Sheila Ross, a longtime resident of Eastport, retired in January and is preparing to write a book about her experiences. It should be a good read. A working title is “The Politics of Lung Cancer.”
But the work she accomplished and the waves she created will continue to rock the shoals of obstinacy and ignorance for generations to come.
“Her deeds are the type of noteworthy efforts that are often overlooked because she isn’t an athlete, a musician or a movie star,” said Christopher Davis, Lung Cancer Alliance media relations manager. “However, for an entire cancer community, she qualifies as a hero.”
Now 76, Ross was a Capitol Hill staffer, working over the years for several politicians including U.S. Sen. Chuck Hagel of Nebraska, who later became secretary of defense under President Barack Obama. She was also a member of Hillary Clinton’s Health Care Task Force in the ’90s.
At age 50, Ross’ world was roiled by the discovery she had Stage II Lung Cancer.
“I got diagnosed accidentally,” she said, glancing out over the Eastport waterfront from her home. “By the time you cough up blood or have other obvious symptoms, it’s too late.”
She had switched doctors and the new doctor actually listened carefully to Ross’ chest.
“She heard something she didn’t like and sent me right away for a CT scan — and there it was.”
Ross had surgery and stopped smoking for good. She has blood tests and X-rays each year. Eight years later, while she was babysitting a grandson, Ross began hemorrhaging heavily. Rushed to the hospital, another cancerous growth was discovered behind her sternum, a place X-rays don’t reach. Her right lung was completely blocked.
Doctors gave her two months to live.
“One surgeon said he didn’t think he could operate, then asked me if he could do something new to reach her blocked bronchi.”
The surgeon reached the cancer by through the back and under her arm. Now, she noted wryly, it’s done with little slits and cameras.
When she recovered from her first lung cancer surgery, Ross said she started looking up the statistics.
“What I saw was shocking. I was stunned. Why aren’t people being told about this?”
Lung cancer is the second leading cause of deaths in the United States.
Heart disease is the leader, with 599,413 deaths in 2012.
According to the American Cancer Society, “Lung cancer is by far the leading cause of cancer death among both men and women; about one out of four cancer deaths are from lung cancer. Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined.”
Compared to other cancers, the survival rate was low then and still low now. In the mid-1970s breast cancer had a 75 percent survival rate five years after diagnosis and by the years 2002 to 2008 had been raised to 89 percent. Similarly, prostate cancer’s survival chances were 67 percent in the mid-1970s versus 99.2 percent 40 years later.
Lung cancer? It’s gone from 13 percent to a 15.9 percent survival rate.
Very few cases are diagnosed at the early state when lung cancer is most curable. And, compared to the Federal research spending figures for 2012, Breast Cancer research was on top with $1.043 billion spent on research. In contrast, Lung Cancer research was granted $231 million.
That year, 160,340 people died of lung and bronchus cancer, 51,690 of colorectal cancer, 39,510 of breast cancer, 37,390 of pancreatic cancer and 28,170 of prostate cancer. Of those who died of lung cancer, approximately 28,000 or 17.9 percent never smoked. 60 percent were former smokers and 20.9 percent were current smokers.
Before her second cancer diagnosis, Ross had already learned early detection via computerized tomography scanning dramatically increased a lung cancer’s patient’s chances of survival. A CT scan combines a series of X-ray images taken from different angles. It uses computer processing to create cross-sectional images, or slices, of the bones, blood vessels and soft tissues inside a patient’s body. The scan images provide more detailed information than data obtained from regular X-ray imaging.
She poked around and found a lung cancer advocacy group in Washington State that provided support and education. But, she said, “It couldn’t change policy from Washington State, but it could in Washington, D.C.”
Working with Jane Reese-Colbourne, a metastatic breast cancer survivor and former vice president of the National Breast Cancer Coalition, they moved the group and renamed it the Lung Cancer Alliance (LCA).
Awareness of the importance of CT scanning has spread glacially.
In 2003, in a report, the Mayo Clinic College of Medicine in Minnesota coldly advised doctors and lung cancer patients to “be patient and stay in the bleachers” for an eight year “time out” while more research was done.
In 2006, a report in The New England Journal of Medicine published results of Dr. Claudia Henschke research which concluded: “Annual spiral CT screening can detect lung cancer that is curable.”
In the test, the eight participants with clinical Stage I cancer who did not receive treatment, out of 484 screened, died within five years of their diagnosis.
Part of the slow progress in getting the word out about the need for early detection is, Ross said, an antipathy toward smokers and former smokers. Most smokers have been told their lungs will be clean and clear of lung cancer risks within 10 years of stubbing out their last smoke. Not true, she said.
