Melanoma Caregivers

Do we understand what the doc is really saying?

So I just read this brief article from Medscape about the art of oncology communication: medscape.com/viewarticle/88...

It has made me think about how I understand language and what it means to a scientist/ physician. I want to be engaged with a clinician who is hopeful but also honest with me in terms of where we stand with how melanoma is presenting itself today in my loved one. I need our physicians to be the translators of the bloodwork, scans, genetic markers, tumorboards, and clinical presentations of the science and art of treating melanoma into a language that is clear and understandable. This is essential to our ability to make informed treatment decisions.

If a treatment has a "significant" outcome making it better than another treatment, please turn that into common application like: if you use medication A instead of B you have a 50% chance of living 2 months longer. I can use this information if you also tell me: but be aware that folks who use medication A also wind up in the hospital for an average of 3 weeks feeling pretty crappy and running a fever. Now I can make an informed decision that includes quality of life preferences.

I also learned that I would like the physician to tell me what is meant by "progression-free survival" and if that is what the treatment is offering or if we are discussing overall survival. Again, I benefit from a clear use of language like: We don't know everything, but the data we have with Treatment C is that people using it have lived for an average of 18 months compared to people with no treatment who lived 6 months. Or if you use Treatment C, 50% of the people are still alive 10 years later and 50% of the people who used any other kind of treatment are also still alive 10 years later. Treatment C costs $$$ and the range of prices for the other treatments is $-$$. But Treatment C can be taken outpatient and all the others require overnight stays.

Here is my take away: After the physician tells you about your illness or treatment options, say it back to the doctor using your own words to see if you understand the information in the way the doctor intended. And if there are words that perhaps the physician is using that you don't fully understand, ask for clarification, because it is the only way you will be a full partner in making treatment decisions.

It's also ok to ask for a second opinion from someone in a different practice group, for materials written in plain language, for a medical language translator to be present or on the phone, and to ask what if I don't want to pursue this course of recommendations: what are my other options?

Even though I've been learning a lot of science about melanoma in the past 3 years, I'm not a scientist or a physician. I need to remember that I'm not expected to be one either.

Missy