Chelsea
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Chelsea began experiencing pain in her right breast when she was 28 years old. During her annual gynecology visit a few weeks later, she decided to mention the pain to her provider, figuring “since I'm going anyway, I might as well point it out to her.” Though her doctor was “very receptive” to Chelsea’s pain, she was not “too concerned” given Chelsea’s young age. Out of “an abundance of caution” due to her age, her doctor sent Chelsea for an ultrasound and mammogram, and a week later a biopsy confirmed a malignant lump. After receiving a second opinion, it was confirmed that Chelsea had mucinous carcinoma, a rare form of breast cancer, which was “sort of an odd finding.” As Chelsea was so young when she was diagnosed, her breast surgeon recommended genetic testing which revealed she has a mutation on her CHEK2 gene. Read more about Chelsea’s experience with inherited cancer here.
Chelsea went into “survival mode” and made the decision to have a double mastectomy, as she didn’t want to constantly “worry about it.” She was also thinking about her future appearance when making the decision to have both breasts removed, a decision she was “very happy with” because she “didn't want one breast to get old and saggy… compared to the other one.” Chelsea’s mastectomy was followed by a lengthy process of reconstruction, starting with expanders. Chelsea took several weeks off from work and had to take a temporary step back from her very active lifestyle. After 5 weeks off, Chelsea found that she actually “liked going to work” because it provided her with “some semblance of a routine.” Chelsea chose not to share her breast cancer news with a lot of people and instead just “let the word spread.” After recovering from her surgery, Chelsea searched for and found a new job that allows her to contribute to cancer-related research, which has felt gratifyingly “full circle.”
Chelsea received all of her care at a “very large cancer center,” and felt it was “a blessing” to have her providers all “under one roof.” Chelsea’s care team was able to “work very closely together,” her appointments were scheduled on the same day, and her “bills were all consolidated;” it “was awesome” to not having to worry about the “back and forth” because she’s not sure she “would have held it together” had she needed “to coordinate all of that.” After reconstruction, Chelsea was told she needed monthly hormone therapy injections for at least 5 years which is when she really “fell apart.” Between the possibility of “really unpleasant side effects” and having to revisit breast cancer every single month, Chelsea realized “all the other implications” that went along with this long-term treatment were “in a lot of ways, harder to deal with” than the procedures themselves. Chelsea discovered, however, that the ‘long-term lack of estrogen” is not a “death sentence” for her or her “dating life.” Two years after her diagnosis, she finds her side effects have been quite minimal compared with the “horror stories” she heard prior to starting treatment. She now finds the shots “really manageable.”
Chelsea is “fortunate” to have “incredibly supportive” parents and a “great support system of friends” who have been with her “through it all.” However, being so close to the people in her life “almost made it harder sometimes” because her loved ones felt “more or less completely helpless” while she was going through cancer. Though Chelsea is “pretty open” about her cancer, she is still “working through” how to “broach all of this” when to comes to dating and worries about meeting someone with “all of this baggage.” Aside from being open about her cancer experience, Chelsea does “a lot of fundraising,” which, for her, is a good way to “pay it forward” and “support others.” Chelsea hopes her experiences illustrate the importance of listening to patients and taking their concerns seriously, even if they are young. Though breast cancer can feel “very overwhelming,” Chelsea recommends others take it “one day or one hour, one minute at a time” and to not be “afraid to rely on people.” Though there are a lot of choices you need to make, which can make you feel “paralyzed” Chelsea wants others to know “whatever decision you make, it will be the right decision for you at that time” so “don't second guess yourself.”
Chelsea was only 28 years old when she felt pain in her breast. She is thankful that her doctor responded immediately to her concerns.
Chelsea was only 28 years old when she felt pain in her breast. She is thankful that her doctor responded immediately to her concerns.
