New friendship blossoms from glioblastoma diagnosis

Family, friends, colleagues, a health care team – they all provide important support for someone with an incurable cancer.

But there’s something about having a friend who’s going through the same thing – a knowing that comes from experience – that’s an invaluable form of support.

It’s something that Darlene Shaw, Ph.D., and Susan Staub have discovered with each other as each woman deals with a diagnosis of glioblastoma, a highly aggressive brain tumor.

Although each has lived in Charleston for decades, and they ran in similar professional circles – Shaw, professor emerita in the College of Medicine at the Medical University of South Carolina, is a clinical psychologist who capped off her career as chief strategy officer at MUSC while Staub worked in private practice as a therapist – they didn’t know each other until a mutual friend connected them after their diagnoses.

“It's amazingly important to have someone who is now a friend that's going through it, too,” Staub said. “Typically, we meet for lunch every week. We socialize, and our husbands have gotten to know each other, too.

“It's amazingly important to have someone who is now a friend that's going through it, too."

Susan Staub
glioblastoma patient

“When Darlene and I are together, it's very different than when I'm with, let's say, a friend who might say, ‘Oh, I'm sure you'll do fine!’ or ‘You'll live for years!’ or ‘Who knows; you might outlive me!’ I don't necessarily want to hear those kinds of comments. I want to stay grounded. And for me, it's been enormously important having Darlene.”

Shaw agreed. “I feel the same way. It's been great,” she said.

Although they have the same diagnosis, and their initial treatments were the same, they’re now pursuing different options. Staub is part of a clinical trial, while Shaw is using a wearable device that uses electrical fields to deter cancer cell division.

The different options that are available to them help to illustrate why seeking care at MUSC Hollings Cancer Center, the state’s only National Cancer Institute-designated cancer center, as well as home to the state’s only neuro-oncologists, is so important for treatment.

Neuro-oncologist Scott Lindhorst, M.D., said the neuro-oncology team works hard to ensure that patients have the opportunity to be involved in clinical trials, if they want.

“We're always looking for ways by which we can improve upon standard of care therapy,” he said. “And often that's at least offering patients the opportunity to be involved in clinical trials.”

Both Staub and Shaw are feeling well now, and they want to encourage others who might have a new diagnosis of glioblastoma to look beyond the scary statistics and see that it’s possible to continue living a full life with the diagnosis.

“It's certainly unfortunate to get cancer, and it's unfortunate to get such an aggressive, incurable cancer,” Staub said. “But Darlene and I have been healthy. We've been able to function in our lives. We've been able to enjoy life. We've been able to do some traveling.”

Diagnosing glioblastoma

Shaw was diagnosed in April 2024. She didn’t feel physically ill, but she knew that something was off. She was having word-finding problems; in other words, she could look at an object, know exactly what it was but be unable to come up with the object’s name.

She had an appointment with a neurologist, but it was a phone call with her niece that prompted a trip to the Emergency Department.

“I talked to her Friday night. I was walking around Colonial Lake, doing my laps and chatting. Then she called me on Saturday morning, and she said, ‘You know, you're not the same as you were last night.’ And that’s what prompted me to go to the hospital,” Shaw said.

From the MUSC Emergency Department, Shaw was taken to surgery.

“Based on my initial work up, I knew that glioblastoma was a possibility, but it wasn't a for-sure thing,” Shaw said. “But immediately after surgery, they told me it was glioblastoma.”

 

Given her experience working at MUSC, she immediately understood the seriousness of the diagnosis. Yet she praised the health care team that surrounded her in that difficult time.

“I can't emphasize too much how wonderful people were, in the ED and surgery – the whole experience.”

Staub, too, was diagnosed after having trouble with words. In her case, she would entirely lose her language.

“I had no language for maybe half a minute. This would occur twice during the day,” she said. “So I would have no language, and then it would come back. In my head, I ruled out a stroke. I ruled out Alzheimer's. I did not think about brain cancer.”

It was September 2024, and she was jetlagged after returning from Portugal. She mentioned her language problem to her son, Spenser Staub, M.D., who’s finishing up a pulmonary and critical care fellowship at MUSC. He said he would take her to the Emergency Department the next day.

“We went in, and Spenser asked for an MRI. He had been hoping that it might be a benign tumor. When he saw the MRI, you could tell by his face. He just turned white. He knew,” Staub said. “He stayed with me in the hospital for the three nights I was there.”

Staub was hospitalized over the weekend and had surgery on Monday. Remarkably, she was released to go home the following morning.

“My symptoms went away after the operation,” she said. “Saturday and Sunday at the hospital, my symptoms were worsening – or, part of that might have been that I knew what I had, and so I didn't try to cover it up. In Portugal, I was trying to cover it up.”

After surgery, both women had the standard treatment for glioblastoma – six weeks of chemotherapy and treatment with fractionated radiation, Monday through Friday. At that point, Shaw continued with the chemotherapy for five days each month while Staub enrolled in a clinical trial called AGILE.

AGILE is a worldwide clinical trial that is testing multiple drugs against glioblastoma. The design of the trial, with different arms using different medications, is meant to generate answers more quickly than a typical trial. Hollings is the only location in South Carolina offering the trial.

Shaw, meanwhile, is using the Optune Gio device. This portable device consists of a wearable battery pack and adhesive patches that are placed on the scalp to emit electrical fields tuned to a frequency that targets glioblastoma cells.

She noted that it’s yet another option for patients.

“I think all of several options are really viable for people. There’s no single right way to treat this,” she said.

Considering the future with incurable cancer

Cancer doesn’t affect only the patient. It ripples through the lives of family and friends, upending plans and expectations.

“I've seen both my two youngest kids come up with a plan B because they both want to be here. It's very sweet, and they're lovely people. But I regret that I've had that impact on them,” Staub said.

A diagnosis of glioblastoma, in particular, is scary not only for the patients but for everyone around them, and so both Shaw and Staub suggested that anyone newly diagnosed with glioblastoma look for support from other patients and find health care providers who are supportive.

 

“There are all kinds of Facebook support groups. Like most things in life, it's a bit of a mixed bag, but you can learn about the illness and treatment options,” Shaw said.

She also noted the support she’s gotten from MUSC.

"At MUSC, there have been at least two support luncheons. I see them as being very supportive at every level, from when you walk into the ED to now,” she said.

Staub is realistically hopeful about the future.

“I think both Darlene and I are hoping for good health as long as we can have good health,” Staub said. “We're not naive about it. We do know what it's going to look like up the road. But even that doesn't seem to be as scary because my sense is that I'll have good health until I don't.”

But, she added, “We expect a recurrence.”

At the same time, Staub is confident that she is getting the best possible care.

“I also have extremely positive feelings about MUSC. I receive excellent care from the doctors and nurses. A glioblastoma diagnosis is not for the faint of heart, but the treatment is tolerable, and the oncology unit is very supportive. It can be overwhelming. Darlene and I are so fortunate to have one another so we don't feel alone.”

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