BREAST CANCER: The women who fight for their lives & the doctors who are trying to help them

Etched on the back of Suzette Collins' bald head is a pink ribbon, the symbol for breast cancer awareness.

Diagnosed with breast cancer in May and now undergoing chemotherapy that she says makes her "bones ache from the inside out," Collins is well-aware of the modern day plague killing 40,000 American women a year. She has one sister who died from it and another still in recovery. Lumpectomy surgery to remove a tumor in her left breast is scheduled for next month. Radiation to kill off cancer cells near the site of the tumor will follow. The fact that her hair fell out in clumps as a result of the chemotherapy is the least of her concerns.

Joined by other women who have breast cancer, Collins recently sat inside The Caring Place off South Jones Road. It is a place where cancer patients go to get their minds off a scourge that has doctors slashing, poisoning and burning their malignancies -- a process less disfiguring and painful than in the bad old days of 20 years ago, but one that still leaves patients so wounded they wonder whether the hoped-for cure is worse than the disease.

With Breast Cancer Awareness Month starting Friday, the Las Vegas Review-Journal spoke with women in Southern Nevada who are fighting to stay alive. Researchers and physicians were consulted about the state of cancer care and whether new treatments and even cures are on the horizon.

What Collins and so many other women with breast cancer would most like to see come out of the awareness month devoted to their disease is more of a sense of urgency at finding its cause, the critical step in preventing a cancer that now presents itself in as many as seven different forms.

Collins' manner of speaking is oh so polite, so gracious: "Good afternoon, how are you? It's a wonderful day, isn't it? Isn't it about time we find the cause of cancer?"

When she reveals with a charming smile that she worked in customer relations for a major corporation, it comes as no surprise.

In The Caring Place, an elegant space offering free therapies to cancer patients that include massage and yoga, tai chi and art therapy, Collins painted deliberately, grateful, she said, to free her mind of thoughts about cancer.

As the white canvas became covered in purple and green and yellow, Lisa Agnello, an artist who regularly donates her time here as an instructor, complimented Collins on her use of color. A visitor asked the fledgling artist, who discovered the lump in her breast that a biopsy proved cancerous, what the meaning of her abstract work might be.

"I have no idea," the 45-year-old Collins said, her seemingly ever-present smile disappearing. "But I do know this: I'm going to kick breast cancer's ass."

Despite billions of dollars spent on research, far too many mothers, wives, daughters, sisters, grandmothers, aunts and lovers still are struck by the disease. The National Cancer Institute calculates that in the United States alone, there are more than 2.5 million women alive who have a history of cancer of the breast.

The American Cancer Society estimates the disease will strike about one in eight women.

For some women, the specter of contracting the ailment is so terrifying that they become virtually paralyzed when they feel a lump, unable to seek medical attention.

Gloria Hicks, a 67-year-old retired state welfare employee, said she had a lump in her breast for more than a year before she went to hospital because of severe pain in her back and legs.

"I found out that the cancer had spread from my breast to my bones," she said as she crocheted in her North Las Vegas home. "I hurt so bad I couldn't walk."

A relative of her husband's supposedly had caught her own breast cancer early but was dead within a year. "She had her breast cut off, had chemotherapy and radiation, and she died anyway," she said. "So I figured when I got that lump, I would die real soon."

Dr. Anu Thummala, who examined Hicks in the MountainView Hospital emergency room in early 2009, talked her into taking chemotherapy instead of going to hospice. With the drug treatment, and a shock treatment of radiation to the spine, Hicks now can walk.

"She's incurable, and you don't know how much longer she will live, but she's enjoying her family," the physician said. "Now she's fighting to live. If she had come in earlier, there was so much we could have done for her. It's heartbreaking what fear can do."

The good news is that breast cancer rates have been declining by about 2 percent a year since 1999. Most researchers think that the drop is linked to a decreased use of menopausal hormone therapy after studies showed that a combination of estrogen and progesterone put women at an increased risk of breast cancer.

The death rate for breast cancer in women has also decreased. From 1990 to 2006, government statistics show that the death rate decreased by 3.2 percent per year among women younger than 50, and by 2 percent per year among women 50 and older. The decline has been attributed to both improvements in breast cancer treatment and the early detection afforded by mammography, a low-dose X-ray of the internal structure of the breast that most cancer experts in the United States recommend be done annually after the age of 40.

