Friday, October 31, 2008

Overestimating Breast Cancer Risk

Whenever I hear that a woman has a 1 in 8 risk of being diagnosed with breast cancer, I cringe. First, because this is a scary statistic. And second, because it is misleading.

It does not mean that 1 in 8 women in the United States will actually get breast cancer. It is an estimation that a woman has a 1 in 8 (12.3%) chance of getting breast cancer during her entire lifetime -- if she lives to the age of 85. Of course, some women die from other causes before they reach 85. The leading cause of death in women is heart disease and the leading cause of cancer death in women is lung cancer, not breast cancer.

The 12.3% figure comes from adding up the average risk women face during each decade of their lives. Some women face a higher or lower risk than average, but according to the American Cancer Society, a woman’s chance of being diagnosed with breast cancer is:

Age
20-29...........0.05%..........1 in 1,837
30-39...........0.43%.............1 in 234
40-49...........1.43%...............1 in 70
50-59...........2.51%...............1 in 40
60-69...........3.51%...............1 in 28
70-79............3.88%..............1 in 26
----------------------------------------------
Lifetime......12.28%.................1 in 8

The lifetime risk is roughly the sum of the risk in each decade. (The math whizzes among us may have noticed that the percentages for each decade do not add up to 12.28%, but to 11.81%. These numbers were taken directly from the American Cancer Society’s Breast Cancer Facts and Figures 2007-2008, and do not include risk to age 85.) What is clear – though a bit mysterious mathematically – is that at no time during her life does a woman face a risk of getting breast cancer as high as 1 in 8. No one should be mislead to think that if she’s sitting in a room with 8 women, one of them is destined to get breast cancer.

I am not among the mathematically inclined, but I do have to question whether it’s valid to add up the risk during different periods to get a picture of overall risk. Suppose we were trying to predict the weather instead of the likelihood of getting breast cancer. If the forecast next week was for a 10% chance of rain each day, you’d expect pleasant weather. But if you added up the risk for each day and estimated that there was a 70% chance of rain next week, you’d be sure to take your umbrella.

Carrying around an umbrella is one thing, but when women are made unduly anxious about breast cancer, they may opt for overly aggressive treatment – prophylactic mastectomy -- when they are diagnosed with precancerous conditions, ductal carcinoma in situ (DCIS), or the breast cancer gene. Hearing you’re high risk for breast cancer becomes even more frightening when you have an inaccurate perception of what average risk is.

Wednesday, October 22, 2008

Confusion About Lobular Carcinoma In Situ?

Almost every day, someone comes to this blog because they have done a Google search on the terms “LCIS” and “prophylactic mastectomy.” My breast surgeon was surprised that women needed to look this up.

Ideas have changed in the 20 years since she gave me the diagnosis of lobular carcinoma in situ (LCIS) and advised me to have regular check-ups. She added that I would hear about another way to treat LCIS, but left no doubt that her recommendation was careful follow-up. She was firm enough that when I learned the alternative was double mastectomy, I gave it less consideration than I might otherwise have.

At the time, the medical community was evenly divided on whether to recommend careful follow-up for women with LCIS or a bilateral prophylactic mastectomy. (A single mastectomy is not an option because LCIS indicates a risk for breast cancer in both breasts.) These days it would be unusual for doctors to suggest a double mastectomy, but something else may be recommended. Tamoxifen is sometimes used for prevention in women who are high risk for breast cancer.

So why, then, are people Googling “LCIS” and “prophylactic mastectomy?”

I suspect women are told there are options without being told as clearly as I was that one of the choices is by far the most reasonable. When we hear there are various ways to treat a disease, we might assume the most drastic must be the best. In this case it is not.

LCIS is not cancer, and it is not even considered a true precancer because if invasive cancer develops, it does not necessarily arise from the LCIS cells. LCIS is a warning sign that a woman is at risk for breast cancer. It sounds scarier than it is because it is called a carcinoma, or cancer. It got that label when it was first identified years ago under a microscope because the LCIS cells looked like cancer cells. The fact that there were important differences in their biological activity was learned later on.

The danger with invasive cancer is that it can spread outside the breast to other organs. LCIS does not have that capacity and remains in the breast. The phrase “in situ” is Latin for in place – and that is where LCIS stays.

There are some exceptions to favoring careful surveillance for women diagnosed with LCIS. Those who have a strong family history of breast cancer, those who have a defective form of the breast cancer gene, and those who have a type of LCIS called pleomorphic LCIS might take this warning more seriously and act more aggressively.

