Helping Advance Phyllodes Tumor Research

By Debbe Geiger
October 19, 2023
Wedding photo shows bride, groom and grandparents

Karen Kump (right), with her family at her granddaughter's wedding. (Left to right: Elliot Williams, Natalie Williams, Jake Kump, Karen Kump)

Karen Kump of Elko, Nevada, knew the lump on her right breast should be checked by a doctor when she first noticed it in July 2022. “But my granddaughter was getting married, and I wanted the attention to be on her,” she said. Kump, 78, didn’t know the mass was a rare type of breast cancer called a phyllodes tumor. Within two months, Kump needed a mastectomy because it had grown so big, so fast. Now, the retired schoolteacher is participating in phyllodes tumor research at Duke Health. “I’m hoping others might benefit from what I went through,” she said.

Phyllodes Tumors Are Rare; Getting an Accurate Diagnosis Can Be Too

When the lump in Kump's breast ruptured, she went to her local hospital's emergency room. The doctors sent her to the nearest cancer center, 230 miles away in Utah. Since the tumor was growing fast, the surgeon removed it and her right breast immediately. The Utah team correctly diagnosed the tumor as a phyllodes tumor. That doesn’t always happen because phyllodes tumors comprise less than 1% of all breast cancers. Malignant phyllodes tumors are even rarer.

Radiation therapy followed her surgery to reduce the chance of the tumor returning to the skin or chest wall where her breast was. Unfortunately, radiation therapy doesn’t prevent it from coming back elsewhere. Just one day after Kump finished 33 rounds of radiation therapy, a CT scan “revealed I had a spot on my left lung,” she said. Her Utah doctors suggested she see a specialist in phyllodes tumors. Kump’s family found Laura Rosenberger, MD, a breast surgical oncologist at Duke and a nationally recognized phyllodes tumor specialist.

Nationally Recognized Phyllodes Tumor Experts at Duke

Dr. Rosenberger helped Kump coordinate her care with Duke’s team of phyllodes tumor specialists including medical oncologist Juneko Grilley-Olson, MD. Rosenberger arranged for Kump to have genetic testing to see if she carried a gene that put her at risk. A genetic mutation is to blame in about 15 percent of cases, said Dr. Rosenberger. “Often, we don’t know what puts people at risk. If she carried one of those genetic mutations, we would offer genetic testing to her family members and increase the frequency of her future cancer screening.” Kump’s testing was negative.

Dr. Rosenberger connected Kump with Betty Tong, MD, a thoracic surgical oncologist at Duke who removed the tumor from Kump’s left lung in February 2023. Kump “was deemed to have no evidence of disease,” said Dr. Rosenberger. Six months later, new tumors were found in both of Kump’s lungs.

Duke Experts Coordinate Care with Local Medical Team

Kump completed a series of chemotherapy sessions to treat the new tumors near her home in Nevada. Dr. Rosenberger and other members of her Duke medical team coordinated her care with her local doctors. That’s common practice for many of Dr. Rosenberger’s patients who travel to Duke for its phyllodes expertise. Dr. Rosenberger said, “We partner with the local oncologist and team so she doesn’t have to make every single visit here. We can direct and help with her care from afar.”

Participating in Phyllodes Tumor Research to Help Others in the Future

Chemotherapy reduced the size of the tumor in Kump’s right lung, and she underwent surgery to remove the tumor in September. She will return to Duke for surgery on her left lung soon. In the meantime, she is participating in research led by Dr. Rosenberger in hopes that one day they will find a way to treat this aggressive tumor effectively.

“It’s so important to do this research,” said Dr. Rosenberger. Because this is a rare tumor, “we’re never going to be able to design a thousand patient clinical trial and try out new drugs in people.” With help from patients like Kump, Rosenberger is developing a pre-clinical (meaning not in humans) model so she can study the tumor in the lab and watch it grow. Having cells from Kump and other patients “allows us to learn a lot about something very rare and test new therapies in the lab before trying them in patients,” Dr. Rosenberger said.

Kump understands that Dr. Rosenberger’s research won’t likely help her. “I’m hoping other people will maybe benefit from what I went through,” she said. Perhaps that means one day Dr. Rosenberger and her colleagues will find an effective treatment or a cure.

Learn More About
Phyllodes Tumor Care at Duke