Two big wins for the high-risk breast cancer community

First, Facebook clarified their stance (link NSFW) on mastectomy photos:

“We have long allowed mastectomy photos to be shared on Facebook, as well as educational and scientific photos of the human body and photos of women breastfeeding,” Facebook said in a prepared statement. “We only review or remove photos after they have been reported to us by people who see the images in their News Feeds or otherwise discover them. On occasion, we may remove a photo showing mastectomy scarring either by mistake, as our teams review millions of pieces of content daily, or because a photo has violated our terms for other reasons. As a reminder, our terms stipulate that we generally do not allow nudity, with some exceptions as laid out above and here, consistent with other platforms that have many young users.”

This is great news for everyone in organized Facebook groups such as Young Previvors, the group I have come to regard as my safe haven throughout (and even after) my surgeries. One of the most valuable aspects of these communities is being able to see what to expect following surgery, and it’s wonderful that women–some of whom would otherwise have no access to post-mastectomy photos–can share with each other as a means of support.

And in other big news, today the United States Supreme Court ruled against the patenting of human genes in the case Association for Molecular Pathology v. Myriad Genetics, Inc.

From the SCOTUS blog: “The Court held that a naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated, but manmade cDNA is patent eligible because it is not naturally occurring. The case involved the well-known BRCA1 and BRCA2 genes, which can involve mutations that increase the likelihood of breast cancer.  The ruling is significant for a variety of companies (including Myriad) that hold important DNA patents.”

This decision will result in lower costs for testing for gene mutations such as BRCA1 and BRCA2, making it much easier for women (and men!) to access the test. It will also mean more money and motivation for research.

I’m a happy camper!

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At last, a surgery I can actually call “cosmetic”

Greetings!

First off, I want to thank all of my readers for supporting Young Previvors after our Facebook trouble a few weeks ago. Our original group has not been restored yet, nor have we heard anything from Facebook about why the group was deleted. We have, however, started a new Young Previvors group. Our admin, Liz, continues to do a phenomenal job of screening all potential new members, so if you are a previvor or a high-risk young woman, consider joining us. You can email me or search for “Young Previvors” on Facebook.

Things have been uneventful in my world of breast reconstruction, but they’ll pick up a bit in a few weeks. My final-final-final-last-one-I-seriously-promise-you’ll-never-have-to-read-about-it-again-unless-it-looks-ugly surgery is on Monday, February 25. Dr. Festekjian will be doing some minor cosmetic adjustments.

When I saw Dr. Festekjian at my two-month post-op a few weeks ago, I was still concerned about the difference in height between my nipples. Although they’ve certainly improved since my initial implant exchange surgery, the right nipple is still noticeably lower than the left.

At the appointment, Dr. Festekjian asked me point-blank which side I like more. I told him the left side, and to my relief, that was the acceptable answer. He can make my right side match my left side, but because of the extensive work he did on my left side during the implant exchange surgery, he can’t make the left side match the right. Unless, he joked, I get an infection on the right breast. Har har har. Funny.

In the outpatient surgery, he will lift up the right nipple and put some internal stitches in place so it sits higher. He will also add a layer of alloderm underneath my skin, to cover up the rippling. I plan to take a few days off work, but given my quick recovery from the past surgeries, I expect to be back in the office by Thursday. Watch…now that I’ve said that, I’ll have some horrible allergic reaction to the ice cubes in the recovery room and be bed-stricken for the next two months.

Okay, moving on: I have some very important and exciting news to share with everyone. I’d like to introduce you to Chester Frito Horn, my new furry child.

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He’s an 18-week-old American medium hair. I officially adopted him from the animal shelter at 11:30 am on Saturday morning, then promptly sent him across the street to the vet surgery center to have his balls removed. Sorry, bug…YOU’RE IN MY WORLD NOW.

I picked him up this afternoon and he seems to be doing just fine. Here he is, Cone of Shame and all. He is now, in my parents’ words, a consultant.

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Cat people: how can I get him to stay off of the kitchen counter? I’m scared he’s going to set his tail on fire with the pilot lights on the stove!

Have a fantastic week, everyone. Happy Valentine’s Day!

 

Feeling downtrodden today, but I need your help to get back up!

My mom is a member of the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. She has been paddling with the Pinks for about a year now. Last night, one of her teammates passed away after a long battle with breast cancer. Frances was my mom’s benchmate on the boat. On the Pink Dragons’ Facebook page, Mom writes: “Frances, your courage and determination was an inspiration to all of us. Your teammates will miss you so. Rest in peace, dear friend.

Then scrolling down through my Facebook newsfeed, I was accosted by another heartwrenching message, this one from Bright Pink founder Lindsay Avner: “My heart breaks upon learning of the loss of Rebecca, a member of the Bright Pink Vermont family, who lost her battle to breast cancer at only 29 years old.”

29 years old.

Frances and Rebecca’s deaths are just two of many breast cancer-related losses I often hear about, but the news NEVER gets easier to swallow. Frances could have been my mother; Rebecca could have been me. I thank my lucky stars that my mother and I are both healthy and thriving, but two families are hurting right now, and though I did not personally know either woman, I am hurting, too.

These amazing women did not have the chance that I had to say “NO WAY” to breast cancer before it could come knocking. My BRCA mutation robbed me of a lot: the ability to be carefree, the trust I had in my body, and of course, my breasts. But it gave me something too: the chance to save my own life.

I’m a previvor. I survived my predisposition to breast cancer. If you’ve been following my blog, you know it hasn’t been an easy road to walk. I would not wish it upon anyone, especially a young woman like me. But it was necessary.

As more women learn about the BRCA mutations (and other rare genetic mutations linked to breast cancer), they are faced with the difficult decision to undergo prophylactic surgeries. They have questions. They have concerns. They are scared. And sometimes, they feel like they have no where to go, because there is no one who understands.

There is, though. There is a whole community who understands–you just have to turn on a computer.

Yesterday, Emperor Zuckerberg and his droids over at Facebook shut down part of that community. Young Previvors was a group of nearly 200 women just like me. It was a safe haven away from judgment and fear where high-risk women could ask questions, voice concerns and share stories of hope.

Young Previvors helped me when I was initially shocked by the unevenness of my new silicone implants. I shared my photo, and was soothed by the outpouring of support from women who had over time seen improvement in their own implants.

I helped women on Young Previvors, too. I described the early signs of my cellulitis infection and how I finally got my Jackson-Pratt drains taken out. I reached out to other young women, college students who were just learning about their cancer risk.

Now we need your help.

We don’t know why Facebook shut down Young Previvors. The group was not at all public; on the contrary, the privacy settings were very intense and all members were pre-screened by the group founder/moderator. Only group members could view posts from Young Previvors.

Please “like” our new page on Facebook. Share the page with your friends and ask for their “likes” too. On Twitter, tweet the hashtag #SaveYP and retweet the message from Young Previvors. You could even email Facebook directly: disabled@facebook.com.

We hope that these efforts from the public will show the people over at Facebook that this group is crucial. Isn’t the point of social networking to connect, to form a community? We did that. Why did Facebook punish us?

If just one young women like me does not find the support she needs because Young Previvors is gone, then it will be a huge loss.

Thank you so much for your help. I will keep you all updated on the progress of the group’s restoration.