Category: BRCA

National Previvor Day

Today is National Previvor Day! The CDC defines a previvor as “someone at increased risk for developing cancer, but who has not yet developed it.” I’m a proud previvor because of my BRCA2 mutation. Even though I decided to have a prophylactic mastectomy, that’s my personal choice and it’s not the right choice for everyone. Knowledge is power and getting tested for the BRCA mutation doesn’t mean that you need to have surgery if you test positive. Surveillance is just as important and strict surveillance is a great choice too. If you have any red flags that indicate a possible BRCA or any other hereditary cancer mutation, please consider getting a genetic test.

  • Check out 8 red flags that might indicate a possible BRCA mutation here
  • You can also take Pink Lotus Breast Center’s quiz to find out your hereditary cancer risk here
  • If you want to get tested for the BRCA/hereditary cancer mutation, you can find a genetic counselor here

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Angelina Jolie Pitt is My Hero

I was diagnosed with my BRCA2 mutation in 2007, at the young age of 23. I was prompted to get tested because of my family history of ovarian and breast cancers. My grandmother, who I was very very close with, passed from ovarian cancer. When I tried explaining what BRCA was, people were very confused. When I talked about the possibility of having my ovaries removed when I was 40, I got some strange and judgemental looks.

Even sitting in the mammography waiting room, waiting for the radiologist to take a second look at some suspicious images, the mammogram technician proclaimed in front of all in the waiting room, “Why are you here? You are so young?!” When I vulnerably explained the BRCA mutation, sitting there in an uncomfortable robe, she said “I don’t know what that is.” I fought with insurance companies with every mammogram, breast MRI, pelvic ultrasound, and CA-125 test. It wasn’t exactly how I wanted to spend my time in my early 20s, but I knew it was worth it.

Then, in May of 2013, everything changed. Angelina Jolie bravely announced she had undergone a preventative mastectomy due to her BRCA1 mutation. Suddenly, when I told someone about my BRCA mutation, they said “Oh! The Angelina gene!” One of the world’s biggest movie stars had made it possible for me to speak openly about my BRCA mutation. Even the decision to have my preventative mastectomy at age 30 was made in part due to Angelina Jolie Pitt’s decision. My breast surgeon, Dr. Kristi Funk, was the same surgeon that Angelina used, and her blog posting about Angelina’s experience made the idea of surgery less daunting to me. Angelina’s braveness to speak about her journey also encouraged me to start Funky Genes. I wanted to be open about my journey so that non-movie stars know what their resources were and that they have just as much a part in their health decisions as anyone else.

Now, Angelina published a new, brave op-ed, about having her ovaries and fallopian tubes removed after some suspicious labwork. I have known that I would get my ovaries and fallopian tubes removed at age 40 since my BRCA2 diagnosis. Hopefully, Angelina’s announcement will bring much needed attention to ovarian cancer research.

As a public health professional and soon-to-be nurse, I have seen the impact that Angelina’s openness has had on the general public. I absolutely love her message, which I say often on this blog – knowledge is power! Participating in your own health decisions is so important. I also love how supportive her husband is in her health decisions, something I am lucky enough to also experience. Angelina Jolie Pitt really is my hero and I hope one day to meet her and to tell her in person. If I’m not able to, I hope she somehow can read this post and know how much she has positively affected my life, and so many others.

Great Article!

Many people don’t realize that you can’t breastfeed after a double mastectomy. When I decided to have a preventive mastectomy, one of the hardest aspects was knowing I wouldn’t be able to breastfeed. I know that many women can’t breastfeed for a variety of reasons, or choose not to, and that there is nothing wrong with formula – but it still was a big decision to make. But, since my BRCA2 mutation breast cancer risk would have been especially dangerous during pregnancy, the decision to have the preventative mastectomy before ever getting pregnant made a lot of sense to me.

This article in the Washington Post really spoke to me. Please take a few minutes to read it, it is a great educational piece and will hopefully make people a little more sensitive about just assuming everyone can/wants to breastfeed.

Not Looking Doesn’t Mean the Gene Mutation is Not There

The title of this post is my favorite quote from the Courier-Journal’s article about the controversial AARP Magazine story featuring false information about BRCA from Melissa Etheridge (in case you missed it, read more about that here). Read the Courier-Journal’s full article about the debate here. It contains some great info!