Based on the most recent data, relative survival rates for women diagnosed with breast cancer are 89 percent at five years after diagnosis, 82 percent after 10 years, and 75 percent after 15 years. If the disease is caught before it spreads, the five-year survival rate is 98 percent, well above the 23 percent survival rate for those who don't catch the cancer early.

Death rates from breast cancer for African-American women are about 38 percent higher than for white women, a fact researchers largely attribute to the unequal access to health care because of a lack of insurance.

Risk factors for the disease haven't changed much over the years. Women are much more likely to develop the disease than men, who account for only 1 percent of the cases. Advancing age, genetics, radiation exposure, obesity, excessive drinking of alcohol, beginning periods at a younger age, beginning menopause at an older age, having a first child at an older age, post-menopausal hormone therapy -- all may increase the risk of breast cancer.

But most women with breast cancer have no known risk factors other than simply being women.

As 63-year-old Sharon Bunker, a retired aerospace space engineer, prepared herself for another radiation treatment at a Comprehensive Cancer Centers of Nevada facility near St. Rose Dominican Hospital, Siena, she said she believed "great strides have been made in treating the disease" but that "we have to find out why in God's name this is happening."

When she was diagnosed in June after a mammogram discovered a tumor, she told her physician that she thought she had done "all the right things, all the things doctors told me to do to live a healthy life" and still came down with breast cancer. "I remember my doctor telling me, 'Sharon, don't blame yourself. It's nothing you did. It seems to attack at random.' "

Diagnostic imaging showed that Bunker's cancer remained localized. She is grateful that a new test, known as the Oncotype DX, determined that she wouldn't need chemotherapy. Dr. Matthew Schwartz, the radiation oncologist treating Bunker on this day, said the sophisticated test showed that chemotherapy would do more harm than good. "Onco is a great step forward for patients," he said.

"I haven't had to give up my golf game during my cancer treatment," said Bunker, who has blisters from the radiation.

Bunker's treatment plan consists of a lumpectomy that conserved most of her breast, followed by weeks of radiation and five years of the drug Tamoxifen, which interferes with the activity of estrogen, a female hormone that can promote the development of breast cancer.

A few weeks after Bunker was diagnosed with the disease, so was her sister. "I'm sure we'll be survivors," Bunker said. "But it's frustrating that with all the time and money spent, we still don't know the cause."

That frustration is shared by Dr. Susan Love, a longtime surgeon and researcher whose work "Dr. Susan Love's Breast Book" has been called "the bible for women with breast cancer" by The New York Times.

Appointed by President Bill Clinton to the prestigious National Cancer Advisory Board, Love said the scientific establishment has "lost a sense of urgency" toward rubbing out the disease and has "accepted the status quo notion" that breast cancer will always be around.

"The focus is wrong," she said by phone from the Dr. Susan Love Research Foundation near Los Angeles. "The issue is not money. We are receiving money for research. And the issue is not awareness. In October you can't get away from discussions about breast cancer. Everybody knows about the problem. The issue we need to focus on today is finding the cause and finding the cause in people, not animals. We're still talking about the same risk factors that we did 20 years ago, and more than 80 percent of the women who get breast cancer have none of the known risk factors."

Too often, she said, breast cancer research is focused only on killing tumor cells. And most prevention research has been conducted in the lab on cancerous tissues and mice. But what is learned from animals, she said, doesn't always translate into how cancer develops in women. And tissue only from women with cancer might not help solve the puzzle of what caused the cancer.

To try to ensure that there are enough human subjects for studies, Love began the Love/Avon Army of Women, a research effort to recruit 1 million women to help unlock the secrets of breast cancer. Nearly 400,000 women have signed up in two years. More than 80 percent have never had cancer. Blood, urine, breast tissue and fluid may be donated to responsible scientists who will share their findings with other researchers.

"A lot of money has been spent to make mice look more like people because studying people is messy," said Love, one of the first to sound the alarm on the dangerous relationship between hormone replacement therapy and breast cancer in post-menopausal women. "But women are getting breast cancer, not rats and mice. Nice pretty science can be done on rats and mice, but that's all it is."

