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Author: Windowseat Big funky green star, 20000 posts Top Favorite Fools Feste Award Nominee! Old School Fool Add to my Favorite Fools Ignore this person (you won't see their posts anymore) Number: of 7894  
Subject: We'll Just Watch This for Awhile Date: 9/28/2004 7:19 PM
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I haven't posted about this before, because I've been banging my head against walls all summer, and was frustrated, and I knew that anything I said here would lead to offers and suggestions and ideas, and I'd be back to beating my head against walls.

But the walls came down last week, and I can discuss the situation.

Back in early June my sister-in-law's father was diagnosed with non-small cell lung cancer. The doctor didn't know what kind of non-small cell it was, but was certain it was not mesothelioma. There are four more possibilities.

He never smoked. His wife used to, but stopped more than thirty years ago. However, he has been around a lot of shipyards, and there was an issue with insulation in the house at one point, so there are two possibilities. He's 82, but is in excellent health. Chops wood, clears land, canoes, hikes, etc. (They're up in Maine). One of those small, wiry, active men with a high metabolism.

There had been fluid in the lung, and when it was drawn out the cancer was discovered. The hospital did a CAT scan, but didn't find the tumor.

So, says the doctor. You come in every month or so and have a blood test, and we'll schedule the occasional CAT scan, and when the tumor shows up we'll decide what to do.

I have spent the summer writing the occasional email saying, "you know, I really think your father should ask about a second opion. Down here in Boston, maybe. Dana-Farber or Mass General. And there are these clinical trials that can be done at his own hospital; they won't have to come to Boston all the time, so don't worry about that. But I really think that more should be done toward locating the tumor and getting treatment started."

Dead silence was the usual reception. The sister-in-law's sister-in-law did promise to discuss it with her husband, but that was it.

Okay, this is a doctor talking, and Nancy couldn't know anything about it. Standard family response.

However, a couple of weeks ago my sister-in-law emailed me to ask if I knew of some cancer sites that she could check.

Do I have some sites? Does Disney make cartoons?

I sent her a very long email, listing most of the best sites, complete with commentary. And I included a separate link to something I found on the MJ Anderson site about second opinions, which explained that a second opinion was not a negative comment about one's own doctor. I pointed out that new drugs are being tested, so that chemotherapy was no longer the drain on the system that it had been; that people could continue to function while being treated.

When I saw her on Saturday she said that her parents had been down, and she had talked to them, and they had talked to the doctor. A PET scan is now in the works, and once they have that they'll make arrangements to come to Boston for a second opinion.

So, after more than three months, they are finally moving forward. I don't know how much this tumor might have grown in the meantime, but I hope that it hasn't gotten out of control.

"We'll watch and see if something develops." This is the message they've been getting.

I know there are some wonderful, brilliant, caring doctors out there, but this particular oncologist, however nice she is, does not rank anywhere on my list of great doctors.

"We'll just keep watching."

Don't watch! Get a second opinion! Push your doctor!

Find out what you can, and compare the best treatments to what you're getting. Do 47 sites say that both a CAT scan and a PET scan are necessary in order to find a non-small cell tumor? Then ask your doctor why you aren't getting the PET scan.

Is your doctor saying "Let's wait"?

Then ask her what you're waiting for, and what is likely to happen while you're waiting. Are the cancer cells going to race through your system? Is this a good thing to have happen?

Don't just sit there absorbing what you're told. Ask questions. Compare treatments.

When I was undergoing treatment, my doctors told me that the best patients tend to be those with questions. It might take longer to answer the questions, sometimes the answers didn't come easily, but once the patients understood what was going on, and were sure that this was the best possible answer at this moment, they flung themselves into treatment. They didn't cancel appointments. They tried to stay active. They understood why they were being told to avoid certain substances, and followed through. (Certain vitamins can't be taken before surgery, some drugs don't work with some of the herbal treatments, etc). They might still complain, they might argue on occasion, they might stage their own personal sit-down strike (I did this once, in the radiology department, because I was getting conflicting orders). But they understood that this treatment was necessary in order to save their life, and they were going to follow through.

My doctors liked patients who ask questions. My surgeon is listed among the best doctors in the country. (That's an actual book, and I looked her up. She's considered the best breast cancer surgeon in the Northeast, and one of the very best in the country). She's run trials on which patients get better fastest, and she said that the more questions they ask, the better they do, because they understand the reasoning behind what the doctor tells them to do. They are also more willing to get out of bed the day after surgery when they are told that they'll be better for it.

Don't just sit there. Nag your doctor!!!!!

Nancy
(I realize that some doctors read this board, and they're probably visualizing thousands of patients asking stupid questions. But really, which is better: a patient who asks lots of questions, and then follows through on what you say, or a patient who just nods and then ignores you)?
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