Cancer answers

Doctor helps launch Web site after own illness

Doctor helps launch Web site after own illness

MyBiopsy.org to educate patients about different types of cancer in layman's terms." />

Melissa Haneline
The Post and Courier

Dr. Kim Collins, professor of pathology and laboratory medicine at MUSC, volunteers with the College of American Pathologists to produce a Web site called MyBiopsy.org to educate patients about different types of cancer in layman's terms.

Dr. Kim Collins knew her own cancer. She'd culled through other patients' tissue samples, peered at the sick cells under the microscope, teased out the subtleties of the disease and filed reports that changed their lives.

But when she felt something strange in one of her own breasts while changing clothes one day four years ago, she doubted — denied — that what was there could be the illness she was so acquainted with in her work as a pathologist.

So she went to see her doctor, and when she learned the truth, her intimate knowledge of those cells haunted her. She prayed the tumor was a hormone-positive cancer, less aggressive than the HER2 type that's more likely to recur after treatment. If she had to have breast cancer, she reasoned, let it be hormone-positive.

It wasn't, and it already had spread to three lymph nodes and started to break free of the nodes and into her pectoral muscles. At 39, with no family history of the disease, Collins began the cancer patient's treatment march, enduring a double mastectomy and a whopping "dose-dense" chemotherapy regimen every other week, designed to beat the bad cells into submission without a break between treatments. Then, radiation therapy and months of getting used to life in a new body.

During her treatment, which changed course as new advances shot from the research pipeline in the months following her diagnosis, she had one advantage over the average breast cancer patient.

She knew this stuff cold. She understood the intricacies of her particular type of cancer, which is among more than a dozen forms of the disease, because she'd discovered it, seen it and touched it in her lab at the Medical University of South Carolina.

But she'd never known cancer on this side of the medical record, as a patient fighting the disease. So when she got back to work, it was with a new mission: to help teach cancer patients the facts on the increasingly complex world of diagnosis and treatment.

As scientists learn more about how rogue cells behave the way they do, about their genetic underpinnings and the medicines that best attack them, cancer treatments often can be tailored individually.

Which is to say: If your mother had ovarian cancer 20 years ago or your neighbor had lung cancer last year, the path you take to beat breast cancer today looks very different than either of theirs did.

But Collins and her colleagues with the College of American Pathologists saw a hole in the vast wave of information new cancer patients have to choose from: nowhere to easily find specifics on what different cancer types mean and what types of treatment are available for each.

The group formed a team of about 10 doctors to build the Web site they envisioned, launching www.mybiopsy.org this year.

They're adding new information all the time, but so far, patients with cancers of the blood, breast, prostate, bladder, colon, lung, head, neck, skin and ovaries can find easy-to-understand information to answer questions they'll have after reading their often confusing biopsy reports.

Ultimately, Collins says, an educated patient is a more comfortable patient, perhaps even one who's more likely to survive their disease.

"By communicating and having the patient understand their diagnosis, you have greater success with treatment," Collins says.

Unlike jargony, scientific studies, the site boils down the latest in cancer diagnostics and treatments for a lay reader who doesn't have a medical background. Collins says she keeps her mother in mind as the typical patient who might use the information.

Take invasive ductal carcinoma, for instance, which is the most common type of invasive breast cancer, making up 65 percent to 85 percent of all cases. The Web site describes how the tumor feels and looks both to the patient and on a mammogram. It's a hard lump with irregular borders, harder, firmer and more anchored than a benign breast lump, with, perhaps, some pulling of the skin over the tumor or the nipple pulled in. On a mammogram, it looks like a mass "with spikes radiating from the edges."

Next, the page outlines how the oncologist and pathologist determine the cancer's stage and test it for hormone receptors, an important indicator of what treatment might work best.

Patients also can find information on what questions to ask their doctor, what to expect during various treatments and what other Web sites can provide supplemental information.

Today, Collins is nearing her five-year mark after diagnosis. She remains healthy, and because of her own experiences as a patient, she is a bit more mindful of what those samples in her lab mean.

"There's someone behind that medical record number," she says. "That puts more passion in what I do."