The process of scientists competing for grants regarding breast cancer instead of collaborating has to end, she said.

In academia, Love said, scientists working to get tenure have a time frame to do so and engage "in a little study" that comes up with something a "little different than a year before," perhaps a drug that will make someone live a month longer.

No longer should scientists be content to make breast cancer a treatable chronic disease, Love said.

"On a young woman, chemotherapy makes her lose fertility," she said. "Chemo also causes second cancers, and radiation can have side effects, just as surgery does. Why set our sights so low? Why not get rid of it? Too many now see (breast cancer treatment) as a career. That's not OK with me."

Love hopes her million-woman army will speed the research toward a cure.

"We should be able of figure this out," she said. "We now have a vaccine for cancer of the cervix. It took just seven years to figure out polio. I'm very frustrated. We need to put our heads together. ... Too much emphasis is now on molecular biology, where they categorize each gene and match a personalized medicine to the cancer. I think we can't just do that. We need to find out what's causing it. It could be a virus. It could be like the bacteria causing ulcers that we now treat with antibiotics."

Don't tell Connie Bernstein and other women with breast cancer that too much emphasis has been placed on matching a personalized treatment to a cancer. Although they, too, look forward to the day when no other women face the disease, they pray for new treatments that allow them to prolong their lives. The proper balance in focus and funding must be found, they say.

A former professional singer who founded The Caring Place with Las Vegas oncologist Dr. Mary Ann Allison "as an oasis away from medical facilities," the 52-year-old Bernstein is being kept alive by Herceptin, the first molecularly targeted treatment for breast cancer.

Bernstein was diagnosed seven years ago with breast cancer that initially responded to surgery, chemotherapy and radiation. It recurred two years later and spread widely throughout her body, eventually leading to brain surgery to remove a tumor. Bernstein, the wife of boxing commentator Al Bernstein, wept as she sat inside the center and talked about the drug she now will be on for as long as she lives.

"My son is 11 now," she said as she sat in the lobby of The Caring Place. "Without Herceptin, I would have never seen him grow up."

Herceptin works on breast tumors with an overabundance of the protein HER2, which affects 15 percent to 25 percent of women diagnosed with breast cancer. In the past, such a tumor was considered especially deadly. Today, women with HER2 tumors have some of the best breast cancer survival rates.

Binding to the HER2 protein, Herceptin prevents it from relaying a signal that stimulates the cancer cell to divide. Unlike standard chemotherapy, the drug doesn't cause the side effects that most people associate with cancer treatment such as hair loss and nausea.

Like so many cancer drugs, its cost is staggering, around $40,000 for a 12-month course of treatment. While most insurance plans cover much of the cost, many patients struggle to pay for care.

The researcher whose work resulted in Herceptin, Dr. Dennis Slamon, the director of the Revlon/UCLA Women's Cancer Research Program at UCLA's Jonsson Comprehensive Cancer Center, maintains that matching a specific medicine to a cancer is where cancer treatment is going.

Herceptin was the first in a wave of new treatments that target a cancer cell. Scientists now say companies have as many as 200 targeted drugs in their pipelines.

"The one-size-fits-all treatment approach is quickly falling by the wayside," said Slamon, who noted that trials of Herceptin in Las Vegas during the 1990s helped bring the drug to the marketplace in 1998. He said cancer care in Las Vegas has always been first rate.

When Slamon first began his work identifying molecular changes in tumors, he couldn't get funding.

"No one thought it would work," said Slamon, who struggled to bring his treatment concept to fruition until the American Cancer Society realized the merit of his experiments and provided funding.

Like Love, he was appointed to the influential cancer panel by Clinton.

"The concept of one disease is wrong," he said. "There won't be one fix. ... There are six different molecular subtypes."

Herceptin is often used with the standard therapies of surgery, chemotherapy and radiation for around a year. That has been the treatment plan that Allison, one of the co-founders of Comprehensive Cancer Centers, has used with 59-year-old Jody Haddad, a former parole officer and flight attendant now working as an office manager for a Las Vegas hazardous waste company.

