More People Are Living with Stage 4. Cancer – This Can No Longer Be Ignored

Today, patients with metastatic (stage 4.) cancer are living longer thanks to immunotherapies and smart drugs such as tyrosine kinase inhibitors and other new treatments, but few studies have addressed the non-biomedical needs and challenges of this rapidly growing patient group.

“Unfortunately, researchers have failed to study and address the psychological, social, spiritual, and financial impact of living with incurable cancer for years,” say, in an article published on 4 April in NEJM, Terry Langbaum and Thomas Smith.

“We believe it is time to study metastatic cancer survivors and better educate the medical community about the needs and challenges of this growing population,” they say.

The fact that both Langbaum and Smith are patients who have lived with metastatic cancers for many years makes this article even more interesting and tangible.

Langbaum (left), administrative director of the Johns Hopkins Transplant Center, has survived four cancers over the past 37 years and now lives with treatment-resistant soft tissue sarcoma.

At the Johns Hopkins University School of Medicine, oncology and palliative care professor Smith is a patient with recurrent prostate cancer who is trying to cope with the life-threatening adverse effects of surgery, radiotherapy, and androgen blockade (right).

Smith says his life has been irreversibly changed by recurrent cancer and its treatment. After 5 months of hormone-suppressing therapy, he experienced depression severe enough to require hospitalization. Some friends were surprised to learn that androgen-suppressing treatment increases the risk of depression by up to %41.

Smith’s experience, himself an oncology professor, provides a clear example of the mixture of hope and uncertainty facing patients who have stage 4. cancer yet survive for a long time in this era of advanced treatments.

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

Smith “For example, approximately %15 to %20 of people with metastatic lung cancer will survive for 5 years because of immunotherapy, and nobody previously thought this would be possible,” said.

A close friend of Langbaum’s has pancreatic cancer and is living in her seventh year. “She goes in and out of hospital and receives treatment; she has lived and worked with treatment for pancreatic cancer throughout these past 7 years. I think people do not realize that this group is something other than people waiting to die,” says Langbaum. She also adds, “Almost nothing in current treatment guidelines specifically concerns patients living with metastatic cancer.” she says.

The increasing number of patients living for years with cancer without achieving a complete cure is also a major challenge. Many new treatments cost more than 10.000 dollars a month. When Langbaum was recently prescribed one of the new smart drugs, her medical oncologist gave her a long list of adverse effects, but did not tell her that 1 month of treatment cost 13.000 dollars.

Langbaum and Smith ask: “As more costs shift to patients each year, how will they cope with long-term cancer expenses? How will countries address the exponential growth in treatment costs needed to keep their citizens alive longer?”

There are other questions for people living with metastatic cancer, for example: “Should we give up routine prevention and screening for our other medical conditions? Is it pointless to buy a plane ticket for a summer vacation? If you live with metastatic cancer, you may even wonder whether you need things that will outlast you, such as a household lamp.”

Majority Rules

Why are metastatic cancer survivors a neglected subject? Katherine O’Brien, a patient diagnosed with metastatic breast cancer in 2009, answers this question as follows: “We are a group numbering in the thousands among millions of cancer patients, and the majority rules,” (As of 2018, an estimated 46 million people worldwide had received cancer treatment and were continuing their lives.) O’Brien, awareness co-chair for the Metastatic Breast Cancer Network (metastatic breast cancer network, MBCN) and the Metastatic Breast Cancer Alliance, “We stage 4. patients are in the minority,” says.

The Alliance’s goals this year include collaborating with an academic expert to analyze why some patients with stage 4. cancer can respond to cancer treatments for much longer. This situation, seen more often with immunotherapies and in hormone suppression-sensitive cancers, is referred to in oncology as exceptional responders (the opposite, patients who rapidly develop treatment resistance , is also an important research subject in oncology). The aim is to bring exceptional responders together on an interactive, web-based, mobile-compatible patient registry platform. This will provide clearer information about the stories, experiences, and quality of life of patients with metastatic breast cancer.