what is BRCA testing and why

This does tell your doctor a little more about your treatment options. With triple negs they are pretty aggressive any way. This was really never a issue for me because my disease is so aggressive that they were 99.9% sure I carried the Gene.  This is a lot about showing "possible" risk for other family members that have a change of getting bc. I found this article earlier this month.

Breast cancer gene tests - not worth the price? Biotechnology firms hope to cash in on women's fear of the disease COMMENTARY By Arthur Caplan, Ph.D.

Fear of breast cancer has created a tempting market for companies to sell genetic testing directly to consumers. The disease kills 40,000 people a year in the U.S., with an estimated 212,920 new cases diagnosed in 2007, according to the Mayo Clinic.

It's no wonder women would want a reliable gauge of their risk. However, American women should be aware that genetic tests for breast cancer are more hype than real hope.

On Wednesday the biotech research company Decode Genetics of Reykjavik, Iceland, announced it will sell a new test for $1,625 that it claims will allow women "to assess their personal risk for the common forms of breast cancer."

Genetic testing for all sorts of conditions is all the rage these days. Everywhere you turn, some company is urging you to spit in a cup, take some blood or swab your cheek so your DNA can reveal your health risks, know who your long-dead ancestors are, pick the right mate or help you design a diet that is perfect for your genetic makeup. But, "spitomics" has gotten way ahead of genomics.

Sadly, the tests Decode and other companies are offering are more likely to empty family pocketbooks and leave women with a false sense of security than they are to prevent breast cancer. There is simply not enough federal and international regulation in place to determine which tests are accurate or how heredity interacts with lifestyle to create individual risks.

If the Food and Drug Administration and Congress do not rein in the corporate greed that is currently driving the sale of genetic tests for breast cancer and other diseases and conditions, we could soon have an industry that bears an uncanny resemblance to the home mortgage business.

Marketing for genetic tests is already ubiquitous. The television commercials and magazine ads, which ran in Denver, Atlanta and various cities in the Northeast, promise women that cancer does not have to be "inevitable." They also claim that the average woman can reduce her risk of developing cancer through genetic testing.

Myriad Genetics, the Salt Lake City biotechnology company behind the heavy ad push, charges about $3,000 for a complete risk-disposition test. Myriad, which holds a patent on the first breast cancer test, has been taking full advantage of the genetic testing monopoly it enjoyed until Wednesday when Decode entered the market with its new, more generalized test. To date, Myriad has been very tough about enforcing the patent, even though medical centers in the United States and other countries say they could do the same testing for a much lower cost.

Only small fraction would benefit
In reality, the numbers about detectable risk don't really back up Myriad's ad claims.

Of the more than 200,000 new breast cancer cases, only about 20,000 seem to be connected to the BRCA1 and BRCA2 genes - the genes most closely linked to the inherited form of the disease that Myriad's test can detect. For women without a family history of the disease, perhaps 1 percent would benefit from the test.

On one hand, it would seem to make sense to seek out genetic testing to avoid becoming a breast cancer statistic. Or does it?

Contrary to the marketing messages, only women who have a strong family history of breast cancer - two or more parents, grandparents or siblings who have developed the disease - need to talk to their doctor or a genetic counselor about the value of any form of genetic testing. 

Decode's newer test is not really accurate enough or based on a large enough sample of women to accurately predict much about an individual woman's chance of getting breast cancer. 

If you are worried about your risk of getting the disease, or are thinking about getting a genetic test done for any other reason, talk with your doctor or a genetic counselor who can determine whether your family history justifies the expense. You may be surprised to find that you can make changes in lifestyle and monitoring your own health that can reduce your risk without testing.

The genetic revolution holds much promise for improving our health. Currently, profit and market advantage are playing the key roles in shaping how genetic testing is evolving. These are not the right navigation tools to help women at risk of breast cancer - or the rest of us - capture that promise.

Knowledge is Power!!

floridaLady- the BRCA test tells a tremedous amount and really helped me make my decsion

I was Dx with Breast cancer- we all know how scary and terrible that is.

My maternal aunt died of BC and i am an Eastern European jew, so BRCA testing was covered- I was not convinced by TV or Magazine ads, but by my BS, Oncologist and a Certified Genetic Counsellor- no marketing here- real facts!

