Are You Informed

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work

OCTOBER 26, 2017

There is not a single right answer about how much we should know about the specifics of our diagnosis. Some people want to become experts about their own situation and endlessly ask questions, research the key words, and spend hours on the internet. (If this is you, here is a reminder to be careful about which sites you read. Generally speaking the .orgs and the .govs are the most reliable). Other people listen only to what they are told by their doctors and nurses and prefer to operate on a need to know basis.

Individuals who opt to know a little less may be protecting themselves from the acute anxiety that can happen when you read a terrifying sentence of statistic on a website. They show up at the right time for appointments, know how to take their at-home medications and when/if to call with a problem. Otherwise, they try to go about their business without information overload.

Of course, what is information overload for one person may be barely enough for another. There is definitely no absolute right or wrong here, but it does seem to me that there is (at least generally) a minimum amount of information that we should have. Over time, we will find ourselves in conversation with other providers and will need to be able to describe our diagnosis and treatment. I think we should know what chemotherapy drugs we have received, what kind of surgery we had, and what was our stage of cancer at diagnosis. I am completely open to exceptions, and, if you know that these details will make you anxious, don't get them.

This is an introduction to an interesting article from Medscape that suggests that half of all cancer patients don't know their stage--or, I suppose, have it wrong.

Here is the start and a link to read more:

Survey: Half of Cancer Patients Don't Know Their Stage

Nick Mulcahey

About half of cancer patients did not know their disease stage, and nearly one third were "unsure" of their cancer status, including some who had no evidence of disease, according to a survey at a Pennsylvania center.

In summary, more than a quarter of the surveyed patients had a "poor understanding of their illness," concluded the survey authors, led by Shanthi Sivendran, MD, a hematologist-oncologist at the Ann Barshinger Cancer Institute, Penn Medicine at Lancaster General Health.

In the study, "understanding cancer" was defined as accurately knowing disease stage and status (free of disease/in remission vs active disease). The study was published online July 5 in the Journal of Oncology Practice.

The investigators mailed the survey to 208 patients who had been treated at the center within the past 2 years. They compared self-reported responses to medical records. On an upbeat note, the majority of the patients (86.5%) knew their cancer type. However, with regard to knowing stage, the concordance between self-reporting and the medical records was much

lower. Only 51% of the whole group accurately knew their stage. Notably, the agreement was lower among patients with stage I-III disease (36% to 61.5%) compared to patients with advanced disease (72%).

Overall, 64.4% of the surveyed group accurately knew their cancer status. However, 30% were unsure of their status.

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