By Heather Millar
I stole that headline idea from the biologist who used to be president of my university. He used to say that he wanted a university full of one-handed administrators. That way, he said, no one could say, “On the other hand…”
What does this have to do with the cancer patient experience? Everything, actually.
Let me explain: I’ve been talking and emailing with a dear friend of a dear friend. She was diagnosed with breast cancer just before Christmas, not the present she’d expected!
The tumor they found was small, about 2 centimeters in diameter, if memory serves. At that size, I think her cancer would still qualify as “Stage I.” But then, on further testing, the docs found another tumor in another part of the same breast. This tumor was also small, but it concerned her medical team. If she had a lumpectomy, the surgeons weren’t sure they could save enough of her breast for it to look natural after surgery. And, the fact that the cancer had appeared in two places suggests, though it doesn’t prove, that her cancer may be more aggressive.
This cancer acquaintance is whip-smart. She went to a famous university and has a Ph.D. She combed through all the studies she could find that seemed relevant to her case. She peppered her doctors with questions. She talked to her family. She reached out to breast cancer survivors like me. After lots of researching, exploring and soul-searching, she decided that the all the data seemed to show that outcomes were about the same for patients who underwent mastectomy and for those who opted for lumpectomy plus radiation. She decided upon mastectomy, removing the entire breast.
So far, I’ve outlined her case rather breezily. But think about her situation for a minute: She has decided that the best way to save her life is to allow surgeons to cut off a piece of her body. That’s a momentous decision, no matter how you slice it.
When I talked to her about it, she seemed both determined and resigned. Another way to say that is that she was brave and strong, but also scared.
Then, this week, a new breast cancer study came out in the journal Cancer: This study found that lumpectomy plus radiation seemed to show a better rate of survival than mastectomy.
Coincidentally, the surgeon who performed my lumpectomy led the research team for this study: Dr. Shelley Hwang, who moved from UC-San Francisco to be chief of breast surgery at the Duke Cancer Institute in North Carolina.
Like most studies, Dr. Hwang’s came with a lot of caveats. Every cancer patient should always remember that scientists are all about specifics, about details, this particular patient, this particular situation. In contrast, we patients yearn for overarching guidelines, for certainties.
Dr. Hwang pointed out that this study was “observational,” that is, she and her team analyzed more than 100,000 cases of women who had Stage I and Stage II breast cancer. They found that women over 50 who had hormone-receptive cancers seemed to do better when they had lumpectomies and radiation, rather than mastectomy.
That’s a very specific statement: Patients of a certain age do better with this certain kind of treatment. Even more crucial, this is only an “observation.” In scientific speak, that means that it shows a possible link. It is not proof. It does not mean that lumpectomy plus radiation is always better than mastectomy for all patients. The study did not take into account huge blocks of patients: those who do chemotherapy and hormone therapy after their breast surgery.
My cancer acquaintance, who is comfortable with the academic language of scientific studies, grasped all these nuances. And yet, the study still rattled her. She’d made this wrenching decision, and now here comes some information that says, “On the other hand…”
However smart she is, she wants a one-handed doctor, one who can assure her that she’s chosen the right path. Alas, that doctor does not exist.
And yet, how we cancer patients yearn for such a doctor. A recent study showed that 20 percent of breast cancer patients are completely overwhelmed by the amount of information they had to absorb to make treatment decisions.
I second the judgment of Caroline’s Breast Cancer Blog: It’s probably closer to 100 percent. If people like my super-educated acquaintance get rattled by all the data as they try to find the right path, what about all the millions and millions of patients who don’t have Ph.Ds?
Of course, most of us want some say in our treatment. Most of us don’t want the doctor to dictate everything. We’re talking about our bodies, not the doctors’.
If we can’t have one-handed doctors, what about doctors who are trained to translated medical information in a way that’s understandable to most patients? I’m a science writer and I remember feeling like I’d been dropped into a medical school lecture hall when I asked my oncologist for more details.
What about doctors who can say, “In your situation, I’d suggest XYZ protocol.” And then they could explain, “Based on this study and that study, I think this works best for patients in your situation.” Then the doctor could explain the most common side effects. He or she could give patients a little handout with more explanation. He or she could recommend two or three websites that could offer more information.
Doctors will always be splitting hairs, drilling down to the most specific, saying, “On the other hand…” So if we can’t have one-handed doctors, we should at least demand plain-spoken ones. Medical schools, listen up!