Sitting in a Henderson treatment facility receiving Herceptin through an IV, Haddad said that unlike traditional chemotherapy, which required steroid use to help prevent nausea and resulted in her gaining 25 pounds, the drug gives her no ill effects. "So far, so good," she said.

Like virtually every cancer treatment, Herceptin can have severe side effects for some patients. Slamon has acknowledged that the drug can exacerbate heart conditions often brought on by traditional chemotherapy.

With her husband, Charles, beside her, 48-year-old Antoinette Waiters sat in Dr. Karen Milligan's office at the Nevada Cancer Institute and described how the drug forced her into congestive heart failure.

"It made me much worse," she said. "Before I just had to worry about cancer."

First diagnosed in 2004, she went through the traditional modes of therapy, lumpectomy, radiation and chemotherapy, and went into remission until last year . "Five years to the day when I was first diagnosed, I found it again in my left breast. I noticed that my skin started pitting. I broke out with hives. The doctor kept saying it was nothing. But I had them biopsy a spot that was hard and found out I had inflammatory breast cancer."

A radical mastectomy, radiation and more chemotherapy, which included Herceptin, hasn't fought off the cancer. Unable to get the cutting-edge treatment she wanted through her own doctor, Waiters went to the Nevada Cancer Institute. Milligan has put her on a drug called Tykerb, which has had some success in beating back breast cancer that has spread to other parts of the body.

"It might be my last option," said Waiters, who has become too weak to ride her own motorcycle alongside her husband, so she sits behind him on his bike.

Charles Waiters, a retired Air Force master sergeant, defused bombs in Iraq, the kind of dangerous work dramatized in the Oscar-winning movie "The Hurt Locker." But he said his anxiety over his wife's condition is far worse than anything he experienced in war.

"We were high school sweethearts who had the family we wanted," he said. "It's hard not knowing if a drug is going to work or not. I don't know how I could live without her."

Just how consistently cutting edge the cancer treatment is in Las Vegas is debatable.

Dr. John Ruckdeschel, who took over the reins as CEO and director of the Nevada Cancer Institute in June, calls the care women receive locally "good but not great."

Ruckdeschel said from what he has seen, the care too often is not coordinated among primary care doctors, surgeons, radiation oncologists and medical oncologists. Such coordination is critical, he said, in determining what kind of treatment would best serve a patient.

"It tends to be disjointed, and women are going through several centers to get their care," he said. The institute, which opened in 2005, is trying to offer as many treatments as possible under one roof, with women not having to drive all over town for care -- and waiting only hours, rather than days, for test results.

If co-founder Heather Murren's vision is carried out, the institute will become a nationally designated, comprehensive cancer center along the lines of the one Ruckdeschel formerly headed in Michigan. In other words, it will focus not only on basic science research and clinical (patient-oriented) research, but also on prevention and delivering care that medical experts say meets the highest standards.

Although most patients interviewed for this article rated their cancer care as excellent and compassionate, some women expressed dissatisfaction.

Waiters, for example, said she grew frustrated with a doctor who didn't want to test her for cancer that turned out to be there, or to try new drugs she knew were on the market. He seemed content, she said, "to just let my time run out."

Collins said that the physician who will do her upcoming surgery said her mammograms from up to three years before showed she had a mass, but the radiologist didn't read the tests properly.

"And because I have a family history of cancer, my doctor knew my sisters had breast cancer and that my mom died of uterine cancer, more sophisticated tests should have been regularly done on me," she said. "Mammograms aren't enough for someone in my situation, but no one ever told me that until after my cancer was finally discovered."

Christine Wunderlin, who runs a career counseling business, doesn't think she needed to suffer from lymphadema, a serious swelling in the arm caused by the retention of lymph fluid. A mix-up in medical treatment, she said, forces her to regularly visit Dr. Richard Hodnett's Lymphatic Center of Las Vegas, where a therapist massages the fluid to disperse it. And she must wear a compression garment on her left arm for the rest of her life.

In traditional breast cancer surgery, surgeons remove most or all of the lymph nodes from the underarm closest to the breast cancer. The lymph nodes are the most reliable predictor in determining whether the cancer has spread to other parts of the body. Lymph nodes, small bean-shaped glands, help eliminate bacteria and viruses and are needed to drain and regulate the flow of lymphatic fluid.

