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.

T-Minus 2 Weeks

Today marks 2 weeks until my exchange surgery! I have been studying 24/7 for finals, which has been a welcome distraction and has helped the time pass by very quickly. I have my pre-op appointment on Thursday, which I am really excited about since I finally get to go implant shopping. My surgeon said it’s about time I have a fun appointment, and I couldn’t agree more. Here’s a list of things I’m doing to prep for the exchange, hopefully it will help any of you planning an upcoming surgery.

  • Eating clean
  • Switched from Aleve to Tylenol
  • Hyperbaric oxygen treatments
  • Strength building at physical therapy
  • Arranging for friends/family to come and help while I recover
  • Pick up prescriptions and make sure all bottles are non-childproof
  • For the mastectomy, our friends gifted us with a home meal delivery service – we plan to order from them again (it was a huge help for Adam not to have to cook)
  • Make sure everything I need is at waist height
  • Practice getting in/out of bed without using my arms
  • Get a blowout the night before surgery (I can’t shower for 3 days post-surgery)
  • Underarm wax (I can’t lift my arms above my shoulders for 3 weeks after surgery, so this prevents me from needing to shave)
  • Reorganize closet so button-up shirts/shirts I can step into are easily accessible

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.

Happy Thanksgiving!

Sorry I’ve been MIA for a bit – I’ve been super busy with school and gearing up for finals. Happy Thanksgiving!! This year, I have a lot to be especially thankful for. I’m thankful for my incredibly supportive husband, amazing family, and awesome friends. I couldn’t have made it through this journey without them. I’m thankful for my all-star medical team, medical technology, and advances in science that made it possible to lower my breast cancer risk from an 87% lifetime risk to about 1%. I’m thankful for the opportunity to become a nurse, which is my passion and dream. And I’m thankful for you – what started as a little blog has turned into a community. I’m so grateful for everyone who reads the blog and helps spread the message that knowledge is power and that cancer risk can be lowered through education, screenings, and prevention. Happy Thanksgiving!!

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T-Minus 1 Month (again)

The last time I had a 1 month countdown was back in July before my mastectomy. This 1 month countdown is much more exciting because it’s a month until my final surgery, called “the exchange.” The exchange surgery is when my turtle-shell tissue expanders are exchanged for squishy implants. It’s a much less invasive (no tissue removal), much shorter (no more 7 hour surgery), outpatient surgery (no more staying 2 nights in the hospital). I also should be a lot more comfortable after the surgery because of how much better the implants will feel than the current tissue expanders I have in, which kind of feel like tupperware in my body. The recovery is still similar in terms of restrictions (I’ll be in t-rex no arms above my shoulders mode for another 3 weeks), but it is supposed to be wayyyyy less painful. I know it is still surgery, but after going through the mastectomy, I’m optimistic about how much easier of a recovery this will be.

Here are some things I’m really looking forward to after my exchange:
– Sleeping on my side (I have had to become a back sleeper since August) 6 weeks after surgery
– No more 24/7 bra wearing, which I’ve been doing since August
– I’ll be able to work out again after about 6-8 weeks
– Squishy implants instead of rock hard expanders

I’ll update everyone after my pre-op, on 12/4!

RIP Diem Brown

Just read the sad news that MTV reality star Diem Brown passed away due to cancer at the young age of 32. She bravely fought Ovarian Cancer three times. Sadly, this time it spread to her stomach, colon, liver, and lymph nodes. I remember when Diem took off her wig after going through chemo, on the MTV Real World/Road Rules Challenge. She was a great advocate and inspiration and it is so sad that her bright light was taken away by the silent killer. Read more about Diem here and find out more about signs of Ovarian Cancer below.

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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