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This Is Cancer: The Changing Face of the Patient Experience

TON - February 2020, Vol 13, No 1 - ACCC
Meg Barbor, MPH

Orlando, FL—Today’s patient with cancer is concerned with more than just cell counts. These patients want to discuss topics such as parenting, financial toxicity, and sex and intimacy, according to Laura Holmes Haddad, author of This Is Cancer, and a cancer survivor.

Ms Haddad’s book is a “what to expect when you’re expecting” take on cancer diagnosis and treatment, and one that she wrote in response to the overly earnest, somber, cancer survival books she found after her own diagnosis.

Whereas the adolescent and young adult patients are somewhere between teenage years and early adulthood at diagnosis, those aged 30 to 55 years at diagnosis are firmly in their adult years.

“We are what I call the ‘modern cancer patient,’” she told attendees at the Association of Community Cancer Centers 2019 National Oncology Conference. “We might skip the wig when we go bald, or we might use cold caps to save our hair. We might take Lyft or Uber to chemotherapy appointments, use Facebook and Twitter to meet other patients, and GoFundMe to help with medical bills. And I am one of millions.”

Diagnosed at Age 37

The day after Thanksgiving in 2012, Ms Haddad was not eating leftovers with her family. Instead, at age 37 years, she was trying to deal with the fact that she had just been diagnosed with stage IV inflammatory breast cancer.

A few weeks earlier, her primary care provider had diagnosed her with mastitis from breastfeeding her son. She was given antibiotics, and told to see a breast surgeon, “just to be sure.” So, she did. The breast surgeon called on Thanksgiving Day, asked Ms Haddad if she was sitting down, and told her that she had approximately 2 years to live if standard treatment did not work.

“The months and years to follow were far from the head scarf and nausea that I had envisioned,” Ms Haddad recalled. “It involved genetic testing, not responding to treatment, fighting to access a phase 1 clinical trial on a compassionate use waiver, traveling to the trial at City of Hope by plane, 2 surgeries, 42 days of radiation across 13 fields, and more than 2 years of chemotherapy.”

Before her diagnosis, Ms Haddad had assumed that patients with cancer were much older than her, but nearly 50% of new cancers are diagnosed in patients aged 20 to 65 years.

“There is never a good age to get cancer but understanding what unique challenges modern cancer patients are facing will help your team support them from the minute they walk into the clinic to the minute they leave, hopefully cancer-free,” she said.

The Physical Impact of Cancer

According to Ms Haddad, the impact of provider decisions that neglect to consider a patient’s quality of life can be profound. Her first experience with this issue occurred when she was trying to decide between a peripherally inserted central catheter (PICC) line and a portacath. She received conflicting advice from providers about which one she should choose, which only added to her confusion. Had a provider addressed her concerns about raising 2 small children who might accidentally rip out her PICC line, she would have gone with the port­acath from the start.

Another physical concern that providers need to address with patients is postoperative care. No one had warned her until the day of discharge that after her oophorectomy and bilateral mastectomy she would not be able to climb the stairs in her townhome to use the bathroom. Luckily, her sister lived nearby and had a spare downstairs room with a bathroom, but not all patients in recovery are that fortunate.

The issue of transportation is also frequently overlooked. An estimated 3.6 million patients in the United States missed their medical appointments in 2018 because of a lack of transportation, and this issue tends to affect patients with cancer more profoundly because of the frequency and length of their appointments.1 Most patients rely on family or friends, but some have no support system, may not have access to public transport, or cannot afford a rideshare service. Although some companies, such as Uber Health (www.UberHealth.com), now provide reliable rides for patients in need, Ms Haddad asserted that these programs need to be implemented on a much larger scale.

“It needs to be part of the oncology team’s discussion. Bring in local partners to solve this transportation problem and find reliable ways to get patients to appointments,” she said.

According to Ms Haddad, providers need to bridge the gap between the physical care of the patient and the physical care of the survivor. Patients often do not know what the survivorship period will entail and need to discuss it with their care team.