“Your lungs are always at risk no matter how long ago you gave up smoking.”
She also pointed out, a significant percentage of those with lung cancer never used tobacco products.
Davis, the Lung Cancer Alliance spokesman, said Ross was at the forefront of the effort to bring attention to this disease in the public consciousness.
“Leveraging her past experiences as a staffer on Capitol Hill …she moved from office to office across both sides of the aisle to give lung cancer survivors a voice while helping to raise over $100 million in federal research funds and establish landmark legislation to make this disease a priority,” he said.
“Not only has she persevered against lung cancer, this true hero has inspired countless other survivors who are fighting their own battles against this disease.”
Laurie Fenton Ambrose, president and CEO of LCA, titled her tribute to Ross when she retired: “Our Very Own Unsinkable Molly Brown,”
“Sheila was the very first advocate ever to elevate her voice and walk the halls of Congress to bring attention to the needs of the entire lung cancer community. Sheila made early detection her battle cry and was a tenacious and resolute warrior using her sheer force of determination, dignity and unwillingness to be deterred by her critics when it came to advancing this life-saving benefit to thousands at risk.
Ross, for her part, calls others the heroes.
“Anne Arundel Medical Center is a hero,” she said. “Their doctors have been offering CT lung cancer screening for years, among them: Drs. Steve Cattaneo, Cathy Copertino, Teresa Putscher and Maria Geronimo.”
She said CT imaging is progressing so quickly that even now a single scan of the chest can see lung disease, like COPD, lung cancer nodules, coronary artery calcification, breast density, bone density.
“Diseases in these areas are the cause of half of all deaths in the United States. As accuracy in interpreting scans continues to improve, this will become standard operating procedure.”
Ross held up a sphere the size of a ping-pong ball. “This the size tumor or calcified nodule an X-ray can find,” she said. She held up a tiny dried pea. “This is what a CT Scan catches.”
Dr. Jim Mulshine, now with Rush University Medical School and Acting Dean of the Graduate College in Chicago, met Ross at the National Institutes of Health Cancer Institute while she was doing research for LCA’s predecessor. “It has always been an agile advocacy organization. She recruited Lori Fenton as its first president and CEO and was involved in many things over two decades.”
One battle was getting the tobacco companies to admit they were selling a lethal product, and that they’d known it for decades.
He said Ross was involved in a filing an amicus brief in the U.S. Justice Department lawsuit against the big tobacco companies. U.S. District Court Judge Gladys Kessler found the companies took part in a racketeering scheme to cover up the dangers of smoking.
“A high water mark for making the case against tobacco,” Mulshine said.
Along with Dr. Claudia Henschke, who has done ground-breaking research on CT screening for lung cancer, the two women were involved in a number of Capitol Hill briefings to raise issues of lung cancer research and the legislative branch of government’s slow response.
“Lung cancer screening was an uphill battle and she was courageous,” . Mulshine said. “She kept beating the drum and ultimately prevailed over the skepticism in the national news about lung cancer screening. The evidence was just overwhelming. She was persistent and made sure people had access to that care.”
To her neighbors, Ross is a terrific sailor with three grown daughters and seven grandchildren, upon whom she lovingly dotes. A Philadelphia native who graduated from the University of Pennsylvania, she married Puerto Rican native James Ross Fajardo.
For several years, as their family grew, she worked in the Virgin Islands and Puerto Rico. When her husband passed away in 1976, she and her daughters lived for a while aboard a boat before moving to Maryland. She worked on Capitol Hill as chief of staff for delegates from the Virgin Islands.
She needed a slip for her sailboat and quickly discovered “a mortgage was cheaper than a slip rental.” So, in the mid-1990s, she bought a condo on the water, and rented it out until 2000 before moving in. Her oldest daughter, Heather Ross, is in risk management.
Middle daughter, Audrey Ross, met her husband Ledyard King when both worked at The Capital. She is now a teacher in Montgomery County, King is a reporter for USA Today. The youngest, Emily Ross, is with the LCA.
Dr. Mulshine calls Ross a “wonderfully devoted mother. When I lived in Bethesda our families went to a local swimming pool together. She is wonderful grandmother, too, and is incredibly forthright, a standup person, and a great sailor who goes out on the water often with her family. She actually has a 40-year old sailboat with a wooden mast.”
Preferring to work behind the scenes, Ross is quick to credit others.
“There is no empathy for lung cancer patients, whether or not they smoked. I survived. I was lucky. That’s why I threw myself into this.”