February 22, 2011 – It Pays to Shop Around

Here’s an eye-opening statistic: “Most Americans will spend more time comparison-shopping for flat screen TVs than searching for the best doctor possible.”

Kairol Rosenthal, an author who cites this statistic, is a cancer survivor who proudly tells of how she works the system:

“I approach the challenges of the system as if I’m on a personal vendetta. I crush the system like a superhero who has grown a hundred times my size. I sleep at night knowing I have done everything within my power to influence my outcomes. This is my definition of well-being.”

That’s beyond proactive.

Not everyone would put it so zealously, but she’s got a point about the importance of getting second opinions. We don’t survive cancer by just sitting back and waiting for medical professionals to do things for us. We’ve got to question, to research, to learn. We’ve got to insist that our doctors give us the time and information we need to make informed decisions. We’ve got to learn the art of negotiating with insurance companies. We’ve got to keep track of those test results and make sure they get forwarded to the proper specialists. We’ve got to become our own best advocate.

I’ve been fortunate, that way. I feel blessed to have the sorts of doctors who give me far more than the time of day, and aren’t put off by talk of second opinions. But that doesn’t mean I can slack off on my homework.

There is an alternative, of course. We could just sit home and watch that flat-screen TV.

February 19, 2011 – Incidentaloma

A couple weeks ago, I had another of my periodic PET/CT scans, which are becoming as routine as that sort of thing can possibly be. When I called Dr. Lerner’s office for the test results a week later, the nurse called me back and said the PET scan had revealed some unexplained “uptake” on the left side of my thyroid gland, in the area of the small nodule detected last time around.

On that earlier occasion, Dr. Lerner had referred me to Dr. Jay Sher, an endocrinologist. After subsequent tests, Dr. Sher pronounced the nodule too small to be concerned about, and not large enough to biopsy. He did say it bore watching, though.

Well, it’s no longer so small. On Wednesday I had a follow-up CT scan and ultrasound. Yesterday, I got a call from Dr. Lerner, who informed me it’s doubled in size, from about .80 cm to about 1.60. A centimeter and a half still sounds pretty insignificant to me, but I suppose in the world of endocrinology that calls for a closer look.

So, that’s what we’re going to do. As soon as I hung up after Dr. Lerner’s call, I phoned over to Dr. Sher’s office – it was just before closing time – and left a message. Dr. Lerner’s staff is faxing the scan results over. Someone from Dr. Sher’s office wil call back on Monday, presumably with a referral for an ultrasound-guided needle biopsy.

Dr. Lerner assured me there’s nothing to worry about just yet – most thyroid nodules are benign – but, still, it’s not something to leave unexamined.

Doing a little online research, I came upon a retrospective research study that calculated a malignancy rate of 28.8% in small thyroid nodules discovered in this way. I even learned there’s a name for this phenomenon. Abnormalities that show up on scans ordered for some other purpose are called incidentalomas. As high-tech scans proliferate, more and more of these tiny, mostly benign tumors show up – tumors that would, in an earlier era of medicine, have gone unnoticed.

That’s both a good thing and a bad thing. To the extent that incidentalomas turn out to be something truly serious, early detection is a fortunate – sometimes even lifesaving – coincidence. Yet, most of the time they’re just benign growths. Still, they trigger anxiety in patients who would otherwise go through life blissfully unaware of their existence.

I’m not feeling especially anxious about it, myself. I’m more annoyed, I suppose, that I have to go through this whole biopsy thing again. Having stumbled over the rock, though, we’ve got no choice but to turn it over and see what may be crawling around underneath it.