Persons Living With Incurable Cancer a Growing, Neglected Group

Megan Brooks

April 04, 2019

People with metastatic cancer are living longer, thanks to better treatments, including immunotherapies and tyrosine kinase inhibitors (TKIs), yet few studies have addressed the nonbiomedical needs and challenges of this rapidly growing population.

"Unfortunately, the research community has failed to study and address the psychological, social, spiritual, and financial impact of living for years with incurable cancer," write Terry Langbaum, MAS, and Thomas Smith, MD, in an essay published online April 4 in the New England Journal of Medicine.

"We believe the time has come to study metastatic cancer survivors and better educate the medical community about the needs and challenges of this growing population," they write.

The issue hits close to home for Langbaum and Smith, who are both living with metastatic cancer.

Langbaum, administrative director at the Johns Hopkins Comprehensive Transplant Center, Baltimore, Maryland, has survived four cancers during the past 37 years and is now living with a treatment-refractory radiation-induced sarcoma.

Smith, professor of oncology and palliative care at the Johns Hopkins University School of Medicine, is living with a recurrence of prostate cancer and life-threatening side effects of surgery, radiotherapy, and androgen blockade.

Smith said his life has been irrevocably changed by recurrent cancer and its treatment. Five months into total androgen blockade, he suffered a swift, serious return of long-dormant depression, with severe mood swings and suicidal ideation severe enough to require hospitalization. Some members of his care team were surprised to learn that androgen deprivation increased the relative risk for depression by 41%. Early warning and preemptive referrals might have helped, said Smith.

For Smith, the experience provided a clear example of just how ill-prepared patients and their care providers are in facing this new frontier of metastatic-cancer survivorship, which presents a mix of hope and uncertainty in this age of advanced therapies.

Many patients with metastatic cancer who would once have died within months now live for years, receiving new therapies and combinations of treatments that did not exist just 5 years ago.

"As an example, about 15% to 20% of people with metastatic lung cancer will be alive at 5 years because of immunotherapy, and that's a luxury; nobody ever thought that was possible," Smith, told Medscape Medical News.

A close friend of Langbaum's is in her seventh year of survivorship with pancreatic cancer. "She has been in and out of the hospital, on and off treatment, but she has lived and worked through 7 years of pancreatic cancer treatment. I think people just really haven't recognized that this group is something more than just people waiting to die," Langbaum told Medscape Medical News. Yet, "almost nothing in existing guidelines" relates specifically to patients living with metastatic cancer, she added.

The financial burden alone for the growing number of people living for years with incurable cancer, on and off treatment, is huge. Many of the new therapies cost more than $10,000 per month. When Langbaum was recently prescribed one of the new TKIs, her medical oncologist gave her a long list of the side effects of the drug but failed to mention that 1 month's treatment cost $13,000.

"How will patients deal with the expense of long-term cancer survivorship as more and more costs shift to the patient each year? How will this country deal with the exponential growth in costs of treatment for longer durations of survival?" Langbaum and Smith wonder.

People living with metastatic cancer could use some guidance even on "seemingly irrelevant health decisions," they point out. For example, "Should we forgo routine prevention and screening for our other medical conditions? Is it pointless to be taking a statin when you don't even know if you should take a chance on purchasing airline tickets for a summer vacation? If you're living with metastatic cancer, even buying light bulbs can make you wonder whether you need ones that will last longer than you will."

The Majority Rules

Why is metastatic cancer survivorship a neglected topic? "Because we are thousands among millions, and the majority rules," Katherine O'Brien, who was diagnosed with metastatic breast cancer (MBC) in 2009, told Medscape Medical News. "We stage IV patients are in the minority," said O'Brien, patient advocate with the Metastatic Breast Cancer Network (MBCN) and awareness co-chair for the MBC Alliance.

The MBC Alliance, cofounded 5 years ago by the MBCN, is addressing some of these survivorship issues.

The Alliance's goals for this year include collaborating with an academic expert to conduct an analysis of atypical responders, including long-term exceptional responders who are participating in MBC Connect — an interactive, Web-based, mobile-friendly patient registry where patients can share information about their MBC disease history, experiences, and quality of life.

"This will build on the Alliance's call to action for more research into exceptional responders. The MBC Alliance also has several research projects underway that are focused on a better understanding of the epidemiology of MBC," said O'Brien.

Smith, Langbaum, and O'Brien have disclosed no relevant financial relationships.

N Engl J Med. Published online April 4, 2019. Abstract

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