Showing posts with label prophylactic mastectomy. Show all posts
Showing posts with label prophylactic mastectomy. Show all posts

Thursday, January 8, 2009

The Difference Between Ductal Carcinoma In Situ (DCIS) and Invasive Breast Cancer

Ann Romney recently reported that she was being treated for ductal carcinoma in situ (DCIS). The headlines read that she was being treated for breast cancer, but Mrs. Romney was very clear in her statement that DCIS is technically a precancer because it is not invasive.
DCIS is often referred to as an early stage of breast cancer, but there is an important distinction. DCIS differs from invasive cancer in that it stays in the breast ducts. It is the capacity to spread, or metastasize, that makes invasive breast cancer dangerous. The concern with DCIS – a noninvasive cancer — is that it can transform to become invasive breast cancer.
Scientists believe that DCIS would not always progress to breast cancer. Once detected, though, it is removed surgically to eliminate the possibility that it would become cancer because no one can predict which women would have it transform and which would not.
DCIS is a serious condition that requires treatment, but many women face greater anxiety than they should because it is referred to as an early stage of breast cancer. The implication is that it is the first of an inevitable series of stages. Instead, it is a precancerous lesion that could undergo a transformation to become invasive. The distinction is important, but it is often lost.
Depending on how extensive the DCIS is and what its characteristics are, it may be removed with a lumpectomy or a mastectomy and may require radiation. The risk of recurrence is very low.
There are sometimes stories in the news about women with DCIS choosing to have both breasts removed to prevent the possibility of getting breast cancer. Having a bilateral prophylactic mastectomy for DCIS is more than is needed, though it might be considered when a woman has additional risk factors like a faulty BRCA gene or a very strong family history of breast cancer.
Mrs. Romney’s health care providers deserve credit for being clear about what her diagnosis meant. Too many women who are diagnosed with DCIS do not realize that it has important differences from invasive breast cancer. With proper treatment and attention to lifestyle factors that reduce breast cancer risk, future problems are unlikely.

Sunday, November 16, 2008

Understanding Breast Cancer Risk

All women are at risk for breast cancer -- and most of us think our risk is higher than it actually is.

The commonly cited statistic – that women have a 1 in 8 lifetime risk of breast cancer – is a bit misleading because 1 in 8 women in the United States do not actually get breast cancer. The 1 in 8 number is an estimate of lifetime risk. A woman with average risk has a 1 in 8 chance of getting breast cancer sometime during her life if she lives to be 90. Some women are less likely to get breast cancer, and some have a greater risk. Some will not live to be 90.

A more meaningful way to look at risk is the chance of getting breast cancer during each decade of life. A woman in her twenties has a 1 in 1,837 (0.05%) risk of getting breast cancer, and her risk increases as she ages to a maximum in her seventies of 1 in 26 (3.88%). If you add up the percentages for each decade, you get 13% lifetime risk (1 in 8). During no ten-year period during her lifetime, though, does a woman face a risk of getting breast cancer as high as 1 in 8.

Of course, some women are at greater risk of developing breast cancer. And they, too, overestimate their risk for getting this disease.

Women with a faulty breast cancer gene are said to have “up to” an 85% lifetime risk of getting breast cancer, but according to the National Cancer Institute, the risk ranges from 36% to 87%. As with women who have an average risk, their chance of getting breast cancer increases as they age. (The exception to this is women with close relatives who got breast cancer when they were young.)

Others with a higher than average risk for breast cancer are women diagnosed with precancerous conditions like lobular carcinoma in situ or atypical hyperplasia. Women who have had breast cancer or ductal carcinoma in situ, a noninvasive cancer, are also at increased risk.
It should be noted that many women who are high risk will never get breast cancer. No one knows why they don’t or why some women get breast cancer even though they have no risk factors. The interplay of genetic make-up, age, reproductive history, environmental exposures, and lifestyle determines whether or not we develop breast cancer.

But those of us who are high risk can’t help feeling we’re destined to get breast cancer. Some choose overly aggressive treatment because they can’t live with the possibility that they might get this disease. They get bilateral mastectomies, reducing their risk by 90%. In some cases, this surgery is more drastic treatment than is necessary, and it does not guarantee they will never get breast cancer.

Women do it to ease their fears. Being high risk for breast cancer is more frightening than it should be because of misperceptions about the level of risk for the average woman.

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.

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.

Saturday, September 27, 2008

Too Much Breast Cancer Awareness?