I am BRCA2+.  Based upon this information, I changed my mind from Lumpectomy to double mastectomy and oopherectomy.  I hope to never have the phone call "you have cancer" again, never go thru chemo again, etc.  there are no guarantees in life, but I did all I could.  I know too many women who  went thru it once, only to find another lump in the other breast and had to start all over again- they WISH they had a BRCA test.  so much for more hype than hope!  I really find this comment insulting to all the educated geneticists who are trying to find out why we get this terrible disease.

One last point- BRCA also puts you at high risk for ovarian cancer- which has no good screening test AT ALL!!

I do not believe in statistics- remember the odds of our lump being cancerous was low- that did not help any of us who had cancerous lumps.  Even my BS said she believes many more cancers are genetic- we just do not know enough yet and so few have any sort of genetic testing done.

Here is a positive article:

Mutations in BRCA1 and BRCA2 are thought to account for 5-10% of breast and ovarian cancer cases. Although mutations are rare, genetic tests are available to women with evidence of a family history of breast and/or ovarian cancers. The genetic tests screen for deleterious mutations in a person's BRCA1 or BRCA2 gene. Interpreting the results of a BRCA1 and/or BRCA2 genetic test, which uses a woman's family history of breast and ovarian cancer, can be difficult. False-negative results lead to a false sense of reassurance. False-positive results lead to unnecessary anxiety and treatment.

Researchers at the University of Utah and Myriad Genetics investigated the use of positive and negative ‘predictive value' analysis as one tool for health care workers to use to interpret BRCA1 and BRCA2 test results. A predictive positive decreases the risk of a false positive test. A predictive negative test decreases the risk of a false negative test. Results from their experiments show including the family history of the following relatives serves as useful predictive factors for interpreting the results of a BRCA1 and/or BRCA2 test:

• a person with a relative with ovarian cancer
• a relative with male breast cancer
• bilateral cancer in a patient
• breast cancer in a patient below 40 years of age
• breast cancer in one relative who is below 50 years of age

Using the relative family criteria listed above, a predictive value test is extremely useful for women whose pretest probability of breast and/or ovarian cancer is between 10 and 40%. The likelihood of a false-postive test decreases as the pretest probability increases. The false-positive rate for a person with a 10% pretest probability is 5%, while the false-positive rate for a woman with a 40% pretest probability is 1%. The likelihood of a false negative result increases as the pre-test probability of a mutation increases. The false-negative rate for a person with a 10% pretest probability is 2%, while the false-positive rate for a woman with a 40% pretest probability is 9%. The risk of a false positive test result is 0% for a woman with a pre-test probability of a mutation greater than 50%. For a woman with a pre-test probability of a mutation greater than 50%, the risk of a false negative, however, begins at 13% and increases.

Dr. Susan Neuhausen at the University of Utah reports, "The predictive value of BRCA1 and BRCA2 testing is comparable to breast biopsies and mammograms."

Just personal experience:

In 1996, I was dx'd w/ stage II breast cancer (right breast).  Had a lumpectomy as recommended by doctors.

In 1999, I was dx'd again w/ stage II PRIMARY breast cancer (left breast).  Also had a lumpectomy as recommended.

In 2003, the first right breast recurred in the right breast.  This time I chose bilateral mastectomy.

In 2006, I was dx'd metastasis to the lungs.  And yes, this time I got tested and was positive for BRCA1 mutation.

Had I known I had the mutation & the seriousness of the mutation way back in the 90's, I would have had bilateral then.  Being BRCA1, I had 80% chance of developing breast cancer.  And just because I have been diagnosed with one bc once, it doesn't mean that my risk diminishes.  After lumpectomy, chemo, rad in 1996/7, since I still had both breasts, I STILL have 80% of developing new breast cancer again.  And I did.

In your case, genetic testing may provide helpful if you're ready to take drastic measures (such as prophylactic mastectomy and/or oophorectomy) should you test positive for BRCA1/2 mutation.

Another thing to think about is your family members who may also carry BRCA1/2 mutations IF you do.  In my case, my sister who has 50/50 chance of being BRCA1 as well, turned out to be.  She was also diagnosed with stage II bc earlier this year.

Also, since knowing my BRCA1 status, I was able to participate in a clinical trial that was only specific for BRCA1/2.