Chelsea

Age at interview: 30
Outline:

Chelsea was diagnosed with a rare form of breast cancer called mucinous carcinoma at 28 years old. Genetic testing revealed a mutation on her CHEK2 gene. She had a complete mastectomy, followed by reconstruction and hormone therapy shots, which she still gets on a monthly basis. Her diagnosis inspired her to change careers and she now works in cancer research and lives a very happy and active life in an urban city in the East, surrounded by a strong social and family support system.

Background:

Chelsea was diagnosed with breast cancer at 28 and currently lives in large urban city in the East and works in cancer research.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Identified breast cancer mutation

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Chelsea began experiencing some pain in her right breast when she was 28 years old. She made a point of going for a routine checkup shortly after the pain began, and of mentioning the pain to her doctor. The doctor was not “too concerned” given Chelsea’s young age, but proceeded to do an ultrasound and mammogram. A week later they biopsied the lump in Chelsea’s breast, and determined it was malignant. A second opinion and biopsy, obtained so as to assure “an abundance of caution” given her young age, confirmed she had mucinous carcinoma, a rare form of breast cancer. Chelsea’s grandmother had died of breast cancer when Chelsea was “a lot younger” however there were not any other “huge red flags” suggesting a pattern of inherited cancer in the family. However, because she was so young at diagnosis, Chelsea’s breast surgeon suggested she get genetic testing before making “any major decision regarding surgery.”

Chelsea’s genetic test results came back positive for a CHEK2 mutation. After this news, Chelsea went into “survival mode” and underwent a double mastectomy, as she didn’t want to have to “do that every sixth month thing” and constantly “worry about it.” Chelsea’s mastectomy was followed by a lengthy process of reconstruction. Chelsea had to take time off from her very active lifestyle as well as 5 weeks off from work but found that she “liked going to work” because it provided her with “a semblance of a routine.” Though Chelsea did not tell a lot of people of her diagnosis initially, the “word spread” quickly which took the burden of sharing off of her and she could focus on care instead. After recovering from her surgery, Chelsea searched for and found a new job that allows her to contribute to cancer-related research.

Chelsea received all of her care within a cancer center, so felt it was “a blessing” to have all of her doctors “under one roof.” Chelsea’s providers “were all able to access” her records, her appointments were all scheduled “together,” and her “bills were all consolidated” which “was awesome.” Looking back, Chelsea feels unsure how she would have “held it together” had there been “a lot more effort needed” from her “to coordinate all of that.” When after her surgery she discovered she would need monthly injections for at least 5 years, she emotionally “fell apart” at the prospect of having to revisit breast cancer so routinely and of difficult potential side effects. However, Chelsea also notes that a ‘long-term lack of estrogen” is not a “death sentence” or “the end” of her “social life or dating life.” Two years after her diagnosis, she finds things are “really manageable.”

Chelsea is “very happy” she did genetic testing and says the results really helped “make more of my other decisions.” Following identification of her CHEK2 mutation, Chelsea’s parents were tested as well, to help “inform” her “family members on one side or the other.” However, when Chelsea’s parents shared relevant results with other relatives, they found not everyone wanted to be “armed with that” information. In connection with genetic counseling and testing, Chelsea and her parents mapped out a family history and discovered they have a “very prevalent history of breast cancer” in their family that had never been apparent before they created a family tree.

Chelsea is “very close” with her parents and also has a “great support system of friends” who were with her “through it” so she sees herself as “super fortunate.” However, she notes that though “cancer’s hard” it is particularly difficult to see “what it does to the people around you.” Chelsea also feels it has been difficult “to broach all of this” around “potentially dating” and has worried about meeting someone with “all of this baggage;” she continues to be “working through that.” Chelsea is “pretty open” about her cancer, even with “newer acquaintances.” She does a lot of fundraising for breast cancer and likes to “spread awareness,” so felt like sharing “her story” for this website was a good way “to pay it forward.” Chelsea hopes her experiences illustrate the importance of listening to patients and taking them seriously even if they are young. Chelsea recommends others “take it one day at a time” and don’t hesitate to “rely on people.” She also advises bringing your “support system to your appointments” as your “note taker,” and finding peace in making a decision because it “will be the right decision for you at the time.”

 

Chelsea is surprised that some of her relatives do not seem to want information about genetic risk.

Chelsea is surprised that some of her relatives do not seem to want information about genetic risk.

