Call to Action: Greater Focus on Metastatic Cancer Survivors Is Needed

TON - August 2019, Vol 12, No 4

Two cancer experts at Johns Hopkins Kimmel Cancer Center in Baltimore, MD, are advocating for greater focus on metastatic cancer survivorship and its impact on those living with incurable cancer, a situation they know all too well. Both are living with metastatic cancer and are urging the medical community to increase the study and awareness of this condition and improve the lives of this growing population.

Terry Langbaum, MHS, Administrative Director, Johns Hopkins Comprehensive Transplant Center, has survived 4 different cancer diagnoses in the past 37 years and is now living with treatment-refractory radiation-induced sarcoma without current options for cure. Thomas J. Smith, MD, Professor of Oncology and Director of Palliative Medicine, Johns Hopkins University School of Medicine, has recurrent prostate cancer and life-threatening side effects from cancer therapy, including surgery, radiation, and androgen-deprivation therapy.

“We know we are not alone: the population of metastatic-cancer survivors like us is growing,” said Ms Langbaum and Dr Smith in their recent perspective published in the New England Journal of Medicine about living with metastatic cancer.1

As a result of advances in treatments, they note, many patients who previously would have died within months of a metastatic cancer diagnosis are now living for several years. They add that the number of cancer survivors in the United States is estimated to reach 26 million by 2040, and guidelines are directed toward those whose cancer is in remission and their treatment is over.

“Long-term survivors with metastatic cancer, by contrast, have not been well studied, though diagnoses of incurable cancer will have substantial effects on patients’ families, on workplaces, and on U.S. health care resources in the coming years,” they advise. “Unfortunately, the research community has failed to study and address the psychological, social, spiritual, and financial impact of living for years with incurable cancer.”1

Key Challenges

They list key challenges that are confronting survivors living with metastatic cancer that are not being addressed by the care team for long-term survivors of metastatic cancer, in contrast to those whose cancer is in remission.

Physical issues related to the disease burden and the side effects or late effects of long-term treatment are not always familiar to the medical team. For example, Dr Smith said that 5 months into total androgen-deprivation therapy, his depression, which he had not experienced in decades, returned. This time, severe mood swings and thoughts of suicide warranted hospitalization. Members of his care team were surprised to learn that this common treatment for prostate cancer increases the relative risk for depression by 41%. He noted that warnings or preemptive referrals might have helped to prevent this.

Emotional stress and uncertainty of potentially having no time without side effects during the “new normal” of metastatic cancer. The authors describe the emotional aspects of the metastatic disease as “waiting for the other shoe to drop.”

Sexual concerns. Very few data and no specific guidelines are available regarding discussion and intervention for those dealing with ongoing implications of their metastatic disease.

Financial toxicity associated with the management of a chronic cancer, with the cost of many new therapies reaching more than $10,000 monthly; continued difficulty in finding or maintaining employment; or possible lifetime insurance coverage caps or other coverage limits are some of the financial issues faced by long-term survivors of metastatic cancer.

Screening for disease recurrence and for other preventable conditions depends on survival predictions, and no guidelines are available for those living with metastatic cancer.

Coexisting conditions require ongoing management and balancing prognosis with the urgency of the condition, as well as considering the effects of additive toxicities of long-term treatment.

Long-term caregiving takes a physical and emotional toll on a family (eg, continuing fatigue, burnout, and stress on finances). The authors emphasize that more studies investigating the experiences of caregivers of patients with metastatic cancer are needed.

Care coordination and hearing the patient’s voice amid multiple specialists who are providing care is an additional challenge for the care team, requiring additional care coordination and time. One of the most troubling aspects of living with incurable cancer is the loss of control, they said, stressing the importance of patient involvement in the decision-making regarding their care among those with metastatic disease.

Adopting New Strategies

Ms Langbaum and Dr Smith offered some possible strategies to ease the experience of metastatic cancer survivors. These include:

  • Developing coping mechanisms adopted from other chronic and life-threatening conditions
  • Providing therapy to help diminish patients’ feelings of despair; for example, Memorial Sloan Kettering uses “meaning-centered psychotherapy,” which focuses on sustaining and enhancing meaning in patients with advanced cancer
  • Offering mechanisms of support to patients and their providers, including support groups for those with metastatic cancer and patient advocacy groups.

Dr Smith added that he finds support from the Us TOO online community. This community helped him connect with patients who were dealing with the same issues and the same lack of understanding from the care team about the severity and impact of the side effects associated with the treatments he has been receiving.

“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,” the authors concluded.


  1. Langbaum T, Smith TJ. Time to study metastatic-cancer survivorship. N Engl J Med. 2019;380:1300-1302.

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