Cynthia

Age at interview: 50
Outline:

Cynthia, age 50, has a strong, multi-generational history of cancer. Recently a close relative was diagnosed with breast cancer and tested positive for a mutation on her BRCA2 gene. Cynthia, as well as several members of her family discovered they too carried the mutation. Cynthia immediately had her tubes and ovaries removed. After watching her relatives suffer through chemotherapy, Cynthia decided to have a bilateral prophylactic mastectomy and reconstruction to spare her kids from the experience. Micro-malignancies—too small to have been detected—were found in the removed breast tissue. She knows she made the right decision, but wrestles with the loss of her breasts.

Background:

Cynthia is a divorced, 50-year old, White woman, who lives with her teenage son in a suburb of a Midwestern city.

Cancer-Related Experience: Elevated risk

Type of Inherited Risk: Identified breast cancer mutation

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Cancer runs in Cynthia’s family. When a close relative was diagnosed with breast cancer and tested positive for a BRCA2 gene mutation, Cynthia and other close relatives were tested and several were positive for a BRCA2 mutation as well, including Cynthia. Noting, “it's our job as parents, as aunts, to take the time to share that and hopefully make a better life for them,” the family has open conversations with the next generation about when to get tested or start screening.

Done with having babies, the decision to remove her tubes and ovaries was easy. Cynthia thought as a middle-aged woman, “you can put me in menopause. I'll deal with it.” But as a single woman still hoping to find a partner, the decision to have a preventive double mastectomy and reconstruction—to remove what she considered “healthy tissue”—was much more fraught. Over several months she weighed her odds, consulted with specialists, and talked to people that have been through it to gain a better understanding. Night after sleepless night, Cynthia hoped, on the one hand, to be part of the small minority who would not get cancer, while on the mathematically-minded other hand, she weighed how many people in her family have had cancer. She knew the statistics were just not in her favor. But it was her need to finish raising her children and shield them as much as possible from having to watch her go through chemotherapy and that finalized her decision. In doing so, Cynthia recognizes it was the right choice. The pathology report found, she says, “a microscopic level that you can't detect with the mammogram or the MRI.” Had she waited she knows, she might be “playing a different ballgame, like so many women.”

The post-surgical experience has been difficult and fraught with anger, pain and conflicted feelings. She was shocked and mad when she woke up. She did not anticipate how “invasive and painful” it would be and says she might have handled it better had someone prepared her. Even more troubling is her physical appearance. She doesn’t consider herself vain, but mourns the loss of her once large breasts, which were an important part of her identity. While acknowledging she got the largest available implants, when looking in the mirror, she is dissatisfied to see her new smaller breasts. She struggles with these feelings, because she chose the mastectomy and reconstruction as a “preventative measure,” versus, “I had cancer and I had no choice.”

She is grateful for the support of her family, friends and co-workers—and especially that her teenage son stepped up to the plate and did the housework. She finds peace in listening to classical music. While crediting the medical aspects of her care at a comprehensive academic cancer, she wishes she had gotten better post-surgical care, such as how long she needed to wear that “nasty surgical bra” and what types of pillows to use. Noting her technical orientation, Cynthia found that blogs of women sharing post-surgical tips was most helpful.

 

 

Cynthia emphasizes that this is a very personal, and often difficult, decision.

Cynthia emphasizes that this is a very personal, and often difficult, decision.

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Because, you know, everybody has the right to make that choice. And what might be right for me and what drove me to my decision might not be the same thing for someone else.
Right.
And I did not walk into it lightly. It took, it took me several months of thinking about it and weighing it and talking to people that have been through it and having a better understanding. And still not even fully understanding it until I went through it, but understanding you know, the pros and cons of it all. And it takes a while, and it's going to keep you up at night. There's no doubt about it, in my opinion.

 

Cynthia’s genetic counselor provided some basic information about testing.

Cynthia’s genetic counselor provided some basic information about testing.

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I met with a genetic counselor, and they discussed the pros to having the test. They talked about having a positive-negative and that type of thing, and what that all meant. And they talked about the different types of genetic testing, because you could do certain ones or a full panel. And different cancers are more prevalent in certain genetic markers. So we probably spent a good, I don't know, two hours with a genetic counselor going through things, having a complete understanding of what it meant.

 

Cynthia, a parent, knows how difficult it is to be the child of a cancer patient.

Cynthia, a parent, knows how difficult it is to be the child of a cancer patient.

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It made me realize a couple of things. That especially with my mom, because of her age, was that if there was something that I could do to keep my children from having to go through what we went through helping my mom and watching my mom, not that we don't love her and didn't want to help her, but just how much it drains a family and how hard it was on her. And she's still, you know, struggling. That's, a pretty big cancer compared to the breast cancer. And, and I hate to say that, like you can sit there and measure. But the success rate of going into remission just isn't there for the gynecological cancer like it is for the breast cancer. It's a fight that typically just buys you a few years instead of, you know, living cancer-free after so long. So it was my goal to do everything I could to make sure my children didn't have to go through what we were going through, so they didn't have to see me go through, you know, what we had to watch our mother go through.

