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Need to make a cancer decision: call this number

BY KATHY LATOUR | MAY 23, 2012

Hearing the words "you have cancer" should be followed by, "and now we will begin speaking a language you don't understand."

It's more than the medical jargon that makes it hard for us to absorb all the information; it's also feeling like our ability to understand the language we have spoken all our lives now comes at us from the end of a funnel, condensed into a stream of information that is unintelligible in its magnitude and complexity.

But we need to understand, more now than ever. We have decisions to make and everyone is asking us questions about what we want to do, and they want answers now.

Of course, the question is, how can we ask questions about something we know nothing about? It's a problem for every cancer patient. Lots of information and decisions to be made in a language we don't speak.

The Cancer Support Community, a new organization that until last year was Gilda's Club and the Wellness Community, has launched a new program called Open to Options that is designed to help cancer patients go to their appointments with a list of questions that will help them make the informed decisions they need to make.

Because I like to try out any new program that comes along, I called the toll free number for Open to Options at 1-888-793-9355. I was a little disappointed to have to leave a number, but Jim called me back within the hour.

I liked Jim immediately. He had one of those wonderful slow, deep voices that calmed me before we even started talking about the tough stuff. Jim explained that their job on the help line was to empower patients to communicate with their physicians no matter the issue. Jim is a licensed social worker and said many of his coworkers were oncology social workers and that everyone was well trained to work with cancer patients.

He also pointed out that the program was available at the Cancer Support Communities across the country. If you go to their website, you will see where they are located and their phone numbers to make an appointment.

Jim was clearly someone who knew his stuff. He had lots of resources he recommended for different issues. But his goal, he said, was to send patients back to their doctors with a list of questions that were typed up and ready to be answered. He even followed up with them after the visit to see how it went.

Those of us who have had cancer know it can be hard to talk to a doctor. We feel that if we ask a question, it can somehow be taken as a challenge and we don't want them to feel that way. Depending on the physician, some have little time for questions and need to be reminded that the person in front of them is a person with a cancer and not a cancer with a person attached.

Having someone like Jim in your corner can help.

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COMMENTS

Kathy,

This is such a great topic and about time it's being discussed.It's like being transported to another planet where you don't how to communicate and you have to make a quick decision in order to save your life.It feels like you're falling into a black hole when the Dr. says "you have cancer", now what would you like to do?

Good job-
- Posted by Rhonda Witharm 5/23/12 5:23 PM

Kathy,

I particularly loved this post! Thank you so much!!! For this and for all that you do!

Suzanne
- Posted by Suzanne Lindley 8/20/12 10:06 AM

This is very important information for every cancer patient. It should be posted in waiting rooms everywhere. However, the doctor who considered one reasonable question (How soon?) "a challenge" and had "little time for questions" and needed to be "reminded that the person in front of them is a person with a cancer and not a cancer with a person attached" was not my doctor for very long.
- Posted by Roberta 3/8/13 9:02 AM

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