From Canyon To Cove: Fellow survivor offers his support to others

Laguna Beach accountant Jeffrey Ross was a fit 54 when a sudden pain in his abdomen caused him to pass out and sent him down a course of medical investigation that led to a diagnosis of pancreatic cancer, a 12-hour surgery, and a grim prognosis that he would have six to nine months to live. That was eight years ago.

Fighting the cancer would lead Ross into a new life of advocacy with a new wife by his side — Sally Sanders, a critical care nurse who proposed to him on the beach after his diagnosis.

I met Ross when he wrote me after my two columns were published about my own battle with pancreatic cancer. I admit it was an emotional moment when I read his first email, offering support and guidance through this difficult journey.

I was just coming to terms with this life-changing disease — finally feeling better after a lengthy surgery, two hospitalizations and enjoying the intermittent feeling of being well enough to do “normal” things like go to work, plant a garden and cook a meal. But I still suffered from deep bouts of despair that would suddenly hit when I least expected it, usually while enjoying those very activities that I used to take for granted.

Ross’s email came out of the blue: He was the “eight-year survivor” and cancer advocate that my surgeon, Dr. Sean Cao, had told me about when describing how difficult this disease is and the toll it takes. We both had our surgeries at Orange Coast Memorial in Fountain Valley under the hand of Dr. Cao; we even had the same doctors at UC Irvine Medical Center. We both thought Dr. Cao a brilliant surgeon and felt lucky to have been operated on by him.

There are other similarities: We were both in our 50s when the cancer struck, making us among the younger victims; in relatively good health; both lucky to be in strong, sustaining relationships. It was nice to be able to share a joke about a certain doctor’s penchant for raw bluntness. It was nice to know someone who has the same “Mercedes-Benz” incision scars and who has been through chemo and radiation (which I was just beginning).

But there were differences. I got a kick out of the meticulousness with which Ross documented his illness. Like the CPA he is, he had prepared spreadsheets of his cancer marker tests, not to mention detailed files containing every blood test, lab report, endoscopy or surgical report, all neatly categorized in a three-hole punch notebook. I had stuffed all my papers and hospital materials willy-nilly into a now-bulging folder that was held down with a heavy paperweight lest the papers cascade onto the floor.

But one similarity we couldn’t escape: We are both facing a fight for our lives.

“Pancreatic cancer is the deadliest form of cancer,” Ross told me bluntly. “Less than 6% of patients make it to five years.” According to statistics compiled by the Pancreatic Cancer Action Network, or PanCAN, breast cancer now has a 90% five-year survival rate; prostate cancer patients enjoy a 100% five-year survival rate; and colon cancer has a 65% five-year survival rate. Lung cancer patients have a grimmer five-year survival rate of only 16%, nearly three times the survival rate for pancreatic cancer.

Ross didn’t mince words, and while he offered encouraging personal support he took advantage of the opportunity to get his message across to a reporter.

“There is a need for more research,” Ross said. “Pancreatic cancer only gets 2% of the National Cancer Institute’s budget, but it has the highest mortality rate.”

According to PanCAN, only 20% of patients diagnosed with pancreatic cancer are operable; of those, many have metastasized cancers that have spread to other organs. Part of the reason for the low survival rate is that, unlike other cancers, there is no early diagnostic test to alert physicians of a tumor, and symptoms can be vague and resemble other ailments. (My primary care doctor thought I had bed bugs when I came in for a persistent itch and rash, which turned out to be severe jaundice related to a pancreatic tumor.)

Many patients are diagnosed well into their illness, long past the time when surgery would be an option. And most patients are in their 70s and 80s when diagnosed, and may suffer from other age-related ailments, such as diabetes, making them fragile and difficult to treat.

According to a report prepared by PanCAN, with which Ross works, breast cancer tops the funding chart, with $600 million in National Cancer Institute funding in 2009. Lung, colon and prostate cancer spending is a fraction of that: about $250 million in 2009. The funding given to pancreatic cancer research is paltry by comparison — about $90,000 in 2009.

Unlike the spectacular advances in other cancer treatments, the treatment for pancreatic cancer hasn’t changed much since the 1930s, when a certain Dr. Whipple developed a technique, known by his name, to remove pancreatic tumors and restore the complicated structure of the body’s digestive system to at least buy some time for patients, if not cure the condition. This antiquated procedure has been refined over the years, but is basically the same. It was the same surgery performed on Ross and myself. Chemotherapies and radiation are also used to shrink tumors and drive cancer cells from the body, but unlike other cancers, pancreatic cancer “has a way of coming back,” as my oncologist explained.

This happened to Ross. After seven years cancer-free, a new tumor was found on his pancreas in December, and Dr. Cao took it out in January. Fortunately, the tumor had not metastasized, and Ross is now undergoing a new round of chemotherapy to kill any remaining cancer cells. He is no longer eligible for radiation, he says, having received the lifetime maximum of 5,000 rads in previous treatments. The chemo seems to be working, as testified by his shrinking cancer markers.

The key to survival in most cancers is early detection, the bane of pancreatic cancer. More than 43,000 new cases were diagnosed in 2010, and of these, there were 36,800 deaths, according to PanCAN.

Ross is one of PanCAN’s counselors, talking to some 200 people a year from all over the country. Some of the callers are reluctant to go forward with the Whipple surgery; some have no hope, and he provides end-of-life counseling.

“This cancer can kill in weeks,” he said.

According to PanCAN: “Pancreatic cancer recently surpassed prostate cancer as the fourth-leading cause of cancer-related death in the United States, preceded only by lung, colon and breast cancer. The five-year survival rate for pancreatic cancer is a meager 6%, a dismal statistic that has not changed significantly in the past 40 years. Progress in the understanding, diagnosis and treatment of pancreatic cancer is urgently needed.”

The organization is working diligently to equalize the funding, and has gotten congressional support in the House of Representatives (H.R. 733) and Senate (Senate Bill 362) for legislation that would require the National Cancer Institute to form a Pancreatic Cancer Initiative. Its February report, “Pancreatic Cancer: A Trickle of Federal Funding for a River of Need,” is subtitled: “Why Survival Rates for Pancreatic Cancer Have Remained in the Single Digits for 40 Years.”

Ross is optimistic about the prognosis for more funding, given the recent high-profile cases of Patrick Swayze and Steve Jobs, both of whom were pancreatic cancer victims. Swayze died in 2009 after a nearly two-year battle, while Jobs recently underwent a liver transplant. Another celebrity victim was the actor Michael Landon, whose death in 1991, three months after diagnosis, was shocking.

“Between the high-profile victims of the past several years, and the push of our advocacy work in Washington by PanCAN and our volunteers, we can only continue on with our fight,” Ross said. “While incidence rates are leveling and survival rates are continuing to climb for all other major cancers, ours continues to spread with little visible progress.

“However, that has only continued to push PanCAN into a high-gear mode to continue the fight in Washington. And notwithstanding all of the political wrangling over budget cuts, we continue to strive for a bigger piece of the NCI budget and direct funding through Congress. It’s been a long battle and will continue on.”

So where is the bill, proposed by members of both houses, both parties, and supported by hundreds of legislators? It’s still in committee. PanCAN held an action day in June seeking to move the legislation forward.

For more information, visit PanCAN.org.

City Editor CINDY FRAZIER can be contacted at (949) 380-4321 or [email protected].