BATON ROUGE, La. (BRPROUD)– Many may know him as Captain Phillip Paternostro.

“A good giving person. I just hate to lose him,” Lula Paternostro, Captain Paternostro’s Mother said.

He was a loving, spiritual, selfless, family-oriented human being. But one day his health took a turn for the worse.

“He started having back pain and numbness in his arm. We went to his back doctor and they thought he was just some degenerative disc in his neck. And he was like, I’m in a lot of pain. You know, this is not the same pain that I’m normally in with that,” Lisa Paternostro, Captain Paternostro’s Wife said.

Paternostro’s wife said he had a rare disease that many oncologists are still unfamiliar with. But by the time doctors realized how severe Paternostro’s condition was, it already turned into stage four cancer ‘small cell high-grade neuroendocrine carcinoma cancer.’

“He read that he had lymphoma, which was devastating. It turned out not to be lymphoma, but that’s that’s how we found out he had cancer. Advocate for yourself because with this type of rare cancer that he has, it’s very rare. Not many people know anything about it or has ever heard of it. And it can kill in a couple of weeks to a couple of months, Paternostro’s wife said. A lot of people would have stopped there. We didn’t.”

According to Mayo Clinic, Neuroendocrine tumors do not always show signs and symptoms at first. She said doctors told her Paternostro only had a month to three months to live.

After seeing doctor after doctor, scheduling appointment after appointment, then trying every medicine in the book. One thing the Paternostro family never turned down is a second opinion.

“Most oncologists wherever they are, even if they are from major cancer institutions, they don’t see enough of this. And I know Lisa had a lot of trouble getting care. I’m there for hundreds and hundreds of people who don’t know what to do and cannot get to their doctor,” Susan Sylvan, Clinical Program Manager Neuroendocrine Specialist said.

“I feel like they can do more. They can go to the moon, but they can’t cure cancer. I really believe that. They could put more into the cancer disease,” Paternostro’s mother said.

According to Statistics, about 171,000 people are living with this diagnosis. Although, there is still no cure. Treatment options are available. And the family will continue to spread awareness about this rare disease. They also hope oncologists will do more research in the future.

It’s still unknown what causes this cancer, but Paternostro’s colleagues said it could have been from working as a firefighter. This information has not been confirmed by a doctor.

Neuroendocrine tumor signs and symptoms might include:

  • Pain from a growing tumor
  • A growing lump you can feel under the skin
  • Feeling unusually tired
  • Losing weight without trying

Neuroendocrine tumors that produce excess hormones (functional tumors) might cause:

  • Skin flushing
  • Diarrhea
  • Frequent urination
  • Increased thirst
  • Dizziness
  • Shakiness
  • Skin rash