For the readers of "CONQUER," let me just give some cues on how to use your navigators providing a story.
I want the patients to realize, "Never stop asking questions." Everyone is different. It is a new world when you hear the word "cancer," no matter what type it is, and it's a different care process for each community, so when they don't understand something, I want them to question.
For example, in our community, we try to be very good stewards of our patients' money. Each time they go to an oncology specialist, it is another copay. Let's give an example of, a $50 copay is probably the average cost for these people to go.
These are people who are raising their grandchildren. They're raising their children, or they may be parents that are actually now taking care of their parents, so you have a lot of intergenerational issues going on, with limited budgets and a very tight economy.
If we see that they do need to meet with a professional before a certain surgery, for a certain treatment, they are going to meet with that professional. I had a patient call me the other day. She questioned, "Why am I meeting with this professional?"
The explanation was given when she originally met with the navigator. "You will be meeting this specialist and this specialist." At that point in time, her tumor biology had had additional tests run on it, and some of the test results had changed.
I explained to her, when she went to meet with this professional, what the discussion would be, and it was that dreaded word that she didn't want to hear. "He or she will be having a discussion with you about the possibility of chemotherapy before surgery or possibly after surgery."
This was actually a single patient, living on a budget, that needed to continue to work, to provide for healthcare insurance, before the other expenses that come with having a cancer diagnosis.
You can imagine, our conversation was a little hard for her to hear that word, but after we explained why, based on her tumor biology, at the end of the conversation, her words to me were, "I didn't like your answer at first, but I appreciate you being honest with me so when I'm walking in that office on Monday morning, I'm prepared to hear what he has to say for me."
Again, the navigator was just preparing her for what the discussion was going to be that day, not what the outcomes would be, not what the answers would be, but allowing her to think, as she time, over the weekend, about, "This is the discussion that you're going to hear, and this is why."
It was always put back in her control. She always had control of the decisions that were being made. There were no right or wrong decisions. They were personal decisions for her.
If other patients could just understand, "Please continue to ask questions. Don't think, 'Oh, I don't want to ask this, because I don't want to come off as looking like I don't what I'm doing.' We've just thrown you into a world where there's sometimes no right or wrong answer. There's very different options of care."
I'd like to encourage all patients to continue to ask questions, and to call their navigators and say, "Please, I don't understand this. Help me understand."