Kerry

Age at interview: 36
Outline:

About a year ago, Kerry, now age 36, was diagnosed with breast cancer and tested positive for a mutation on her ATM gene. Careful diagnosis and treatment occurred because, thanks to her partner’s advocacy, Kerry switched her care to an academic comprehensive cancer center. She had a bilateral mastectomy, reconstruction, chemotherapy, and is now doing immunotherapy and taking tamoxifen.

Background:

Kerry is a White woman who lives with her partner and their four kids in a rural area in the Midwest.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Identified breast cancer mutation

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About a year ago, Kerry at the age of 35, felt a lump in her right breast—just six-months after a “clean” exam. The local clinic said it was probably a fibroadenoma and told her to wait a year to see if it had grown. She recalls them saying, “You're young. You're healthy. You don't have any family history.” But at her partner’s insistence, they did the biopsy. Kerry recalls when the doctor called to tell her she had cancer it was more of a shock to him than it was to her. She thinks he knew that he had made a big mistake. But the follow-up MRI found two other spots, which they refused to biopsy, saying it was unlikely to be a different cancer. Kerry’s partner was appalled and wanted her to get a second opinion at an academic comprehensive cancer center. Kerry wanted to trust her doctors. Knowing the statistics, she went with her partner’s suggestion—and is grateful she did! The comprehensive cancer center, by contrast, biopsied everything, including the lymph nodes which discovered a separate cancer. Genetic testing found she has a mutation on her ATM gene. Kerry remarks, that she is rare—to have breast cancer at her age, two different cancers, and the ATM gene mutation. It turned out ATM-related cancers were in her family.

Kerry was very anxious that first week. All of the “unknowns” were “beyond scary.” So much information was given respectfully so she could make an “informed decision” with a high sense of urgency. Ultimately wanting to live, everything else came down to “does this really matter?” Chemotherapy side effects—losing her long beautiful hair, weight gain, fatigue, reactions—at the time were minimal compared to living to raise her small children. Her treatment started with a Taxotere and pertumuzab chemotherapy cocktail to shrink the tumors. It was rough and exhausting. A double mastectomy with reconstruction made sense given her risks—as a bonus the symmetry allowed her to feel beautiful and more natural. She gets immunotherapy every three weeks and just started tamoxifen.

Kerry is lucky. Had she “not had that second opinion,” the local clinic would have treated just one cancer leaving the other one to spread. In the midst of a divorce from her husband of over a decade, she had a very supportive and loving partner. Their kids were loving and resilient during her treatment and recovery. With her two dogs, Kerry notes she has a big family with lots of love. As a highly independent woman, Kerry wrestled with accepting help from her friends and family. But she came to realize that she was helping them by accepting their help. Kerry has adequate insurance and her partner’s income allowed her to close her daycare center, so she can focus on her health. She is fortunate to be surrounded by a beautiful landscape and to be able to plan for the future. She pays it forward by giving support to others with breast cancer. Now that she is through the toughest treatments, Kerry wrestles with some loss of self-esteem. She feels less beautiful being bald with a 20-pound treatment-induced weight gain. Fortunately, her loving partner says, “You're beautiful all the time, and you can pull off any look.”

Kerry notes that she always knew that life is short. She loved unconditionally and said, “I love you” to everyone she loved. She knew that she needed someone to love her like that, and she got a divorce and found that love. Cancer woke her up to her “life is short” mindset. She’s more likely to “preach it” and is much more appreciative of the smaller things, like the sun shining or hearing her kids’ laughter. She focuses on staying positive and being brave and a fighter for her kids.

 

Kerry was able to stop blaming herself for getting cancer.

Kerry was able to stop blaming herself for getting cancer.

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I had almost found comfort in the fact that it was genetic. Because before I knew, I was thinking, you know, I’ve done, I wear sunblock, and I eat all natural. And I, you know, I don't use things that have parabens in it. And I was very health conscious. And all you can think is, what did I do? What did I do wrong? I know that alcohol consumption, which I did not know before I had breast cancer, but a good majority of breast cancers are linked to alcohol, which I did not know. Not that I drink a lot, but, you know, I liked wine. I would have, you know, a couple of glasses at night. Not aware, but the genetic compound to that made, I almost found comfort in because I thought, this isn't something that I did. This is something that happened to me.

 

Kerry says she had to make a conscious decision to accept her own choices.

