NET cancer patient faces nervous future

It took a while to get the right diagnosis. Now she worries if the cancer will come back.

About 1332 words

By Becky Martins

Editor’s note: The patient’s last names in this story have been removed to protect their privacy. Both women are from the Pittsburgh, PA area.

Michelle’s NET lung cancer diagnosis was an accident—an accident that taught the value of self-advocacy.

The stomach pain began in 2011, one week after Michelle’s sister’s death. When dull aches escalated to jabs of agony, Michelle headed to her family doctor. Cardiovascular disease had stolen her sibling, without warning or reason. Michelle wasn’t taking any chances.

Kidney stones were the first diagnosis, until the urologist ruled it out.

The next culprit was a twisted fallopian tube. But the clinic advised Michelle to take a precautionary chest x-ray, before she was operated on. The test was a pre-operative requirement because Michelle’s lung had collapsed spontaneously in 2004.

When the results came back, the radiologists ordered a second x-ray, deeming the first abnormal.

Countless tests followed—with similar results—until Michelle’s family doctor ordered a PET scan. When hyperbolic activity was detected, Michelle was advised to see a pulmonologist. The expert could best interpret her test results, she was told.

Michelle recounts her visit to the specialist’s office.

“He walked in, introduced himself, and abruptly stated, ‘I looked at your PET scan and I’m 99 percent sure you have lung cancer,’” she said.

Michelle was floored.

The next few weeks were a blur. After more testing, including a bronchoscopy that suggested NET cancer of the lung, Michelle was not confident she had the latest information. She didn’t feel her specialists knew what they were up against.

‘My pulmonologist was uninformed,” Michelle said. “He didn’t really understand what we were dealing with. He thought I might need to start chemo, but wasn’t sure. I didn’t feel that was right. I instead consulted with a thoracic surgeon and he recommended surgery–to remove and test the abnormal cells–before anything else was done.”

Michelle quickly scheduled the appointment. Her surgery was on a Friday and three of the five sections of her lung’s upper lobe were removed. She was released a few days later.

“At that point, I was afraid to ask questions,” Michelle said.  “I didn’t want the answers. I just kept thinking about my kids.”

At 17 and 22, Michelle’s daughters were also scared. They had no idea what was happening to their mother.

The report confirmed NET cancer, and the tumor was bigger than expected. Michelle’s specialists had predicted one centimeter, but in reality, it was two centimeters. Her actual diagnosis was a low-grade neuroendocrine tumor (NET) of the lung.

As Michelle would learn, her diagnosis represented less than two percent of all known cancer types. According to the American Cancer Society, only 4,000 new cases of this form of lung cancer are reported in the US each year.

Typically, lung NET cancers are unresponsive to chemotherapy and are often misdiagnosed and misunderstood.

Michelle had been a smoker, but research has not linked lung NET cancer to tobacco. The survival rate is greater than other forms of lung cancer, but lung NET cancers may develop into serious conditions like Cushing’s syndrome and carcinoid syndrome.

Carcinoid syndrome can suddenly cause blood pressure and respiration to collapse to fatal levels. NET cancer is sometimes referred to as carcinoid cancer.

Cushing’s syndrome is the result of excessively high levels of cortisol and can result in a range of symptoms, including heart disease and diabetes.

NET cancer tumors can produce excessive levels of any hormone or peptide the body produces–including cortisol.

Michelle’s post-surgery prognosis was better than expected.

“I had a follow-up appointment soon after my surgery, where the surgeon reviewed my latest x-rays,” Michelle said. “After reviewing the results, he claimed I was cured and had nothing else to worry about.”

Cushing’s and carcinoid syndrome were also ruled out.

But Michelle didn’t feel at ease. As she researched her condition, true fear set in. Michelle never found a scenario that matched her own. Instead, she read about individuals who dealt with NET cancer all their lives. After being told they were cured, the cancer would return a few years later.

“The moment I learned I was cancer-free, I cried,” Michelle said. “It was a huge relief. But as I learned more, the feeling was anticlimactic. Just because I am cancer-free today, doesn’t mean I am in the clear.”

For solace, Michelle turned to others affected by NET cancer. That was how she met Sunny.

Sunny was a high-spirited woman who had been diagnosed with ovarian cancer approximately 15 years before. She was also told she had been cured. For a few years, she had frequent scans to monitor for recurrences.  She then went without them, as doctors deemed them an unnecessary expense.

Almost ten years after her initial diagnosis, and three children later, Sunny learned NET cancer had spread to her lung, which was promptly removed. Three years later, she learned it had spread throughout her body, settling in her bones. This led to two trips to Switzerland to receive treatment not yet available in the US. Sunny also received ongoing rounds of expensive drugs, both FDA approved and experimental, that were not often covered by her insurance.

Sunny died in November of 2012.

Although her own case is less extreme, Michelle learned a valuable lesson from her new friend.

“One of the things she drilled into me was not letting doctors drive the show,” Michelle said. “Listen to what they have to say and learn from them, but do your own research. Talk to people with experience. Be your own advocate.”

When they first met at a fundraiser in 2011, Sunny asked Michelle if she was having her scans regularly and Michelle mentioned her next one was in six months. Sunny quickly advised her to get them consistently and recommended Michelle consult with her oncologist. Michelle took this advice to heart.

After her August 2011 diagnosis, Michelle had a PET scan in January 2012 and again in July, along with CT scans. All the tests showed no indication of recurrence or metastasis.

“When I met with the oncologist in August, he didn’t want me exposed to high doses of radiation, unnecessarily,” Michelle said. “So he felt I shouldn’t have another CT scan for at least a year. That made me nervous. I convinced him to do a chest x-ray in 6 months and he eventually agreed.”

The x-ray has been scheduled for February 2013. In the meantime, Michelle continues to rebuild her life, in a post-cancer world.

“As far as current research is concerned, I shouldn’t have future problems,” Michelle said. “Physically, I feel no effects, whatsoever. After my surgery, I was back at work in six weeks. Five weeks after surgery, I did the Pittsburgh Heart Walk with the American Heart Association.”

Emotions have been harder to wrangle.

“The toll is still heavy,” Michelle said. “It wasn’t until three to four weeks after surgery that it hit me. ‘Wow, I survived cancer.’ I’d been through a lot in the last year with my sister’s passing. When cancer hit, it was like the bottom fell out from my life.”

With the help of her two daughters, a therapist, and fellow NET cancer patients, Michelle has worked hard to put back the pieces. Despite her whirlwind journey, Michelle is determined to remain positive and stay in control of her health.

“There is not a lot known about my condition, and it’ll forever hang over my head,” Michelle said. “But I can’t let it control me. This experience has taught me that second opinions are covered by insurance for a reason; you can’t take for granted what one doctor says. Make sure you’re comfortable with the information you receive, and make sure you understand it. If you don’t, keep asking questions until you do.”

This story provided by Walking with Jane. Inc., a 501 (c) (3) non-profit dedicated to eradicating NET cancer. For more information about NET cancer or Carcinoid Syndrome contact or visit our website at