Once treatment is completed, patients often do not know which specialist to see for issues that may arise, underscoring the need for a solid relationship with a primary care physician and reliable and consistent communication between care teams.

“The modern cancer patient needs help navigating this,” she said. “I know plenty of survivor friends who have gone to the ED with a [urinary tract infection] or strep throat. I myself ended up in the ED with an ear infection, simply because I didn’t know who to call.”

Emotional and Financial Support

Younger patients with cancer have responsibilities to the people (and pets) who depend on them. They have to absorb the shock of the diagnosis themselves, but they also worry about being able to care for loved ones and remain employed.

“I never imagined that I would need as much emotional support as I did,” Ms Haddad said. “The emotional suffering can be just as intense as the physical suffering.”

She experienced emotions that she never would have associated with a cancer diagnosis, such as guilt, regret, and jealousy, in addition to the emotions she anticipated, such as sadness and fear. Ms Had­dad said that support services outside of family are crucial, but support groups in her age bracket were not easy to find.

Her oncology social worker was her “life raft,” because she was able to divulge so much to her. “I would talk to her about things that no one else would talk to me about, like death and dying and anger,” Ms Haddad recalled.

Sexual health and intimacy are often overlooked in the care of patients with cancer. Although Ms Haddad admits it can be an awkward subject to broach, she wishes someone on her care team had brought it up, particularly given her age.

“Every single survivor I’ve talked to in 7 years brings it up,” she said. “Having someone on the team that we can speak to would be so helpful. As we survive longer and longer, it’s something that really needs to be addressed.”

Many patients also face issues related to parenting while dealing with cancer, and Ms Haddad recalls this as the most painful part of her experience.

“It didn’t seem to ever factor into any oncology discussion,” she said. “Asking your patient if they have kids would be a huge first step.” Follow up by asking if they have a partner or family member to take care of the children and, if not, help them to find resources and support, she urged.

“I had family and a community to help me with my kids. I could only parent from afar because of my suppressed immune system, so I relied on everyone around me to fill that void,” she said. “But I am well aware that not everyone is so lucky.”

Support groups specifically for parents with cancer, as well as referrals to child psychologists, are desperately needed and often not discussed, she explained. “My husband and I didn’t know what to say to our 5-year-old,” Ms Haddad said. “We hardly knew what to say to each other.”

Many patients do not yet have children, or they want more children after treatment. Addressing fertility preservation is another crucial component of caring for these patients.

In addition, fighting cancer is expensive, and the emotional toll that financial stress creates is real and measurable. Financial toxicity occurs more often among young adult patients, and this financial stress can translate to increased symptoms and worse outcomes.

Adult patients with cancer are almost 3 times more likely to file for bankruptcy than their peers without cancer, and studies have shown that patients who do file for bankruptcy have significantly higher mortality rates than those who had the same cancer and did not file for bankruptcy. Financial counselors are key in helping patients to understand their financial responsibilities and potential out-of-pocket costs.

Ms Haddad has put together her “dream oncology checklist” for patients and hopes it can serve as a helpful guide for oncology providers.

“This won’t apply to everyone but looking at a few elements on this list and seeing if they’re part of your current program would be a good guideline,” she said.

Do we have:

  • A patient resource center with updated materials that opens early and stays open late?
  • A financial counselor?
  • Support groups for patients aged 30-55 years?
  • A “parents with cancer” group and referrals?
  • A sex and intimacy class and/or counselor?
  • A local transportation program for patients?
  • A cancer survivorship program?

“The smallest changes can directly affect a cancer patient’s life,” Ms Haddad added, “and ultimately, a survivor’s life.”

Reference

  1. Forman L. Doctor visits could provide relief to Uber and Lyft. July 10, 2019. www.wsj.com/articles/doctor-visits-could-provide-relief-to-uber-and-lyft-11562756401. Accessed November 22, 2019.
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Last modified: April 27, 2020