Straight talk on breast cancer

What do actresses Maura Tierney and Cynthia Nixon, singers Carly Simon and Kylie Minogue, feminist Gloria Steinem and designer Betsey Johnson have in common, aside from being beautiful, accomplished women? They are all breast cancer survivors. Unlike most women who have struggled with the diagnosis, these women must deal with their cancer in public. They have been thrown into the unbidden position of being role models because cancer chooses you, you don’t get to choose it.

Nothing but the truth: A whole new world
According to the National Cancer Institute, there are five types of standard treatment for breast cancer.

Surgery can take the form of a lumpectomy, which removes only the tumor and a small amount of normal tissue but preserves the breast; a partial or segmental mastectomy; and the less frequently used surgeries of total mastectomy, modified radical mastectomy, and radical mastectomy.

In addition to surgery, which is often accompanied by or followed by breast reconstructive surgery, some patients will also require adjuvant therapy in order to kill any remaining cancer cells. This can be in the form of chemotherapy, radiation therapy or hormone therapy such as tamoxifen. It can also be any combination of those therapies.

One of the newer weapons in the arsenal to kill the cancer cells without harming the normal cells is called targeted therapy. One type uses monoclonal antibodies, such as Herceptin, to target and kill or stop the growth of cancer cells by attaching to substances only present on the cancer cells. Another type is called tyrosine kinase inhibitors, which block signals needed for tumors to grow.

Many new methods of detection and treatment of breast cancer are either available for public use or are in various stages of clinical trials and experimentation. One valuable test that has been available for a decade is now getting more scrutiny.

Patients who have invasive breast cancer are often tested for their resistance to the drug tamoxifen. If the patient is genetically predisposed to being able to metabolize tamoxifen, then tamoxifen is considered to be an excellent treatment. However, not all patients benefit from tamoxifen, and the delay in effective treatment can lead to an undetected spread of the cancer.

According to the Oct. 7 issue of the Journal of the American Medical Association, those who cannot benefit from tamoxifen should be treated with hormone therapy, Herceptin being the most common.

Dr. John Glaspy, an oncologist with UCLA’s Jonsson Comprehensive Cancer Center, said the genetic test is no longer restricted to clinical trials. “The test of tamoxifen resistance is widely available everywhere,” he said. “It’s a simple blood test that oncologists order when appropriate.”

Yet a new study from the University of California, San Francisco, found that as many as two-thirds of patients with invasive breast cancer have not received a test for targeted treatment and prevention. The study focused primarily on tests for the gene called HER2, which can determine whether a patient will benefit from Herceptin. It stated that one in three breast cancers would benefit from the hormone treatment.

Additionally, women with normal HER2 genes could be harmed by taking Herceptin. The study found that overuse of the hormonal treatment can expose a patient to “an unnecessary risk of heart failure.” Yet the study found that only one-third of patients with a new diagnosis of invasive breast cancer had proof that they had received the appropriate test.

Further complicating the efficacy of treatment, the report said that up to 20 percent of the test results from small local labs were shown to be inaccurate after those same results were analyzed at larger labs.

The ramifications of not being given the most effective treatment can be devastating, as the cancer may continue to spread. That is what happened to Kristen Perry of Ventura, who has been living with Stage IV breast cancer since it was diagnosed in 2005.

“When I was diagnosed, I already had cancer that had metastasized to the spine,” Perry said. “Tamoxifen did not work for me. I don’t do too well off chemotherapy, unfortunately. Then it went to my ovaries. So I went back on chemotherapy. Now it’s not spreading, just sort of staying where it’s at, and I’m holding my own.”

Researchers at Harvard are very excited about the discovery that a drug commonly used to treat diabetes also may greatly enhance the effectiveness of chemotherapy for breast cancer. That is because the drug, which has long been proven to be safe, targets cancer stem cells that are very resistant to chemotherapy. Projecting into the future, researchers said this drug, metformin, which is marketed under the names Glucophage and Fortamet, could even eventually prevent cancer from recurring.

Mammograms have proven to be a very valuable tool in reducing the death rate from breast cancer. A new study released by the American Society of Clinical Oncology showed that three-fourths of the women in their study who had breast cancer and died from breast cancer did not have regular mammograms. The study included nearly 7,000 women and followed them over a decade. It indicated that those who did not get annual mammograms died at three times the rate of those who did and had a death rate that was the same as it had been in 1970, before the widespread use of mammograms.

What’s old is new again: alternative therapy
At the opposite end of the spectrum of cutting-edge science are alternative therapies, some of which have been used for thousands of years. Vitamin regimens, herbs, massage, acupuncture, meditation, yoga and other methods have endured and are again embraced by those trying to feel better and function.

The Mayo Clinic has issued a list of alternative therapies that it believes are helpful during and after cancer treatments. The combination of Western medicine intertwined with Eastern medicine is very appealing to many patients. The approved treatments, most of which are covered by many insurance companies, are acupuncture, aromatherapy, biofeedback, exercise, hypnosis, meditation, music therapy, relaxation techniques, tai chi and yoga.

One of the most popular alternative therapies for breast cancer patients is acupuncture treatment. Jae Lee is an acupuncturist at Acumen Health Clinic in Simi Valley. Originally from Korea, Lee learned several types of acupuncture and explained how it works.

“We say we have energy circulation in the human body. We call it chi. My therapy helps the human body to use its own energy to heal itself. My job is to strengthen that function.

