Nearly 1.7 million cases of cancer are diagnosed in Americans each year, requiring hours of tests, treatment and potential lifelong changes.
Patients encounter a barrage of choices about possible treatment options, and sometimes, after choosing, face regret. A University of Virginia student is testing a guide for patients who are weighing a specific breast cancer procedure, and hopes to understand how to help patients through cancer treatment and on to a healthy life.
“If you regret what you bought, you can always go back and switch it,” said Crystal Chu, a doctoral student at UVa and an oncology nurse at Sentara Martha Jefferson Hospital. “You can’t return a mastectomy.”
Chu has talked with many breast cancer patients who, when faced with a tumor in one breast, consider removing both. For her dissertation, Chu decided to create a decision aid for a process called contralateral prophylactic mastectomies, in which a person decides to remove the healthy breast and the cancerous breast. The procedure has become more popular after actress Angelina Jolie had a preventative double mastectomy in 2013.
However, Chu said, preventative mastectomies don’t guarantee a patient won’t develop a later cancer, and the procedure can cause significant changes to a patient’s body, mental health and romantic relationships.
Decision aids are interactive tool that provide information about a procedure and then ask a patient to provide information about their priorities and values and weigh various pros and cons about possible treatments.
“Most people assume cancer treatment is pretty straightforward,” Chu said. “But the truth is, because tumors can be so different at different stages, there are many choices people can be faced with.”
Decision aids are often paper checklists; Chu’s provides information about CPM and then asks the patient to check boxes about how they identify as an individual. The patient weighs different costs of the procedure — such as possible medical complications and a different relationship with a spouse or partner — versus potential, perceived benefits — such as symmetry after breast reconstruction or increased ease of mind about a recurrence of cancer.
After checking boxes, Chu then reviews the patient’s responses and discusses the pros and cons.
“They may still be unsure, and that’s OK, because it’s mainly meant for them to take home and think about it,” Chu said.
In preliminary tests, she has measured patients’ internal conflict after using the aid.
“We see that even if this doesn’t change the decision they already wanted, it makes them more confident that it’s the right thing for them,” she said.
Dr. Lynn Dengel, a surgical oncology researcher at UVa and a breast and melanoma surgeon at Martha Jefferson, is currently studying two related decision aids in her work, which also were developed by Chu and other colleagues at UVa. Those aids ease decision-making for patients with minimally invasive breast cancer who are considering biopsies and for women who have an increased lifetime risk for breast cancer and are considering screening MRIs.
“When you have options where either is appropriate from a medical position, it’s good to get the patient involved,” Dengel said. “Sometimes in the clinical practice, it’s harder to get info about values and who a patient is.”
Decision aids aim to guide patients from various backgrounds through a clear and reasoned decision-making process, she said.
“It’s a very patient-driven research field, which is really wonderful for the field of oncology,” she said.
Dengel and UVa nursing professor Randy Jones are both on Chu’s dissertation team. Jones studies health disparities in chronic illnesses, particularly in prostate cancer, and whether decision aids can help men as they navigate treatment options. He is currently using a $2.2 million grant from the National Institutes of Health to study how men feel about starting, changing and stopping treatment for prostate cancer, and how they weigh decisions about extending life versus improving their quality of life.
“Patients do say that a decision aid does help a patient understand their treatment options better,” Jones said.
Chu’s aid, he said, could be an important clinical tool for a popular procedure, and, if appropriately shared with clinicians, could help guide good decisions rather than just be another task for overloaded doctors to perform.
“[CPM] is really popular right now, and people are doing it, but without much evidence about what it will do to them long-term,” Jones said. “This aid could have a positive impact if it can be included in a regular clinical visit, and for clinicians and providers to see that they can have the same amount of time and interactions, but for that time to be more engaging and impactful.”
The aid is being reviewed by a university board now, and Chu hopes to reach out to 50 women in the spring who may be willing to use the aid as they consider CPM. She also hopes to recruit women who already have had the procedure so they can offer input.
Chu previously worked in Martha Jefferson’s cancer research office and would see patients who had just been diagnosed and then, later, who had just finished treatment. They opened up to her about the disease and their treatment’s impact on their emotions and their family, highlighting, she said, the importance of weighing those impacts before a procedure and of the whole medical team’s role in guiding a good decision.