• By Dana Sparks

Sharing Mayo Clinic: A rare tumor next to her heart

February 10, 2019

When Alice Alimurung was diagnosed with a rare and life-threatening tumor, she embarked on a hunt for a surgeon with enough expertise to remove the mass. The search led Alice from the Philippines to Minnesota and Mayo Clinic, where she found an experienced surgical team that saved her life. For more than 15 years, Alice 'Peachie' Sacasas Alimurung knew she had a rare tumor next to her heart. Physicians told Alice, who lives in Manila, Philippines, that the tumor couldn't be surgically removed. Despite that, she was able to live a normal life as she raised her children. Then in March 2018, Alice woke up in the middle of the night and feared she was having a heart attack.

"It felt like there was a 200-pound gorilla on my chest," Alice says.

When Alice got out of bed and walked around, the feeling subsided. But the next day, she had an echocardiogram, followed by an MRI and CT scan. They revealed that Alice's tumor had grown substantially. It had spread into her vena cava, the major blood vessel that brings blood into the heart, and it was pressing against her heart. The scans also revealed the nature of the tumor, which Alice hadn't known before: mediastinal paraganglioma.

A rare tumor that generally grows within the vascular tissues near the heart, major blood vessels and esophagus, mediastinal paraganglioma has been reported only 150 times in medical literature. In some cases, the tumor can become cancerous. Treatment for mediastinal paraganglioma is surgical removal, when possible.

The discovery that Alice's tumor was invading vital cardiac structures set off an urgent, international search for a surgical team with expertise to treat her.

"I was really praying about it, asking for God to guide us. We were so desperate about this," Alice says. "We finally found Mayo Clinic in Rochester."  Read the rest of Alice's story.
This article originally appeared on the Sharing Mayo Clinic blog.