Peggy
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Peggy found a painful lump in her left breast in her 30s and “blew it off,” because she thought “breast cancer doesn’t hurt.” At her mother’s insistence, Peggy went to her local doctor, who said cancer was unlikely but ordered a mammogram and an ultrasound. A few days later, the radiologist at the cancer clinic in her rural community told her she had breast cancer. Peggy thought “no, it can’t be” – she had felt safe because the family history was, “all on my dad's side.” The biopsy indicated Stage 2 cancer and Peggy pushed for a referral to the comprehensive academic cancer center more than an hour’s drive from her home. Shortly after, Peggy tested positive for a mutation on her BRCA1 gene. Learn more about Peggy’s experiences with inherited cancer risk here.
Given her high genetic risk and young age, Peggy opted for aggressive treatment, which started with chemotherapy infusions, and then moved onto radiation with oral chemotherapy, and eventually surgery. She had wished for a bilateral mastectomy and reconstruction, but with risks for infection, she had a left mastectomy and oophorectomy. She made plans to have the right mastectomy and reconstruction, but within months, her cancer had advanced to Stage 4 metastatic disease. So, Peggy declined those procedures. She takes oral chemotherapy to keep the cancer from spreading and knows there are a couple of medications to try if this one fails. Peggy’s workplace insurance covered genetic testing, cancer screenings, and treatment however she cannot buy into cancer and short-term disability insurance. Cancer treatment has set her back financially, so her friends hosted a benefit to help pay her deductibles for the next few years. Her family and co-workers have supported her in emotional and practical ways, but Peggy finds it hard to accept help.
At the age of 36, Peggy, tries to balance planning to live a normal life and planning for the possibility that cancer will shorten her life. Right now, she feels remarkably well with no medication side effects and with her full head of hair. She is focusing on good things: work, friends, family and especially her young nephews, home remodeling, and making travel plans. But living with an uncertain and possibly curtailed lifespan is a little “freaky.” Even if she has 10 more years, she’d still only be in her 40s. Cancer certainly changed her “life plan,” and Peggy is frustrated that her family and friends don’t want to listen to these fears. She notes when she broaches the topic, people say, “you'll be an old lady when you die.” She understands people’s reluctance to go there, but she feels isolated when people talk about retirement because she “might not make it to retirement.” Still hoping for a cure or a miracle, Peggy continues to pay into her retirement accounts.
Peggy wants to dispel some myths that could get in the way of early diagnosis and treatment—especially for young women with breast cancer. “They say… cancer doesn't hurt, but it can” and “they always say if it's on your dad's side you should be OK, because it carries through your mom's side… that's not true.” Young people surely get breast cancer. “So if you find a lump, get it checked!” And to friends and family, Peggy asks them to listen and to know that fears are normal.
Peggy speaks to her aunt.
Peggy speaks to her aunt.
And I talk to my aunt a lot, too, after that, because she went through the same thing as I am. So, I asked her questions and she gave me advice. So.
Was it helpful?
It was. Whether or not I followed it all, probably not. But, yeah, she told me what to ask, you know, and what to look out for, side effects. You know, what helped her.
Peggy describes the many steps involved in getting her medication.
Peggy describes the many steps involved in getting her medication.
You didn't really have too many issues with your insurance. How has that been now with this re-diagnosis?
It's been decent. There was a little hiccup with the medication at the beginning, because they didn't want to approve it. So, it took an extra couple days, which, you know, seems like an eternity to me. To them, it's nothing. But they finally approved it. But they only approved 15 days' worth for the first three months. So, then you had to keep calling every other week to have it mailed to you, because I can't run to [LOCATION] for a prescription every other week.
Is that still what's going on? You have to have it renewed, or did they…
No, after the first three months, now I can get it monthly, which is nice, because one- there was one issue, where I was getting it every other week, where they sent it out late. And then they told me- then I had to sign for it, which they didn't tell me I had to sign for it, because every other time, I didn't.