 

Cynthia says she mourns her breasts and had conflicted feelings about her decision to have both removed.

Cynthia says she mourns her breasts and had conflicted feelings about her decision to have both removed.

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I think that one of the things that I have a hard time with it all is, because I chose to do it as a preventative measure, I struggle a little bit with, do I have a right to feel this way, knowing I did it intentionally? Versus, I had cancer and I had no choice. I had to do it. So I struggle with the justification of when I'm feeling that way, when I'm feeling that struggle, when I'm feeling unhappy with the fact that I had to change my appearance.
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I struggle with it still pretty often. You know, when I look in the mirror or when I'm getting dressed for the day, I was a much larger-breasted woman, and now I'm very small in comparison, even though they put the largest implant that there is inside of me because of my, you know, framework. It's relatively small in comparison. And so I'm looking at that on a regular basis and slowly getting comfortable with it, but it hasn't happened overnight. And there's still days when I look at in closet and there's this shirt that I used to wear and that I like and I can't, because it doesn't look right on me. I struggle with that. Sorry.
It's a loss.
It is.
It's a mourning.
It is a loss.

 

In Cynthia’s family, cancer risk and cancer are regular topics of conversations – like the weather.

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In Cynthia’s family, cancer risk and cancer are regular topics of conversations – like the weather.

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You know, it's interesting because the entire thing…has been a large conversation piece in our family. And just being more preventative and proactive in trying to beat the odds. And so it's, it’s something that we talk about frequently, actually. And what we're doing, each one of us is doing to benefit ourselves. My sister, actually, is a chemical engineer and she's involved in a little bit of research as well. So just sharing information and having the conversations at the family gatherings with my daughter and my nieces and that next generation so that they have a better understanding of what they should expect, when they need to start. Because they're not necessarily going to go out and look for that information on their own. They're still young and they're not thinking about it. But they do need to start grasping the idea, coming to terms with it, and understanding how they can, you know, do certain things for preventative. And it's our job as parents, as aunts, to take the time to share that and hopefully make a better life for them where they're not struggling as much as we did. And so, we do. We have conversations very frequently. It's almost like "how's the weather" in our family, as odd as that may seem. But it's there. It's a reality. You've got to have it. You've got to support each other. We're a very, very loving and supportive family. 

 

Cynthia remembers how hard it was watching her own mother deal with cancer.

Cynthia remembers how hard it was watching her own mother deal with cancer.

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If there was something that I could do to keep my children from having to go through what we went through helping my mom and watching my mom, not that we don't love her and didn't want to help her, but just how much it drains a family and how hard it was on her.
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So, it was my goal to do everything I could to make sure my children didn't have to go through what we were going through.
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And you think about everything your family's been through. And you think about what you don't want your children to have to deal with and suffer through.

 

Cynthia plans to be ready and accepting when it is her time to go.

Cynthia plans to be ready and accepting when it is her time to go.

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You know, it's, it’s been, it has affected it. And I'm not sure if it's a positive or a negative. It's just different. It’s, you know, the kids and I talk about purpose. And if you aren't productive in giving to the world around you and no longer serve a purpose, is it not your time to go? And when the conversation originally started years ago, I wasn't ready to accept the fact that, “Yeah, I think it is your time to go.” I wasn't ready to say I'd be willing to let go. And now that I'm older and I've seen so many people with so many experiences with all of this and I've seen people go through and getting to that point where they can no longer, not because they're choosing, they just can't be giving and productive and not that I want to say goodbye to them. But if that was me, I could say goodbye. I could say it now that I'm ready to go, that if I'm not going to be able to be a productive part of society and give to the world around me because I no longer physically can, I'm going to be OK with that and I'm going to be ready to go. And so, I think all of this kind of helped me get to that. And, like I said, I don't know if it's a good thing or a bad thing, but it just helped me as a person come to terms with, there's going to be a time, and that's what that looks like for me, and I'm OK with that.
Is it like a knock on the door that we're all mortal and that the time could come?
Right. And, you know, like I said before, I wasn't willing to get there. Because my thoughts were like, “Well, what if? What if in two years my son has a child and I can't see my grandchild? What if?” And it was, it was selfish reasons. It really was. It was me wanting to be here to experience life through other people. And that's kind of selfish. And I guess I've come around that bend to realize that, you know, we live in a world with limited resources. We live in a world where, if we're taking more than what we can give maybe we should be questioning is it our time? Is it our time to leave those resources for that grandchildren when that grandchild is born even though I'm not there to see it?
Wow. So it has. It has affected me.

 

Cynthia finds it helpful to take time for spiritual reflection.

Cynthia finds it helpful to take time for spiritual reflection.

