Diagnosis, Pause, Decision

image of a Lynn Dworzanin and her daughter walking down the street

Lynn Dworzanin (right) and her daughter shop in downtown Ann Arbor.

Read the research papers about cancer and decision-making published by members of Cansort, the Cancer Surveillance and Outcomes Research Team.
Photo Credit: Edda Pacifico

Slow down, get informed, start treatment

It's only natural when you hear the word cancer to want to spring into action to get rid of it. It's also natural to think about people you know who've had cancer and the decisions they made to treat it. You're afraid. You have families and friends to think about. You need to decide on your treatment . . . but not so fast.

A cancer diagnosis is a whirlwind, says Steven Katz, M.D., M.P.H., co-director of the socio-behavioral research program at the U-M Rogel Cancer Center. Yet, even though few cancer decisions need to be made as if it is a medical emergency, most are treated as such.

"I'm not talking about waiting months," Katz says. "I'm talking about an extra visit. Take time to discuss options with your spouse. Get a second opinion if you're not sure. We don't need to make all decisions during their first encounter with their doctor."

Katz leads a cancer center research team that studies treatment decision-making. Because breast cancer patients often face a variety of treatment options -- surgery, chemotherapy, hormone therapy, radiation -- studying them could help patients with other cancer types make decisions in the future.

The researchers analyze topics like:

Appropriate and personalized treatment for each patient
How patient viewpoints impact decision-making and care
How diagnostic test results influence decisions
How quality of life during treatment and survivorship affects decisions

Katz says a good doctor helps patients navigate choices and evaluate factors like overtreatment (more than enough treatment) or undertreatment (a patient stops treatment too soon or refuses treatment).

"Patients should be encouraged to allow the intensity of these immediate reactions to subside before committing to mastectomy prematurely. Physicians should not permit excessive treatment delays to compromise outcomes, but the initial few weeks surrounding the diagnosis are more effectively utilized by time invested in patient education and procedures that contribute to comprehensive treatment planning as opposed to hastily coordinating impulsive, irreversible surgical plans."

Lisa A. Newman, M.D., M.P.H., in the Sept. 3, 2014, issue of the Journal of the American Medical Association (JAMA).

CONSIDERING: Life, Health, Body Image, Recurrence

Lynn Dworzanin had been an oncology nurse practitioner for 24 years, so getting an annual mammogram was a way of life. What looked like sea salt on her scan was ductal carcinoma in situ, the most common form of non-invasive breast cancer. DCIS isn't life threatening, but having it upped the chances of an invasive cancer in the future.

Treatments include lumpectomy with radiation therapy or single mastectomy. Because of the size of her DCIS, it was recommended that she have a quadrantectomy, a surgery that removes one-quarter of the breast.

Making matters more stressful, her Rogel Cancer Center physician was concerned about possible cancer in the opposite breast. Multiple biopsies were required to know for sure.

"The first thing you think of when diagnosed with cancer is I want to live and be here for my children," Dworzanin say.

In addition to the fear of cancer in her second breast, Dworzanin knew having a quadrantectomy would result in dramatic asymmetry of her breasts. Both factors weighed heavily on her mind.

image of Lynn Dworzanin and her daughter side-by-side

Lynn Dworzanin (right) and her daughter
Photo Credit: Edda Pacifico

What issues did she take into consideration?

She was only 50, married and a mother of two daughters.
The constant worrying about a potential future cancer in her second breast.
Developing cancer again meant more treatment, possibly chemotherapy, radiation and hormone therapy.
Quadrantectomy or a single mastectomy would result in less than desired cosmetic outcome and poor body image.
A double mastectomy might not be medically necessary.
A double mastectomy would alleviate worries about future breast cancer.
A double mastectomy would allow her to have a better cosmetic outcome and improved quality of life.

Informed Decisions, Sound Decisions

Dworzanin chose the double mastectomy.

"When you have early stage breast cancer, you don't ever want it to come back and have the potential need for chemotherapy," Dworzanin says. "Every woman's situation is different. For me, it was eliminating the fear and worries, avoiding the need for additional cancer treatment and quality of life by having a good cosmetic outcome."

Despite knowing there are no survival advantages to undergoing a double mastectomy, she has no regrets and is happy with her surgical outcome and body image. Learning she was cancer free after surgery was a huge relief.

Dworzanin's sentiments echo what Katz has learned through research: Take your time and be informed.

"I think sometimes people regret a decision if they make it too quickly," Dworzanin says. "Get a second opinion. Talk to other women. It's your own personal journey so take the time to get all your information. Whatever decision you make will be the right one for you."

Read Thrive, Winter 2015

Learn more about treatment decision-making:

Read the research papers about cancer and decision-making published by members of Cansort, the Cancer Surveillance and Outcomes Research Team.
Meet Louis Spino who had to make tough choices around his pancreatic cancer diagnosis: Learning to Choose