Greater focus on cancer survivorship is needed

Apr 30, 2019
Greater focus on cancer survivorship is needed

The medical community has “failed to study and address the psychological, social, spiritual, and financial impact of living for years with incurable cancer”.

And it’s time for that to change, according to an article published in the April 4 issue of the New England Journal of Medicine.

Terry Langbaum, administrative director at Johns Hopkins Comprehensive Transplant Center, and Dr Thomas Smith, professor of oncology and palliative care at the Johns Hopkins University School of Medicine, writes: “One of us, Terry, has survived four separate cancer diagnoses over the past 37 years and is now living with a treatment-refractory radiation-induced sarcoma. The other, Tom, is living with a recurrence of prostate cancer and life-threatening side effects of surgery, radiation, and androgen blockade.

“We know we are not alone: the population of metastatic cancer survivors like us is growing.”

Many people who would have previously died within months of diagnosis are now living for years thanks to therapies that did not exist five years ago. It means there will be an estimated 26 million cancer survivors living in the United States by 2040.

But while existing guidelines do an “excellent job” of outlining the management of the physical and psychological impact of treatment late effects, most assume the survivor’s cancer is in remission.

Living with cancer and quality of life

“Long-term survivors with metastatic cancer, by contrast, have not been well studied, (even) though diagnoses of incurable cancer will have substantial effects on patients’ families, on workplaces, and on US health care resources in the coming years,” say the pair.

“Survivors like us have limited or no options for cure today and must cope with living long-term with what could be a terminal illness.”

Living with cancer as a long-term condition has a significant impact on the physical health and quality of life of patients and their families.

“Many of us function fully for years, and it is becoming commonplace for patients with chronic cancer to face the challenge of determining how to optimize their remaining time,” the article reveals, adding that advances in genetic and personalized medicines do offer hope, but not for everyone.

“Today, there may be hope … but which patients and at what cost? 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?

“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?,” the authors ask.

Participating in your own care

One of the most troubling aspects of living with an incurable cancer, they highlight, is the loss of control, making it imperative that patients be invited to participate in their own care.

The perceived burden people place on their families and caregivers is another major concern for patients, but the list doesn’t stop there.

Terry and Tom write: “The challenges of metastatic-cancer survivorship may include the physical issues related to disease burden and the side effects or late effects of treatment, the stress and uncertainty of ‘waiting for the other shoe to drop’, the financial toxicity of managing a chronic condition, and the stigma of a cancer diagnosis and its possible effects on one’s interpersonal relationships and work life.”

There is a role for patient advocacy groups, they point out, adding that Tom finds support from the UsTOO online community.

Finding other people who are dealing with the same issues and the same lack of understanding from doctors about the severity and impact of side effects is helpful, he says.

“But nothing can alter the fact that our lives, both personal and professional, have been changed forever… 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.”


Johns Hopkins faculty staff members address travails of navigating metastatic cancer survivorship (Accessed April 4, 2019)


Greater focus on cancer survivorship is needed

Astellas Patient Advocacy is a function within Corporate Affairs at Astellas that focuses on creating, building and maintaining third-party relationships. We serve as a conduit between Astellas and external stakeholders to help improve patient outcomes, improve access issues and address patients’ unmet needs head on.

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