Feeling crazy about testing for the breast cancer gene

No more herceptin!! I'm all done with chemo. I'm all done with my cancer treatments pretty much. How amazing is that? Wednesday was supposed to be another chemo day, and the day that I gave my blood sample for the genetic test. I was really upset in the days leading up to my appointment... thinking about the genetic test for the breast cancer gene and the ramifications afterward had me really worried. It turned out to be my final day of chemo. I was disappointed because I was really looking forward to having some designer cupcakes delivered to the cancer center as a celebration. Ah well...



TESTING FOR THE BRCA1/BRCA2 GENE
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA


After talking to the geneticist....I was more confused and more scared than before I met with her.

The reality is that most women do not carry the breast cancer gene. However, the other side of that coin is that I did have breast cancer and two of my aunts did have breast cancer. And I was diagnosed under 40 years old. That is an unusual situation that means that getting tested is a good idea.

One thing that the geneticist mentioned that I had not thought of, were the ramifications of having a breast cancer genetic test in my history. (sigh)  She tried to reassure me that getting the test was less problematic from a health insurance perspective than having breast cancer. I had not thought of that at all.

How crazy is it that you have to compound your health concerns in the present with insurance, job, and financial concerns in the future?

I would think that insurance companies -- and possible future employers -- would want to know whether or not someone has the breast cancer gene in order to be in a better position to treat the illness before it becomes a huge financial burden. Is it me or is our system rather backwards? We seem to be enslaved to insurance companies who simply DO NOT want to consider preventative health measures. But who do want to give punishment for those who ultimately do have to deal with major health concerns. It makes no sense.

The way that the hospital sets up the testing, you have to come in and meet with the geneticist so that she can explain to you what the test is, what it does and how it works. Then you have to be told that the test costs almost $4,000! (and you have to sign papers that you were informed of this cost) before they will even schedule the blood draw.  The hospital has a system now where they run the paperwork to your insurance company BEFORE they test your sample, to find out whether or not the insurance company will cover any of the costs. Many companies do cover the test cost -- but not completely. So, if my insurance company covers the test, my contribution will be about $500 or so.

Sigh.

I opted to take the test because I feel an obligation to know. I feel an obligation to let my family know whether or not this is something that we need to be aware of. I feel an obligation to myself to do all that I can do to ensure that I am as proactive as possible with my health. I may have a daughter one day -- its a slim thought but a possibility -- and after all I've been through, it would be horrible NOT to know something like this might be lurking in my baby girl's dna.

The test results won't be back for about 2 weeks. I will have to make the decision to keep or remove my breast without knowing the results of my genetic testing.  That is very scary but something that cannot be helped.