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Article in 5/9/05 Philadelphia Inquirer


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Heather and Brad Saler, at a lung cancer support group. Her diagnosis came two years ago. She never smoked, though most in the group did.

Cancer Chronicles | Sick of the shame

Lung cancer afflicts even the smokers who quit long ago, yet it gets little research, a support group says, because of its stigma.

By Fawn Vrazo

Inquirer Staff Writer

The lung cancer support group meeting had been going on for some minutes when David and Joan Frieder walked nervously into the room. The news was grim.

After years of almost continuous chemo, treatments that left David wretchedly ill but not cured, he could endure no more.

"So I'm in hospice now," said the 66-year-old retired stockbroker from Bala Cynwyd, beginning to cry and waving at Joan to continue their story. Soon Joan was crying, too. "I felt sort of guilty coming here today," she said. "We're supposed to give everyone hope."

"That's not what it is," objected the group's youngest member, Heather Saler, 35. "What it is - it's support."

Meeting monthly at a restored 18th-century mansion in Philadelphia's Fairmount Park, the Frieders, Saler and about 10 others lean heavily on one another while confronting the deadliest and most maligned of cancers.

Lung cancer is the nation's No. 1 cancer killer, claiming nearly 164,000 lives a year, greater than the toll from colorectal, breast and prostate cancers combined. More than 80 percent of its victims die within five years.

Yet because of its stigma - 85 percent of lung cancer cases are caused by smoking - the disease gets a disproportionately low share of government research dollars. It lacks celebrity activists and high-profile fund-raising campaigns, and its victims get little sympathy.

Most of the local support group's members - Saler being the major exception - smoked for years. But this isn't the guilt-ridden group you might expect.

Instead, members are often angry and defiant, bemoaning the low level of research funding and bridling at the way others treat them.

"You're a pariah," David Frieder says.

Within the support group, the fate of being a lung cancer patient takes on a whole new meaning. ABC News anchorman Peter Jennings, who recently disclosed he has lung cancer, is viewed as a potential asset because he might attract more research money. But members feel he also may have hurt the message by focusing on his own smoking and giving what seemed like a public apology - "I was weak" - for resuming the habit during 9/11 coverage.

"Why did he have to say that?" Saler asked.

•

They sit in a loose circle on rose and mint-hued couches and chairs at the Ridgeland Mansion, a Fairmount Park estate leased by the Wellness Community, a nonprofit that offers a variety of free programs to patients and their families.

Frieder, Saler, Kathy Songin and Mim Roeshman are among the regulars, as comfortable with one another as old friends. They all have lung cancer - but also share something else.

When Frieder began smoking in the mid-1950s, cigarettes were a fun, even innocent thing. There was nothing wrong with pitching them to young adults, and the Marlboro company gave him free samples to give out to fellow Wharton students.

Frieder quit 15 years ago, after his first grandchild was born.

Songin, 58, a Cherry Hill resident who still carries a trace of accent from her native Scotland, began smoking in college. She quit 20 years ago.

Roeshman - the group's eldest member at age 80 - was once so addicted to smoking she took only baths "because I couldn't figure out how to keep the cigarette dry in the shower."

She quit smoking 35 years ago.

But they all still got lung cancer.

They and other quitters in the group are far from unique. As many as one-half of all lung cancer patients nationwide are former smokers.

It's one of lung cancer's dark little secrets: Stopping smoking doesn't erase the risk.

But it may help lessen the guilt. "It's part of our history," says Songin. "It's not who we are today."

Songin grew up hearing the message that if you quit, "in five years your lungs will be as pink and healthy as the nonsmoker's."

Today, though, cancer groups warn that while stopping smoking lowers the risk, cigarettes can cause irreversible damage to the DNA of lung cells.

The new quest is to figure out which smokers are more likely to get cancer.

A formula developed recently by researchers at Memorial Sloan-Kettering Cancer Center in New York found the important thing is not how long a person has stopped smoking but how long he smoked in the first place.

The researchers determined, for instance, that if a man who smoked two packs a day for 50 years quit, he would have a one in seven chance of developing lung cancer in the next 10 years. A woman of 51 who smoked one pack a day for 28 years and quit for nine years would have a one in 120 risk. (The lung cancer risk for nonsmokers is one in 1,400.)

Still, no one knows for sure.

It's also true that the vast majority of smokers will escape lung cancer - only 20 percent develop the disease.

What's really needed, say the support group's members, is a universal screening test to find lung cancer in its earliest and potentially most curable stages.

