Donna Angelo knew something was wrong inside her body.
She could feel it. Despite dismissals by doctors saying it was nothing and one misdiagnosis after another, she knew no one had discovered the truth. Something was terribly wrong inside her body and it was something out of the ordinary. Today, Angelo knows the truth.
She had one of the rarest forms of cancer — malignant neuroendocrine tumors, which account for less than 1 percent of all malignant disorders in the United States. Most physicians are not even familiar with the disease.
Angelo said she is sharing her story because the nightmare of knowing something is wrong, but not knowing what it is, can be a harrowing ordeal. It can also happen to anyone unless the public and physicians raise their awareness about this rare cancer.
Angelo and her husband, Bobby, were a Rhode Island couple who moved to Florida where she worked as a marketing rep for a pharmaceutical company until Feb. 2011.
“I had always had digestive issues,” she confessed. “In Florida I went to five different gastroenterologists and none of them could figure out what was wrong with me,” Angelo said. “One doctor told me basically it was just stress, to which I gave him a piece of my mind. I told him if I was a man he would not be treating me that way. He would go to the ends of the earth to find out what was wrong with me. I told him that I knew my body and there is something wrong.
So he sent me to an oncologist at Moffitt Cancer Center in Tampa. I saw the doctor there and he did some endoscopic ultrasounds and thought he saw something in one of my bile ducts.”
A closer examination revealed she had pancreatitis, but they discovered nothing else. “They had one of the top neuroendocrine tumor doctors there, but he sent me on my way and said there was nothing more he could do for me,” Angelo recalled. “I felt OK for a short while, but then started to not feel good again. There was a specialist at the University of Florida in Tampa and I went back to him.” Still, an accurate diagnosis of her specific condition eluded them. She said, “I had these raised round rashes on my neck. I had gone to a dermatologist and he had taken samples — said it was dermatitis and gave me a topical cream. But the doctor knew one of the things that happens when you have celiac disease is you can have that kind of a rash.
So one of the pieces of blood work he did was for celiac disease. It came up positive. At that point we moved to Cleveland in 2014.” Realizing something was still wrong inside of her, Angelo said she and her husband went to one of the top 10 gastroenterologists working in Chattanooga. She asserted, “Because I had celiac disease, he never looked beyond that. He looked at my liver, my bile ducts, my pancreas and thought I wasn’t getting the nutrients I needed and said that is why I was losing weight and was in pain.” Angelo said she was still being misdiagnosed, adding, “This went on for a few years.
Then, in May 2016, I went up to Rhode Island to my friend’s mom’s wake and funeral.” It was during this visit Angelo said she became ill to the point of vomiting green bile from 12 a.m. to 4 a.m. She was taken by her friend to the ER at Our Lady of Fatima Hospital, where one of the doctors sent her for a CAT scan. Afterward, a group of surgeons came in and explained she had a small bowel obstruction.
After treating her, Angelo said the doctors were able to reverse her symptoms, but told her when she returned home to immediately go and see her gastroenterologist and make an appointment with her surgeon. “They had seen something on the CAT scan,” she said. “They knew I had to travel home, was already weak and didn’t want to burden me.”
The doctors at Fatima sent her CAT scan to her gastroenterologist who met with Angelo as soon as possible and told her there was a possible nodule and added, “You have a neoplasm, a growth in your liver.’ I know it wasn’t there a year ago,” Angelo said.
A second CAT scan revealed two growths in the liver, which were initially thought to be one thing (atypical hemangioma), but a biopsy revealed another. Angelo and her husband were called back to the office where her doctor told them the growths were malignant neuroendocrine tumors. Angelo explained, “There’s always a primary tumor. These were in my small bowel, which meant they had already spread. It was stage 4, because it had already metastasized to my liver. It’s a very rare cancer. Most people have never heard of it.”
“The initial treatment is always to get the primary tumor out. So I was immediately scheduled for surgery. I went to Dr. (John) Gwin who is a surgical oncologist at CHI Memorial Hospital. He was wonderful and he did an exceptional job.” After the tumor was removed, the doctor took out 22 lymph nodes — six tested positive for cancer. “I had multiple tiny little tumors in my mesentery, the area where my organs sit. They were so small they wouldn’t show up on a scan of any type,” Angelo said.
“The doctor took maybe 15 of them out. I still have a lot of tumors in there. The surgery was brutal. I was in the hospital for 10 days.” Her surgery was in July 2016. Afterward she went to see a specialists at Vanderbilt Hospital in Nashville. Although it took doctors from three different states — Florida, Tennessee and Rhode Island to unravel the mystery, Angelo realized every misdiagnosis was a setback from moving forward with the treatment she really needed earlier.
Nevertheless, the retired professional said she is gratefulthe correct diagnosis was finally made. “There’s only a handful of doctors nationally who work, research and treat neuroendocrine cancer. I was fortunate because we had two neuroendocrine specialists at Vanderbilt,” Angelo said. Although there is no cure for her condition, her last scan showed no progression of growth in any tumors.
Today, she is stable. Ironically, the pharmaceutical company Angelo worked for in Florida for nearly 10 years was the company that founded the drug now used to slow the growth of her tumors. She admits, “Hearing that I don’t have neuroendocrine cancer for six months was such a relief for me. When I was first diagnosed, I was angry. I was sad. I had a lot of conversations with God that it wasn’t fair. You see, I have tremendous longevity on both sides of my family. My dad died at age 80. His brothers all died in their 80s or 90s. He still has a brother who’s alive at 97. My mom is 90. She had nine siblings and they all died in their late 80s. "So it just didn’t make sense that at the age of 62 I would get cancer. There’s no family history of it. So I was scared to death — not so much of dying — but of the pain. I had a little more aggressive cancer than some others. I was scared. I thought, ‘I don’t want to leave my husband.’”
When asked what she learned about herself during her devastating ordeal, tears started streaming down her face onto her neck as she reflected on how she was able to face her most personal trial. With Bible in hand and two diaries at her side, Angelo explained she found strength and comfort by reading the Word of God and writing out her emotions throughout her life-changing experience.
“I think when people go through trials in life, they need to grasp onto something. I’m a Christian and I still don’t understand why this is happening in my life, but the Lord has given me a lot of answers. I read my Bible every day and I decided to write a journal. It’s my love letters to God. I’ve written down several passages from the Bible that strengthened me. That’s been a lot of help to me.” As she read some of those passages tears continued to flow. She added,
“I talk to God and I tell Him how I’m feeling. I ask Him to help me. He’s given me a lot of strength, a lot of comfort. I don’t think I could get through this without Him. My husband is my strength. But God is my salvation.”
Another thing Angelo is finding to be therapeutic is keeping busy with her arts and craft. Some of her paintings are currently on display at Area 61 Gallery in Chattanooga on East Main Street. She admits, “For quite a while, because of depression, I had a hard time doing any art. But recently, I’ve started some new projects. When I paint I feel at total peace. I’m also making a beautiful dress that I will wear, because Bobby and I are going to renew our vows on our 25th anniversary, which is in November.”
According to the Centers for Disease Control and Prevention, “The annual incidence rate per 100,000 persons of malignant neuroendocrine tumors involving the pancreas is about 0.2 per 100,000 persons.”
By making others aware of her journey, Angelo said it is her hope no one has to go through what she did to finally discover the truth — which in a reassuring way has set her free.
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