Who should have genetic screening for BRCA?

People get cancer for lots of reasons. It's important to know that only 5-10% of cancers are hereditary.

1 in 400 people have a BRCA1 or BRCA2 mutation.

If you have a direct family member who has had cancer more than once, it might be worth it to have genetic counseling. This isn't just about breast cancer, it includes prostate cancer and melanoma. If you have multiple family members, especially sisters, aunts, grandmothers, or cousins who have had breast cancer, it may also be a good idea to be tested.

Having genetic testing only gives you the information to know if you are at a higher risk for particular types of cancer.  Getting a negative test doesn't mean you won't get cancer, and testing positive doesn't mean you automatically have to sign up to have preventative surgeries. There is power in the knowledge of your risk of cancer. For some people, getting a positive test just means they will have increased surveillance/screening such as more frequent mammograms or ultrasounds for the purpose of catching the cancer early. And for some people, a positive test means taking the reigns and taking surgical preventative measures to keep cancer from being in control.

Insurance will typically cover the genetic counseling when there is a strong family history of cancer. Once someone in your direct family has a positive test, there is information that can be shared from them that could make your own testing even easier. The test itself is really simple - either a blood draw or mouth swab!

In the future, BRCA testing may become like a mammogram or colonoscopy — a routine part of care once you reach a certain age. But in the meantime, there are certainly steps we can take to protect ourselves from cancer.

My insurance through Kaiser paid for the genetic testing, and is paying for the mastectomies and reconstruction. Each surgery will cost me only my $5 co-pay.

There are some things to consider before going in for genetic counseling. First, you should maximize your life insurance policies prior to getting your results. If you get a positive test, getting life insurance becomes challenging. Also, you need to be prepared to start making decisions with your results. What will you do with the information when it comes back to you?

If you're related to me through my mother, then you have a 50% chance of having the BRCA 2 mutation. This is for males and females.  If you have it, your children also have a 50% chance of having it as well. If you have questions, please message or call me. I'd love to chat and share what I have learned.

It's not just about the boobies.

The name of the gene mutation, BRCA, is somewhat misleading. It is most widely known as the BReast CAncer gene, but having the BRCA mutations also put people at a higher risk of other types of cancer, including melanoma and ovarian cancer.

The average woman has a 1.5% chance of getting ovarian cancer.  A woman with a BRCA mutation closer to a 45% chance of getting ovarian cancer. 

Because of a lack of effective screening options, 62% of ovarian cancer diagnoses occur AFTER the cancer has metastasized. So really at that point, it's a battle to stay alive. Startling facts about ovarian cancer from brightpink.org: 2 out of 3 women who are diagnosed with ovarian cancer will die from it.

Many women who opt for prophylactic mastectomies also have a preventative oophorectomy and hysterectomy to remove the ovaries and uterus as well. My geneticist and the plastic surgeon both recommended that I take care of those surgeries first, but my OB/GYN has suggested that I hold off for a few more years in order to keep my hormones flowing. The majority of women, even with BRCA mutations, don't get ovarian cancer until they are closer to menopause, so I feel okay with waiting until I'm 41 or 42. 

I'm a fan of my estrogen. I'm also a fan of my sanity. Being put into surgical menopause by having my reproductive/hormone generating organs removed isn't something I'm ready to do. Surgical menopause at my age could easily result in all kinds of crazy side effects, including severe depression. 

I know from the outside, it could seem a little backwards that I'm willing to have surgeries that will permanently alter my outward physical appearance, but I'm not willing to have a surgery that no one will even notice. I'm still working on making sense of that one, too.

You could cut glass with those things...

Not that I'm obsessed with Angie or anything...

But Hollywood has called her one of the most beautiful people alive, and I happen to agree. And if you saw her in Maleficent, you know that post-mastectomy and reconstruction, she looks as hot as ever.

Sometimes I start to worry about the physical aftermath of all of this. I mean, it's not like my physical appearance is tied to my career. I think it was pretty gutsy of Angelina to go public with her journey, because she really didn't have to. Mastectomy, the reconstruction process... totally un-hot. The whole topic is probably not so good for public relations when your job is to look amazing. But the opportunity to speak up about BRCA mutations and hereditary cancer totally outweighed any reason for her to keep it quiet. So what if there would be critics? I can say that I certainly learned more about hereditary breast cancer after Angelina Jolie went public with her own journey.

Of course, the majority of my knowledge came after it became personally relevant.  But if my own speaking up here in this blog leads to even one person learning something about the BRCA mutations, than it will be worth it to me.

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So I had a bit of a melt down one night last weekend after coming in from the cold. It suddenly occurred to me that the physical response to the cold that to we come to expect from our natural anatomy, well, it just won't happen any more. The 'responsive' parts will go with the rest of it all. That's just kind of creepy.

Reconstruction will take several months. I wonder what it will look like. I wonder if I will want to look? Will I let anyone else see?

I am not a movie star and no one will be plastering my face (or any other part of me) on to the cover of any magazine. I know that the people who love me will continue to do so, even after they are off of my chest. I just wonder if I will be so forgiving and loving to myself. How long until I will love to look at me again?

Why.... (part one)

Why would you mutilate yourself like that? 

Isn't that a bit drastic? 

Where does God fit into this? Just pray and have faith that He has a plan for you.  

These are all things that have actually been said to me this year.

I believe in God, and I also believe in Science. And I believe that God gave the talent to the doctors and scientists to discover this gene mutation. And I believe that God put me in that room with Mom and Dr. Moffet, and that He was with me when I made my clear decision.

This is why:

 My mom and I, just ten years ago. We were regularly asked if we were sisters.

Mom, this past Spring. Her most recent round of chemo exasperated a gastro bleed that almost killed her. Chemotherapy is hard on the body. She is still so very strong, but there is no denying that cancer and chemo have caused permanent (and often painful) damage to her body.

I am thankful that she has fought and won again, but not everyone is so lucky. 1 in 8 women (13%) will get breast cancer.  Women who have the BRCA mutations have up to an 85% chance of getting breast cancer. 

Breast cancer causes the deaths of 40,000 women each year. 

Having a prophylactic (risk-reducing) mastectomy reduces the chance of breast cancer by 90%. 

Cancer is lame.  I will fight.

Purpose

When Angelina Jolie announced that she'd had a bilateral prophylactic mastectomy in early 2013, I clearly remember asking myself if I could do the same thing if I ever found myself in that situation.

I mean, don't we all wonder how we'd respond when put to extreme challenges in life? Don't we all carry out crazy scenarios in our minds, and wonder if we could be the superhero when put to the test? Or is that just my brand of crazy?

I also very clearly remember the day that I sat with my mom and her oncologist, and he warned that if was going to have genetic screening for BRCA, I needed to be prepared to make some serious decisions with the results. 

And in that moment, there really was no question in my mind. I knew what I would do: Get them off of my chest! 

My hope for this blog is to document some of my thoughts and feelings as I go through this process. Also, I want to share information about hereditary breast and ovarian cancer.