The news came as an incredible shock to Richards, an energetic Tucson businessman who at the time owned multiple Wendy’s restaurant franchises. Especially since he only weighed 160 pounds. How could such an enormous tumor, which may have been growing for up to two years, go undetected for so long?

Such is the nature of adrenocortical carcinoma (ACC), a rare cancer of the adrenal glands that usually displays no symptoms or pain, and simply displaces organs as it grows inside the body cavity, often going undetected until its late stages.

ACC occurs in as few as 1-in-1.7 million Americans annually. The disease develops in the adrenal cortex, the outside layer of the adrenal gland. There are two adrenal glands, one above each kidney in the back of the upper abdomen. The adrenal glands are part of the endocrine system, which produces hormones that regulate bodily functions.

Surgeons removed Richards’ tumor, along with one of his kidneys. But four and one half years later, the cancer returned, this time as a spot on his left lung. Doctors monitored that tumor for a while, and when they saw it growing, surgeons also removed that tumor, and part of his lung, too.

“Multiple diagnoses and multiple surgeries persuaded me to start looking into research,’’ said Richards, whose Tucson oncologist, Dr. Richard Rosenburg, contacted a colleague at the Arizona Cancer Center, Dr. Daniel Von Hoff, TGen’s Physician-In-Chief.

A few days later, Richards received a call from Dr. Von Hoff, and they talked for 90 minutes about setting up an ACC research program at TGen. Two weeks later, in May 2005, Richards arrived at TGen for a meeting with Von Hoff and Dr. Michael Demeure, a surgeon who had published a scientific paper about ACC. That day, Richards and Drs. Von Hoff and Demeure began putting together a plan for what would become TGen’s ACC Research Program.

During the planning process, Richards developed a tumor in his liver. Surgeons removed the tumor and part of his liver. But this time the tumor underwent genomic profiling, which revealed a genetic marker that his physicians believed showed Richards’ ACC could be treated with Velcade, a drug usually used to treat multiple myeloma.

“This is where the power of profiling and teamwork comes in,’’ said Richards, who received the targeted chemotherapy for four months. And except for a spot of cancer on his right lung, removed in May 2008, Richards remains cancer free, and he attributes his remarkable health to the scientific research at TGen.

“It was not looking real good. I can only say there is a good chance that molecular profiling saved my life. You could say I am living proof that it works,” said Richards.

Soon after, Richards developed a website adrenalcancersupport.org and co-founded what is now the largest ACC support group on the Web. He often receives calls from patients throughout the world, whom he encourages to participate in clinical trials.

Today, Richards, now an active member of the TGen Foundation Board, brims with hope and enthusiasm about what is happening through TGen’s ACC program under the clinical leadership of Drs. Von Hoff and Demure and Dr. Kimberly Bussey, a TGen Associate Investigator and lead scientist for TGen’s ACC Research Program.

The ACC program conducts research and clinical studies courtesy o]f Richards and others through Richards’ Advancing Treatments for Adrenocortical Carcinoma (ATAC) Fund.

In early October, their efforts culminated in a clinical trial at TGen Clinical Research Services at Scottsdale Healthcare (TCRS), which focuses on patients with inoperable tumors who have relapsed or failed to respond to conventional therapies. OSI-906 is the first ACC drug to reach Phase 3 trial, and could potentially become the first drug in nearly half a century approved by the FDA to treat ACC. TCRS was the first of 41 clinical trial sites planned worldwide.

“Troy brings a sense of urgency and a connection to the ACC patient community that made this trial possible. This is a huge accomplishment for the ACC Research Program at TGen and a great testament to what patient-advocated research can accomplish in a short period of time,” said Dr. Bussey.

Meanwhile, Dr. Bussey remains active with a pilot project focused on a gene called SIRT-1, which is under expressed in ACC. Bussey and her colleagues are looking into ways to make SIRT-1 more active and, combined with other compounds, find a more effective and less toxic way to address ACC.

Plans are also underway to sequence the full genome of 12 cancerous and 12 benign ACC tumors – essentially spelling out their DNA codes. This should provide researchers with information about mutations and otherwise act as a springboard for additional research and therapeutic development. Richards said this program will produce a wealth of new data that should draw young researchers around the world into this field of study.

Though ACC is rare, discoveries into its causes may apply to other types of cancer, too, said Richards, who is constantly amazed at the innovative research and powerful technology employed by TGen.

“If there is a cure for cancer, I have no doubt a number of the answers will come from the efforts of TGen scientists and clinicians,’’ Richards said. “And while we want a cure, right now, more than anything, we want to be able to provide treatments that are much better than what is out there now. I think that’s the first step.’’

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