It was years of battling mysterious and significant symptoms before local resident Robin Napier finally received a diagnosis.
Last year, she was finally given a reason for her pain: a rare cancer in the form of a neuroendocrine tumor, or NET.
Her diagnosis, which came on June 20, informed her that she has an NET tumor on her pancreas, which had attached to her spine over time, making it inoperable.
Because Robin’s tumor is also attached to her pancreas, it primarily affects her digestive system. Over time, her digestive organs have become unable to do their job, she said.
In addition to that, she also dealt with severe pain in her back and legs for years, because of its attachment to her spine, as well as being unable to eat and suffering from nausea for long periods of time.
Robin learned that only one percent of all cancer patients are known to have such a tumor, which are more commonly referred to as NETs. To put that percentage into perspective, Robin said NETs affect only 28 people in Indiana.
“It’s a cancer that is not known,” she said.
“Because of it being extremely rare, it goes unnoticed, undetected, misdiagnosed.”
Robin herself was misdiagnosed for years. In fact, her doctor told her that he believed she had it for five to eight years before her true diagnosis came along.
“I was diagnosed with everything — IBS, menopause, anxiety, depression, ulcers, you name it,” she said.
“Medications after medications that didn’t help. I had been in and out of emergency rooms for tests, ultrasounds, CT scans … just everything imaginable, they did to me, and they missed it.”
Robin said that when she first found out she had it, she immediately began to try to learn more.
“You know, the first thing you do is search for information,” she said.
“You’re like, ‘I’ve got to find somebody who is like me, because I want to know what’s going to happen to me,’ and you’re looking, and you can’t find anything, you just can’t find it.”
Robin, 52, is a 17-year resident of Brown County, and had only one way to describe how that felt.
“Horrifying,” she said.
“It’s horrifying and it’s lonely. Extremely lonely.”
Robin reached out to the Democrat a few weeks ago to share her story in hopes of spreading awareness about NETs, because, in her words, “this can’t happen to other people. It just can’t.”
“I’ll get the NETs awareness out there if I have to die trying,” she said.
Much is still unknown about NET tumors, and they affect almost everyone in very different ways. This is because where NETs show up depends entirely on the individual who has one.
According to the Mayo Clinic website, NETs are cancers that begin in specialized cells called neuroendocrine cells. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells.
NETs can occur anywhere in the body, but most occur in the lungs, appendix, small intestine, rectum and pancreas.
There are many types of neuroendocrine tumors. Some grow slowly and some grow very quickly. Some neuroendocrine tumors produce excess hormones, called “functional,” and others don’t release hormones or don’t release enough to cause symptoms, called “nonfunctional.”
“Diagnosis and treatment of neuroendocrine tumors depend on the type of tumor, its location, whether it produces excess hormones, how aggressive it is and whether it has spread to other parts of the body,” the website reads.
Robin’s daughter, Shelby, said that NETs don’t have a common ribbon colors like other cancers — they have zebra stripes.
“It goes so misdiagnosed that they use the phrase that’s taught to doctors in medical school, that says, ‘When you hear hoof beats, think ‘horses,’ not ‘zebras’,’” she explained.
“It basically means, when you get a set of symptoms, think of the most common, not of the rare.”
So, that’s what Robin’s doctors did. Over the several years when she was dealing with symptoms, she had to repeatedly go to hospitals, where she was told she had a range of ailments, none of which being right.
She said she even had some doctors laugh at her, or diagnose her as an alcoholic, since it primarily affects her liver and pancreas, and then not believe her when she told them she did not drink.
“You know, you trust doctors,” she said.
“But if you feel like you’re not getting the right diagnosis, don’t quit. Do not quit. Trust your instincts, trust your gut.”
Speaking life
The events that led up to Robin’s final diagnosis began on June 16. Before that day, Robin’s health had been rapidly declining.
“The doctor said I should have died twice,” Robin said.
“I was just a shell of nothing. I actually, I laid in bed and I thought I was dying.”
According to Shelby, the rest of the family thought so, too.
“I had to go to the ER again because I was so swollen, it looked like I was nine months pregnant,” Robin said.
Robin said that doctors actually wrote “looks nine months pregnant” in her notes that day.