I guess, when I was 28 years old, I went for my annual gynecologist visit. And a couple of weeks prior, I had had some pain in my right breast. I thought since I'm going anyway, I might as well point it out to her and see what she thinks. You know, she was very receptive. She said, "I do feel something there. It's probably nothing, but we'll send you just in case." Which I feel very fortunate about because I know a lot of other people my age don't necessarily get that reaction from their doctors. But she sent me for, I believe it was an ultrasound first. So, we did the ultrasound and then they did a mammogram. And, you know, they said, again, there's something there. We'll bring you back for a biopsy. So, I went back about a week later for a biopsy and the results came back malignant for something called a mucinous carcinoma, which is actually a pretty rare form of breast cancer. I don't want to misread the statistic, but it's like 2% or 3% of all cases, usually women that are in their 60's and 70's. So, that was sort of an odd finding.
Chelsea found both good and bad while participating in a Facebook breast cancer support group.
Chelsea found both good and bad while participating in a Facebook breast cancer support group.
Yeah. So, I guess in that aspect, it was a little bit of a double-edged sword because I got a lot of information about people's experience with the different types of implant methods, or even just reconstruction in general. You know, I got to read a lot of different people's point of view. And it is, I won't say it's what made me make one decision or the other, but it definitely informed me when I did make that decision. But at the same time, people were also asking questions about, you know, the tamoxifen, or Lupron and Aromasin, and how people in this Facebook group were handling it. And you did have a lot of people come out and say, "This was really difficult for me. I have terrible joint pain," you know, "and vaginal dryness," and all of those types of side effects. So, reading all of those things definitely made me cautious. So, I mean, it's sort of just, you had to weigh everything, I guess, that you were reading in these groups.
Chelsea had cancer in one breast but decided to have both removed.
Chelsea had cancer in one breast but decided to have both removed.
So, from there, they presented me with my options. They would definitely recommend at least a mastectomy on the affected breast because I was smaller chested, and the tumor was pretty substantial. And they said, a lumpectomy - it would be deformed, essentially. So, you know, I was thinking, do I want single or double? And then I got my genetic test results back, and I tested positive for a CHEK2 mutation. And the way my genetic counselor described it was that, you know, it's not as damning as a BRCA mutation, but you know there's some evidence coming out that there are ties to this, combined with some breast cancer history. They would support me if I wanted to go with the double. So, that's what I did. You know, I was kind of thinking that I was only 28. So, I just didn't want to do that every-six-month thing, worry about it. Part of me was a little vain, also, you know. I didn't want one breast to get old and saggy, or if I gained or lost weight, compared to the other one. So, it was definitely, I was very happy with my choice. I don't have any regrets about doing that. But I had a double mastectomy.
Chelsea is pleased, and surprised, that side effects from her hormone therapies are mild.
Chelsea is pleased, and surprised, that side effects from her hormone therapies are mild.
So again, like, very lucky they've been minimal compared to a lot of the horror stories that I had beforehand, which, like, I think was also why I had that initial reaction. You know, I'm hot all of the time - so many hot flashes. I have to wear T-shirts in the middle of winter. But other than that, you know, everything's been really manageable. And again, that's another reason why I feel very, very lucky. You know, going back and getting the shot every month, you know it's not pleasant, but it's manageable. I should say that like now that I've been on this regimen for two years like, I'm handling it a lot better than I thought I was going to. You know, there's still challenges, but it's not like the death sentence that I thought it was going to be - no end of my social life or dating life or anything like that. So it is manageable.
Chelsea says she "fell apart" when she realized that hormone therapy would be necessary for many years.
Chelsea says she "fell apart" when she realized that hormone therapy would be necessary for many years.
Because I had hormone-positive cancer, you know, the two main options are tamoxifen or, you know, Lupron and Aromasin. The team explained to me the difference between the two, you know, how essentially they work in your body. And then they didn't necessarily give me an option. My oncologist consulted with, you know, her counterparts, and I think ultimately they all decided, or they all agreed that because of my age, Lupron and Aromasin would be a better treatment. And we just skipped the tamoxifen altogether. And the strange thing was when they called and told me, you know this is the route we're going to go down, that was really when I fell apart. Which is so, it was not what I was expecting because, obviously, there were definitely emotional times through all of my surgeries and stuff. But for the most part, I could handle it because it was sort of like the next thing, just check the box. You'll get it done. It'll be done. And then when they told me about, like, the monthly injections. That was the part I was like, "Oh, crap." Now I have to go back every single month to do this. And when I asked how long, they said, you know, like at least five, but the longer, the better. So, I think that was just very daunting. It's like you're never going to get past this, kind of. It's just something that you'll have to revisit each month - for better or worse.
