Valley support groups bring breast cancer issues to light

By Lindsay Walker
Twitter: @AzNewsmedia

Support groups, like many in-person gatherings, took to the internet to meet in 2020 when the COVID-19 pandemic took hold. Many of them, including groups for breast cancer patients and survivors, are still meeting virtually due to the virus, as immunocompromised patients are at higher risk than most for contracting a serious case of COVID.

But Jacqui Hops, a licensed social worker at the Mayo Clinic, said that even meeting virtually has a positive impact on the women she works with. Hops currently runs two different groups: one for the newly diagnosed just beginning their cancer journey and one for survivors.

“Especially for that first group in that first year there, I’m there to facilitate their mutual support, supporting one another, getting that sense of universality that they’re not alone,” she said. And that’s kind of your classic support group, where we share, we support one another, encourage one another. And then the other group I have is for anybody who has gotten their breast cancer treatment here at Mayo and we have speakers in that group. And it’s all about how to live your best life as a survivor of cancer.”

According to data from the American Cancer Society, approximately 114.3 people for every 100,000 Arizonans were diagnosed with breast cancer from 2013 to 2018, with a death rate of 18.5 people. In 2021, the organization estimates that 5,850 people will be diagnosed with the disease and 900 will succumb to it.

Each group headed up by Hops meets by Zoom once a month. The first-year patient group usually hosts about 6 to 10 people, with the survivors’ group hosting about 20 to 30 per week. All were treated for their cancer at Mayo, though time is not a factor. There are no plans to meet in-person in the near future, but Hops hopes to one day open her survivors’ group to people in the Valley outside of the Mayo network.

Hops said the challenges each patient or survivor faces is unique, but the feelings of isolation and fear are universal — and so are the side effects of treatment.

“I think so many of the women, at least in the group for the newly diagnosed, feel blindsided by the diagnosis, feel betrayed by their bodies,” she said. “Really overcoming all the ups and downs of treatment. I like to say that chemo is not for the faint of heart.”

any of the survivors Hops works with also talk about the long-term side effects once they reach remission, such as fatigue or brain fog, as something many don’t talk about.

But Hops said that the ‘Hollywood’ version of cancer, where someone gets diagnosed with the disease and is given a swift death sentence, is a common misconception.

“Breast cancer is very treatable,” she said. “There are amazing advances that have happened just within the last two years. People get cancer, get cured and move on.”

Dr. Shakeela W. Bahadur, a medical oncologist at Banner MD Anderson Cancer Center in Gilbert who works with breast cancer patients, agrees with that assessment.

“I think they should feel positive that there is so much research going on to try to find more treatment options and hopefully a cure one day for breast cancer,” she said. “We’re hopeful.”

Early detection is key, she said, and Dr. Bahadur recommends self-exams and mammograms, particularly for women over the age of 40.

Dr. Bahadur said her hospital works hard to help patients who have been diagnosed, offering dieticians and acupuncturists, and a patient advocate who can help them navigate the system. The system can often be a challenge, especially with the cost of treatments.

“The cost is significant, they have to be here weekly,” she said. “They have to be working and then come here every week for chemo. Then you have side effects and by the time you get over it and you’re feeling great, it’s time to go back again.”

With those challenges, the hospital tries its best to match patients or survivors with each other so they can bond over the shared experience. Dr. Bahadur describes it as a dating app, where people are matched by age or interests.

A shared experience is one of the many reasons Dr. Michelle Halyard formed her nonprofit, Coalition of Blacks Against Cancer. Based in Phoenix, Dr. Halyard, who serves as the dean of the medical school at the Mayo Clinic, the coalition offers support groups, education and community outreach for Black men and women.

Founded in 2010 and now a designated nonprofit, the coalition came about through a partnership with Mayo, the Phoenix chapter of LINKS INC., and Sigma Pi Phi Fraternity.

“It really was founded to provide two main areas of focus,” she said. “One is to support Black breast cancer survivors and their families and supporters, and we define survivors as anybody that’s been diagnosed with breast cancer, so not just people who have beaten their cancer but anybody that’s along the cancer journey from diagnosis through the rest of their life. That part came about because of the recognition that in the Phoenix metropolitan area, because the Black community is such a small percentage, often women did not see other women or men with breast cancer that looked like them.”

The second area of focus, according to Dr. Halyard, is education surrounding breast cancer and breast health.

Black men and women are biologically predisposed to the more aggressive triple-negative breast cancer, which comes with a higher mortality rate, already exacerbated by health care inequities, a lack of insurance or a lack of family history. The breast cancer mortality rate for Black people is higher than any other ethnic group, Dr. Halyard said. Teaching about the signs and symptoms is one way the coalition aims to reduce that rate.

Monthly support groups meet around the Valley, including one in Phoenix and one at the Antioch Church of God in Christ in Peoria, which now take place virtually; educational events are also streamed on Facebook. The group is also partnering with Pilgrim Rest Baptist Church in Phoenix on Oct. 16 for free mammograms, as well as offering COVID-19 testing and vaccines at no charge.
Dr. Halyard said that the pandemic has had a significant impact on survivors and heightened their feelings, making a support group invaluable.

“It’s the physical part of it, but there’s also the psychological support,” she said. “Your life changes after a breast cancer diagnosis and how do you deal with that? It’s a very resilient group and very supportive. It provides a safe, supportive environment of women who are all Black and have that in common, it provides that bond.”