The Angelina Effect: A Few More Thoughts

Only a short time after Angelina Jolie’s bombshell op-ed in the New York Times appeared, she lost her aunt to breast cancer at age 61. Her mother died from ovarian cancer at age 57. All three women in Angelina Jolie’s family have a defective BRCA1 gene, just like three of the women in my family. We know her pain.

In the comments, interviews and editorials since Ms. Jolie announced her choice to undergo what my docs simply call “the BRCA surgeries” there have been many who do not agree that lopping off healthy body parts to reduce cancer risk is a good thing. Of course it isn’t. It is an unfortunate reality that preventative surgery is the best of the limited weapons at the disposal of high risk patients. What really sucks is that all the choices are awful.

As I approach the fifteen year mark as a breast cancer survivor, I am profoundly grateful just to be here to complain about these issues. My relative with ovarian cancer has put up one hell of a fight for the last five years. I doubt she has five more. Many of the experts I have heard in the Angelina uproar say that those BRCA positive patients who witness close relatives suffer with cancer are more likely to choose prophylactic measures. No shit. Cancer is brutal and very, very ugly. No one likes to talk about that. Think losing your breasts is bad? Try the monster that is Stage IV breast cancer or advanced ovarian cancer on for size.

That is all for today’s rant.

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My Dad as a young man. He died of leukemia in 2004.

BRCA Gene Defects and Breast Cancer: Doing the Math

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“You cannot come home because the math is hard.”

This is what my Mom said to me in the first grade when I wanted to leave school early one day. Math was giving me a bellyache. Today, a different kind of number problem troubles my little gray cells. Statistics. To be specific, breast cancer statistics.

The American Cancer Society’s 2012 estimates for the number of predicted cases of breast cancer in the United States for the year that just ended are as follows:

  • About 226,870 new cases of invasive breast cancer will be diagnosed in women.
  • About 63,300 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
  • About 39,510 women will die from breast cancer

Hereditary breast cancer represents only 5% to 10% of new cancers diagnosed each year. When I get out my calculator (yes, I have to) and do the math this means 290,170 American women will have either been given a diagnosis of DCIS or invasive cancer and up to 29,170 of them will have that cancer as the result of faulty bits in their DNA. There are many genetic mutations that can elevate breast cancer risk, but the most common ones are the BRCA1 and BRCA2 mutations.

These are just the numbers for the ladies, mind you. Don’t forget men get breast cancer too. And do not even get me started on the ovarian cancer cases caused by BRCA defects. Or other cancers that occur at higher rates in BRCA-positive folks. The math will overwhelm my pea brain.

I have been thinking about those 29,170 women who are in some stage of grappling with a new diagnosis of hereditary breast cancer in the past year. The thing that bugs me is that only a portion of them know their cancer is caused by a gene defect. Thousands of women will make important decisions about treatment and follow-up without the knowledge needed to make informed choices.

Why?

The BRCA (BReast CAncer) genes we call BRCA1 and BRCA2 were discovered fewer than twenty years ago. Testing for the full sequence of possible defects is expensive, limiting access to the test for some. There are other barriers that include lack of education and information on the part of patients, physicians and insurance companies.

I began writing about my experiences as a BRCA1 breast cancer survivor in 2012 as I went through numerous surgeries to reduce my risk for more cancer. Now that I am in the so-called “all done club,” at least as far as surgeries go, I plan to spend some time in 2013 tackling the larger issues.

Writing about my experiences has been good for my personal recovery from a year filled with trauma. It would be even more meaningful if this blog could help others. Visitors from more than 110 countries visited this site in 2012. I hope to engage, inform and entertain (I like to laugh) a wider audience in 2013.

Thank you to everyone who stopped by last year. Welcome to all those who I have yet to meet, like the 29,170 American women diagnosed in 2012 with breast cancer who may or may not know that they are part of an important minority: BRCA breast cancer survivors. Welcome also to those who are at risk for cancer, which means pretty much everyone on the face of this beautiful blue-green ball hurtling through space that we call Earth.

BRCA1 and BRCA2 Risk Stats Simplified

I accepted long ago that my brain is wired for language, not numbers. All forms of math befuddle this word nerd. In the quest for knowledge about cancer risk, information in the form of numbers cannot be avoided. If those annoying stats were not so central to the BRCA decision-making process I’d vote to toss them out the window. In college I learned that statistics do not lie, but people do. Statistical data can be slippery and open to interpretation.

Here is a breast cancer statistic that is commonly repeated:

1 in 8 women will get breast cancer in their lifetime. What does that statement really mean? Breast cancer risk varies greatly throughout the course of one’s life according to the National Cancer Institute.

A woman’s chance of being diagnosed with breast cancer is:

from age 30 through age 39 . . . . . . 0.43 percent (often expressed as “1 in 233”)

from age 40 through age 49 . . . . . . 1.45 percent (often expressed as “1 in 69”)

from age 50 through age 59 . . . . . . 2.38 percent (often expressed as “1 in 42”)

from age 60 through age 69 . . . . . . 3.45 percent (often expressed as “1 in 29”)

Source: cancer.gov web site

Do you see 1 in 8 here anywhere? Nope. The one in eight number comes from looking at all women in the population up to age 80. This is an example of absolute risk. Let’s save relative risk for another day before I fall asleep writing this.

When it comes to absolute risk for BRCA positive people, the numbers that get tossed around can vary widely. They are often shown as a range. Keep in mind genetically inherited BRCA cancers strike differently in one family versus another. Some families will get more cancer than others and we do not know why this is so. Your family might fall at the low end of the range. Or not. This is part of why genetic counseling is a critical part of the BRCA learning curve. Those genetic counselor geeks know how to analyze numbers that are applicable to your situation.

One of the better examples of showing BRCA cancer risk as an easily understood graphic that I’ve seen comes from the new Basser Research Center for BRCA1 and BRCA2 at the University of Pennsylvania.

For this math loser, here is data I can digest and easily repeat to others. Why? Everyone understands basic percentages. In the general population, roughly 13 women out of 100 will get breast cancer at some point in their lives if they live to be 80 years old. For every 100 women who have a BRCA1 mutation like me, between 60 and 80 of them will get breast cancer if they live to age 80. Numbers like these matter when one is trying to decide whether to chop off precious body parts.

I will place these well organized numbers in my KISS (Keep It Simple Stupid) file for a book about cancer I’d like to write one day. Even if I never do fully understand the metric system or dividing fractions at least I can explain to my hairdresser why I’m having more surgery soon.