Without lymph nodes, many breast cancer survivors find that lymphatic fluid builds up and leaves them with lymphedema. To keep this from happening, some surgeons now use a newer technique called sentinel node mapping. The sentinel node is the very first lymph node or nodes to receive drainage from a cancer-containing area of the breast.

Researchers have found that 97 percent of the time if the sentinel node is negative for cancer, so are the other lymph nodes, which generally means the surgeon will not remove surrounding lymph nodes, lessening the chances of lymphedema.

"The surgeon said for some reason the dye he used to find the sentinel node didn't work. So he removed all 11 lymph nodes," Wunderlin said. None of her lymph nodes was found to be cancerous.

Ruckdeschel, who headed the recent successful effort to open a satellite cancer care operation of the institute at University Medical Center, said he has learned that many local surgeons don't even offer the sentinel node technique to patients.

Dr. Theodore Potruch is one local surgeon who has offered the technique for years.

A founding fellow of the highly regarded American Society of Breast Surgeons, Potruch learned the sentinel node technique about a decade ago at the University of Texas MD Anderson Cancer Center in Houston, the world's most renowned cancer research institution.

Potruch recently performed a partial mastectomy in which patient Maria Chamul received the benefit of sentinel node mapping.

Before her surgery, she had gone through weeks of energy-sapping chemotherapy to reduce the size of her tumor.

Well before Chamul entered the operating theater after 8 a.m., Potruch injected her with a radioactive tracer that is used for the mapping.

After the anesthesia took hold on his patient, Potruch nodded to the surgeon assisting him, Dr. Joseph Contino, and surgical technician, Leslie Schultz.

"Let's go for it," Potruch said as he used a handheld Geiger counter that sounded off as it found the radioactive tracer in the lymph nodes. A blue dye helped Potruch get visual confirmation of the sentinel node on a monitor.

With an incision in the armpit, he took out the node, sending it to a pathologist to be checked for cancer. Word came back in minutes. Great news. It was clean. No other lymph nodes had to be excised.

The breast surgery followed. With a quick draw of the scalpel, Potruch went inside the breast to remove the tumor that would have killed Chamul one day.

"There it is," he said, staring at the hunk of malignant flesh that has changed the woman's life forever.

About a half-hour had passed.

"When you do as many of these as I've done, it doesn't take long," Potruch said.

For more than 30 years, Comprehensive Cancer Centers have been doing most of the heavy lifting in cancer care in the Las Vegas Valley. More than 60 percent of cancer patients, about 25,000 a year, receive their treatment at eight different locations. About 5,000 of those patients each year have cancer of the breast.

By comparison, the Nevada Cancer Institute has served 15,000 patients since its opening five years ago, including 1,109 breast cancer patients.

The Nevada Cancer Institute isn't yet up to full speed; Ruckdeschel concedes much more staffing needs to be put in place. Yet it has received the lion's share of attention from both politicians and the media. Not only have legislators provided millions of dollars in funding, they also made the institution the state's official cancer institute before even one patient had been seen.

Murren has been a fundraiser unlike any other in the history of Nevada, hosting one event after another featuring top celebrities. Her 2002 fundraising campaign pointed out Nevada had the fourth-highest cancer death rate among states for women and the 28th-highest for men. She noted that people were leaving the state for treatment.

Dr. Nicholas Vogelzang, the first director of the Nevada Cancer Institute who left for Comprehensive Cancer Centers in July, acknowledged the competition between the two groups.

When he was at the institute, for instance, he touted how important it was for patients to have a "one-stop shop" to help them through their ordeal, something his new employer seldom offers.

Today, Vogelzang emphasizes how many potentially life-saving clinical trial of drugs are carried out by Comprehensive Cancer Centers, 41 this year, in comparison with the institute's four. Neither is yet focused on the kind of research in search of a cause espoused by Dr. Love.

The competition between the two groups should be healthy, according to Dr. Ole Thienhaus, the departing dean of the University of Nevada School of Medicine.

"I'd say it's a very good thing for Southern Nevada when you have organizations arguing over who can deliver the highest standard of medicine," Thienhaus said.

Contact reporter Paul Harasim at pharasim@reviewjournal.com or 702-387-2908.