Many Patients, Doctors Unaware of Advancements in Cancer Care

Kristin Jenkins

September 30, 2021

Many patients with cancer, as well as doctors in fields other than oncology, are unware of just how much progress has been made in recent years in the treatment of cancer, particularly with immunotherapy.

This is the main finding from two studies presented at the recent European Society for Medical Oncology annual meeting.

The survey of patients found that most don't understand how immunotherapy works, and the survey of doctors found that many working outside of the cancer field are using information on survival that is wildly out of date.

When a patient is first told they have cancer, counseling is usually done by a surgeon or general medical doctor and not an oncologist, said Conleth Murphy, MD, of Bon Secours Hospital Cork, Ireland, and co-author of the second study.

Non-cancer doctors often grossly underestimate patients' chances of survival, Murphy's study found. This suggests that doctors who practice outside of cancer care may be working with the same information they learned in medical school, he said.

"These patients must be spared the traumatic effects of being handed a death sentence that no longer reflects the current reality," Murphy said.

After receiving a diagnosis of cancer, "patients often immediately have pressing questions about what it means for their future," he noted. A common question is, "How long do I have left?"

Non-oncologists should refrain from answering patients' questions with numbers, Murphy said.

Family doctors are likely to be influenced by the experience they have had with specific cancer patients in their practice, said Cyril Bonin, MD, a general practitioner in Usson-du-Poitou, France, who has 900 patients in his practice.

He sees about 10 patients with a new diagnosis of cancer each year.

In addition, about 50 of his patients are in active treatment for cancer or have finished treatment and are considered cancer survivors.

"It is not entirely realistic for us to expect practitioners who deal with hundreds of different diseases to keep up with every facet of a rapidly changing oncology landscape," said Marco Donia, MD, an expert in immunotherapy from the University of Copenhagen, Denmark, said.

That landscape has changed dramatically in recent years, particularly since immunotherapy was added to the arsenal. Immunotherapy is a way to fine tune your immune system to fight cancer.

For example, in the past, patients with metastatic melanoma would have an average survival of about 1 year. But now, some patients who have responded to immunotherapy are still alive 10 years later.

Findings From the Patient Survey

It is important that patients stay well-informed because immunotherapy is a "complex treatment that is too often mistaken for a miracle cure," said Paris Kosmidis, MD, the co-author of the patient survey.

"The more patients know about it, the better the communication with their medical team and thus the better their outcomes are likely to be," said Kosmidis, who is co-founder and chief medical officer of CareAcross, an online service that provides personalized education for cancer patients

The survey was of 5,589 patients with cancer who were recruited from CareAcross clients from the United Kingdom, France, Italy, Spain, and Germany.

The survey asked them about how immunotherapy works, what it costs, and its side effects.

Almost half responded "not sure / do not know," but about a third correctly answered that immunotherapy "activates the immune system to kill cancer cells."

Similarly, more than half thought that immunotherapy started working right away, while only 20% correctly answered that it takes several weeks to become effective.

"This is important because patients need to start their therapy with realistic expectations, for example to avoid disappointment when their symptoms take some time to disappear," Kosmidis said.

A small group of 24 patients with lung cancer who had been treated with immunotherapy got many correct answers, but they overestimated the intensity of side effects, compared with other therapies.

"Well-informed patients who know what to expect can do 90% of the job of preventing side effects from becoming severe by having them treated early," said Donia, of the University of Copenhagen.

Most cancer patients were also unaware of the cost of immunotherapy, which can exceed $100,000 a year, Kosmidis said.

Results of the Doctor Survey

The other survey presented at the meeting looked at how much doctors know about survival for 12 of the most common cancers.

Murphy and colleagues asked 301 non-cancer doctors and 46 cancer specialists to estimate the percentage of patients who could be expected to live for 5 years after diagnosis (a measure known as the 5-year survival rate).

Answers from the two groups were compared and were graded according to cancer survival statistics from the National Cancer Registry of Ireland.

Both groups of doctors had a hard time estimating the survival of common cancers.

Non-oncologists accurately predicted 5-year survival for just two of the cancer types, while the cancer specialists got it right for four cancer types.

However, the non-cancer doctors had a more pessimistic outlook on cancer survival generally and severely underestimated the chances of survival in specific cancers, particularly stage IV breast cancer. The survival for this cancer has "evolved considerably over time and now reaches 40% in Ireland," Murphy pointed out.

"These results are in line with what we had expected because most physicians' knowledge of oncology dates back to whatever education they received during their years of training, so their perceptions of cancer prognosis are likely to lag behind the major survival gains achieved in the recent past," Murphy said.


Conleth Murphy, MD, Bon Secours Hospital, Cork, Ireland.

Cyril Bonin, MD, general practitioner, Usson-du-Poitou, France.

Marco Donia, MD, PhD, University of Copenhagen, Denmark.


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