Cancer survivorship program aims to marry research, clinical care

June 15, 2022
a seated man and woman smile at the camera along with their large white fluffy dog, who sits next to the woman and appears to smile
Gail Lang, with her husband Mark and dog Luca, still feels the aftereffects of cancer treatment, as do many cancer survivors. Photo by Anne Thompson

Gail Lang looks great. Certainly, that’s what friends and acquaintances say, and with good reason: She’s trim and elegant as well as friendly and outgoing. But how she looks is not how she feels. More than a year out from surgery and radiation for a rare upper nasal cavity cancer called esthesioneuroblastoma, she still struggles with fatigue, aches and arthritis, not to mention the emotional aftereffects of cancer treatment.

“I feel very blessed to be here, compared to the alternative, but there’s still so many real challenges that go along with not only the emotional, mental and financial experience but just in the day-to-day life aspect of things,” she said.

Her experience isn’t unusual. It’s why June is recognized as National Cancer Survivor Month, the purpose of which is to raise awareness of what cancer survivors might be dealing with, even after treatments end.

The esthesioneuroblastoma wasn’t Lang’s first bout with cancer. She was treated in 2008 for a noncancerous neuroblastoma and in 2012 for breast cancer. In both cases, she returned to work after treatment and more or less picked up with her life again, so the duration of aftereffects this time caught her off guard.

Lang’s treatment included surgery performed collaboratively by a neurosurgeon and an ENT surgeon to remove the tumor, followed by five weeks of radiation, performed twice a day, Monday through Friday, in careful doses so as not to affect her optical nerve.

“I’ve been on a journey that, at night, still haunts me,” she said.

In addition to being, as she says, a three-time customer of MUSC Hollings Cancer Center, Lang is also a member of the Hollings Advisory Board. In this capacity, she got an early look at a survivorship initiative proposed by head and neck surgeon Evan Graboyes, M.D., and was immediately intrigued.

“It resonated with me, based on the path I’ve been on,” she said.

Now, with Graboyes at the helm, Hollings is launching the Survivorship and Cancer Outcomes Research (SCOR) Initiative, with a threefold mission: to pursue research on survivorship to address unmet needs, to provide patient-centered survivorship care that is based on the latest scientific research and to build a pipeline to train the next generation of survivorship and cancer outcomes researchers.

More cancer survivors than ever

Thanks to an increased emphasis on cancer screening and improved treatments, there are more cancer survivors than ever. In the U.S. alone, there were 16.9 million cancer survivors in 2019, and that number is expected to grow to 26.1 million by 2040.

In South Carolina, there were almost 281,000 cancer survivors in 2019.

And people are living longer after their cancer diagnoses. The American Cancer Society reports that 67% of survivors were diagnosed five or more years ago.

All of those statistics mean more people are trying to find their way in a “new normal,” Graboyes said.

“To be free of cancer, while that’s an amazing cause of joy and celebration, it’s not a time that’s without sadness or side effects,” he said. “And so, I think that’s the balance that survivorship takes, which is recognizing that the goal is to be free of cancer – and screening and amazing treatments have helped patients get there – but it comes at a cost.”

Among the side effects that cancer survivors may deal with are:

  • Anxiety.

  • Depression.

  • Social withdrawal.

  • Negative body image.

  • Guilt.

  • Chronic pain.

  • Fatigue.

  • Sleep difficulties.

  • Cognitive dysfunction (brain fog).

  • Nerve damage.

  • Financial burdens.

Graboyes became interested in survivorship because he saw the immense needs of his head and neck cancer patients.

“Coordinating with behavioral medicine or psychosocial oncology, physical therapy, occupational therapy, speech language pathology, radiation oncology, medical oncology, dental – just so many groups involved. Care coordination was a big part of what we did,” he said. From there, he began to conduct research into body image-related distress among head and neck cancer patients and how to mitigate it.

Evan Graboyes, M.D., stands next to a desk 
Dr. Evan Graboyes has seen in his patients the toll that cancer treatment can take. It's what got him interested in survivorship research and care. Photo by Emma Vought

“That was what got me excited about the clinical and research aspects of survivorship. And then from there, we took a much larger step backward and fixed a broader lens on the topic,” he said.

Nationally, some cancers are ahead of others in thinking about survivorship, he said. Breast cancer, for example, generally has robust services attached. That tracks with Lang’s experience: She said she felt there was a more holistic approach when she had breast cancer.

Graboyes said that the goal is to build upon existing survivorship programs, where there are areas of commonality across cancer types, such as dealing with side effects of chemotherapy or radiation, and also account for the subtle nuances of different cancers.

In doing so, he would like to pull together people from across the various colleges and departments at MUSC who are already working with cancer survivors.

Some of the existing programs include:

Even though there are people already working with cancer survivors, there are “tremendous gaps” in the scientific knowledge of cancer survivorship across the nation, Graboyes said.

“The scientific field does not know optimal ways to identify cancer survivors experiencing long-term side effects and link them to evidence-based supportive services and treatments. So, for example, fatigue – there are certainly many studies suggesting that maybe exercise is helpful. But there is so much that we don’t understand about why fatigue happens, and evidence-based treatments for fatigue are not widely available and utilized in clinical spaces,” he said.

“In addition, pain, insomnia and fear of cancer recurrence are really common among cancer survivors and make it challenging to accomplish day-to-day activities, but we don't know why some survivors are affected but not others. We also don’t know the best ways to manage these conditions and make sure that the most cutting-edge treatments are available to all cancer survivors as part of routine clinical care,” he continued.

"This new initiative from Hollings is a key step to making sure that cancer patients and their caregivers are having the best quantity, and quality, of life.”

Evan Graboyes, M.D.

Lang is interested in the research that can help to produce those answers. She and her husband were so impressed by Graboyes’ outline for the initiative that they made a donation that adds to the $2 million commitment over five years that Hollings made to the SCOR program.

“I need to know, ‘Is there a better beyond where I am today?’ That’s really important to me because that’s what I want to strive for, and how do I get it?” she said. “If this is the best it’s going to be, then I need to know because I have to work on accepting that. And if there’s more that can be done to physically feel better and have the energy I had before, as well as take care of myself to prevent a recurrence, what am I supposed to be doing?”

Graboyes hopes that an organized survivorship research center will help to answer questions like this for patients like Lang. By having a center that includes both research and patient care, patients will have access to the latest evidence-based care, he said.

“Cancer treatment is somewhat delimited in time,” he said. “But survivorship, hopefully, goes on for a very, very, very, very long time. This new initiative from Hollings is a key step to making sure that cancer patients and their caregivers are having the best quantity, and quality, of life.”