“No, we don’t cure cancer, but we do improve the energy circulation and body functions. It helps the body fight the cancer.”

Lee also teaches tai chi and said it can achieve some of the same goals.

Perry said she has tried a few alternative therapies and is convinced they have helped her. “I believe in alternative medicine,” she said. “Even if someone is a little skeptical, it is worth the effort. Bone cancer is very painful, and I think my pain has subsided greatly due to acupuncture. It hasn’t gone away, but it is manageable.”

Donna Iverson faced down breast cancer for the third time this year. And this time, she said, she needed all the help she could find, including alternative therapies.

“I am very much for holistic methods, and I’m not a big pill person,” she said. “I’m more interested in nutrition. When I was diagnosed again, I decided to do a combination of conventional treatment and alternative treatment. I have been on a combination of vitamins and getting regular colon hydrotherapy. I did a liver flush while I was poisoning myself with chemo. My oncologist is very open to this and she didn’t see any harm in it.

“After my first bout of cancer, I did the colon cleansing and massive amounts of carrot juice and other nutritional therapy. It worked for me.”

Cancer is very expensive
Until one is faced with medical bills that are far beyond one’s ability to ever pay them off, it is difficult to comprehend the true value of a good health insurance policy. And when it is a matter of life or death, tolerable pain or immense suffering, the quality of health insurance dictates whether you can plow forward with appropriate treatment or spend your time worrying about the bills.

Iverson faced a third diagnosis this year without adequate health insurance. After paying the enormous costs of insurance through a C.O.B.R.A. plan, Iverson ended up with the only policy she could find, a policy from Blue Cross that cost $600 a month. And that did not include coverage for her children. Iverson said it became simply unaffordable.

Adding to her frustrations, Iverson had recently graduated from MRI tech school and has not been able to find a job in the field. So she declared bankruptcy and then qualified for Medi-Cal. This unfortunate series of events actually may have saved her life.

“I had to go to a different oncologist because I had no insurance,” Iverson said. “I had to go through the county. The county oncologist said, ‘Since I don’t know you, we should probably do a PET scan as a baseline.’

“Thank God I was in the position I was in,” she said. “I couldn’t feel the lumps under my arm even though one was enormous, apparently. The surgeon didn’t feel it nor did the oncologist. If it hadn’t shown up in the PET scan, it would not have been diagnosed.”

Iverson said if she had continued to see only her private doctor, things could have turned out differently. “I would have gone to my other oncologist, I would have had my blood test done, she would have done a quick feel under the arms and across the chest, and she would have told me that I look fine. My tumor markers were very low even though I had raging cancer.”

Iverson had her breasts removed in prior surgeries, and the new cancer was in her lymph nodes. “I had a couple under my arms that were removed, then I had a couple in my chest that were too close to vital organs, that couldn’t be removed. I had three surgeries, all told, and chemo and radiation.”

Her private doctor had only accepted the PPO type of insurance, not the HMO. Although Iverson feared she would simply have to go without health insurance, she now is satisfied with the treatment she received through the county. “I did get the treatment I needed.” As for alternative therapies, Iverson has had to foot the bills herself.

Perry considers herself very lucky when it comes to health insurance. “I have excellent coverage. I’m with Blue Shield/Blue Cross PPO. I have a dual policy because my husband works for the government. I have not had any insurance problems, none. I think that’s why I have done so well. I have had excellent care, the best medicine can offer.” Perry receives her treatment through the City of Hope.

Perry said she is trying now to help other people who aren’t lucky enough to have great health insurance. “People never talk about the expense of cancer. It is very expensive. That was one of the reasons I set up a foundation. The purpose is to raise money for cancer research and for those who need help.” The second annual fundraising concert for Perry’s foundation was held on Oct. 10. She said many other events are now in the planning stages.

Debbie Boross has done well since her bout with breast cancer in 2003. “I did not experience much difficulty with my insurance company,” she said. “The most important tip I received was to ask the insurance company for a case manager. It was extremely helpful to have only one point of contact with the insurance provider. I had a PPO plan with a company called Benefit Planners out of San Antonio, Texas. Be sure and keep copies of any faxes, mailings and verbal communications in a notebook.”

But the situation was much more complicated and difficult for Mary Ellen Sheets, who passed away on Oct. 15. She had asked Boross to be her caretaker, and Boross stepped up to the job. After four different hospitalizations since early summer, Boross knew that Sheets needed full-time care.

Sheets had insurance with Blue Cross/Anthem, which listed nine skilled nursing homes under her plan, all of which were located in Oxnard. Boross learned that only five were actually in the plan and some had spotty histories. Assisted living places, which were an affordable alternative, refused to accept Sheets because she was only 54 years old. Boross was told the average age at these facilities was 80.

“So you have the money and the need but are too young for this type of arrangement,” Boross said. “So we were down to only two choices, an undesirable nursing home limited to one geographical area or private 24/7 care at her apartment, costing $3,100 a week.”

Lisa Baretto, CEO of Ribbons of Life Breast Cancer Foundation is a friend of Sheets. Baretto said that Sheets was required to remain in the hospital in order to receive the appropriate end-of-life care even though her wishes were to die at her home. Baretto said it was necessary to call the treatment “palliative care” because the insurance would not pay for a hospice.

One myth about breast cancer is that only women get it. Although women get the large majority of breast cancers, about 1,700 men will get the diagnosis each year and 450 will die from it.   

For more information on the foundations mentioned above, go to www.krisperryfoundation.org. 

joanbien@sbcglobal.net