Kerry says she had to make a conscious decision to accept her own choices.

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For some reason, before I even found out I had cancer, I mean, I obviously knew people that had gotten cancer, and I said, that I just made that up in my brain that I was like, up in my mind, that I will get both of them removed. I mean, that was just-- but then when they told me I had a choice, then it was like, I wanted to do the right thing. And they did tell me that the chances of it coming back into your left breast, if you leave it, if we're constantly checking you, it’s pretty small. You know? But I still, I think I wanted symmetry, and I wanted to feel beautiful. And I knew that they do less scans on me if they just remove them both. And so that was another thing. You know, the idea that-- and then with the implants, you think about, are they going to still be able to see stuff with the implants in there? You know, that was a question that I had. There's so many things that you don't know, and you, you just have so many questions. But so I think there wasn't anything medically that said, you know, for sure you need to do this. So it just really came down to my personal feelings on it. And I had nursed three babies. So I had a little bit of saggy, you know what I mean? So I was like, I just want things symmetrical. And, but then, you know, I had that scare after the surgery. And I thought, if there's any kind of problems and I still-- like my right side looks more natural than my left side right now after my surgeries which is a little bit frustrating. Because it's like, did I really have to do that? Was that necessary? You know? I almost made it worse. You know what I mean? And then-- but I think you just kind of got to make a decision and stick with it and be confident and happy in the decision that you made.

 

Kerry wonders if talking with loved ones about death is useful or not.

Kerry wonders if talking with loved ones about death is useful or not.

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And there were times where I would-- my mind would kind of, you know, go to the negative. What if, you know, what if I do die? And my partner would say, “Stop. Don't go there.” You know? “That's enough. Like, we’re, you're going to fight.” And my sister said the same thing. Like that's just not even an option. I mean, but then I would say, “Well, what if it is? I mean, what if that does happen? We need to talk about it.” Or I wanted to like have something planned out just in case. But at the same time, you just don't want to go there, because you can't let yourself go there. Because if you do, then what if it does happen? You know what I mean, like almost like I said before about willing yourself healthy. It's like I'd rather just stay in the positive and stay in the light and think that way.

 

Kerry says her partner is a fierce advocate on her behalf.

Kerry says her partner is a fierce advocate on her behalf.

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She had that urgency probably more so than I did. And it was, “You need to get in there.” I felt something? “You need to get in there. You know, there's no waiting on this.” And then there's the doctor saying, “It's probably this. You're young. You're healthy. You don't have any family history” that I knew of. So, to them, it was, you know, “You're young. You're fine. Whatever, just wait.” To her, it was “I've been through this. We're not waiting.” And then there was a point where she even got into a fight with the nurse navigator from [LOCATION] because she said, “Well why can't you do a biopsy of the lymph nodes, or remove them surgically to find out what's going on?” And she said, “We don't do that typically.”

 

Kerry says she deals with her anxiety about uncertainty by learning about other patients’ experiences, and also trusting that her doctors “know what they know” and will do their best to help.

Kerry says she deals with her anxiety about uncertainty by learning about other patients’ experiences, and also trusting that her doctors “know what they know” and will do their best to help.

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Sure. I think that's a part of the being anxious, is the uncertainty. And dealing with it is, that's a good, that’s a good other question. Because it does come up. I think keeping yourself busy and informed. So I did do a lot of my own research, which is, they say not to do. Because then you're finding things which steer you down the wrong way. And so I think at one point, one of the doctors did say, here's a list of great research places to look at that actually have very well documented information. Because I was going on, I was going on websites where women were actually talking about their experiences just like on blogs. To me, that's where I found my information. Because it was a first hand, this is what I went through. You're not hearing somebody’s second opinion, or this is what the studies say, or whatever. This is somebody's firsthand word at what they're going through and what's happening. Which to me, when you're going through it, you have all these questions and all these concerns and everything running through your mind. And all those uncertainties that you're, I don't know. But you, I did want to find somebody with my exact situation. And it, that’s just, it just isn't out there. You know what I mean? So it's hard. Because you’re, you do have those uncertainties and these things that you question. Because, and you look for the answer, but you're probably not going to find the answer, because no one has been in your position. So, I think the best idea is just to stay as informed as you can about your situation, and also have that trust in the doctors, that they do know what they know, and they went to school, and they, you know, they have experiences where they can help you. But also staying busy, keeping your mind occupied with other things.