Chelsea's doctor acted right away when she reported a new symptom.
Chelsea's doctor acted right away when she reported a new symptom.
And then, I guess, when I was 28 years old, I went for my annual gynecologist visit. And a couple of weeks prior, I had had some pain in my right breast. I thought since I'm going anyway, I might as well point it out to her and see what she thinks. You know, she was very receptive. She said, "I do feel something there. It's probably nothing, but we'll send you just in case."
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But she sent me for, I believe it was an ultrasound first. So, we did the ultrasound and then they did a mammogram. And, you know, they said, again, there's something there. We'll bring you back for a biopsy. So, I went back about a week later for a biopsy and the results came back malignant for something called a mucinous carcinoma, which is actually a pretty rare form of breast cancer.
Chelsea describes the well-coordinated care she received at a cancer center.
Chelsea describes the well-coordinated care she received at a cancer center.
But then once I went for the second opinion, and you know I ended up staying with that team of doctors. It was, I don't want to say easy or simple, but it was very convenient, having them all under one roof. Like, I cannot emphasize enough what a, I hate to say the word ‘blessing’, but what a blessing it was to be a part of, like, a cancer center like that.
Yes.
Because again, going back to those Facebook groups and stuff, of having, some people were commenting on having to transfer records from one practice to another, or all the different bills coming in from different areas and things like that. So, for me to have my team of doctors all pretty much in the same building and they were all able to access my records. There was none of that back and forth, and trying to get things - copies of things. Even bills were all consolidated, which is something like you don't want to think about during cancer treatment. So, you know, that was awesome. I know even the things like they would try to like schedule my appointments like, together so I wouldn't have to miss that much work during it. So, they'd be able to see I had an upcoming appointment with my plastics nurse, that I could do like my pre-surgery bloodwork at that time and things like that. So, I don't know how I would have held it together if there was a lot more effort needed on my part to coordinate all of that.
Despite her worries, Chelsea successfully returned to dating.
Despite her worries, Chelsea successfully returned to dating.
I was 29, I guess, at that point. And, you know, I'm still single. You know, I had no boyfriend at that time. And that was one of the things I was thinking of, is like, "Oh, crap," like, "Everyone says it's awful, it's painful, you don't want to have sex anymore." And I was like, "I am never going to meet someone with all of this baggage." It's not about the cancer and the fake boobs, but now, like, that's a big part of a relationship. So, to sort of take that away, that was very tough for me. It was very overwhelming to think, you know, ‘How am I going to broach all of this, with any man that I'm potentially dating?’ Still working through that. You know, it's tough.
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I should say that now that I've been on this regimen for two years, I'm handling it a lot better than I thought I was going to. You know, there's still challenges, but it's not like the death sentence that I thought it was going to be - end of my social life or dating life, or anything like that. So, it is manageable.
Social media helped Chelsea make decisions about treatment.
Social media helped Chelsea make decisions about treatment.
Social media played a big role in decisions. I immediately joined a couple Facebook groups where it was different young breast cancer survivors and thrivers. I remember in the beginning; I spent so long just scrolling through all of those messages and posts. Searching for over the muscle versus under the muscle implants, and what different doctors suggested, and what was your Oncotype score, things like that, a lot. My family, my friends were definitely there for the emotional part of it. But for the actual, like, I have cancer, can you relate to this; I found a lot of comfort there and information.
Chelsea is thankful for the pink ribbon, but it raises many questions for her too.
Chelsea is thankful for the pink ribbon, but it raises many questions for her too.
So, there's a lot of public acknowledgment around breast cancer with the pink ribbon, and a lot of public awareness. How do you feel about that, when you see the pink ribbon or it's Breast Cancer Awareness Month, that kind of thing?