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So eventually, I got it. But that was like, I'm the person that I would call every day if I don't get a call back.
Peggy’s diagnosis changed her whole life plan.
Peggy’s diagnosis changed her whole life plan.
I finished my oral chemotherapy and went on vacation. Came back from vacation, and I was having difficulty catching my breath. And when I did take a deep breath, I was having some pain. So, the oncologist told me to go to the ER and get that checked out. It came back that the cancer had spread. So, that's back at Stage 4, and there's no cure for it anymore. It won't ever be in remission. I could have 10, 15 years. They don't know. So, that's freaky a little bit because I'm only 36 now. That's still way too young. You know, ten years, I'm in my 40s. It's changed my life plan, you know?
Peggy worried about stigma and didn’t find the therapist she saw very helpful.
Peggy worried about stigma and didn’t find the therapist she saw very helpful.
There are some places here in town, but since I work with them, I really don't want to go around some places here. Because sometimes you still get that stigma of, “Oh, you're going to see somebody. There must be something wrong.” And I don't want people to look at me differently, which I feel like they might. So, I'm looking, you know, at the surrounding areas to see if I can see somebody.
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I did try the therapy thing with somebody else. And I just, didn't really care for her approach, maybe. Maybe it'll be different, because they're specialized in cancer patients. So maybe that will be a little bit different. I don't know. But I've tried the whole therapy thing with somebody else. And it just didn't, wasn't very comforting, it wasn't what I was looking for. I don't know.
What would you hope to get?
Maybe some confirmation that this, what I'm thinking, and feeling is what normal is. I don't know. Like, there's nothing wrong with, what I'm thinking or feeling or my approach. Because sometimes my friends, like, when I want to talk about, you know, they're like, “Don't talk like that. You'll be an old lady when you die.”
Peggy wants to look and be like her old self.
Peggy wants to look and be like her old self.
I'm looking forward to being back to my normal self. I want to be as close as I was before this all started, at least appearance-wise. Like, you know, with the hair and the reconstruction, I just want to look as close as possible to what I was before this all started. Because then I feel like I'll be back to normal and then I can put it all behind me and just move on.
Peggy wants to avoid being a burden to her family.
Peggy wants to avoid being a burden to her family.
The doctors can't give a time frame. So, I think that's what's, that’s what’s the scary part, because, like, do I have 10? Do I have 15? Do I have less?
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Do I start putting money aside for the funeral? I try not to think like that. But I don't want the burden for my siblings to take care of all this stuff.
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I try not to think about it, because they don't want to. But, you know, I'm a planner. I have to make sure everything's in order for them, because you have to get all this stuff, you know. I have all this stuff, the house, my retirement, my state retirement, you know, bank accounts, all the stuff.
Peggy’s family and friends weren’t comfortable with conversations about death.
Peggy’s family and friends weren’t comfortable with conversations about death.
Sometimes my friends, like, when I want to talk about, you know, they're like, don't talk like that. You'll be an old lady when you die.
How does that make you feel when people do that to you?
I get it, because I don't think they want to talk about it. Then sometimes I feel like, this is the feeling I'm feeling. You know, and they talk about retirement. And I'm like, I might not make it to retirement. That's a possibility. But then there's a possibility I will. So, I'm still planning for retirement. I'm still paying into my retirement accounts and-but who knows.
Peggy wishes her doctors had been clearer about what they didn’t know.
Peggy wishes her doctors had been clearer about what they didn’t know.
I was hoping they would have more answers. But then they don't know how much time anybody has. And it's not an exact science. I wish they would've told me that, really. Like, each person is different. So, we're going to try this and see if it works.
Did you think it was an exact science? Were you surprised?
I was surprised, because I thought, you know, we did the chemo. We did the radiation. We did the oral chemo. And I thought, oh, we’re going to be good. And I asked, you know, she said it was very unlikely that it would spread within the first year. And it did.