“patients (myeloma diagnosis) have a poor understanding of prognosis, survival, and effectiveness of chemotherapy, particularly in the setting of advanced cancer.”
I lived through a multiple myeloma diagnosis in early 1994 at the age of 34. Only after 10 years of researching MM, writing about MM, and cancer coaching MM patients beginning in 2004 did I realize that I had no real understanding of my cancer, my therapy options (induction, consolidation, ASCT, remission, relapse, etc.) or the real possibility of serious side effects.
My mom was diagnosed with breast cancer at the age of 70 and again fifteen years later. My mom is a well-educated, intelligent and generally curious woman.
As much as I’ve talked with my mom about the importance of learning one’s stage at diagnosis, therapy options, risks, benefits, etc. mom never asked her oncologist what stage of breast cancer she was.
In mom’s defense according to the study discussed below, more than half of newly diagnosed cancer patients don’t really understand their cancer diagnosis either.
My mom and I are two very different people who are both intelligent, well-educated people and who are excellent examples newly diagnosed cancer patients in the two studies linked and excerpted below.
For the record, my mom was diagnosed with ductal carcinoma in-situ, or pre-breast cancer, and I was diagnosed with a single plasmacytoma a form of pre-multiple myeloma.
Neither of us had cancer. We both had forms of pre-cancer.
The bottom line is that I do what I do because most people don’t know what they don’t know. Meaning, newly diagnosed multiple myeloma patients can’t “synthesize” the information given to them about their diagnosis.
I’m biased of course but I believe that both my mom and I could have benefited greatly from cancer coaching.
Further, conventional MM oncology, on average, don’t or can’t take the time to explain the life and dealth issues to MM patients, survivors and caregivers.
Have you been diagnosed with cancer? Would you like to learn about your therapy options? Please scroll down the page, post a question or comment and I will reply to you ASAP.
David Emerson
- Multiple Myeloma Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
“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…
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…
Patients may have a hard time synthesizing all the information we give them,” Dr Sivendran told Medscape Medical News.
Whether or not this lack of understanding has clinical ramifications is uncertain, say the authors…
Toby Campbell, MD, a medical oncologist at the Carbone Cancer Center, the University of Wisconsin, in Madison, was “not surprised by the findings.”
“Patients struggle both with interpretation of jargon (eg, what does stage IIb mean) as well as contextualization (eg, what does “the cancer is in the liver” mean),” he told Medscape Medical News in an email.
Dr Campbell, who was not involved with the study, cited previous research that “has taught us that there is cognitive (and probably emotional) resistance to the information and the prognostic implications.” The end result is that “the information has a more difficult time being incorporated” by patients…
“Purpose: Several studies have demonstrated that patients have a poor understanding of prognosis, survival, and effectiveness of chemotherapy, particularly in the setting of advanced cancer. This study examines oncology patients’ understanding of their illness based on accurate reporting of stage at diagnosis and knowledge of cancer status (ie, free of cancer or in remission v active disease).
Conclusion: Our findings confirm that more than one quarter of patients with advanced cancer have poor illness understanding and highlight that an even greater number of patients with early stage I to III cancer have poor illness understanding. These observations highlight the need to improve illness understanding for patients across the entire cancer continuum.”
