Why patients deserve full disclosure about treatment

What if your doctor made you sicker by doing what he was supposed to do and providing the standard of care?

The question isn't an idle one. My friend Amy Reed is facing death after undergoing a procedure that hundreds of thousands of women have each year.

She had a hysterectomy to deal with a benign tumor called a fibroid. After her sixth child, it made more sense to have her womb removed instead of dealing with low blood counts and frequent doctor visits. A doctor herself, she needed the energy to juggle clinical practice, a lab, a bustling home, and her husband, a driven cardiothoracic surgeon.

She texted me that routine testing after surgery showed the tumor was malignant. The diagnosis, leiomyosarcoma, is the kind that makes other doctors call patients "unfortunate."

As heartbreaking as this was - I keep thinking about her children, ages 12, 10, 8, 6, 4, and 15 months - we all know that rare and devastating diagnoses happen.

What no one realized was that the way her surgeon at Brigham and Women's Hospital in Boston did the procedure made her prognosis go from bad to worse.

Most patients, even doctors, aren't interested in the details of surgery. Why would they be? When I take my car to mechanics, I couldn't care less what tools they use, so long as they get the job done and don't charge too much.

Amy felt the same way about her hysterectomy. The surgeon didn't mention any of the technical details that might affect her outcome. She found out later that instead of taking out her uterus in one piece, the surgeon had taken it out in little pieces, or morsels. The process, morcellation, is standard in minimally invasive gynecologic surgery. It makes surgery with tiny incisions easier.

Why does this matter? With each pass of the morcellator, little bits of the uterus fly around the abdomen. This has no import in most surgeries, because the body absorbs these bits over time. But, in Amy's case, each little piece carried a seed of her cancer.

Unbeknownst to anyone, she came out of surgery with little outposts of sarcoma all over her abdomen. In cancer-speak, she went from Stage 1, localized disease, to Stage 4, metastatic.

As physicians do, her husband and friends asked various gynecologists what they thought. It turns out morcellation is quite common, even the standard of care when cancer isn't suspected. The gynecologists at my institution, where Amy and I trained together, use it, too, but have a protocol against its use in cases like Amy's involving large fibroids.

The risk of spreading malignant cells through morcellation is tacitly accepted but rarely discussed with patients.

Yet in today's world of informed consent, it seems unfair to subject someone to a risk like this without bringing it up.

In Amy's case, she had offered to undergo a more traditional surgery with a single, big incision to make the procedure easier for the surgeon. The cosmetic results are usually worse, but after six kids, her belly had been through a lot. Her surgeon pooh-poohed the open option, touting the benefits of minimally invasive surgery.

She has since undergone another operation to remove almost every organ in her abdomen and pelvis except for her intestines. Her new incision stretches from her breastbone to her pubic bone. So much for appearances.

For now, I and the rest of Amy's supporters have joined the ranks of those who wear silicone bracelets. Ours are purple, the color of leiomyosarcoma, so rare it shares a color with pancreatic cancer. In early January, we will shave our hair in solidarity, and we are trying to keep our heads up despite the odds. Amy and her family, based in the Philadelphia area, are hopeful but realistic. They want her to pull through, and also don't want Amy's experience to happen to anyone else.

Amy's husband, Hooman Noorchashm, has started an online petition through Change.org - http://chn.ge/19bEwFT - to get morcellation stopped. In response, the Brigham has changed how it explains the procedure to patients, and my institution is considering the same.

Amy's story, though, speaks to a more fundamental issue: Doctors call themselves partners in care with patients they treat, but they don't often share the information needed to make a truly informed decision. For Amy, the time she could lose to more advanced disease represents the difference in whether her youngest child remembers his mother. We are all rallying around her to help make sure he does.