. I mean, just coming to your senses and being in tune with what is happening. It really helped me I think process that information.

 

Ronnie says her family was unable to offer much support because her father also had cancer.

Ronnie says her family was unable to offer much support because her father also had cancer.

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As far as face to face support, there wasn't really much of anything. I mean my mom—my parents couldn't be here because my father was dying at the same time. So, my mom was very occupied with taking care of him. And so he died of mesothelioma
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So, for me, it was just-- I never thought that it would be this solitary. Like it, I think I was more upset by the lack of social support than I was about, like, the diagnosis. I just thought, you know, if something terrible happened there would be more support in my life for something like this, and there wasn't really much in terms of face to face support. My aunt and uncle came to be with me during the surgeries. But, you know, they have their own families. They had to leave after a certain amount of time, and my mom came, I think, for like a week of my radiation treatment. My father was stable at that time. So, she came and saw me. But I think through the worst of it, when I was-- when I got the news, I was by myself. And the next day was Thanksgiving. And I wasn't with any family. I was with nobody.

 

Ronnie worries that she might be forced to leave her job.

Ronnie worries that she might be forced to leave her job.

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My mom was basically forced to retire early when-- like after she went through treatment.
--
But they didn't want to run the risk of her getting it again, and the hosp— 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…
Mm-Hmm.
…then like, I don't have a way to pay for it, and then I'm going to die. So, there was a lot of that vicious cycle kind of thinking.

 

Ronnie points out that it’s difficult to know for sure when is the best time to learn about increased risk.

Ronnie points out that it’s difficult to know for sure when is the best time to learn about increased risk.

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I wish I had known that I had BRCA. I mean, I say that now. I don’t kn-- part of me says that now. But a part of me wonders if I could have processed it at an earlier age. But I do wish, I do really wish that I had known. I say to myself, if I had known this, I would have-- I think I would have made certain decisions. I would have lived my life I think differently.

 

Ronnie says not to let fear after a diagnosis of elevated genetic risk ruin enjoyment of good health.

Ronnie says not to let fear after a diagnosis of elevated genetic risk ruin enjoyment of good health.

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Fear is a big thing. So, it can really mess-- especially with genetics. Now when you get a diagnosis, the fear is quite understandable. But with genetic, the results of genetic testing, the tricky thing is, like, you may be OK. At that time I was OK, but it makes you feel like you're not. And so, all these days, perfectly normal…
Mm-Hmm.
…healthy days were like, ruined because of it. So, the results of genetic testing, I think you have to really-- you have to watch. It's totally understandable to be fearful. But you have to also be careful not to let it ruin the present because it can.