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June 13, 2005

First Do No Harm

There's something about this story of the girl whose parents had opposed radiation treatment for her cancer that just annoys me.

From NYTimes.com:

CORPUS CHRISTI, Tex., June 10 - A bitter standoff between the parents of a 12-year-old and Texas social workers and doctors over radiation treatment ended on Friday on a somber note with a medical report that the girl's Hodgkin's disease, which had seemed in remission, had reappeared.

The parents, Michele and Edward Wernecke, lost custody of their daughter Katie a week ago, after opposing radiation therapy as unnecessary. When the new test results were announced at a hearing in juvenile court, the parents quickly complied and agreed through their lawyers to let doctors set the course of treatment, which could resume in days.

"The Werneckes are devastated," said Daniel F. Horne, a lawyer for the couple. Mr. Horne said they were too distraught to comment.

Mrs. Wernecke went with a doctor to tell Katie the news before a family gathering under state supervision to celebrate her birthday. She will turn 13 on Saturday.

The agreement on treatment appeared to douse another hot spot in the field of patients' rights. Coming on the heels of the polarizing right-to-die case of Terri Schiavo, Katie's case raised the provocative question of when parents lose their rights to control a child's medical treatment. Under Texas law, parents may withhold medical treatment from a terminally ill child, but not in lesser situations.

"If the benefits of treatment are clear and clear harm can result from withholding care, ethically the state has the right to step in," Dr. Robert Klitzman, co-director of the Center for Bioethics at Columbia University, said.

Allowing a disease to inflict harm, Dr. Klitzman said, "is a form of child abuse."

I know it's an utterly tragic situation; now that tests have shown that Katie Wernecke's disease has returned - possibly during the intervening time when the parents sought to block radiation treatment - I'm sure her parents are second-guessing the decisions that they made. Everyone suffers in this situation.

I guess what annoys me is the apparent hubris of the parents in thinking they knew what was medically best for their child, rather than accepting the knowledge and expertise of three oncologists who were all prescribing the same treatment - chemotherapy followed by radiation.

This treatment is standard for the mid-range stages of Hodgkin's - an early stage (Stage I) is typically treated solely with radiation because the disease is so localized. The latest stage, Stage IV, does not usually include treatment with radiation due to the extent (spread) of disease - people at Stage IV typically have disease both above and below the diaphragm, or they have disease that has spread to their organs and/or bone marrow. In Stage IV the person would need full-body irradiation, which is usually seen as being too high-risk when compared to possible benefits.

So Katie's oncologists recommending chemo followed by radiation was in no way experimental or "out there" - it's the gold standard for treatment. After four months of chemo, the girl's scans showed the disease to be in remission. At this point, her parents decided that was good enough. She didn't need radiation because her disease had been eliminated; adding the radiation treatment would only harm a "healthy girl."

I hope that the oncologists in question adequately explained the treatment of Hodgkin's disease and what it entails. But maybe they had poor communication skills and never explained - in a way the parents and the girl could understand - the treatments and potential side effects.

A CT or PET scan is no guarantee of remission. The only true indicator of remission is a lymph node biopsy, and even then, it's possible that the cancer in the lymph nodes in a secondary site was not as responsive to treatment as the node that was biopsied.

A scan is used to measure the difference in size of the affected lymph nodes. A decrease in size is seen as an indication that the treatment (either chemo or radiation) is having an effect. But it is by no means an exact science. It cannot measure on a microscopic level whether or not there are any active cancer cells in those tissues.

Just one active cell left behind means your cancer regrows. Recurrent disease is more difficult to treat than the initial disease.

This is why it is important to do everything possible to treat cancer the first time. I was diagnosed as a Stage IIA - this meant that I had disease on just one side of the diaphragm (in my case, above the diaphragm), with no poor-prognosis indicators (night sweats, weight loss, bulky disease). However, I had enlarged lymph nodes all over my chest (under both arms, both collarbones, and between my lungs), which meant that the disease was definitely on the move.

I did research and learned that the standard treatment for my stage was either chemotherapy alone, or chemotherapy plus radiation. The disease-free rates (the percentage of people who are still in remission five years after finishing treatment) didn't seem all that different - I believe it was 80% with chemo and around 87% with radiation. Both very good numbers, all things considering.

I decided early on that I only wanted to deal with Hodgkin's disease one time, so I sought out an oncologist who would treat me with both chemo and radiation. Fortunately my oncologist was a cowboy who told me that he was going to "pump (me) full of drugs until (I) turn green."

Strangely enough, that was exactly what I wanted to hear.

I had six cycles of chemo (I think Katie only had four because of her age; the patient gets sicker and weaker the more cycles of chemo they have), followed by a CT scan. MY scan showed that my lymph nodes were still enlarged - the opposite of Katie's situation. This was taken to mean that I still had active cancer cells; the chemotherapy had been partially effective, but not fully. I had disease over too big an area to risk radiation, so my only recourse at that point was a stem cell transplant.

So I had another lymph node biopsy, which showed that my nodes were enlarged due to scar tissue, not active cancer. I went on to have three weeks of daily radiation treatments, and I've been in remission for almost nine years.

It's impossible to say if I would have done equally well with just chemo. There are certain risk factors and side effects from radiation treatment (thyroid problems, soft-tissue tumors, breast cancer), but fortunately I'm past the point when any of those things are likely to happen.

Chemotherapy, which the girl's parents approved of, is also not without risks. First, you're much more likely to have a fatal reaction to a chemotherapy drug than you are to a treatment of radiation. I actually DO have long-term side effects from chemo (scar tissue in my lungs). I'm past the point where I'm much at risk for secondary leukemia or other blood disorders. Chemo can also cause heart damage, nerve damage, or sterility, depending upon the drugs you are given.

So this idea that the potential side effects of radiation was the breaking point for the parents is just ... odd. You're already taking a huge risk by agreeing to chemotherapy.

I sincerely hope that this girl's disease is able to be treated successfully with radiation and/or additional chemotherapy, and that the time fighting against the advice of her oncologists doesn't end up negatively impacting her survival.

There's one quote from the many news stories that sticks out for me. The parents rationalized their decision by saying that Katie herself didn't want to have radiation therapy; she talked about having kids, and that she'd rather risk getting cancer again than have radiation treatment.

I'm sorry, but that kid was 12 years old and scared. This is when parents step up and make more level-headed decisions than "I'd rather risk getting cancer again." Because if her cancer had returned, chances were going to be that the treatment would not be more chemo (although they might have tried that first), it would be a stem cell transplant.

A stem cell transplant has much greater long-term risk than radiation, AND there is a greatly increased chance of dying from the treatment itself than there is with radiation. It's not even close. The short-term AND long-term side effects are much more grave when you choose the path of "I'd rather risk getting cancer again" rather than choosing radiation treatment.

I don't know anyone who died from radiation treatment for cancer; I know at least six people who died from a stem cell transplant.

Posted by Highwaygirl on June 13, 2005 04:56 PM to the category Current Affairs
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