Eve
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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Eve grew up in a small rural community with aspirations to pursue higher education. Despite her many health problems from an early age, she excelled in school and went on to university, marriage, and a career near a big city. Her recent discovery that she has Cowden syndrome, a rare genetic mutation associated with polyps and several cancers, put her “unusual” mix of lifelong health problems in perspective.
In middle school a “huge goiter” led to a diagnosis of hyperthyroidism and a prescription for medication. A diagnosis of thyroid cancer during college resulted in a thyroidectomy followed by radio-iodine therapies. Eve recalls that even though she was “of age,” the doctors interacted not with her, but with her parents who carried the insurance. After graduation, Eve found blood coming from her nipple and obtained high-risk insurance. Breast biopsies found non-malignant papillomas. Once married she was diagnosed with polycystic ovary syndrome (PCOS) and possibly pre-cancerous cells. A hysterectomy found no cancer. But her dashed hopes for children sent her into a deep depression.
Recently, Eve’s brother was diagnosed with metastatic colon cancer and tested positive for Cowden syndrome. Eve also tested positive for Cowden syndrome, which in women presents in the thyroid, breast, and uterus—and numerous polyps showed up in her digestive tract. She notes that the discovery of her and her brother’s Cowden syndrome opened communication within the family. With so many physical health problems, Eve has had depression throughout her life, which she treats with medication. She found therapy helpful in the past. Her circle of friends and family support, humor, writing and storytelling, and her pets have all helped her.
Insurance coverage has posed problems throughout her adult life. For a while she relied on insurance through the Affordable Care Act and worries that it might be taken away. Eve is angry that her doctors missed so many opportunities to connect the dots. She says they see her only as a “fat woman in a gown,” and that it is easier to suggest a Mediterranean diet rather than “to take five extra minutes.” Given her rare condition, Eve wishes health care providers would once in while “look for the zebra,” rather than always assuming the horse.
Eve’s genetic counselor walked her through her family history.
Eve’s genetic counselor walked her through her family history.
And basically, what happened was we went through my family tree, starting with my grandparents. And we talked about if they're still alive. No, they died at, you know, what age they died at, what did they die of. We talked about my parents, the health they were in, what health issues they've had. For example, I forgot my mom had uterine cancer in 2012. So she would have been, I don't remember, like 66. Yeah, she would have been 66 in 2012, or 65. This was before her birthday. So we did that. And then we went through, my parents are from, you know, Catholic Baby Boomer-boomer era family. So we went through, my dad has two brothers and three sisters, and all their health issues. And then my mom has five sisters and one brother, and all their health issues, and their kids.
Eve learned her test was positive from a voicemail.
Eve learned her test was positive from a voicemail.
I got a voicemail on my phone saying that I had it. I just…. If genetic counselors out there listen to this, you know, say “hey, call me back.”
Eve felt a wide range of emotions when learning about her cancer risk after genetic testing.
Eve felt a wide range of emotions when learning about her cancer risk after genetic testing.
How did that feel to you, to get the information that this is something else?
Initially, there was relief. Then there was anger. And now it's just kind of a sense of wondering, you know, when-- I still have my breasts, and I, depending on what you read on the internet, I have a very high chance of having breast cancer eventually. So it, you know, it's a sense of when’s it going to happen? I hope it doesn't progress to Stage IV before something is found within me.
Eve says she is rare, maybe because other people have not yet been tested.
Eve says she is rare, maybe because other people have not yet been tested.
It's something that is, you know, that only one in 250,000 people has or something like that. Yeah, that would be a zebra.
But that one, or that…
Right, it's me. Yeah.
…that zebra can be. When you when you first heard that word, did you-- how did you feel to say, ‘oh, I'm a zebra?’ Do you identify with that kind of sense of something rare?
Being rare? No, I don't, because I've tried to not to let it overtake my whole life.
Correct. Yes.
But I mean, now that I'm thinking about it, yeah, I am. I am rare...You know, it may, once genetic testing becomes a big thing in the American public, it may only be one in 25,000 instead. And I guess I feel like, when I'm when I’m up on myself, that I am rare in good ways, so that I could be rare in, you know, kind of detrimental ways, too. Again, well, it's not it’s not totally detrimental, but it, you know, it has been, sometimes.