When the choice is not clear, however, it is wise to go for a second opinion. The best place would be one of the National Cancer Institute approved cancer centers. If there is not one nearby, look for a breast specialist by checking with a large hospital in your area. Friends, family, or your internist or gynecologist may be able to recommend a breast surgeon.

It might also be advisable to get a second opinion for the pathology report on tissue removed during biopsy. My doctor does this because there are sometimes difficulties identifying LCIS on pathology slides.

Saturday, October 11, 2008

Overtreating Breast Cancer

The following press release from the University of Michigan on Medical News Today describes the growing trend of women choosing to have both breasts removed when a single mastectomy is all that is needed:
When Treatment Goes Too Far
Recent research has shown that more women are choosing to have their healthy breast removed after being diagnosed with breast cancer. The number of double mastectomies from
1998 to 2003 more than doubled, according to one study.

But this additional surgery has little impact on long-term survival or whether the cancer will recur, says Lisa Newman, M.D., M.P.H., director of the Breast Care Clinic at the U-M Comprehensive Cancer Center.
"Women are choosing to have more radical surgery than is necessary because of fear that their cancer will come back. Bilateral (double) mastectomy will decrease the possible need for future breast surgery, but it has little or no impact on the overall survival of a woman who has already been diagnosed with a single breast cancer," Newman says.
For women who test positive for the BRCA1 or BRCA2 gene mutations such as actress Christina
Applegate opting for a double mastectomy may make sense. The risk of developing
breast cancer in the other breast is 30 percent. But women without the BRCA mutation do not face a higher risk of breast cancer in the unaffected breast.

"Women have the opportunity to choose the treatment that feels right for them. But over-treating breast cancer by removing a healthy breast is unnecessary," Newman says.

Women sometimes choose to have both breasts removed when a single mastectomy is recommended as treatment for breast cancer or ductal carcinoma in situ (DCIS). Some do it because they don't want to face the possibility of the cancer returning, even though the risk of recurrence is low for invasive cancer and unlikely for DCIS. There is no survival advantage for women who choose to have a second healthy breast removed.

Others may opt for prophylactic mastectomy of their healthy breast because their cosmetic surgeon suggests that the appearance of the breasts will be better if both are removed and reconstructed at the same time. It would seem that loosing the sensation of touch in a healthy breast would be too high a price to pay for a matching set.

Medical treatment is not the only avenue for reducing the likelihood that breast cancer will recur. Lifestyle choices can reduce breast cancer risk and recurrence.

Friday, October 10, 2008

New Genetic Test for Breast Cancer Risk

The deCODE genetic test for breast cancer risk has hit the market, and here are some reasons to save yourself $1625.
  1. No gene can predict that a woman will get breast cancer. Even the better understood breast cancer susceptibility genes, BRCA-1 and BRCA-2, do not indicate that a woman will get breast cancer -- only that her risk is high. The interplay of genes, lifestyle factors, and exposure to environmental hazards determines whether or not a woman develops breast cancer.

  2. Scientists question the validity of using this test to predict the risk of getting breast cancer. (The opinions of some noted breast cancer specialists can be found in an article in the Washington Post.) This test may indicate that you have certain genes associated with breast cancer risk, but no one knows what the implications are for having any one of the many combinations of these and other genes.

  3. There are ways to reduce breast cancer risk, but doctors do not know which option might work for any particular woman. Medications like Tamoxifen or Evista might be recommended, but they have side effects that a woman would want to avoid unless her risk was extremely high. This test would not be necessary to know that, as family history, the presence of a precancerous condition, or diagnosis with a BRCA gene mutation would indicate high risk.

  4. Positive results may cause undue alarm and anxiety. It is frightening to hear you're high risk for breast cancer. Given that the reliability of this test for predicting breast cancer risk is questionable, and that doctors don't really know what to recommend to reduce risk, it seems unwise to subject yourself to hearing that you might be high risk.

  5. Negative results could lull you into a false sense of security. These genes are not the only factors that increase breast cancer risk.

Women do not need to know their genetic make-up to understand that they should have regular screening and check-ups. And every woman should strive to have a healthy lifestyle to reduce her risk for breast cancer -- and for heart disease, diabetes, Alzheimer's, and other cancers at the same time.

Wednesday, October 8, 2008

Carcinoma in situ

A diagnosis of lobular carcinoma in situ (LCIS) or ductal carcinoma in situ (DCIS) is not as scary as it sounds. The Latin term "in situ" means in place. LCIS and DCIS can not spread outside the breast unless they undergo a transformation to become invasive cancer. That capacity for spreading, or metastasizing, is what makes invasive breast cancer dangerous.

