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Does lung cancer get short shrift?
Sunday, June 21, 2009
(First of two articles)

As a teenager, Suzanne Hill Alfano had worked in the office of her father, cancer specialist Jack Hill.

So when she developed a nagging cough in April 2000 at age 38, and then found a lump over her clavicle, she and her dad both knew it was bad news.

In the terrible calculus that families facing cancer often use, they hoped it would be lymphoma. Instead, it was lung cancer. Scarcely a year later, Ms. Alfano was dead, leaving behind daughters ages 8 and 3, and parents who eventually decided that they would devote themselves to fighting this pernicious disease.

Lung cancer kills almost 162,000 Americans each year, more than any other type of malignancy, and yet it gets less research funding per death than any other major cancer. Breast cancer, which gets far more attention, kills about 30,000 fewer women per year than lung cancer does.

And the fastest growing group of lung cancer patients are women like Ms. Alfano, who never smoked.

Despite the growing number of nonsmokers who get the disease, though, lung cancer researchers and activists have no doubt that the public's attitudes about smoking play a major role in the neglect of this major killer.

Lung cancer "seems to be the focus of everyone's blame-the-victim mentality," says Dr. Jill Siegfried, a lung cancer scientist at the University of Pittsburgh Cancer Institute. "You can take another disease like heart disease that is equally caused by smoking, and nobody would say, 'Don't develop stents or bypasses.'

"For some reason, lung cancer seems to shoulder all the burden for our smoking-related guilt."

Dr. Joel Greenberger, another lung cancer researcher at the institute, believes the bias even extends to the National Institutes of Health, the primary federal funding agency for medical research.

"I think there's a kind of hidden agenda at the National Institutes of Health that because a majority of lung cancer is caused by smoking, that people kind of do this to themselves," he said. "There's a kind of punishment mentality -- and this could not be more wrong."

In 2007, the NIH's National Cancer Institute invested less than 5 percent of its $4.8 billion budget in lung cancer research, even though the disease accounts for nearly a third of all cancer deaths in men and women, according to Lung Cancer Alliance, the major advocacy group for the disease.

Lung cancer got $1,414 in research funding per death, the alliance said, compared with $23,754 per death for breast cancer and $11,959 per death for prostate cancer.

Breast cancer, which draws millions of people to annual events and turns the world pink during awareness months, now has a five-year survival rate of 89 percent. Prostate cancer, the leading cause of cancer in men, has a five-year survival rate of 99 percent.

The lung cancer survival rate, on the other hand, has stayed depressingly flat for nearly four decades, and now sits at about 16 percent.

"Here you have a public health epidemic 40 years after President Nixon first declared war on cancer," said Laurie Fenton Ambrose, the president of the alliance, "and the question is, why has there not been the same kind of outpouring of compassion and care as with breast cancer or with AIDS?

"You had a tsunami that hit Southeast Asia a few years ago. The devastating toll of that natural disaster is what hits our shores every year in lung cancer," she said. "Today, almost twice as many women die of lung cancer as breast cancer. Why is that not front-page news?"

Lung cancer's outlook is grim partly because it is hard to find and can grow rapidly, Dr. Greenberger said.

"It's a horrible, insidious cancer," he said. "These cancers come up very quickly and grow really quickly."

But the other major reason lung cancer has such low survival rates is that there is no good early detection test for it.

Eight out of 10 cases are in an advanced stage by the time they are caught, Dr. Siegfried said. When doctors are able to find lung cancer in its earliest stage, the five-year survival rate is 70 percent.

Dr. Hill, a retired physician living in Churchill who once did health reports for KDKA-TV, has made the search for an early detection test a major focus of his advocacy.

"If you look at breast cancer, if a woman gets a regular mammogram, she's probably going to have her cancer diagnosed at a curable stage," he said. "If you get a colonoscopy on a regular basis, you're probably going to catch colon cancer and get cured. So a lot of the work that needs to be done in lung cancer is to try to develop a blood test similar to the one we now have for prostate cancer."

Pitt's Cancer Institute is conducting a clinical trial known as the Pittsburgh Lung Cancer Screening Study that is following a group of smokers to see who goes on to develop lung cancer and who doesn't.

The institute is hoping to develop a screening test that will show which of the small nodules that are picked up in a CT scan are actually cancerous. That not only could provide patients with early treatment, but would save people with non-malignant nodules from unnecessary treatment, Dr. Siegfried said.

In California, the private Canary Foundation, created by Silicon Valley entrepreneur Don Listwin, is also seeking early detection tests for a number of cancers, including lung cancer. The foundation, whose name evokes the canaries once used to detect poisonous gases in coal mines, says its mission is to "deliver early detection tests for solid tumor cancers by 2015."

