PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Sunday, January 27, 2013

Never ending circle

Two years ago when I decided to have my PBM, I remember feeling so alone and scared. I've always felt isolated due to my insanely rare genetic mutation (Cowden's affects like what...2% of the population?) and this was no help. I remember my Dad saying to me, "You need to talk to someone about this. I know you want to be strong, but you can't keep this inside." I remember just kind of chuckling like "Who am I going to find???"

While there was no support group locally for me to turn to, I found a wonderful support system through the FORCE message boards. Even though the women there were at least 10 years my senior, they helped me through a lot and for that I will always be grateful. However, it was hard talking to older women, because they didn't relate to everything I was going through. They tried, and they listened to me rant on and on but I still sensed that they really didn't get it. FORCE has a message board forum entitled Young Previvors, but things are pretty slow on there so I didn't make any connections.

One thing that struck me, is that how in awe of these women I was. Some of them were years out from their surgeries, yet they still hung around. They made it their duty to ensure that other women didn't feel alone. I knew then what I had to do. I had to stick around after I was healed and whole again, in order to pass the knowledge and wisdom I gained onto other women who were going through the same thing I was. Being a Previvor is not something that you walk away from. You are ALWAYS a previvor. It's a never ending circle, and we have to support each other through this.

I promised myself two things right at that moment:

1- I'd start a support group in Memphis. I knew there had to be other women faced with these decisions that come with being high risk and I wanted to be sure to be there for them. Everyone deserves face to face support and I wanted to make sure it was offered.

Glad to say, we accomplished that with our FORCE group

2- I also wanted to help other young women who were facing these decisions. I knew from experience that there were completely different issues that go along with being young AND a previvor and I wanted to make sure to do my part to help those women as well.

One day, I saw a post from a girl named Liz, talking about a group she'd started on Facebook called Young Previvors. "Hmm...." I thought, "I'll check it out." I sent in a request to join, and sort of "lurked" there for awhile. You see, I'd completed all of my major surgeries already and was nearing the end of my journey. I wasn't sure if I could really even offer anything useful.

After awhile I decided to start posting. I'd respond to a few posts and made a few of my own. I started to realize that these girls were awesome! They were just like me! Trying to find their way in life, dealing with everything that goes with being in your 20's as well as dealing with being high risk.

Then, came the great complications of 2012. *SIGH* My infection earlier in the year and the hurried exchange of my implant in December. And they were there for me! I posted a message explaining what was happening and within minutes had several replies. It was quite a great feeling! (I admit I did feel slightly jealous it wasn't around when I had MY mastectomy)

By the end of 2012, I was posting on a daily basis. These girls had become my friends, my sisters. The ones I could talk to about anything, and strangely enough I had never even met some of them. (I did have the pleasure of meeting a few YP's at the FORCE conference in October). I have told them things I haven't told anyone else and I've never met with anything but love and support.

At last count there were 200 people who would say the same thing.

A few days ago, we learned that our group was disabled by Facebook. The reasoning was pretty vague, but the general assumption was that it was due to violation of Terms of Service. You see, there were pictures of all stages of breast reconstruction in our group. Members (including myself) would post pictures to show other girls what our reconstructed breasts look like. I cannot tell you how helpful it is to look at pictures, especially of people your age before such a big surgery. Anyone who thinks that deciding to remove your breasts is an easy task is seriously misguided. Seeing a picture, to just get an idea of what to expect is PRICELESS!

The group privacy settings were very strict and members were screened by Liz. Members were also aware of the chance that pictures would be posted. Anything posted in the group could only be seen by members of the group.

We are fighting SO hard to get it back. The group is truly a blessing for girls around  the world. In order for YP to continue to be so important, we need our group back! Apparently Facebook doesn't want to allow these types of photographs (since they are partial nudity really) but will in cases of breastfeeding or of other importance. We want to show them that they are SO important! And not sexual in nature at all.

We are waging a viral campaign to show Facebook how important our group is! Here is what you can do to help:

1- Pin under the hashtag #saveyp on Pinterest
2- Tweet using hashtag #saveyp
3- Like our public page on Facebook Young Previvors
4-  Share, share, share!
5- Send an email to: and/or

Thank you so much!

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