mistake

Medical Errors and Breast Cancer

A headline in today’s New York Times got my attention: Medical Errors May Cause Over 250,000 Deaths a Year. I didn’t die from my breast cancer surgeon’s medical error, but I did get a firsthand look at how these errors are glossed over by hospitals and insurance companies alike.

Short version: In March 2009, my breast cancer surgeon gave me a double mastectomy but missed the cancerous lump. I discovered the error a week after my surgery when the surgeon removed my drains and, reflexively, my fingers flew to the spot on my body where the lump had been and — gulp — it was still there. (Here is the blog post.)

My lump had been close to the skin, high on the breast. Six o’clock. The lump’s location meant I wasn’t a candidate for a lumpectomy. So, I chose a double mastectomy without reconstruction. Six weeks after my initial diagnosis, I had no breasts but the pea-sized lump of breast cancer still sat brazenly on my chest.

And so began my crash course in how to advocate for yourself in the surgeon’s office. In short, I refused to leave until the surgeon acknowledged his mistake, took accountability for it, apologized and scheduled a do-over mastectomy. (This is a big part of my memoir FLAT…and is way too long to detail here but suffice it to say it was a horrifying and traumatic experience.)

Two months later I got a lesson in how insurance companies deal with medical errors. Paperwork arrived in the mail showing my surgeon billed my health insurance company his full fee for the do-over mastectomy. I called the company to tell them they should deny the charge. After all, it was the surgeon’s mistake. Why should he profit from it? The insurance rep told me it wasn’t his job to parse what was or wasn’t a mistake. If the billing made sense, they paid it. And, just like that, my mistake was recast as a recision. In the records, my breast surgeon simply “went back for more tissue.” No one mentioned it again.

I was a health journalist. I interviewed three surgeons for the job. I chose the one with the most experience and the best credentials. I did everything I could possibly do, except control for human error. The NYT article reports that if medical errors were considered a disease it would be the third leading cause of death in the US behind heart disease and cancer. Whoa.

No one expects health care practitioners to be perfect but 250,000 deaths a year? We can do better.

Radiation Mishaps Make News

As I’ve discussed here, I suspect radiation played a role in the onset of my breast cancer. How big of a role? I’ll never know. But between the ages of 12 and 14, I regularly received blasts of radiation for the monitoring of scoliosis. I don’t know exactly how many x-rays came my way in total, but I do know that protecting my breasts was never mentioned.

Later, as a health writer, I grew increasingly wary of medicine’s willy-nilly use of radiation. My concern escalated in 2008 when I wrote a piece for Time Magazine about the potential hazards of CT scans, especially for children. The basis of the story was two studies indicating an increased cancer risk associated with multiple CT scans. I was blown away to learn that each CT scan packs as much radiation as up to 500 conventional x-rays. Of course, CT scans can be a life-saving diagnostic tool and should absolutely be used when necessary, but my reporting found that they are widely overused.

Not to mention, the operator-error factor. One of the most disturbing tidbits I uncovered in reporting that story was from a CT technician who admitted that even though newer scanners can be adjusted to give children up to 50% less radiation (a standard recommendation), many technicians simply forget to reset the machine.

Needless-to-say, I was thrilled to see the New York Times tackle the issue of radiation safety these past couple of weeks, and I want to help them spread the word. What first grabbed my attention was this article about the lack of radiation safeguards. The people most often in harm’s way? Cancer patients.

Thousands of radiation errors are made every year, many of which are never reported to the FDA. Here are just a few of the most egregious examples from the NYT’s coverage, When Medical Radiation Goes Awry:

  • Patient A had just completed treatment for a brain tumor and received additional radiation intended for Patient B, who had breast cancer.
  • A 31-year-old woman with vaginal cancer was overdosed because of confusion over the method of measuring the strength of radioactive seeds…causing an overdose of radiation to her rectum and vagina.
  • A doctor implanted radioactive seeds in the wrong location in a patient with prostate cancer. The radiation oncologist then failed to promptly interpret a post-implant CT scan, which would have revealed the error.
  • A patient with breast cancer received a 50% overdose for 10 treatments because a wedge (a gadget used to shape the radiation beam) was mistakenly left out.
  • Another breast cancer patient, 32 years old, received 27 days of radiation overdoses (three times the prescribed amount).

Thankfully, I’m not the only person who was flabbergasted by the magnitude of these medical errors. The NYT’s coverage culminated today in the news that the FDA is finally going to “take steps to more stringently regulate three of the most potent forms of medical radiation, including increasingly popular CT scans.” I’m not a big fan of the FDA. I think the agency is spread too thin and given too little resources to get the job done. But, at the very least, maybe, someone is finally paying attention.

Shock

He missed the tumor.

I’m headed back to surgery on Monday.

I can’t believe this is happening.

I was thrilled to get the drains out yesterday. Finally, I felt almost-human again. Reflexively, my hand went to where the tumor had been. Of my body’s typography, this is a location I know intimately. Which is why I was disturbed to feel a lump. Albeit, a smaller lump (more of a button than a broach) but still very much a lump. I pointed this out to the surgeon. He said it was probably “fatty tissue.” I made him feel it. “Nothing to worry about,” he assured me. I assured him–I’m a worrier. I need to know what this thing is. He tsk-tsk’ed and sent me downstairs for an ultrasound. His nurse smiled brightly.

Slowly, things began to unravel. The ultrasound confirmed the lump was solid–a huge calcification at its core. But was it a new lump or the same lump? A biopsy was ordered. But before they could plunge a needle into my aching chest, Mary remembered the lump was tagged. During my biopsy in January, the radiologist inserted a tiny metal tag next to the mass. She explained that it acts like a beacon shining brightly on future mammograms to help techs sort new lumps from old. At the time, I felt like an animal tagged and released back into the wild, but yesterday that tag made all the difference.

Alerted to the tag, the radiologist switched course and ordered a mammogram (yup, a mammogram. don’t ask). Afterward she and I stared at the display in disbelief. There was my tumor in black-and-white. Metal tag still firmly in place. Shining brightly. Illuminating the spot where–without a shadow of a doubt–the cancer still lies.  

So many questions.

So much sorrow.

So much disbelief.

So much anger. 

Forgive me if I don’t post for awhile, but I don’t have words to describe how I’m feeling.