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What went into the decision that your parents made to get themselves tested?
That's a good question. I guess so we could inform our family members on one side or the other-- you know personally, throughout the experience, and even if I'd had a more prevalent history of breast cancer, you know I guess I'm the type of person who would always want like more information rather than less. So just assumed that everyone else on either side of the family would also want to be armed with that info. Turns out maybe they weren't. But we would-- that was like probably the main impetus behind it, is that we'd want my female cousins and aunts on either side to know, also.

 

Chelsea says it was hard, but very moving, to see how her breast cancer experiences affected other people in her life.

Chelsea says it was hard, but very moving, to see how her breast cancer experiences affected other people in her life.

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Yeah. My parents were incredibly supportive. And again, they were physically there with me almost every step of the way. And I know, like most parents, they would have done anything for it to be you know them instead of me. But I think in a lot of ways, it made-- it almost made it harder sometimes, because I think for them, it sort of was harder to see your child go through something like this and to be more or less completely helpless in it. You know there wasn't anything that they could do about it. Meanwhile, when I-- and in my position, there's nothing that I can necessarily do about it, but I could you know go to the appointments and check all the boxes and do what my doctor told me. And at least there was some action for me to take. So even though I definitely had moments of helplessness, like at least there were tactical ways that I could sort of figure it out. Whereas my parents— you know they didn't really have the same options. You know they were just there to support me, for the most part. And obviously, my mom took care of me after my surgery and things like that. But I knew they had a really tough time. And I-- that definitely was like a tough spot for me, too-- for them to be like that upset. You know some of the nicest things that you know like my friends did was, you know they'd text my mom and be like, “stopped and saw [NAME] today. And then we got a drink after work,” or-- you know if they couldn't be with me at an appointment, which was few-- I could probably like count them on one hand the amount of appointments that they didn't go to. You know like a friend here would go with me and then sort of report back to my mom. And it was really nice when my friend would reach out to my parents directly, also, and be like, “so how are you doing you know throughout all of this?”
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So you know it's-- the cancer's hard, but it's really hard to see what it does to the people around you. 

 

Chelsea loved getting cards in the mail.

Chelsea loved getting cards in the mail.

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What are some ways that people reached out to you that you valued in particular?
I had a lot of cards, and that was nice, just seriously--
Like in the mail?
In the mail. And I remember -
Wow. The old-fashioned way.
The old-fashioned way. And a lot of them were funny or like very, very touching. You know I can remember a couple of them I remember in particular that were just like-- they made me cry. They were so sweet. A couple funny ones. I even received one or two from a friend of a friend who had also had cancer. So I didn't even know them personally, but they were like, “oh, I have cancer, and now [NAME] does, like I want to reach out to this person.” So that was awesome. You know I had them all on my wall in my bedroom for at least six months. It was just like a nice reminder.

 

Chelsea is grateful to her friends for reaching out directly to her parents.

Chelsea is grateful to her friends for reaching out directly to her parents.

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Yeah. My parents were incredibly supportive. And again, they were physically there with me almost every step of the way. And I know, like most parents, they would have done anything for it to be you know them instead of me. But I think in a lot of ways, it made-- it almost made it harder sometimes, because I think for them, it sort of was harder to see your child go through something like this and to be more or less completely helpless in it. You know there wasn't anything that they could do about it. Meanwhile, when I-- and in my position, there's nothing that I can necessarily do about it, but I could you know go to the appointments and check all the boxes and do what my doctor told me. And at least there was some action for me to take. So even though I definitely had moments of helplessness, like at least there were tactical ways that I could sort of figure it out. Whereas my parents— you know they didn't really have the same options. You know they were just there to support me, for the most part. And obviously, my mom took care of me after my surgery and things like that. But I knew they had a really tough time. And I-- that definitely was like a tough spot for me, too-- for them to be like that upset. You know some of the nicest things that you know like my friends did was, you know they'd text my mom and be like, “stopped and saw [NAME] today. And then we got a drink after work,” or-- you know if they couldn't be with me at an appointment, which was few-- I could probably like count them on one hand the amount of appointments that they didn't go to. You know like a friend here would go with me and then sort of report back to my mom. And it was really nice when my friend would reach out to my parents directly, also, and be like, “so how are you doing you know throughout all of this?”
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So you know it's-- the cancer's hard, but it's really hard to see what it does to the people around you.