She went to Johnson County Hospital because it was closest, and it just so happened that there was a doctor there that works at IU Health that day, because they didn’t have enough doctors, she said.
She was eventually transferred to St. Vincent Hospital for better care, with many not knowing what kind of mass afflicted her.
When she was finally transferred that night, she had to have 12 liters of fluid drained from her stomach.
“And then I was in the hospital for a week,” she said.
On June 18 she was told she had cancer. Two days later a biopsy showed it was NETs.
According to Robin, it just so happened that the doctor who had decided to treat her before the official diagnosis deals with NETs.
“He has some other patients from Indiana who also have NETs, so he knew exactly what to do,” she said.
“Because some treatments that work for others might not work for you, so they have to find the exact right treatment they can.”
She said that her team at St. Vincent has been wonderful, and their care has filled her with hope.
“The team of people have been so good and they’ve spoken nothing but life into me,” she said.
“They don’t ever talk about death, which, to me, is amazing. You think too much about that as it is.”
For a while, Robin had to travel to St. Vincent to drain fluid in her stomach, 12 liters at a time. This was dangerous, because it removed electrolytes and nutrients from her system.
Because of this, Robin had to have another emergency surgery where surgeons rerouted her digestive system. She now has a drain in her stomach, which she has to empty a liter of fluid from every single night.
She said her husband, Robert, does it for her.
“I’ve always been a strong woman, doing things myself and taking care of myself. He’s always been my best friend and my everything — but seeing him as a caregiver too was hard at first. It was extremely hard. Because I could see the pain in his eyes,” she said.
“And he’s the most gentle person. Sometimes I just look at him while he’s doing the things that he’s doing and I just — I don’t know what to say — the love.”
Right after the diagnosis, Robin said Robert put on a puppet show for her, using one of her hospital socks, to make her laugh.
“He’s special, he’s a special guy. He knows me, knows I would rather laugh than cry,” she said.
“You either laugh or you cry, and I choose to laugh.”
Robin Napier poses for a photo on her Brown County property. The 17-year Brown County resident was diagnosed last summer with a rare type of cancer.
Corbin Parmer | The Democrat
Fighting together
Following the diagnosis, Robin has had to undergo many difficult treatments, including injections and radiation. Next month, she has to have a high-dose, intravenous radiation treatment that will force her to self-quarantine for three days after.
“It’s not easy. My life was taken from me with this diagnosis,” Robin said.
“It’s treatments all your entire life, until the cancer takes you.”
Each day is different for Robin — she said some days she can’t get out of bed, or some where she will scream at the sky, but on other days she can walk around her yard and enjoy nature, or go into town to go grocery shopping with her husband.
She said that facing death and dealing with the cancer has helped her appreciate everything much more.
“Just going grocery shopping is awesome for me,” she said.
“Everything just seems much more vibrant, seems more alive. It’s like being a baby and experiencing it for the first time.”
“It has made us all more aware of when we are in public and we start getting impatient. Maybe the person moving slow is sick and weak,” Shelby said.
“Maybe that person just lost their dad, and they’re deep in thought. Maybe that’s why they backed out in front of you and didn’t pay attention. You just don’t know what somebody is going through,” Robin said.
“Just be gentle, people.”
Robin said her biggest fear used to be cancer. Now that she has been diagnosed, she said there’s nothing left to be afraid of.
“I refuse to look at it as a death sentence. I’ve been married for 35 years, we have two daughters, we have two grandchildren, I’m not ready to leave yet,” she said.
“I kind of look at it like, if this was my last day, would I want to go out crying and mad and upset? It’s just perspective — it’s just how you see things. If it’s my last day, I don’t want to go out like that.”
So, Robin smiles and faces each day one at a time. She said she often thinks of what her doctor told her:
“He said, ‘Every year, cancer is easier to stabilize and easier to fight. So, each year, every month, every week, we’ll fight together, we’ll do this.’”
“He said, ‘You might have to do it the rest of your entire life, but this is something that we will do.’”
Follow along
Follow Robin’s journey on Instagram at @rockinrobin1970something
Support Robin’s GoFundMe at gofundme.com/f/xuucv-medical-bills-for-cancer.
