This essay aired on radio station WVTF.
I had breast cancer. Sort of. Depending on who you’re talking to Ductal Carcinoma In Situ (DCIS for those speaking English) is called either pre-disease or stage zero cancer. The ambiguity is because 70% of the cases never spread outside of the milk ducts to become dangerous, invasive disease.
The good news, according to the chipper nurse who called with my biopsy results, is that DCIS is practically always curable. The bad news, according to me, is the cures suck.
Because there’s no consensus about forecasting which case is going to become serious, pretty much everyone is treated aggressively. This means cutting the lump out and then following the surgery with a 6-week radiation chaser. Or removing the breast altogether.
While I’ve always been the poster child for complying with doctor’s orders this time around I decided to do some research before agreeing to anything other than a lumpectomy.
In truth, I relied on my husband to do the research. He’s a doctor and much better equipped. But I did learn a few unnerving cancer facts along the way. Like it’s not only important to get a second surgical opinion but a second pathologist’s opinion, too.
According to the Susan Komen Foundation thousands of women a year may have inaccuracies in their breast cancer lab reports. And that’s pretty disconcerting since this evaluation is a critical component of any action plan.
When we had my biopsy slides sent to another hospital the specialist there downgraded the cancer cell type from high to intermediate. Which was big. Because when plugging my new data into something called the Van Nuys Prognostic Index (which tries to predict recurrences), I squeaked into the group of DCIS patients with the best chance of doing as well without radiation as with it.
Granted, studies have shown that radiation after a lumpectomy cuts the chance of recurrence in half–but I couldn’t get past the fact that this type of cancer had a 7 out of 10 chance of being a non-issue anyway.
While I have no way of knowing which lab was right, or even if the Index is a valid tool of prediction, I politely declined the radiation, choosing a path different than most doctors recommend and most patients agree to. I was afraid of the cure.
Potential complications from radiation are no joke. They range from fatigue to heart damage (because my problem was on the left side) to being at an increased risk for permanent arm swelling to another cancer from the radiation. While the most serious side effects are rare, it still felt like dousing the house with DDT in order to get rid of ants likely to stay out on the front porch anyway. And there are limits to the amount of radiation that can be used on any one body part. So if the cancer were to come back after doing radiation, that treatment option would have been blown.
The doctor guilted me. And so did a few friends. Doing a lot is widely thought to be better than doing less.
“Just have it cut off–or do the radiation!” one said. “Your family needs you.” (In other words: the more you do, the more you love them.) Which put me through the wringer. But I stayed on course.
Because I now really believe that treating something doesn’t necessarily mean you’re curing it.
Sometimes it just means you’re treating it.