When it comes to deciding on treatment options with breast cancer (or any other disease) it can get hugely confusing to understand the various statistics in favor of one treatment or another. Steve Kass, an old high-school buddy who now happens to be a professor of mathematics has some thoughtful observations about looking at survival rates and death rates when it comes to breast cancer:

The five-year death rate after mastectomy was 11.5% for women who had both breasts removed. It was 16.3% for those who only had the cancerous breast removed. Adding a contralateral prophylactic mastectomy to the original surgery therefore reduced the five-year death rate from 16.3% to 11.5%. Almost a third fewer mastectomy patients died within 5 years when they had chosen to remove the second (healthy) breast, compared to mastectomy patients who had not chosen to remove the second breast. The bilateral mastectomy decreased the 5-year death rate by 29.4%.

This strikes me as a significant benefit. Suppose I have breast cancer and need a mastectomy. I can choose a single mastectomy and have a one-in-6 chance of dying in five years, or I can choose a double mastectomy and have a one-in-9 chance of dying in five years. One-in-9 sounds quite a bit better to me. If 100,000 women with unilateral cancer need mastectomies, performing 100,000 double mastectomies instead of 100,000 unilateral mastectomies will reduce the number of deaths in the first five years from 16,300 to 11,500. About 4,800 fewer women will die within five years.

The reporting of this study takes a very different viewpoint. It compares the survival rate, not the death rate, and notes that the bilateral prophylactic mastectomy increases the survival rate from 83.7% to 88.5%, “a difference of less than 5%.” Five percent sounds like a small number, but 5,000 lives saved sounds like a large number.

Both statements (lowers by 30%; benefits only 5%) are the same. Only the intent to communicate is different.

The full post is well worth the read.  Being a strong believer in having as much information as possible when facing difficult decisions, thought this was worth passing along.  Also of note, this New York Times blog piece regarding women choosing bilateral mastectomies even when it does not improve their chances for survival.

Before I take off to spend next week with family, a round-up of some worthwhile reading regarding women’s health care:

The Opportunity Agenda has an outstanding guide to health care within the human rights context here.

Echidne of the Snakes has a thoughtful piece about mammogram screening here.

Chemrox has a look at the new mammogram guidelines written by a woman who was diagnosed with breast cancer at a young age.

Gail Collins’ very thoughtful The Breast Brouhaha.

And Our Bodies Our Blog has a really thorough review of what the new mammogram guidelines really mean.

This is a HUGE change in policy and as noted below is in line with international recommendations.  I have written numerous times questioning the advice to have a mammogram every year after age 40 for all of the reasons mentioned in this article and also because radiation even in small amounts always poses a risk, particularly since not only does it increase your risk of getting cancer but also because that risk is cumulative, so no matter how little you are  exposed to with one mammogram, it is added to your existing exposure load.  Please read this very important article in its entirety.

Excerpted from a  report by the AP:

Most women don’t need a mammogram in their 40s and should get one every two years starting at 50, a government task force said Monday. It’s a major reversal that conflicts with the American Cancer Society’s long-standing position.

Also, the task force said breast self-exams do no good and women shouldn’t be taught to do them.

For most of the past two decades, the cancer society has been recommending annual mammograms beginning at 40.

But the government panel of doctors and scientists concluded that getting screened for breast cancer so early and so often leads to too many false alarms and unneeded biopsies without substantially improving women’s odds of survival.

The new guidelines are as follows:

• Most women in their 40s should not routinely get mammograms.
• Women 50 to 74 should get a mammogram every other year until they turn 75, after which the risks and benefits are unknown. (The task force’s previous guidelines had no upper limit and called for exams every year or two.)
• The value of breast exams by doctors is unknown. And breast self-exams are of no value.

As I mentioned above,

International guidelines also call for screening to start at age 50; the World Health Organization recommends the test every two years, Britain says every three years.

This is a significant step to more rational breast care and hopefully a shift away from the profitable over-treatment of this disease at the expense of looking for the causes.

Addenda:  Breast Cancer Action has an excellent analysis of the changes and does a thoughtful and thorough job of addressing some very legitimate and understandable concerns:

Some people will be upset because their breast cancer was found on a mammogram that would not have happened under the new guidelines. Some people will be confused because they don’t understand what the downsides could possibly be to the early detection of breast cancer.

One thing to keep in mind is that mammograms are a medical intervention, and, like all medical interventions, they have benefits and risks. The benefits have to do with finding some cancers early enough to effectively treat them so that fewer women die of breast cancer. The risks are these:

• False negative results (mammogram reads as clear, but there is breast cancer present)
• False positive results (mammogram shows a problem, but biopsy reveals that the problem is not cancer). False positive results result in unnecessary biopsies, increased anxiety and stress, and physical scarring
• Cumulative exposure to radiation. (Radiation is one of the few known causes of breast cancer. All radiation exposures accumulate in the body. Our bodies do not eliminate these exposures.
• Diagnosis and treatment of cancers that are not life threatening at the time of diagnosis and will never become life threatening if untreated.

What is not well understood is that “early detection” doesn’t really mean what we’ve been lead to believe, which is that finding breast cancer early is the key to survival. It’s not that simple.

