Tuesday, November 22, 2011

The challenge of being your own advocate

I am caught in a web of conflicting medical paperwork. At issue is whether or not I need a follow-up mammogram based on something that was probably nothing on my last mammogram; the doctor who originally said I needed a follow-up has changed his mind, while the one who said I did not need a follow-up has also changed his. So they have essentially both flip-flopped. And, meanwhile, only one appears to be looking at the proper document to assess the situation.


Here’s the deal. Last May, I had a mammogram—I was five years past diagnosis, so this was a big deal. The radiologist told me all was well and sent me to the surgeon. The mammogram gets sent digitally to the surgeon immediately, so he sees it before he sees me. He looked at it, and noticed that the radiologist suggested I have a follow-up in six months because he saw a shadow on my right breast.

The surgeon was royally annoyed. This is nothing, he said. They caught part of a node, and there is no sign of disease. I have looked it over extremely carefully. I know this is nothing.

Still, he said, because the radiologist said I needed a follow-up, I needed a follow-up. Medical protocol and all. But the surgeon, bless his heart, did not want me to worry for six months, so he set up an appointment for a new mammogram and ultrasound within the week.

The next day, the surgeon’s nurse called me to tell me I needed neither test. The radiologist had looked over my mammograms through the years—I had been getting them for 40 years at the same place. Turns out that shadow was truly nothing—it popped up every now and then over the decades and, sure enough, as my surgeon thought, it was a node.

Case closed.

Or not.

This fall, I got a note from the radiology office saying I needed a follow-up. I called the surgeon’s nurse and reminded her that she had told me I did not need the test. She had no record of that conversation and, not surprisingly, no memory of it either. She suggested I have the test.

So I called the radiology office to schedule the test and they said there was an addendum to the report that said I did not need the extra test because the shadow had shown up in previous tests for decades and the radiologist was assured it was nothing.

So, the surgeon had said I only needed the test because the radiologist insisted. Now that the radiologist said I did not need it, certainly I would not need the test.

Not so. Now my surgeon and my primary care physician are both insisting I get the test done, despite the advice from the person who actually started this whole thing rolling.

I, of course, cannot talk to the doctors. I talk to their nurses, who are wonderful people. But the facts are getting filtered through so many lenses that nobody seems to remember anymore who is on first and what is on second.

I do know, though, that this is my body. I have been checking that spot carefully for six months when I do my breast exams—and even in between. There is no lump there, and I discovered my cancer myself by feeling a lump, so I am confident that I would feel another lump, if it were there. Plus, the follow-up test is based on a recommendation that has since been recinded.

If I really felt I needed the test, I would not hesitate. But I do not need radiation because of a paperwork snafu.

To repeat: Aurghhhhhhhhh!!!!!!


Annie Appleseed said...

We are people, not algorhythms. We have to make the ultimate decisions. And BTW, there is nothing particularly meaningful about 5 years out. Especially in breast cancer - it might matter in some organ cancers, but with us things happen down the line.

I found 24 of the 25 breast tumor I ultimately dealt with. One was under another so not 'palpable'.

Tests carry their own burden of stress but also radiation exposures.

Anonymous said...

Annie, for triple negative breast cancer survivors the five year mark is very meaningful. After 5 years the recurrence rate goes down significantly unlike hormone positive which carries a consistent recurrence rate over the years.