Neuroendocrine GI Cancer - Stage IV: Valerie Leighty

After being treated for several months for a pinched nerve in my neck, I was admitted in October 2013, to the local hospital through the ER with a collapsed lung. I was then diagnosed with stage 4 neuroendocrine gastrointestinal cancer, which had metastasized to my lung and bones.

While I was delighted with the local oncologist assigned to my case, I was determined to secure a second opinion from a nearby cancer center, arguably the pre-eminent cancer center on the planet. Both oncologists concurred on the “standard” protocol, which was administered to me from November 2013 to February 2014.

I must admit that, considering the widely held prognosis by the hospital staff that I’d never leave the hospital, my oncologist’s decision to immediately begin that initial chemo regimen while I was still hospitalized surely saved my life – at that moment.

An early PET scan indicated that the cancer was stable, but by July of 2014, another PET scan showed the cancer aggressively advancing.

My husband had learned of Rational Therapeutics (now Nagourney Cancer Institute) through his work, not through the medical community. After doing some research, we brought pages from the website to follow-up appointments with both the cancer center oncologist and my local oncologist to ask their opinions.

The cancer center oncologist did not even bother to look at the printout but instantly dismissed them as a purveyor of snake oil, preying on the desperation of cancer patients in order to drain them financially. He stated categorically at that time that he had no further treatments or clinical trials to offer me, that I should go home and enjoy feeling OK and contact him once I felt sick.

Thankfully, my local oncologist was more aggressive and open-minded.

He recognized what he called “good science” when he saw it. He was eager to try another protocol and agreed we should contact Rational Therapeutics to arrange for the assay first.

We had difficulty arranging for the biopsy at our local hospital and, after two weeks with no progress, we contacted Rational Therapeutics to express our frustration. Within 48 hours I had precertification for the procedure from our insurance carrier, plus the OR was booked along with a hospital bed.

I had the liver resection and Rational Therapeutics secured the tumor sample. (The surgeon, Dr. Sean Cao, was so exceptional in his technique that I managed to take the cross-country flight home without incident, only 30 hours after the procedure!)

Within a week, my local oncologist had the report from Rational Therapeutics, which identified two chemo agents, that we had not yet tried, as the most promising – and more effective than the two agents of the standard protocol that I had completed in February 2014.

After the sixth cycle of this protocol, in late December 2014, I had a follow-up PET scan. I was given the best Christmas present – I was found to be clear of cancer!

How We Test Your Cancer Infographic

Currently, hundreds of drugs, drug combinations and targeted agents are used to treat cancer patients. With so many choices, how does your oncologist decide which ones are right for you?