After my post last week regarding the mixed data on the value of mammograms, I got a slew of mail the gist of most being, yes but what should I do? The only answer I can give is that you have to decide for yourself what makes the most sense, no easy thing when things aren’t clear cut combined with it being difficult to trust the information you get.  Our Bodies Our Selves has an excellent summary of the history of this issue which is informative and I hope useful.

For me, even though I’ve never had to face this disease myself, I find that I am extraordinarily fearful of it, and one of the things that I find empowering is to work on reclaiming the frame in which we talk about breast cancer by refocusing the discussion on cause rather than cure.  Clearly the current approach is less than satisfactory in terms of how patients are treated and what we are told about it.  Which leads me to highly recommending No Family History, which,

turns the debate about breast cancer upside down by proposing before solutions about prevention, rather searching only for a cure.

There are a lot of unknowns when it comes to breast cancer, and we need to ask some hard questions about what we ‘know’ so far and insist that cause be the starting point for treating this most difficult disease.

According to the New York Times, The American Cancer Society is planning to restate its claims about the benefits of early cancer detection.  That these claims are questionable is not new information, in fact I wrote about it in 2005 (see below for excerpt) and again last year.  What is new is that we will no longer be told that mammograms absolutely save lives because the truth is a lot more complicated than that.  As the NYT reports,

While the limits of cancer screening have long been known in the prevention community, the debate is new and confusing to many patients who have been told repeatedly to undergo screening.

Indeed it is, but while I am profoundly pleased that the ACS is finally acknowledging this, what is disturbing is that it has taken so long for them to do this because as the NYT notes, this issue isn’t new.

As for individuals trying to decide what they should do regarding their own health, the first thing is make sure you understand what is and isn’t known about early detection.  The NYT has a  second piece on the subject here which you should also read.  I’m sure others will weigh in on this in the coming days as well.

But lets go back to the issue of why it has taken so long for this change of policy which brings me to the piece that  I wrote in 2005, The Booby Trap: Does Breast Cancer Awareness Save Lives? A Call to Re-think the Pink. In that piece I pointed out that,

ACS and Komen are both big supporters of annual mammography for women over the age of 40. Over and over, both organizations tout early detection as a lifesaver. They both also receive substantial funding from makers of mammography equipment such as GE and DuPont.

Unfortunately, the truth about mammography and early detection is not so cut and dry. Mammograms may detect cancer earlier (although the majority of women detect their own cancers) but they do not prevent cancer or protect women from cancer and early detection does not necessarily translate into longer survival.

Many women whose cancer is detected by mammograms have slow-growing cancers that will never be life threatening while others are very aggressive and would be lethal no matter when they are detected. Early detection does not appear to impact the life expectancy of either of these groups of women. In addition, because breast tissue in pre-menopausal women tends to be denser, mammograms may miss suspicious masses. The breast tissue of younger women is also more susceptible to damage from radiation.

It is interesting to note that no nation other than the U.S. routinely screens pre-menopausal women by mammography. According to activist Jennifer Drew, in England the practice is for “women aged between 50 and 64 who are registered with a General Practitioner (to) receive a letter inviting them to attend a Breast Screening scan. The age is being raised to 70 years from 2004. Women between these ages can have free mammograms every 3 years. The Government here in the UK believes once every 3 years is sufficient based on medical research.” In contrast with the United States, only one in nine women are stricken with breast cancer in the UK, a statistic also true in Canada. Routine screening guidelines for Canadian women are to be screened every two years after the age of 40. Only one in eleven women in Australia are stricken with breast cancer and women there are advised to get mammograms every two years between the ages of 50-69.

What is perhaps the most important to understand is that survival rates are counted from when a woman is diagnosed. So if a woman is diagnosed in 2000 and lives for 15 years, this is no different than if she was diagnosed in 2005 and lived for 10 years. She would still die in 2015. In other words, a woman may live longer past a diagnosis that occurs earlier, but not necessarily longer overall.

Now if there is anything we’ve learned lately, it is that  women’s bodies are a healthcare commodity.  The U.S. has the highest c-section rate in the world, but at the same time we deny a woman who has had a c-section health insurance.  Women are routinely charged more for health insurance if they can get it, but they can’t if they’ve been raped and take anti-virals to guard against HIV or if they’ve been a victim of domestic violence.  In the case of breast cancer, some of the same companies that sell chemicals to cure this disease also sell chemicals that cause it.  In this case, it has been known that mammograms were being misleadingly portrayed but GE, Which makes mammography equipment also owns NBC News, and it would not be in their best interests to publicize this information because while it might be good for our health to know this, it would not be good for their bottom line.  The company has also provided support to both ACS and Komen.  I’m not saying these vested interests were a determining factor in ACS’s policy, but they need to be considered.

Like any situation where there aren’t definitive answers, it is hard to make decisions and there aren’t necessarily right or wrong ones.  But is wrong is that it has taken so long for this change to be made because whatever choices we make, we have the human right to honest and accurate information about the medical tests and treatments that are recommended to us without having to worry about corporate vested interests trumping our lives.