Several members, including Arnold Levin, a retired government tax accountant from Melrose Park, had their lung cancer discovered early during chest X-rays done for other reasons.

Roeshman, a self-described "domestic goddess" from Wynnewood, found hers because she demanded annual chest X-rays after her mother died of lung cancer. "For 12 years I was fine," she said. "The 13th year they said, 'Uh-oh.' "

An influential group of lung cancer physicians recommended last month that all middle-aged and elderly smokers and ex-smokers enroll in clinical trials offering screening.

But others don't recommend blanket screening because there's no evidence it helps lower death rates.

The National Cancer Institute has launched a project to compare outcomes for smokers and ex-smokers who will get three annual screenings with either chest X-rays or CT scans. But critics say the project is too limited and comes too late - it won't be finished until 2009.

If only there were more research money to settle these questions, support group member Jane Dietrich, 66, a nurse who quit 25 years ago, lamented at a recent meeting. "If we're going to blame lung cancer on smoking, then why can't we use tobacco settlement money on lung cancer instead of on fixing our roads?"

Lower spending on lung cancer research appears most striking when comparing death statistics. For example, lung cancer, the No. 1 cancer killer, gets $1,829 in government research money per death; breast cancer, the third top killer, gets 13 times more, $23,465 per death.

While it's not clear that lower funding levels have hampered breakthroughs, doctors recently began treating the disease more aggressively. They routinely give preventive chemo and radiation to patients after surgery (something done with breast cancer patients many years).

Drugs that target molecular factors of lung cancers have been developed. But one, Iressa, has fallen short of expectations, while other drugs appear effective only in small subsets of lung cancer patients.

Government figures don't show any significant improvement in survival rates: Overall, only 15 to 17 percent of lung cancer patients live five years. Even worse off are those with a rarer and more deadly cancer type - called small-cell. If their disease is extensive, only about one in five will live 18 months.

Still, the picture looks better on the ground.

David Frieder so far has beaten the odds by surviving 41/2 years. Levin, 75, has lived for seven years since diagnosis, and Neicy Shechtman, 62, who has small-cell lung cancer, for eight.

•

Her hair a cascade of bouncy golden curls, Heather Saler laid her worries before the support group last February. Diagnosed with non-small-cell lung cancer two years ago after never smoking a day in her life, Saler had recently gotten a "questionable" CT scan result.

"They're telling me not to worry, but, yeah, right," she said, her husband, Brad, sitting close to her on the couch. "I've been having anxiety attacks." She started to cry.

Under the skilled guidance of support group facilitator Sandy Bernstein, other members of the group were soon assuring Saler that they, too, had lost it while worrying about tests.

Then Loretta Carter, 61, shared her own frightening developments.

Flanked by two best friends, Carter, a Philadelphia homemaker, said she was told her cancer was in its "final stages" after it had eaten through her hip bone.

But she was still energetic enough to work out on a mini-trampoline. "Some days I feel good," Carter said. "Some days I feel bad; that's how it is. But by the grace of God, I'm still here."

It's like that at the lung cancer support group meetings - fears, answered by supportive words from other members, followed by other fears, met with more support, intermixed with news about everything from latest treatments to people's vacations.

I have been sitting in on the group's meetings for several months. And even though I have metastatic breast cancer myself, the group never fails to cheer me up. There's a great will to live here, and no fake words of support, only empathy over a disease we all have.

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Heather great article, You and Brad make a great looking couple.

FYI- The Philadelphia Inquirer is the paper in the Philly area. It has the biggest public circulation of any paper in Phila. It also has a hugh circulation in South Jersey also.

This article is on the Health & Science section. But the picture of Heather and Brad is hugh on the front page there, and is bordered by light green. It stands out and you cannot miss the article.

Right under it it says in headlines about 1 inch high, black lettering, stating "Sick of the shame" It is an awakening article for ex-smokers who think they are immuned to getting LC or had no idea they can still get this.

Katie posted it so you can read the article for yourself. But I just wanted to make you aware that the pic. that was downloaded was nothing compared to the picture and size of the article as it appears in print.

Great going Heather... I pray this article gets read, and scares all those ex-smokers. We need funding and early detection, so we can nip this thing in the butt before it spreads. We all know that, know I pray this gets through to the public.

Thank you so much Heather for making this happen. You are a gem.

I am so proud of all your accomplishiments, starting from your walk-a-thon in Nov, and now this.

Maryanne

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