My life with the BRCA 2 gene, and how I got there.

Angelina Jolie wrote an eloquent, well written op-ed piece in the NY Times today “My Medical Choice”, that really inspired me to share my story and tell you what it was like to be told you have the BRCA gene.  If you are familiar with my site you know that I will talk about anything- nipples, mastectomies, anything! But I have to be honest I have been a little fearful and reluctant to share my gene status with the whole world. Talking about this makes me more emotional and upset than any other breast cancer subject. To have gene testing it is a blessing and a curse. This is such a complex issue, and I get angry that anyone has to go through this in the first place. But on the other hand, what an advantage it is to know you have the gene, and to be able to possibly prevent getting cancer.

My family had no idea we had the gene, or really much about the gene until I was diagnosed with cancer at 33. I remember watching the evening news one day where they mentioned that scientists had isolated 2 genes that caused Breast and Ovarian Cancer. I didn’t think much of it, just thought it was a great advancement for science. My grandmother had cancer at age 80 and 85, and my mom has had several suspicious lumps removed, but no one suggested that I get tested for the gene until I was diagnosed. It took 2 months to get the results (which is not normal- it’s supposed to take 3 weeks) but I was a little occupied with chemo so it didn’t bother me.  Once I was told that I had the BRCA 2 gene, I was actually kind of relieved. I had something to “blame” the cancer on, and it made my decision to get a double mastectomy not easier, but it reassured me that I had made the correct decision.

Honestly, I am in awe of women like Angelina Joile- because the amount of courage it takes to have a double mastectomy when you don’t even have cancer- is a whole new kind of brave.  But she did the right thing- she thought with her head, but also with her heart. She put her health and her children above her fear and self image. And she did the right thing- I can’t say that enough.  BRCA 1, is nothing to mess around with- I just lost a 35 year old friend who had BRCA 1, and BOTH her sisters are fighting cancer as we speak.  Some of these breast cancers are impossible to beat- the only thing we have is prevention. We have to do our darnedest to prevent getting cancer in the first place. Make our bodies as inhospitable to cancer as possible. As Kris Carr, the Crazy Sexy Cancer lady says- it’s our “God Pod”. Prevention has to come from many angles- surgery, nutrition, hormone suppressing medicines like Tamoxifen. Once you have breast cancer, you have a 25% chance of recurrence. I don’t like those odds.  In Joile’s article, she states that she went from a 87% chance of Breast Cancer to a 5% chance just by having a double mastectomy. And once she has her ovaries out, her estrogen in her body will drop and that will reduce her risk of breast cancer as well as Ovarian.  Did you know that only 1 out 4 women beat Ovarian Cancer?And there are no real symptoms to Ovarian cancer or a clear cut blood test; just “markers” that can be elevated.

I think the most helpful thing I can say to someone going through this and faced with the same decision is to tell you what I was thinking and what I did. Everyone has a different set of circumstances that influence their decision. I was married, already diagnosed with Estrogen positive breast cancer (the easiest to treat), Stage 2B, and it already spread to my lymph nodes, and I didn’t want kids. Here are some things that go through your head when dealing with the BRCA testing and results.

1. The hardest decision was deciding to get a double mastectomy. But for me it was all about trying to prevent my cancer  from coming back. And after surviving 4 months of chemo, (hell) I never wanted to go through that again. I wanted to give myself the best possible chance of putting cancer behind me for good.

2. Kids- I have a 50% chance of passing it on to each of my kids. If they are girls- it is far worse for them. If it’s a boy- they have a higher chance of breast cancer and prostrate cancer than the normal man. What is worse than fighting cancer? passing it on to your kids and watching them go through this. Which is why we never told my grandmother, she would have blamed herself for passing it down to her kids and grandkids. And it’s not like she could have prevented that.

3. Family- we are such an independent thinking society here in the US, but getting testing and even just the simple fact of finding out your results will affect the family around you. Even the extended family that you are estranged from. They may not want to know you got tested. And they may not want to know your results. It’s hard to respect their wishes if they know you are getting your ovaries out. How are you going to explain why you had that operation if you are not positive for the gene. See my point? tricky…

4. Money & insurance- Thankfully my insurance covered the $3,000 test and all of the operations like my preventative oophorectomy (removal of ovaries) but they did so because I already had cancer. In my moms case they will cover her preventative double mastectomy but not the reconstruction- that is about $8,000. I think the insurance would rather take the 85% chance of paying for her chemo & radiation. And since I have the BRCA 2, my relatives only had to get the test for #2, which was only $300, not $3,000.

These are some of the things I had to contend with and I still think about. Even within 5 years since my diagnosis- things are changing for the better reconstruction wise. Whatever your decision is, know that you are not alone- that the 5% of us who have the BRCA genes are here for you.

 

 

One Comment

  1. Posted May 17, 2013 at 1:28 am | Permalink

    Congratulations, Karen, on sharing your heartfelt story!
    Elizabeth