Writing about breast cancer is not something I chose willingly. It was a story that had to come to me on its own terms, in the form of a diagnosis of breast cancer. Read Maureen’s story.
Early detection clouds treatment options
A growing number of baby boomer women, vigilant about staying healthy, are being diagnosed with breast cancer years before they ever feel a lump or develop symptoms.
This year, an estimated 54,300 American women will be diagnosed with breast cancer so early that some doctors call it “pre-cancer.” That’s nearly 40 percent more than in 1999.
But while early detection is a good thing, it presents a whole new set of issues for women and their doctors to grapple with.
Women diagnosed with early cancer face some of the toughest decisions of their lives without clear guidance from a medical establishment divided over which treatments are best.
The options are clearer for women in later stages of breast cancer because there’s a long history of treatment to draw from.
But for women with early breast cancer, the choices aren’t clear at all.
They can try an anti-cancer drug, radiation, lumpectomy or mastectomy. They can try alternative therapies or do nothing at all.
Only an estimated 30 percent of pre-cancers will grow to become invasive. But no tests are available to differentiate between those which will become life-threatening and those which will remain dormant.
That leaves women like Deborah Arekat of Phoenix with lots of questions.
“Take that breast off” was her reaction in November when she was diagnosed with the most common type of early cancer, “ductal carcinoma in situ,” or DCIS. This kind of cancer is confined within the milk ducts and has not yet infected other tissues or organs.
Devastated by the news, Arekat at least felt fortunate that it was caught early. Her mother died two years earlier from the side effects of chemotherapy for lymphoma, and Arekat wanted desperately to avoid chemotherapy, which would be necessary if the cancer invaded other tissues and organs of her body.
“I have children to raise, and I want to see them marry,” she said.
While her strain of breast cancer was characterized as high grade, or very aggressive, it was confined to a single, small area.
Her choices were to have a mastectomy to remove her breast or have just the affected area of her breast removed, a lumpectomy, followed by radiation. In some cases, radiation isn’t done, but that wasn’t a choice for her.
She would also have to decide whether to take the anti-cancer drug tamoxifen, which can have side effects.
In other words, should she sacrifice her breast for an almost assured cure or go for a breast-conserving but more complex treatment?
After getting opinions from two doctors and doing her own research, Arekat decided to have a lumpectomy rather than a mastectomy.
One doctor had strongly recommended a lumpectomy, while another said either decision would be good.
The surgery on Dec. 7 went well, and Arekat was back on her feet in a couple of days.
But her struggle is not over, a fact she was reminded of this month when she visited one of her doctors to talk about taking tamoxifen.
In the waiting room, Arekat was surrounded by people ravaged by advanced cancers. It was the kind of place her mother had gone for chemotherapy.
“It reminded me that I was having a brush with mortality,” she said.
Under a microscope, DCIS is cancer. But some doctors call it “pre-cancer” or “stage zero” cancer. Indeed, the five-year survival rate for “stage zero” cancer is a cheerful almost-100 percent.
But that’s partly because most women diagnosed with this kind of early cancer opt for some kind of aggressive treatment in order to stop it from spreading.
Because surgery is almost a foregone conclusion, there haven’t been extensive studies to indicate what would happen if the cancers were left alone. Small studies suggest that only 30 percent of DCIS will become invasive cancers within 10 years. But as long as breast cancer remains the No. 1 cause of death for American women between ages 40 and 55, most women aren’t willing to wait and see.
“No one wants to gamble with their life at a point when it is 100 percent treatable,” said Jill Herschel, coordinator of the Cancer Resource Center at Phoenix Baptist Hospital and Medical Center. Of the 2,645 Arizona women diagnosed with early cancer between 1995 and 1999, only 202 elected not to have surgery, 1,351 had lumpectomies and 1,092 had mastectomies, according to statistics from the Arizona Department of Health Services.
“It reminds me of when I was in medical school and any woman with an abnormal Pap smear would get a hysterectomy,” said Dr. Susan Love, a UCLA professor and author of Susan Love’s Breast Book, a bestseller on breast health.
