Remembering Sandi Spivey: MBC advocate, research champion, and friend

Living Beyond Breast Cancer Helpline volunteer Sandra Spivey contacted us recently to let us know that she had decided to enter hospice. Sandi, who lived with metastatic breast cancer for 22 years, asked whether we would share her story. We consider this piece to be her last gift to the community she served so passionately throughout her life. Sandi was fierce, gifted, intelligent, direct, and just plain fun. In addition to her decades-long service to Living Beyond Breast Cancer, Sandi volunteered for a variety of our colleague breast cancer organizations. We are honored to fulfill Sandi’s wish, and we will continue to advocate for Sandi and all those with a metastatic breast cancer diagnosis, always. 

Her family will never forget the Thanksgiving dinner Sandra Spivey hosted in 1998. First there was the matter of the missing mashed potatoes — somehow Sandi, as everyone called her, forgot to make them. Second, one of the 18 guests spilled red wine on the new cream-colored carpet. Finally, there was a scene reminiscent of the Marx Brothers’ overpacked stateroom in Night at the Opera, as first Sandi and her mother retreated to a different room and then her middle and eldest sisters immediately barged in behind them, demanding to know what was happening.

Sandi was diagnosed with stage ll triple-negative breast cancer in 1995, at age 42. In 1998, she learned the cancer had returned. This time it was metastatic — cancer had spread to her bones, meaning the cancer could be treated but not cured. She was newly diagnosed and Thanksgiving was the first opportunity to tell her family.

Sandi was a beacon of hope for her fellow patients. She lived with metastatic breast cancer for 22 years and had more than 20 different types of treatment including “more than 200 bags of chemo,” as she put it. She created a 9-foot-long scroll documenting her cancer history.

Despite her crowded advocacy and treatment calendar, Sandi found time for her many passions. This included spending time with her grandchildren, taking road trips with her husband, Bill, in their Tesla, traveling with her sisters, volunteering at a cat rescue, cheering for the Angels, attending drill team competitions, and so much more.

Two months ago, Sandi, experiencing considerable pain, decided to forgo further treatment in favor of hospice. She died at age 68 on March 13, 2021, at home with Bill and their adult children, Tim and Allison.

Just living with metastatic breast cancer for 22 years is an amazing feat. But that is only one part of Sandi’s stage IV story — she was a tireless advocate for her fellow patients. Her family inspired these efforts.

As a stage II patient, Sandi had already started to get involved, thanks in part to something her then 13-year-old daughter said. “I know you have breast cancer and so did Granny,” Allison told her. “I know I’ll get it too, and I’m OK with that.”

Sandi was a board member for the Y-ME Orange County Breast Cancer affiliate for 5 years. Her interest in research and legislative advocacy grew as she attended several National Breast Cancer Coalition conferences.

“While going through treatment, I became very interested in the science of breast cancer because I didn’t want other women to have to go through what I did,” Sandi told Patient Resource magazine. “I also began attending National Breast Cancer Coalition conferences and graduated from Project LEAD, which prepares advocates to effectively participate in peer review panels where they review grant applications for research funding side-by-side with scientists.”

When Sandi was first asked to serve as a consumer reviewer for the Department of Defense Breast Cancer Research Program, she worried about keeping up with the dense scientific details in the grant proposals. She was relieved to learn her role was to focus on how the research might impact patients.

She inspired so many people in her life and reminded us that cancer does not define patients, rather the other way around, that is, how we live our lives in the face of hardship is what ultimately gives life meaning.

As a reviewer, Sandi strove to keep patient voices front and center. She asked many researchers what it would take to eradicate breast cancer. Some were surprised — these scientists perceived their roles as restricted to the small piece of the breast cancer puzzle specific to their hypothesis. Sandi emphasized a big-picture, patient-centric view. “Breast cancer advocates help remind the scientific community that what they do or don't do affects the lives of thousands who are facing or will face the disease,” Sandi said in her BCRP biography. “Advocates' timelines for solutions are short, and they often view progress as too incremental; scientists can spend years examining their hypothesis, and their results may never touch patients’ lives.”

