Clinical Trials

A few posts back, I linked to an article by Mary Elizabeth Williams, a writer fro Salon.com who is dealing with a melanoma diagnosis, and writing about it. As I said in that post, I think Williams is one of the best writers out there when it comes to writing about cancer patients' experiences, as well as cultural and social issues related to cancer.

Yesterday, I happened to catch just a couple of minutes of an interview she did on the radio show Talk of the Nation. The 18 minute interview is now available online, which I'm happy about, because I wasn't able to hear the whole interview. She speaks for a few minutes, and then responds to a few callers.

Williams focuses especially on her experience with a clinical trial, one that involved immunotherapy, and has been very successful for her.

I recommend you listed to the podcast (it packs in quite a bit in a short time), but I'll highlight a few things that stood out for me:

• In Williams' first article about her experience, she calls herself a "lab rat," and tells a couple of stories about how she did feel like she was not treated as a person. One doctor in particular came into her room with some interns, and didn't refer to her at all, but kept discussing "the tumor." Later, when she suggested having the melanoma removed, this doctor said to her, "We need the tumor," trying to talk her out of having it removed because it would ruin the trial. It amazes me that doctors can be so insensitive, though I've certainly heard plenty of stories. I have to say that, for the most part, I've been lucky with the health professionals I've seen.
• A caller was concerned about his wife joining a trial, thinking that the experience Williams described was evidence that doctors in trials don't care about the patients. Williams made it very clear that doctors in trials are very excited about prolonging and saving peoples' lives. I think this is a common misconception about trials. But, really, the researchers' job is to keep you alive, isn't it? Someone mentioned a trial to me recently, and said, "With my luck, I'd get the placebo." But it doesn't work that way -- not for cancer studies. If it's a comparative study, you might get the new treatment, but if you don't, you don't get a sugar pill -- you get another accepted treatment. They want to see if the new one is better than the old one. No one is going to withhold treatment and just let you die.
• Williams also made it very clear that she asked not to see the "lab rat" doctor anymore. While a trial does involve giving up some freedom of choice, the patient is still empowered and in control of many things.  Patients should never give up the power to say No.

Finally, a caller with breast cancer discussed her reasons for not going into a trial, which were certainly valid. When Williams and the host asked how she was doing, she said, "Well, I'm still going through chemo. It hasn't been 5 years, so I'm not considered a survivor yet."

To her I say: Oh, lady, you a survivor. The National Cancer Survivors Day Foundation says that anyone who has been given a diagnosis and is still alive is considered a survivor. If you make it home from the doctor's office, you are a survivor. You've made it as far as you have, empowered yourself to make difficult decisions about your own treatment, worked with your family to make sure you have been doing the right thing -- how can you not call yourself a survivor?

I like Williams' focus on empowerment, and I wish she'd been able to bring up something like that to this caller. I'll forgive her, though, because she's such a  good writer...