Detecting lung cancer earlier is not the only challenge, though. Doctors also need to have much better treatments than they do now, Dr. Greenberger said.

Surgery can be used for some early tumors. After that, the standard treatment is to assault the cancer with both radiation and chemotherapy.

But because of the difficulty in picking up tumors early on, radiation is often started after lung cancers have already started to spread, he said. The problem with chemotherapy, which is intended to target those circulating cancer cells, is that "we can't get enough chemotherapy into patients because it's so toxic."

On top of that, the combination of radiation and chemo often inflicts painful damage to the esophagus, which can cause patients to grow weaker as they avoid solid food for days and even weeks.

Dr. Greenberger's research is aimed at protecting the esophagus. He has found that doctors can counteract the toxicity of the treatment if patients swallow a substance that produces the enzyme manganese superoxide dismutase.

Even if people have a hard time relinquishing their disdain for smokers, there are two other good reasons not to be dismissive toward lung cancer patients, the activists said.

For one thing, Dr. Hill and his wife, Peggy, say, people who have never smoked now make up about 15 percent of lung cancer patients, and women outnumber men two to one in that group.

The unfairness of that is one of Peggy Hill's prime motivations for speaking out.

"Jack is involved in this because he wants to see more research. I'm involved because I am so angry that something like lung cancer took my daughter, who did everything right, and I just want to see it defeated."

One reason for the growth in lung cancer in nonsmoking women may be a link between the female hormone estrogen and the disease, Dr. Siegfried said.

Indirect proof of that has come from the Women's Health Initiative, the large study that was giving female hormone supplements to some women after menopause. Even though the study has now been halted, a recent analysis showed that among women who got the supplements, there were 67 lung cancer deaths, but only 39 in the group that got no supplements, Dr. Siegfried said.

She has begun a trial with women lung cancer patients that gives them an anti-estrogen substance along with an agent that helps block a growth promoter for cancer cells, but it's too early to have results yet, she said.

The other thing to keep in mind, according to the experts, is that people who have given up smoking are not protected from getting lung cancer in the same way they are from heart disease.

The damage smoking does to the lungs remains even after the person gives up the habit, they said.

"If you quit smoking, your cardiovascular disease declines quite remarkably," Dr. Hill said. "Your risk for lung cancer does not."

The reason, Dr. Greenberger said, is that smoking injures stem cells -- the cells that are used to grow new lung cells when they are needed.

"If they have these lung stem cell changes," he said, "they can persist for 10 or 20 years after they've stopped smoking, and at some time later the proliferative demands of the lung to replenish its own cells calls them into play, and that's when the cancer will begin."

The fact that both nonsmokers and former smokers are vulnerable to lung cancer should be enough to change public policy, Ms. Ambrose believes.

"From our perspective," she said, "this is a political problem now, not a scientific problem. There is no redeeming social value in tobacco, and yet, if we can prevent someone from smoking or if we can help someone quit, what do we do to reward people with earlier detection if they do contract the disease of lung cancer?"

Lung cancer advocates face one other challenge: There are very few survivors to turn out for 5K walks or demonstrations or speeches to Congress.

That often leaves it up to surviving family members, like Jack and Peggy Hill.

Sitting on their deck on a recent summer evening, bathed in bird song, they talked about the life their daughter and her children should have had, and how they want to make a full life possible for others they don't know.

They have set up the Suzanne Hill Alfano Foundation for Lung Cancer Research at Pitt's Cancer Institute. Through their contributions and those of family and friends, it now has grown to about $120,000.

Dr. Hill speaks to groups around the country, and has lobbied the Pennsylvania Legislature to provide more money for lung cancer research.

Mrs. Hill's focus is more personal. She is close to her granddaughters, who are now 15 and 11. The younger one doesn't remember her mother clearly, and the older one can't talk about her.

Her son-in-law has remarried, and the girls' stepmother has been "wonderful, and includes us in everything."

"I tell her, 'I'm so grateful to you; I'd rather it be Suzanne, but it can't be, so I'm glad you're here to take care of them.'

"The day they took Suzanne off life support," Mrs. Hill recalled, "I asked the pulmonologist, 'How can you do this day after day?' and he said. 'When I trained at Mayo, the women who got lung cancer were old women with wrinkles, but now they are younger and younger.' "


Correction/Clarification: (Published June 22, 2009) Dr. Jack Hill used to do health reports on KDKA-TV. This story on lung cancer as originally published June 21, 2009 listed an incorrect TV station.
Mark Roth can be reached at mroth@post-gazette.com or at 412-263-1130. Tomorrow: A Westmoreland County woman describes her journey through lung cancer
First published on June 21, 2009 at 12:00 am
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