Sandi’s experience on nonprofit boards, as well as her years working as a human resources executive, helped her navigate the political and bureaucratic realities of working with different advocacy groups. She was a born collaborator — she got things done.

In recent years, she served on the Komen Advocates in Science Steering Committee, the Breast Cancer Disease Orientation Team at University of California, Irvine, the Metastatic Breast Cancer Alliance Patient Advocate Advisory Group, the Komen MBC Advisory Group and the Orange County Komen MBC program committee. She participated in more than 20 scientific funding reviews for breast cancer research for Komen, the Department of Defense, and METAvivor.

As a peer helpline volunteer for SHARE, Living Beyond Breast Cancer, and After Breast Cancer Diagnosis, Sandi provided one-to-one support to nearly 100 people living with metastatic breast cancer and caregivers.

Ben Ho Park, MD, PhD, a researcher and clinician at Vanderbilt University Medical Center who collaborated with Sandi on Komen Advocates in Science and other projects, said she was far more than a breast cancer survivor and advocate — she was a dear friend.

“She inspired so many people in her life and reminded us that cancer does not define patients, rather the other way around, that is, how we live our lives in the face of hardship is what ultimately gives life meaning,” Dr. Park said. “Sandi and I first met at a metastatic breast cancer conference, and we became fast friends through our shared passion to help all patients with breast cancer through innovative and high risk/high reward research.”

Dr. Park added that Sandi was fascinated by the premise and promise that science could cure this disease. “This was most evident in how she advocated for patients, novel and innovative research, and above all else, keeping everyone's eyes on the goal of ending breast cancer. The legacy she leaves behind will inspire and remind us that we must continue to live our lives to the fullest, but also never become complacent in our quest to cure cancer,” he said.

Sandi Spivey was determined to push breast cancer advocacy beyond awareness campaigns. She acknowledged that awareness is important but insufficient on its own to make real progress against what remains a chronic, progressive, and ultimately fatal disease.

“If we want to make a difference the path is clear,” she said. “We must participate in the establishment of research priorities, provide meaningful feedback during research proposal reviews, and work side by side with breast cancer investigators.”

Thank you, Sandi, for showing us the way. We are proud to carry on your work and determined to forge even deeper bonds in the research community.

—Katherine O’Brien, Secretary, Metastatic Breast Cancer Network

Sandi Spivey’s legacy: Continuing her work

“When I grow up, I want to be Sandi Spivey.” That’s a comment patient advocate Kelly Shanahan frequently made at conferences, webinars, and metastatic breast cancer advocacy get togethers. “I called her my ‘she-ro,’” Kelly explained. They became great friends — visiting frequently in recent years at Sandi’s Laguna Niguel, California, house.

Kelly spoke with Sandi 2 weeks prior to her death. They spent some time talking about Sandi’s legacy and how the metastatic breast cancer community might carry on her work. Here are some of her ideas:

Educational program to help researchers work with advocates. “How many times have patient advocates gotten desperate emails from researchers for an advocate to join their project 3 days before a submission is due?” asks Kelly. “That’s not advocacy, that’s just collecting a required signature.” Sandi envisioned a webinar or recorded advocacy panel talk that would help researchers reach and truly partner with patient advocates. Another component could include a central database of advocates — no more random emails. The directory could offer some information on an advocate’s special interests and, of course, contact information. Meetings such as the San Antonio Breast Cancer Symposium could have a “Meet the Advocates” speed dating-type event, where researchers could spend time talking to advocates about the advocate’s work as well as collaboration opportunities.

More accessible conference opportunities. “Most conferences are currently virtual and are likely to ultimately continue in hybrid form,” Kelly said. “Where possible, can we waive fees and give more advocates, some of whom are independent or part of smaller organizations, a chance to participate?”

Keep the coffee chats going. Sandi played a pivotal role in ensuring patient advocate and researcher dialogue continued when COVID-19 prevented lab visits and in-person meetings. Working with other Komen Advocates in Science members, Sandi hosted online coffee chats with breast cancer researchers. “It was like two old friends, just casually talking — a very approachable scientific discussion,” said Kelly. “Sandy was instrumental in launching in the series, which I hope will continue. It would be lovely if the chats were renamed in her honor — the Sandi Spivey Memorial Chat or something similar.”