The two types of carcinoma in situ are similar in that there are abnormal cells growing within the breast, but the similarities end there. LCIS develops in structures in the breast called lobules, which are the milk-producing glands, while DCIS develops in the ducts that carry milk from these glands.

LCIS serves as a warning sign that a woman is at risk for developing breast cancer, while DCIS is considered a very early stage of breast cancer. DCIS might more accurately be called a precancer, though, because it has no capacity to metastasize as invasive cancer does unless it first undergoes a change. It is thought that DCIS, if left untreated, would not become invasive in approximately half the women who have it, but its presence is taken seriously enough for it to be treated as early cancer.

Depending on how extensive the DCIS is and what its characteristics are, it may be removed surgically with a lumpectomy or a mastectomy, and it may require radiation. The risk of recurrence is very low.

The usual treatment for LCIS is not really treatment, but careful surveillance. Women get regular breast exams and a yearly mammogram. Thirty or forty years ago, LCIS was considered cancer, and women would have a mastectomy after it was diagnosed. It was later determined that LCIS was simply a warning sign that breast cancer could develop in either breast. Both breasts have to be removed for risk to be reduced, but prophylactic mastectomy for LCIS is considered "an overly aggressive approach" according to the National Cancer Institute.

Ideas about carcinoma in situ have changed over the years and are still changing. There is some uncertainty about the implications of having it for any particular woman. No one likes to be told they are high risk for breast cancer or that they have an early stage of the disease, but it is important to understand that there is a distinction between carcinoma in situ and invasive cancer so as not to take more drastic measures than necessary.

Having a bilateral prophylactic mastectomy for either LCIS or DCIS is more than is needed unless there are additional risk factors like having a faulty BRCA gene or a very strong family history of breast cancer.

So why are women diagnosed with LCIS or DCIS told that prophylactic mastectomy is a possibility? Doctors are obligated to describe all options for treating a disease. With carcinoma in situ, as with some others, it is important to understand that the most drastic treatment is not necessarily the best.

Wednesday, October 1, 2008

Awareness Reality Check

Awareness of breast cancer, as I mentioned in an earlier post, is a double-edged sword. There is too much awareness when it raises fears about breast cancer to the point where women overestimate their risk. But a certain level of awareness is necessary for women to understand how they might protect themselves.

An interview with Nancy Brinker, founder of the Susan G. Komen Foundation and the Race for the Cure, on the October 1st Oprah show reminded me of a different era when there was too little awareness. When Brinker's sister was diagnosed in the late 70's, no one talked openly about breast cancer, there were no support groups for women with the disease, and little information was available. Brinker says that if they'd known more about breast cancer, her sister might have considered going outside of their small town to get a second opinion at a large cancer center instead of putting her faith in the local doctors. She believes her sister's outcome might have been different if she'd been treated by knowledgeable specialists from the beginning.

Women need to be aware that they should get a second opinion when they're uncertain about the first one. Doctors may have different ideas about what follow-up a woman with a suspicious lump should have or which treatment is best for any particular breast cancer patient.

There is a list of cancer centers on the National Cancer Institute web site as well as a wealth of information. If none of these cancer centers are close enough for even a one-time consultation, it may be helpful to speak to doctors or call local hospitals to find a breast surgeon or an oncologist who is known to treat a lot of patients with breast cancer.

We should be aware that early detection is important because treating breast cancer at its earliest stages is simplest and most effective. Mammograms are not pleasant, but the small amount of discomfort is well worth the peace of mind they bring. We also need to get breast exams as part of our regular check-ups, and check our own breasts occasionally in between.

We should keep in mind that our risk for breast cancer is probably lower than we think, and that if further tests are necessary after having a mammogram, they're most likely to come out negative. Call-backs after a mammogram are common simply for getting clearer views of dense areas in the breast. And 80% of breast biopsies end up being negative.

We should also be aware that it is better to contribute to breast cancer charities directly than to buy pink promotional items. An excellent and informative article in the Minneapolis Star Tribune -- Which pink products really help fight breast cancer? -- addresses the issue of companies using Breast Cancer Awareness Month as a marketing tool. Of course, some companies contribute significant amounts to breast cancer charities, but others do not. The article links to a Guide to buying pink that offers suggestions on what to look for in a pink product to be sure the manufacturer is really using profits to support the fight against breast cancer.

Above all, we need to be aware that one of the best ways to fight this disease is to protect ourselves by using what scientists know about reducing breast cancer risk and recurrence through lifestyle.