November 12, 2019

As a health care reporter whose father is a scientist and sister is a doctor, Alexandra Glorioso, who last year was diagnosed with breast cancer, felt like "one of the best equipped people to navigate" breast cancer treatment, she writes in Politico Magazine. However, Glorioso notes that, "much of the time," she has felt "totally buried" while trying to "navigat[e] the system."

New infographic: Charting the cancer patient journey—from diagnosis to survivorship

The diagnosis

In August 2018, Brian Czerniecki, who leads the breast cancer department at the Tampa-based Moffitt Cancer Center, called Glorioso with the results of final lab tests that showed Glorioso she had Stage II cancer in her left breast. Glorioso's medical tests showed she had six tumors in her left breast, as well as three tumors in the lymph nodes underneath her left armpit.

Glorioso writes that, at that moment, she "breathe[d] for the first time in weeks and tune[d] out [Czernieck's] technical talk." The cancer was "Stage II," which she knew meant "the cancer ha[d]n't advanced far enough throughout [her] body to be seriously life-threatening."

The first big question: treatment options

Glorioso writes that, over the course of her first year of treatment, she had to make deeply personal and sometimes life-or-death decisions about her care. "While doctors can guide you through decisions, when it comes to breast cancer treatment, few will make them for you," she writes.

The first decision regarded her treatment. Glorioso's cancer feeds on estrogen, and her doctor recommended that Glorioso delay radiation and surgery, and instead undergo chemotherapy while enrolling in a clinical trial testing an experimental cancer treatment.

Glorioso agreed to meet with Czerniecki and her oncologist, Heather Han, to determine which clinical trial options available at the Moffitt Cancer Center—which is about four hours from where she lives in Tallahassee—were right for her, and whether she would prefer to forgo the experimental treatments, which might not work, and instead receive only chemotherapy at a Tallahassee hospital.

During a nearly hour-long meeting, Han explained the clinical trial options to Glorioso, including one that "involves some of the latest immunotherapy drugs and [a] second [that] has shown good preliminary results for patients with estrogen-driven cancer like [hers]," Glorioso writes.

Han then gave Glorioso two days to decide whether she wanted to enroll in one of the clinical trials, saying Glorioso needed to start her treatment soon, and noting that there is a possibility Glorioso might not qualify for the clinical trials.

Glorioso writes that, following the meeting, she weighed the pros and cons of each clinical trial with help from her father and then-boyfriend, now fiancé, Lawrence. She writes, "In my gut, I [was] leaning toward the [clinical trial] that has good preliminary results. It's a much simpler trial and would require me to travel to Moffitt less often."

However, her father, a geneticist who is involved in cancer research, called his colleagues to see their opinions, and one of her father's friends—Michael Lotze, an oncologist at the University of Pittsburgh—called her a few days later. During the call, Lotze explained to Glorioso the term "equipoise," which essentially means choosing the right clinical trial partially involves luck, because no one knows whether experimental treatments will work.

Ultimately, Glorioso decided to participate in the clinical trial with positive preliminary results in women with estrogen-driven breast cancer.

That wasn't the end of her choices

But Glorioso writes that, after deciding on her treatment option, she had other choices to make, as well. For example, Glorioso had to decide whether to be entirely treated at Moffitt or to find a local oncologist in Tallahassee. In addition, she had to determine whether she wanted to freeze her eggs for possible future fertility treatments, which would require her to produce estrogen and could cause her tumors to grow faster, or to essentially "put [her] ovaries to sleep" using a monthly shot, which would cause her to experience the symptoms of menopause.

Glorioso also had to decide on the method doctors would use to remove her tumors. She writes, "Czerniecki … want[ed] to just remove the tumors through a procedure called a lumpectomy as opposed to removing the entire breast through a mastectomy," but she had "reservations" about that approach. Glorioso recalls telling a nurse she was concerned that there would not "be any breast left" if she underwent a lumpectomy. On the other hand, "A mastectomy and reconstructive surgery are both far more extensive procedures than a lumpectomy," Glorioso writes.

Further, Glorioso writes that she also had to decide "whether to try and preserve [her] hair or to buy a wig or to go entirely bald" throughout her treatment.

And Glorioso still faces another major decision, she notes. "In five years, I will have another choice to make: Whether I'm going to stop menopause and have children. Getting pregnant would pump my body full of estrogen and potentially stimulate any micro tumors that are floating around in my blood, which are undetectable of course," she writes, adding, "I am not looking forward to that decision."

'Nothing … can prepare you'

Glorioso notes that, during the course of making decisions about her treatment, she received support from other cancer patients "who pass advice to one another—in [her] experience, over social media—about how to pick treatment programs and how to deal with their side effects.

However, she writes that "nothing—not even being a health care reporter, not even having a scientist as a father and a doctor as a sister—can prepare you for the immense number of complicated, sometimes life-or-death decisions the disease and the [health care] system force you to make about your own treatment, all on your own" (Glorioso, Politico Magazine, 11/10).

Charting the cancer patient journey—from diagnosis to survivorship

Cancer patients' expectations for their care are higher than ever before. And while demand for oncology services is rising with the aging population, so is competition.

In this infographic, we'v complied our top findings from the 2019 Cancer Patient Experience survey, so you can better understand patient priorities and preferences for care.

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