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I am not a religious person. I am a spiritual person and I do have a set of beliefs, but I don't believe that I need to have a religion in order to have faith in God and believe in the things that are associated with that, and heaven and, you know, right and wrong and a way of living my life that I think is morally and ethically correct. I don't need a religion for that. And so I'm not a religious person. I don't need a building. But I am a spiritual person. And I'm in a comfortable place with that. And so, I don't really seek that out because I don't have a need to. I feel comfortable with my God.

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It’s time alone with myself. And I guess prayer is the best way to describe it, but not necessarily because you know, a lot of people think of prayer and, you know, the whole, but it's not like that for me. It's just taking time to reflect and have that conversation, that prayer time with my god. So it's just me. Me and him.

 

Cynthia says her mother helped her navigate her healthcare appointments.

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Cynthia says her mother helped her navigate her healthcare appointments.

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There’s a lot of information being thrown at you. And later on, you're thinking about stuff and … you have that point person to go back and say, do you remember talking about this? What did she say about this? What did she say about that type of thing?

 

Cynthia yearns for a group who share her experience of prophylactic surgery without cancer.

Cynthia yearns for a group who share her experience of prophylactic surgery without cancer.

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I would be interested in possibly meeting with a group of women who have done it as a preventative measure, because I think that your issues-- although some of them are the same, some of them are different than a woman who actually went through the chemo and had been diagnosed. And so, I would personally would like to find a group of women who have done it as a preventative measure to sit and have conversations with. A support group of that nature would be something I would be interested in possibly utilizing. And I don't know if there are any in our area that exist.

 

Cynthia recognizes when something is wrong and pushes her providers to pay attention.

Cynthia recognizes when something is wrong and pushes her providers to pay attention.

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And it's so important to do that, to just be proactive about your health care...You just, you got to think about it. Could it be something else? And, you know, when he's saying “everything looks good, you look good in terms of recovery, it doesn't look like you have any infections, you don't have anything going on,” then you got to start saying, “OK, well, then what can it be?” And you have to help work with your doctor to figure it out.

 

Cynthia advises others with BRCA to think carefully about multiple issues when considering prophylactic surgery.

Cynthia advises others with BRCA to think carefully about multiple issues when considering prophylactic surgery.

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I would tell her that she needs to take time to think it all through, that she needs to completely educate herself, like I was talking, not just the medical components but everything. Talk to some different people. And that what might be good for one person is not necessarily the right decision for another, and that it's her decision. It's her body. And she has to do what's right for her. And as much as I, you know, could sit here and say, “This is the way to do it,” it's not. I mean, it's just not. And you have to be OK with it. Because if you're not OK when you do it, it will tear you apart. It's big, in my opinion. It's one of the biggest things that you're going to do. You're changing a huge part of you, as a woman, in my opinion. And so if you go and do that not being vested in it fully, that, that could be a pretty scary outcome when you're going through the process of accepting and moving on and all of that. So you have to be there and you have to be doing it because you're making that choice, not someone else. So I'm not going to talk you into it. That's your decision. But I can tell you my experience. And that's all I can offer.
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I think that making sure you have a doctor that you are confident in and comfortable with is extremely important, that you do your research on your doctor as well.
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But you still need to be mentally prepared for everything that it's going to throw at you. And know that there is a, a wide range of things that could go really well, could go really bad, and just be mentally prepared for it. And just know and understand what the whole thing, in its entirety, looks like. And I just think that's so important.

 

Cynthia says it’s important to respect privacy while offering help, and to understand people don’t always want to disclose details about their experiences.

Cynthia says it’s important to respect privacy while offering help, and to understand people don’t always want to disclose details about their experiences.

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You can offer to help and provide without asking them to tell their story, without making them feel like you're invading their personal space. There's kind of a difference. You know, instead phrasing things like you want to know what they're going through and how can I help in specific areas or something like that, a lot of times people feel that the minute they offer their help they’re asking that person to disclose. That's not necessarily the case. If somebody comes to me and says, “Can I help you with something? Can I bring you some food?” That doesn't mean that they want to know my personal story. And I'm not going to feel like they want to know my personal story. And if I don't feel like sharing my personal story, I don't feel obligated to share my personal story if I don't feel like it. So, just because somebody offers to help doesn't necessarily mean the patient's going to feel they have to give information that they don't feel comfortable giving.

 

Cynthia recognizes the limits of the questions even experts can answer.

Cynthia recognizes the limits of the questions even experts can answer.

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The biggest thing for me is and, you know, I don't even know if there's answers, but the biggest thing for me is knowing if I've really beat it or not, is knowing was it really all worth it? You know? Because if I end up with, you know, cancer under this implant in three years, boy, am I going to be pissed. Not going to lie, you know? But I don't think anybody knows that answer. So, I think that the real questions that we harbor deep in ourselves nobody can answer, no matter what their expertise level are.
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Where the uncertainty and the, the discomfort lies is not with, you know, let's follow this medical regimen. It lies with the unknown that nobody has an answer for. So there is no expert that I need to see for any questions, because they won't be able to answer my questions.