Eve has had several different kinds of insurance and also has been uninsured.
Eve has had several different kinds of insurance and also has been uninsured.
In 2002, I was done with college, you know, again with the-- you know, I had the breast tissue-- no, this was even before the breast tissue, my dad wanted me to get on health insurance, even like a catastrophic plan. And I went to go see his insurance agent. And he said, “you had thyroid cancer, no way.” And I kind of figured at that time, well, I just have to be really careful. About six weeks after that, the breast tissue made itself known. So, I investigated. I investigated nonprofit things that I could do, because I was making oh, god, what was I making-- like $10 an hour. Maybe it was $8 an hour. It was, you know, crazy low, so I couldn't pay full price. Or, you know, I couldn't pay cash to get this stuff looked at. And I was too young and became too much to get that. And my dad, I don't know how my dad found out about the high-risk insurance, but he- you know, we got set up with that. And then I could go to [LOCATION] to be treated, and, have insurance to have the bilateral biopsy done. Let me think. Then I was without insurance from 2005 to 2007. But things were pretty quiet then. The only thing I really maintained was, blood test for my thyroid levels, but that was enough. You know, that was still pricey enough to pay for out of pocket. 2007 to 2016, I was insured. And then in 2016, my husband lost his job. But luckily, you know, we had the Affordable Care Act to go onto.
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The plan I had from 2016 to this year, or to late 2018, once the genetic issue made itself known, I found a breast surgeon at another major research institution who specialized in breast disorders. And I called to make an appointment. And they were, like, “you know we don't take your insurance.” And I cried. And, you know, then I called around to other big institutions and they didn't take my insurance. So that's why I go to this health care system near where I live. And I was very open about what was happening. I haven't been as fast-- like, when I was on the Affordable Care Act plan, I wasn't as fast to get stuff looked at.
Because?
Because, you know, I was in denial. And I was nervous about would this plan pay for it? Would the specialists that they would want me to see take the insurance? Things of that nature. But I mean, I love the Affordable Care Act and I hope it never goes away.
Eve is both relieved to know Cowden syndrome explains her many health problems and angry her doctors failed to listen to her concerns earlier.
Eve is both relieved to know Cowden syndrome explains her many health problems and angry her doctors failed to listen to her concerns earlier.
I went to doctors and they were, they kind of ignored me. And when I discovered that I had this genetic issue, I was pretty angry.
Why were you angry?
Because they made-- the doctors that I saw made it about my weight. And, you know, it was just about my weight. And, you know, when I had the hysterectomy issue going on, I was already in the system, because I was still having issues with my breasts. But the breast surgeon that I saw I did not want to do other breast surgeries, because everything had been benign. And they could have done some googling. You know, they could have looked further. And I was just, you know, the fat woman in a gown, you know, sitting on the table. And it's just easier for them to be, like, “have you looked into a Mediterranean diet” than to take five extra minutes. And I know that these doctors are overworked, and have to deal with insurance you know, seven out of 10 hours of their day. And I know that it's hard. But I kind of, I'm going to be selfish here and say that I’m worth it to the people that I see outside of outside of a medical setting. You know, I have a lot of roles that I play to a lot of people. And I know that a lot of-- you know, everybody's worth the extra mile.
Eve was badly impacted when her doctor advised her to have a hysterectomy.
Eve was badly impacted when her doctor advised her to have a hysterectomy.
I really, really freaked out, because, you know, you hear of women who are, like, “I knew I never wanted to have children,” and that's fine. I always wanted to have children. And I went through a real deep depression, because she was, like, “You have to figure out your fertility right now, because I want you to have a hysterectomy.” And my husband was kind of like, oh, you know, “I never wanted to have kids.” I'm like, “Thank you for telling me this. You know, we had been married for, like, three and a half years.”
Eve emphasizes that increased risk is not the end of the world, but having a good team of clinicians is key.
Eve emphasizes that increased risk is not the end of the world, but having a good team of clinicians is key.
What is it that you would want people to know about somebody living with a rare illness like you? What is it that you want them to know?
That I am just like them. I just go to the doctor more often. And I'm a little more anxious about the future, you know, or just about the future for different reasons. I live with my husband, and I have my menagerie, and I go to work at the insurance office. And I'm just at the doctor's office more often, and more attuned to changes in my body.