October is Breast Cancer Awareness month, and we can brace ourselves for a deluge of pink. There will be countless promotional products from companies trying to demonstrate their commitment to fighting breast cancer. Some will profit from their association with the cause and end up contributing a miniscule amount to breast cancer research.
We can also expect a barrage of articles about how we're making progress understanding and treating this disease, but women today will get many of the same treatments their mothers did. And we still have no idea what causes this disease.
The unfortunate result of all this awareness is a pervasive and unrealistic fear of breast cancer. Heart disease is the leading killer of women -- and lung cancer is the leading cause of death from cancer in women. Yet, most women believe their greatest threat is breast cancer.
The average woman faces a 1 in 8 risk of getting breast cancer at some point during her lifetime. This number sounds alarming, but it is important to note that risk increases with age, and at any particular age, a woman's risk of getting breast cancer is actually lower than 1 in 8. According to the American Cancer Society, the risk of getting breast cancer for a woman between the ages of 40 and 50 is 1 in 70 while the risk for a woman between 60 and 70 is 1 in 28. The risk for a woman in her 20's is 1 in 1,837, and though breast cancer is extremely rare in anyone under 20, concerns about it are not.
Breast cancer specialist and author Marisa Weiss recently published a book about breast cancer for teens and young girls because she sees growing fears about the disease in this age group. It's bad enough that grown women overestimate their risk for getting breast cancer, but when there is so much focus on this disease that young girls start worrying about breast cancer, it is clear there's too much awareness.
One effect of this misperception about breast cancer risk is that women are choosing mastectomy over less drastic treatment even when it is not known to provide any advantage for survival. Women with a gene that increases susceptibility to breast cancer are choosing to have both breasts removed even though there is uncertainty as to who would benefit from it. The number of women being diagnosed with these genes is increasing because the company that does genetic testing has started the questionable practice of advertising directly to consumers. Again, too much awareness.
Some women with early stage breast cancer are opting to have both breasts removed instead of facing a small risk that they will have a recurrence. There is no known survival advantage for those who have both breasts removed. By the time a cancer is diagnosed, it may have already started spreading to distant organs, and it is these metastases that lead to cancer deaths. But most women who are diagnosed at an early stage do not have the cancer spread outside the breast and will never have a recurrence.
It is not enough to wear pink ribbons, buy pink products, and spend a month becoming more aware of breast cancer -- and more fearful. We need to push Congress to support cancer research instead of hindering it as they have this year. They reduced the budget for the National Cancer Institute and blocked legislation to fund research on environmental causes of breast cancer. We also need to press for more research on breast cancer prevention instead of having so much of the research budget devoted to searching for that elusive cure.

Prophylactic Mastectomy: A Cautionary Tale

Hearing you're high risk for breast cancer is frightening. There is uncertainty as to what you should do about it -- and you desperately want to do something. But taking the most drastic step of having both breasts removed is not the right choice for many women. It wasn't for me.
I had no family history of breast cancer and would never have thought I was at risk until a routine mammogram showed a suspicious spot. A biopsy revealed that I had a precancerous condition that put me at high risk for getting breast cancer.
I thought my days were numbered. Adding to my concern was confusion about what this condition was and how it should be treated. Lobular carcinoma in situ (LCIS) is a cancer "in place" that has no potential for spreading outside the breast unless it undergoes a transformation. It is classified as a "Stage 0" breast cancer but is not a true cancer because it lacks the potential to metastasize, or spread.
Now there is more certainty about what women with LCIS should do, but when I was diagnosed almost twenty years ago, the medical community was evenly divided on what to recommend. Around half the doctors surveyed for a study at the time said they would carefully monitor women with LCIS with regular check-ups and mammograms. The other half said they would advise LCIS patients to have both breasts removed.
A double mastectomy for a precancerous condition seemed extreme -- since the treatment for a more threatening invasive cancer would have been a lumpectomy or a single mastectomy. LCIS indicates a potential for developing breast cancer in either breast, so to fully reduce the likelihood of breast cancer, both breasts have to be removed. But even with a double mastectomy, there is no guarantee you won't get breast cancer.
I considered the bilateral mastectomy, but followed the recommendation of my wise and progressive breast surgeon to have careful follow-up. Now most doctors favor this approach, and the women most likely to be grappling with the issue of having prophylactic bilateral mastectomy are those who have been diagnosed with a gene that causes susceptibility to breast cancer. Some are taking the initiative in deciding to have this surgery -- and in many cases, they are ignoring the recommendation of their doctors.
And why shouldn't they, you might ask. They are told their risk for getting breast cancer can be as high as 85%, and they are living with the uncertainty that breast cancer could strike at any time. Many have watched mothers or sisters struggle through surgery, radiation, and chemotherapy. They understandably want no part of that.
But there are reasons they should not rush into having this surgery.
  • Some women with the gene will never get breast cancer. The risk of a woman with a susceptibility gene getting breast cancer at some point during her lifetime is 36% to 85%, as compared to a risk of 12.7% in the general population. The risk for women with the gene is often described as being "up to" 85%, but that number represents the worst case scenario.
  • These estimates of risk are not etched in stone. They are likely to change as scientists learn more about how these genes lead to breast cancer, just as ideas about LCIS changed. One group has already reported that the risk may be lower than currently believed.
  • Scientists are trying to learn why some women with the gene do not get breast cancer, and at some point, they may be able to predict who is at greatest risk and should consider prophylactic mastectomy.
  • Women who get bilateral mastectomy can still get breast cancer. The surgery reduces risk by 90%, but does not eliminate it. Breast tissue is spread out in the chest, and some remains after mastectomy.
  • There are less drastic ways to reduce breast cancer risk. Tamoxifen and Evista reduce breast cancer risk by around 50%. Some women can reduce their risk with a healthy lifestyle.
  • The risk of getting breast cancer increases with age, even in women with a susceptibility gene unless they have close relatives who got breast cancer when young. For women whose mother or sister didn't get breast cancer until close to menopause, though, having breasts removed in their 30's -- as some women are doing -- may be premature.
  • No surgery is free of risk, and further surgery may be necessary. Women having mastectomies can develop infections or have bad reactions to drugs, just as with any surgery. Implants need to be replaced periodically.

Of course, bilateral mastectomy may be the wisest choice for some women who have the gene, but it is too drastic a step for many others.