The quote, “Not Looking Doesn’t Mean the Gene Mutation is Not There”, is from Judy Garber, who is the director of the Cancer Risk and Prevention Program at the Dana Farber Cancer Institute. I totally agree with this – knowledge is power. Finding out you have a BRCA mutation does not mean you will get cancer. It also doesn’t mean you have to undergo surgical procedures. It was the right choice for me, but not for everyone. Melissa Etheridge discouraging women to get tested for BRCA mutations and is incredibly irresponsible of her. Whether or not someone decides to get the test, it is a very individualized decision. So I’m very happy that the Courier-Journal ran their story.

It’s Just Emotion Taking me Over

A woman recently posed a question on one of my BRCA online communities about experiencing intense emotions after her prophylactic mastectomy. She is only 2 days post-op and was asking if anyone else had become easily upset after their surgery and if anyone had regretted it. I answered her because I definitely experienced some crazy emotions after my surgery. I’m not sure if it was my hormones readjusting, the trauma of major surgery, the pain, or the loss of my breast tissue (or maybe all of the above) – but I was definitely crying after my surgery, especially during week 2 post-op. I’m not someone who cries easily, with the exception of TV and movies (ie I cry every time I see the Sex and the City ep where Harry proposes to Charlotte). But, after my mastectomy, I found myself crying at the smallest things. I remember being at the Relax the Back store and finding a nice pillow to help me sleep – and breaking into tears in the store. Or thinking about how much my family and friends were helping me, and crying tears of gratitude.

I think it is really normal to have these types of feelings/emotions after a prophylactic mastectomy and it’s important to acknowledge the feelings. I also had a small feeling of regret right after the surgery. I wondered – why did I do this to myself? Is the pain worth it? The good news is that for me, the crying stopped after week 2. And the small feeling of regret I had right after my surgery disappeared after a few days, once I got my pathology results that everything was clear. It was a reassurance that I had done the right thing and I didn’t have to worry about my breast cancer risk like I had before. No more mammograms and breast MRIs every 6 months. No more getting a call that I needed to go back to see the radiologist for an ultrasound after my mammo and worrying about what they had found.

And now that my final surgery is in less than 3 weeks, the only emotion I feel is excitement. It’s really weird to look forward to having surgery, especially being in the healthcare field and understanding all the risks/complications associated with surgery. Still, I can’t wait to have this all behind me and not have a heavy pair of tupperware-like expanders in my body. Anyway, just wanted to share that post-mastectomy emotions are totally normal and I feel it’s very important to voice them and let it all out. Below, please enjoy the Destiny’s Child jam that this post is named after.

AAR PO’d That They Ran This Article

I try very hard not to make judgements about people’s medical decisions or beliefs. That’s why I haven’t said anything on my blog about Melissa Etheridge’s opinion on prophylactic mastectomies. Etheridge is BRCA2 positive and a breast cancer survivor. She made headlines in 2013 when she said (re: Angelina Jolie’s medical choice):

“I have to say I feel a little differently. I have that gene mutation too, and it’s not something I would believe in for myself. I wouldn’t call it the brave choice. I actually think it’s the most fearful choice you can make when confronting anything with cancer.”

Although I completely disagree with Ms. Etheridge on this issue, she is entitled to her opinion. But now I’m pretty angry with her latest comments. Not so much at Melissa Etheridge, but at AARP. AARP recently ran a photospread featuring breast cancer survivors Melissa Etheridge and Sheryl Crow. In the photo, Etheridge is quoted as saying:

“I have the BRCA2 gene but don’t encourage women to get tested. Genes can be turned on or off. I turned my gene on with a very poor diet.”

How could AARP run such nonsense in their widely read magazine? This is completely inaccurate medical/scientific information. Melissa Etheridge is not a medical professional and AARP should not be running comments like this from her as if they are fact. Yes, a healthy diet and active lifestyle can lower breast cancer risk (regardless of genetics), but there is no way to turn the BRCA mutation on or off. If someone does find evidence-based, peer-reviewed literature saying that there is a way to turn the BRCA gene on/off, please send it my way.

I sincerely hope AARP runs an apology or clarification in their next issue to clear up this myth they have now publicized as fact.

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photo source: AARP