Love believes that 70 percent of women with this kind of cancer are being overtreated.
“They are getting the downside of treatment – surgical scars, side effects of surgery, radiation and tamoxifen,” she said. “We are overtreating it, but we don’t have a choice because we don’t know who to treat.”
Love’s recommendation is to choose less invasive surgeries.
Some scientists and health advocates say it would be better if we didn’t detect early cancer at all. They would like to end widespread mammogram screening among younger women.
Scientists in Denmark recently released a study critical of mammograms in women under 50. They contend that doctors have become so much better at treating the more advanced stages of the disease that there is no improvement in mortality by catching the disease earlier.
Breast cancer doctors disagree.
Dr. Belinda Barclay-White explained Lisa Vultaggio’s mammogram to her. The mammogram showed cancer, and Vultaggio had her right breast removed. She now is finishing reconstruction surgery.
“There are so many conflicting studies out there,” said Dr. Belinda Barclay-White of Breastnet, a clinic in Scottsdale that specializes in breast health. She cites a large Swedish study that determined early detection of breast cancer improves survival by 40 percent to 60 percent. “You can take the same information and you can cut it whichever way you want,” she said.
The controversy is really about economics, Barclay-White said.
Over the course of a lifetime, one in eight women will face breast cancer. The lower-cost approach is to do less screening and spend scarce health dollars treating only those women who develop invasive cancers.
“But tell that to a 40-year-old woman who has been diagnosed with early breast cancer based on a mammogram,” Barclay-White said. “If you can pick up something early and your chance of cure is 60 percent higher than if you wait . . . it’s a no-brainer.”
Critics of routine screening also question whether tests are finding deadly cancers earlier or finding and removing cancers which may never be harmful.
“It is like throwing out a fishing net,” said Dr. Clifton Meador of Vanderbilt, who has written about the drawbacks of screening tests. “You get a lot of small fish you’re not looking for.”
For every woman diagnosed with breast cancer, there are four others who have been subjected to call-back tests that proved to be false alarms.
“We are in an awkward stage of testing and knowledge,” Meador said. “We don’t know enough quite yet to be as refined as the public would like us to be. The tests pick up cancers, but also cysts.”
Meanwhile, women are put through costly, uncomfortable and time-consuming tests, Meador said.
“No one has measured the emotional pain,” he said. Meador’s wife, 50, refused to have mammograms while in her 40s, he said. She didn’t want to find anything that would force her to be re-tested every six months.
When most women are diagnosed with breast cancer, they aren’t aware of the controversies or conflicting studies.
Other young women like Deborah Arekat say they are thankful that caught their cancer early. After her experience, she now encourages her friends to get mammograms, even though she had a false alarm and a mammogram misread on two different occasions before her cancer was diagnosed.
Whether the early cancer is high grade or low; how close the infected area is to the nipple; whether there is more than one infected area; whether the woman’s breast is large or small – these are all variables that make each case different.
“At doctors’ meetings we talk about how complicated and diversified DCIS is,” said Dr. Victor Zannis, a Phoenix breast surgeon. No two early cancers are the same, he said.
“We know that it doesn’t follow a simple pattern. There are some cancers that are packing ducts in one quarter of the breast, and then other breasts where there is one small cluster,” he said. “We try to lay out all the information for a woman about her particular case. Ultimately it is her choice about what procedure to do.”
Doctors sometimes recommend that women with small areas of slow-moving early cancers wait six months or so to see if things change. At some point, however, they will probably suggest surgery.
“There may not be symptoms for five to 20 years,” Zannis said. “But then it could suddenly turn and invade. It’s hard to tell a woman to wait. She could have a tiny area where a cell might go nuts and quickly grow out of that duct and become invasive.”
About half of the early breast cancers Barclay-White has diagnosed over the past 20 years are slow or medium grade and half are high grade, which doctors believe are most likely to quickly become invasive.
One thing doctors can say for sure is that women who get treatment will experience fewer invasive cancers later in their lives – even fewer than the female population as a whole.
