Carrie
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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In the past ten years, Carrie has been diagnosed with four independent cancers and tested positive for Lynch syndrome. The time between each cancer diagnosis has shrunk. In 2009, at the age of 44 with children ages nine and five, cancer in her left breast led to a single mastectomy with no reconstruction, chemotherapy, radiation and tamoxifen. She describes the treatment year as “grueling.” Her employer-based insurance covered 80% of treatment. But paying the difference forced this middle-class family into medical bankruptcy.
In 2014, she had surgery for colon cancer and tested positive for Lynch syndrome. In the testing process, she learned of several Lynch-related cancers in her family. She wrote to family members and urged them to get tested. In this day and age, “nobody should be dying of colon cancer,” she says, “it's so easy to avoid.” She worries about her children and tries to cultivate their sense of power. In 2017, during a routine colon cancer screening, she was diagnosed with early stage pancreatic cancer, which she describes as the “800-pound gorilla of cancers.” After surgery, she got an infection, and had chemotherapy due to lymph node involvement. Losing her hair was the hardest part of her cancer journey. It was big signal to the world, she recalls to “come up and tell me about the person you know who has cancer.” In 2019, when two different cancers were discovered in her right breast, she had a second mastectomy. She has since gotten a job that pays more and has better insurance. But with all her cancer screenings, she does not have enough leave time to attend a support group, to see a mental health provider, or to consider breast reconstruction surgery.
Carrie feels pretty good now but knows some day she will not. With a shorter and shorter time between each new cancer diagnosis, she plans five versus ten years out. She is opting for quality of life versus debilitating treatment for more quantity of life. When asked, “how long do I have?” her team estimated two and a half years (which she has exceeded). Everyone cried, she recalls, including her oncologist. With some irony, Carrie tries to not “beat” her mortality “to death.” She wants to be an example for her children of how to live well, and eventually, how to die well. She recalls a brief, matter-of-fact conversation with her young-adult daughter about her limited time horizon. It was really painful, but Carrie says, “it would be a disservice” to not talk about it. As her disease progresses, she acknowledges those types of conversations will need to get more personal.
Carrie firmly believes she is, “living with cancer,” and not “dying of cancer.” Close family, good friends and neighbors, writing, and continuing to work all help a lot. She takes time out from her busy life to cry and rail at the unfairness of it all and has little patience for people who whine about “inconsequential things.” After trying to coordinate so many treatment and screening plans from multiple oncologists and surgeons, Carrie eased her burden by asking just one physician to be her cancer “quarterback.”
Carrie describes a mistaken belief that her mother’s cancer couldn’t be genetic.
Carrie describes a mistaken belief that her mother’s cancer couldn’t be genetic.
Because my mom had her breast cancer at 64. Nobody else in the family had had breast cancer. So there weren't a lot of red flags. And again, it goes back to the insurance. I didn't have great insurance. I wasn't sure if it would cover testing, and I was thinking more the BRCA. And it just didn't seem, since my mom was at a more advanced age, and her cancer was caught early, she had a lumpectomy and radiation, and then she was great. And she didn't have another cancer until she was 86 years old. So at that time, I wasn't thinking genetic testing. And also, you know, perhaps if it had been a colon cancer at 44, for me and for I think my doctors, maybe that would have been more of a red flag. But I don't think breast cancer at 44 is that unusual. I don't know. I don't know statistically, but there certainly are a lot younger women who have breast cancer, you know, 30s and— So, yeah. No, it didn't really seem like something that was crucial to do at that point, just looking at family history.
After her third cancer is diagnosed, Carrie places a high priority on quality of life.
After her third cancer is diagnosed, Carrie places a high priority on quality of life.
But again, she and I had this discussion, too. Given my pancreatic cancer diagnosis and that prognosis, that’s going to surely enter into whatever we would decide for this. Because unlike 10 years ago, when it was like we're going to do everything to make sure this doesn't come back because I'm only 44, I want to live to be an old lady. You know, now, knowing that I have pancreatic cancer and that it's in the lymph nodes, it's like I don't have a 10-year plan, and I'm hoping I have a five-year plan. That would be great. But I’m not going to feel ill for a year, unless there's a really strong argument that that the payoff would be worth it. So I'm really, quality of life is much more important to me now, since quantity is shorter.
Carrie describes a “perfect storm” of financial woes.
Carrie describes a “perfect storm” of financial woes.
Yeah. So what was your insurance like, and has—how has it been over the—the course of all these episodes?
Mhm. Well, when I worked retail it was a little less comprehensive. So we basically were responsible for 20% because we were considered out-of-network. That was a lot. And also there was a recession, and there was just a lot going on. And, you know, I was hourly, so then when I did take off for FMLA, my job was safe, but I had no income.
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We did work with the hospital on their community care program and got some grants and some of those things were given. But in the end, we had to file bankruptcy or we were going to lose our house. We had to coach our kids not to pick up the phone when the debt collectors were calling. It was an eye-opening and humbling experience to go from a solidly middle-class family, and then just through the illness and the recession. And, it was kind of a perfect storm of things to go to where you're saying, “don't pick up the phone, kids.” And looking at your balance sheet and going “the only way we can save our house is to file for bankruptcy.” That's really hard. That's really hard to do when you've been brought up, you know, that you take care of yourself and you pay your bills and that's the right thing to do. So, that was a really difficult part of the ride.
Carrie appreciates the fact that pets never judge or criticize.
Carrie appreciates the fact that pets never judge or criticize.
And they just love you for where you're at. They're not looking at you going, really? Because you look all pasty.” Or, “What's with the hair? Where'd the hair go? Or what's that thing-- what’s that drain hanging from you? What is that?” It's just like, “You're my world from start to finish.” So I think pets are great. Great therapy.
Carrie worries that lack of public awareness leaves people with Lynch syndrome at higher risk.
Carrie worries that lack of public awareness leaves people with Lynch syndrome at higher risk.
We need to make a lot of noise. We just need to get the word out and people need to talk about it. And there need to be more Lynch Syndrome chapters and Lynch Syndrome International, because if one in 279 people have Lynch syndrome, and 95% of them don't know, that's a lot of people who are going to be hurt, or could be hurt, or could undergo, you know, unnecessary pain and suffering.
Carrie has a suggestion for how providers can be people with their patients.
Carrie has a suggestion for how providers can be people with their patients.
And that maybe, taking a moment to just, you know, even just share something personal about yourself, so that you seem like a human, too. So that you seem like a person, and not just a one-dimensional kind of, ‘alright, I am your doctor’. I don't know. I just think that human connection, because you're dealing with somebody at their most vulnerable.