Changing Your Doctor When the Fit Isn’t Right: Shanette Caywood
Shanette Caywood met her first oncologist on a day when she thought she was simply having a cyst drained.
Her primary care doctor had diagnosed an aching lump under Shanette’s arm as a cyst and sent her to have it drained at a hospital near her Chicago home.
“The doctor at the hospital didn’t touch me,” says Shanette, who was 32 at the time and a single mother with two young sons and a full-time job. “I took off my shirt and she just looked at me and said, ‘That’s not a cyst.’”
She then was given an ultrasound, mammogram, biopsy and other tests. That same day, after the results were complete, an oncologist came in to talk with her. The oncologist said Shanette had stage IV breast cancer, with metastases to her liver and spine, and explained the treatment plan she recommended. Although Shanette didn’t ask, the doctor also told her she would probably live for 2 to 3 more years.
The oncologist’s attitude and delivery of the information seemed “nonchalant,” Shanette says.
“I understand that she’s a doctor and she deals with cancer every day. But her approach didn’t make me feel comfortable. It made it worse than what it already was. I didn’t feel any compassion or anything [from her] when she told me.”
There would be no surgery, the doctor said, because she did not do surgery for people with metastatic breast cancer. Treatment would include strong chemotherapy 3 days a week.
“I thought, ‘OK, who’s gonna take care of my kids?’” Shanette recalls. She worried about how the treatment would affect her job as an account executive and wondered, “What if I can’t get up and work?”
The oncologist’s statement about her expected survival was especially unwelcome.
“You’re giving me a prognosis, but I’m not a statistic. I’m an individual,” she says.
Making a Change
When Shanette left the hospital that day, her appointments were set to begin treatment there. Yet she felt upset and alienated by the doctor’s manner and dreaded what she saw as a harsh and demanding treatment plan.
She didn’t know what to do. “I was just so distraught,” Shanette remembers. Her mother and cousin, who had been with her when she was diagnosed, stepped in to help. They searched online for other oncologists and hospitals with breast cancer expertise. They also spoke with people who had been treated for cancer at those centers.
“They brought the information to me. It was very overwhelming and hard to even believe what was happening,” says Shanette.
She met with several doctors. One was an oncologist who often sees people with metastatic breast cancer. That doctor talked in a compassionate and comforting way.
“It was just a completely different feeling than how the other doctor presented herself,” Shanette says.
The new oncologist told her that surgery could be an option at some point and didn’t say how long she thought Shanette might live. Because she had HER2-positive metastatic breast cancer, the doctor said she qualified for a clinical trial for lapatinib (Tykerb), a chemotherapy given in a pill. Oral treatment meant office visits once every 3 weeks instead of 3 days per week.
The doctor’s approach, treatment plan and the ability to take part in clinical research all added up to the right fit for Shanette.
“I immediately knew that’s where I wanted to be. She was the doctor that was best,” she says.
The clinical trial medicine worked well for a time and shrank the tumor considerably. When the next chemotherapy didn’t work, Shanette had a mastectomy and radiation. She wanted reconstruction, but her oncologist didn’t think it was a good idea then. After the disease was stable for 2 more years, her oncologist and other doctors approved reconstruction.
Her therapy now consists of trastuzumab (Herceptin) and tamoxifen, plus denosumab (Xgeva) to strengthen her bones. In October, Shanette will be 5 years past her diagnosis. She is now 38 and works full-time.
“What if I had started treatment at that first hospital? What about my quality of life? I just couldn’t see it as being the same as what I have now, which is good,” she says.
In her activities as an LBBC Young Advocate and as a mentor with Imerman Angels, Shanette now talks with women who are thinking about changing their doctors or other healthcare providers. Quality of life is important, she says, especially for those with metastatic breast cancer.
“If you’re with a doctor or provider who you don’t care for and you feel like you can’t talk to them — if you don’t feel comfortable — you definitely need to say something,” she says.
She encourages people to read about treatment options for their breast cancer diagnosis and make decisions according to what’s best for their individual life and goals. For those who feel their doctor isn’t listening to them, she suggests writing down treatments options you’ve heard about and any questions or concerns you have, reviewing it with the doctor and talking about what is possible and what isn’t.
She values the “two-way” relationship she has with the oncologist she chose and advises others to look for a provider who will communicate back and forth. Her doctor calls and emails her. Shanette can page her and talk to the doctor, her nurse or other staff. She admits it takes work, but says it’s been worth it. She has made suggestions to her oncologist for changes in her treatment plan and, after discussion, changes were made.
“I feel like I’m a person when I go there, not like I’m part of a group of people who are lumped together,” she says. “I feel like I’m Shanette.”
This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by 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 or the Department of Health and Human Services.