“It’s not always the doctors who are pushing more aggressive treatment on the patient,” said Jill Herschel, who leads support groups for women with breast cancer.
“Rather than less treatment, women with early stage cancer often want more treatment. They worry when doctors don’t remove lymph nodes; they don’t feel like it is all taken care of.”
When Lisa Vultaggio of Scottsdale was 37, she felt a lump on her left breast. After a mammogram and an ultrasound, she was told that it was not cancerous and would go away on its own.
She was relieved when it did. But 14 months later when she went in for a follow-up mammogram, her other breast had suspicious microcalcifications, which can be indicators of cancer.
Her doctor suggested waiting six months. Even if it was cancer, it probably wouldn’t grow enough to be life threatening in that time, she was told.
But after her previous scare, she didn’t want to wait. She found a new doctor who recommended a biopsy. It was DCIS.
Doctors told her she was a prime candidate for a lumpectomy, followed by six weeks of radiation. They also told her she should consider taking the anti-cancer drug tamoxifen for five years.
But Vultaggio had decided when she had that lump on her left breast that if she ever got breast cancer, she was going to have a mastectomy. She has friends whose cancers have come back, and she feared that if it happened to her, it would be more aggressive and she would need chemotherapy. The single mother didn’t want her 12-year-old daughter to see her sick.
She also didn’t like the radiation and tamoxifen regimens.
“I didn’t want any of that in my body,” she said.
All of her doctors accepted her decision, except the radiation oncologist.
“You are taking a sledgehammer to kill an ant,” she told her.
“That’s OK, the ant will be dead,” Vultaggio remembers replying. “She said that to discourage me, but it made me realize I made the right decision. The ant would be dead.”
When doctors later did a new mammogram, they discovered the cancer had gone into a second area. She felt vindicated.
When 45-year-old Clare Zafaranlou learned she had DCIS in one breast in October, she opted to have both breasts removed. “I didn’t want to go through all of this again,” she said. She had immediate reconstruction done.
Lynn Copple, 39, went with a lumpectomy on the advice of her doctor. She had a second lumpectomy later when doctors found a separate but more advanced cancer.
“My odds were as good going this way, and I could still preserve my breast. It made sense,” she said.
Two years later, Copple’s still cancer-free.
Advances in genetic mapping may take some of the guesswork out of who gets cancer, but probably not much, said Dr. Barbara Pockaj, a breast surgeon at Mayo Clinic.
Only 5 percent of breast cancer cases are people who have it in their family history.
“It’s not all genetics,” she said. “We need to know what causes breast cancer in the first place. Is it lifestyle or the environment?” Love is promoting a less invasive test – a kind of Pap smear for the breast to indicate whether there is a likelihood of cancer. She says the goal is to try to detect cells that are “thinking about” becoming cancer someday – not cells that already are cancerous. Women with those cells could then be treated with an anti-cancer drug or other therapies.
In fact, more than a hundred new treatments for breast cancer are being researched. The dream, of course, is an environment less likely to cause illnesses, and a pill or other simple treatment to kill cancer cells when they are first found.
It might some day be possible to determine which strains of cancer will remain dormant, saving many women the pain, expense and emotional trauma of surgery, radiation and drugs. But until then, nearly everyone gets aggressive treatment.
If there is a silver lining to the entire breast cancer dilemma, Lisa Vultaggio says it’s that breast reconstruction options are so good.
“Thank God for the plastic surgeons,” she said.
Six months into her DCIS journey, Vultaggio is finishing breast reconstruction. She went from an A to a C cup.
“The reconstruction helped me keep it together,” she said.
~ Postlog ~
Dr. Kelley recommends Thermography, as a safe, more reliable and earlier detection mechanism for breast cancer. Although not fully embraced by the medical community (it’ll cost them ‘too much’ to convert), it’s history so far appears to be far advanced from the currently accepted mammography. (Ed.)
Written by Maureen West for the Arizona Republic, and published on DrKelley.info, February 17, 2002. Embedded links may no longer be active (Ed. 12.28.10)
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