Written By Robin Warshaw, Contributing Writer
Reviewed By Harry D. Bear, MD, PhD
Diagnosed at age 38 with ductal carcinoma in situ (DCIS) and invasive ductal carcinoma (IDC), both in her right breast, Ronise was ready to move forward with treatment. Her primary care provider referred her to a breast surgeon. As Ronise and her wife sat in the waiting room, another patient reassured them about the doctor. “He’s wonderful,” she said.
Approach Feels Wrong
In the examining room, the surgeon’s manner was a mismatch with what Ronise expected from a healthcare provider. He didn’t offer much information, discuss surgical options, make recommendations or encourage her involvement.
“I was particularly put off that he said to his nurse, ‘We’re gonna go in and she’s gonna have a mastectomy,’” Ronise recalls. “He didn’t include us or me in the decision-making.”
Ronise and her wife work at a university and had done extensive research online about breast cancer. “My wife was reading studies on Medline. She wanted to be able to ask questions and get some considered response,” says Ronise. “Not being able to have those educated discussions with your medical team is very off-putting.”
She felt stunned by the interaction with the surgeon. She believes he may have thought a mastectomy was needed because the tumor was large (12 cm), but he did not communicate that to her.
Looking back, she thinks his approach reflected differing age and generational expectations about patient-provider collaboration. “The woman I spoke with in the waiting room was older (as was the surgeon) and his manner probably better fit her style,” she says.
Finding the Right Provider
A friend recommended a surgeon who was a much better match. That surgeon, who also had a young child, discussed breast-sparing surgery and reconstruction.
Testing had shown that Ronise likely had triple-negative breast cancer (that finding was later confirmed). The surgeon told Ronise that chemotherapy was very important for her and recommended that she begin neoadjuvant (before surgery) chemotherapy as soon as possible. Research has shown that neoadjuvant chemotherapy can be used to increase the effectiveness of breast conservation therapy (lumpectomy followed by radiation) without sacrificing any of the long-term survival benefits of chemotherapy. Triple-negative breast cancer is especially responsive to this treatment regimen.
The surgeon also recommended an oncologist with research experience in triple-negative breast cancer. That oncologist also was a good fit for Ronise. He described things well and allowed ample time for discussions.
Chemotherapy shrank Ronise’s tumor dramatically, but she had a lot of fatigue and some nausea. Her wife was with her at all appointments. “The boys had just turned three. That was probably our biggest challenge,” she says.
Her doctor thought chemotherapy had reduced the tumor enough to make lumpectomy possible, but the margins after surgery were not clear. Ronise had a mastectomy and reconstruction of her right breast the following month. Radiation came next, then implant surgery and reduction of her left breast for symmetry.
Connecting With the Triple-Negative Community
Ronise joined the Triple Negative Cancer Sisters group on Facebook, which provides her with support and information as she shares experiences with other women who have a similar diagnosis.
Although she had chemotherapy and surgery, as a woman with triple-negative breast cancer, Ronise is not able to benefit from taking anti-estrogen therapy, such as tamoxifen or an aromatase inhibitor, to reduce the risk of cancer recurrence.
“There is frustration, fear, worry and concern,” she says about living with triple-negative disease. “In a lot of ways, I’m speaking not only for myself, but for my sisters in the group. There’s nothing we can take preventatively.”
Group members share highs and lows. One woman is pregnant, and another recently had a baby. “We have these joyful times that give us hope,” she says. “Some of the women in the group also experience recurrences, and that is terrifying.”
“We continue to hold each other up through the hard times,” she adds. “We connect not only online, but also by phone and in person at conferences like C4YW or [during] personal visits and local events.”
After treatment, Ronise participated in a clinical trial studying how physical activity and eating habits may affect breast cancer recurrence. Now, almost 4 years after diagnosis, she tries to follow the still-unpublished study’s premise that daily exercise and fewer calories can help reduce risk.
She has scar tissue, or fibrosis, around the implant, which is being monitored to detect any cancer recurrence. Her ongoing care includes seeing her physicians quarterly and taking vitamin D, calcium and a multivitamin. She’s not happy with the symmetry of her breasts post-reconstruction but is unsure about further surgery.
“You start to think, ‘How much does this matter? Am I being vain? Or am I just trying to recapture something that I can’t?’ It’s all tied together,” Ronise says.
“In some ways, it is helpful to sit back and stop doing anything for awhile,” she adds.
This article was supported by Cooperative Agreement Number DP11-1111 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.