I'm for the most part okay with it. I think October can get a little bit overwhelming. You know, when it's November 1st, there's sort of, like, a relief that you don't have sort of those, like, constant reminders. Especially some of the more, like, insensitive types of campaigns that you sometimes see around Breast Cancer Awareness Month. You know, I'm sort of the opinion that, you know, the more awareness, the better, no matter the form it comes in. It definitely does frustrate me when I'll see people or brands putting a pink ribbon on something and really not tying it back to anything other than just, like, a way to generate more sales. But, you know, there's no actual donation on the back end or things like that. You know, that's rough, because you know my personal experience was very difficult, and it's not for you to just use as like a marketing ploy. But I do think those are probably few and far between, I would hope. You know, most things are backed in like some way or another, I would hope. I was reading something online - I don't remember what it was - and I think it was some sort of resource for young adults with cancer, all types of cancer. And, you know, someone made a comment that, oh, gosh. I'm trying to remember what the exact comment was but, basically, the thought was, you know, they were feeling sad that they didn't get a cancer like breast cancer that has all this awareness and research, and money, and fundraising going towards it. You know, they were sort of like, "Well, why didn't I get breast cancer? Like, everyone knows about that, and everyone campaigns for that," and things like that. And it was just something that I had literally never thought of. And I felt bad about it—I felt, like, really bad about it, that I got the type of cancer that people rally behind. Whereas there were so many other types of cancers that young adults get, or old people get, that people don't know about and people don't do anything for, and they just fall by the wayside, kind of. And ever since I sort of heard that or read that, definitely been more cognizant of all of the awareness around breast cancer, and I'm thankful for it because it is my personal story. But at the same time, it's spread it out for some of the other diseases out there.
Chelsea says that not everything in her life is cancer.
Chelsea says that not everything in her life is cancer.
It doesn't have to be all cancer all the time. You know, I still went out in between my surgeries, you know, for drinks with friends or out to dinner. You know, it wasn't like I suddenly became a hermit.
Chelsea displayed her cards on her bedroom wall.
Chelsea displayed her cards on her bedroom wall.
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 very touching. You know, I can remember a couple of them in particular that 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 had cancer in one breast but decided to have both removed.
Chelsea had cancer in one breast but decided to have both removed.
So, from there, they presented me with my options. They would definitely recommend at least a mastectomy on the affected breast because I was smaller chested, and the tumor was pretty substantial. And they said, a lumpectomy - it would be deformed, essentially. So, you know, I was thinking, do I want single or double? And then I got my genetic test results back, and I tested positive for a CHEK2 mutation. And the way my genetic counselor described it was that, you know, it's not as damning as a BRCA mutation, but you know there's some evidence coming out that there are ties to this, combined with some breast cancer history. They would support me if I wanted to go with the double. So, that's what I did. You know, I was kind of thinking that I was only 28. So, I just didn't want to do that every-six-month thing, worry about it. Part of me was a little vain, also, you know. I didn't want one breast to get old and saggy, or if I gained or lost weight, compared to the other one. So, it was definitely, I was very happy with my choice. I don't have any regrets about doing that. But I had a double mastectomy.
Chelsea decided to remove both breasts because she has genetic cancer risk, and also because she thought it would look better in the long run.
Chelsea decided to remove both breasts because she has genetic cancer risk, and also because she thought it would look better in the long run.
So, from there, they presented me with my options. They would definitely recommend at least a mastectomy on the affected breast because I was smaller chested, and the tumor was pretty substantial. And they said, a lumpectomy - it would be deformed, essentially. So, you know, I was thinking, do I want single or double? And then I got my genetic test results back, and I tested positive for a CHEK2 mutation. And the way my genetic counselor described it was that, you know, it's not as damning as a BRCA mutation, but you know there's some evidence coming out that there are ties to this, combined with some breast cancer history. They would support me if I wanted to go with the double. So, that's what I did. You know, I was kind of thinking that I was only 28. So, I just didn't want to do that every-six-month thing, worry about it. Part of me was a little vain, also, you know. I didn't want one breast to get old and saggy, or if I gained or lost weight, compared to the other one. So, it was definitely, I was very happy with my choice. I don't have any regrets about doing that. But I had a double mastectomy.