Breast Cancer Trial Participant Gives Back to St. Joe’s as Patient Adviser
Sandy Lymburner doesn’t like the term “survivor” in reference to her battle with breast cancer, but she accepts it graciously and gratefully. The 57-year-old Ann Arbor resident is four years cancer-free this September, and so far, she’s not only surviving – she is thriving.
She’s quick to credit her success to the team who took care of her at St. Joseph Mercy Ann Arbor Cancer Center.
“You feel like your core group of physicians has their arms around you, and are just taking you in, and are helping you all along the way. I’ve never felt that I’ve been a number or statistic,” she said, adding, “I just felt the care here was incredible, and I wanted to be able to share the good things with people within the hospital.”
Weeks after she was diagnosed with invasive ductal carcinoma in the right breast and lobular cancer in the left, Sandy opted for a double mastectomy in September 2014. She got her chemotherapy port the next month, fully expecting that was the next course of action.
But on the day of Sandy’s first scheduled chemotherapy session, Dr. Philip Stella – medical director of oncology at Saint Joseph Mercy Health System, and a long-time friend of Sandy’s – suggested Sandy might be able to bypass chemotherapy altogether.
“He came into the room with a big smile on his face,” Sandy described.
Dr. Stella had sent in her breast tumor samples for some molecular testing, and found that Sandy had some of the lowest cancer recurrence risk scores that he had seen.
That made her a good candidate for the groundbreaking Trial Assigning Individualized Options for Treatment (Rx), or TAILORx trial.
The trial, launched in 2006 and supported by the National Cancer Institute, analyzed breast tumors – using the Oncotype DX Breast Recurrence Score – and assigned a cancer recurrence risk score to each individual. Based on those scores, the trial randomly assigned participants to hormone therapy alone, or a combination of hormone therapy and chemotherapy. Sandy, who received a score of 10 and 7 (on a scale of 100), was randomly selected to receive hormone therapy alone.
“Every time I tell the story of being able to walk out of the Cancer Center and not have chemo, I get very emotional,” Sandy said. “I never expected this, and I was fortunate to be treated at St. Joe’s and given the opportunity to participate in a clinical trial,” she added.
She chose to still have radiation therapy – to tackle the microscopic cells – but avoiding chemotherapy and its drastic side effects was a huge morale booster for Sandy, who began journaling and running every day.
Instead of receiving chemo treatments, Sandy started on tamoxifen, and was given Lupron (leuprolide) shots to put her into menopause. In January 2015, Sandy switched from tamoxifen to an aromatase inhibitor to stop estrogen production. She tried three different aromatase inhibitors, before eventually settling on letrozole.
A year later, Sandy completed a half-marathon, and to mark four years of being cancer-free, she ran her third half-marathon in Chicago on Sept. 23.
“Still to this day, I cannot believe that I didn’t have to have chemo,” Sandy said.
“It is amazing the numbers of people that the study has been following, and how great the outcomes are,” she added.
In June, the National Cancer Institute said new findings from the TAILORx trial show no benefit from chemotherapy for most women with early breast cancer. Researchers hope the new data will help inform treatment decisions for many women with early-stage breast cancer, especially for those deemed to have an intermediate risk of recurrence.
Today, Sandy is channeling her gratitude in giving back to St. Joseph Mercy Ann Arbor. She has been closely involved in the Cancer Center redesign and renovation project as a patient adviser. The $24 million Cancer Center is due to open in November 2018.
The experience, Sandy said, has been enlightening and gratifying, to know that she is helping shape the care of those following a similar path.
“To have a hospital ask a patient for their input is just incredible,” Sandy said. “You don’t always get that even in your job. But to know now that hospitals are going to a patient-centered model is just fantastic, because you can learn so much from the patients.”
Sandy also noted that her husband, who continues to accompany her to each appointment, is treated with the same kindness and compassion as she is. She hopes that sharing her experience at St. Joe’s can help shape the future of cancer care for others.
“They are so keen on making you feel at home,” Sandy said.
To learn more about Cancer Care at St. Joe’s Ann Arbor, visit stjoesannarbor.org/cancer. As a member of the National Cancer Institute Community Oncology Program (NCORP), St. Joe’s Ann Arbor leads the Michigan Cancer Research Consortium (MCRC), a network of 13 hospitals that collaboratively enroll thousands of patients on clinical trials each year. The MCRC-NCORP has been continually funded for 24 years, with 100 studies open at any given time. It is one of 47 research programs established by the National Cancer Institute (NCI) to provide patients with access to national cancer research studies while remaining in their own communities. Learn more at www.mcrconline.org.