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.

Thursday, October 2, 2014

A Look Back

When I first was diagnosed with Cowden's Syndrome, I was almost ashamed of it. My entire life, while I was going through medical problems I felt like an outsider...this was basically going to seal the deal.

As I started going to doctor's appointments, I'd have to spend a good 15 minutes explaining what Cowden's even was. I guess I'd talked myself into believing it simply wasn't real....if doctors hadn't heard of it it must be fake right?

Then I started getting lump after lump in my breasts...and two very real breast cancer scares at the old age of 27. The doctor kept guiding me towards a mastectomy (he was strongly recommending it but emphasized it was my decision.) Part of me wanted to simply run away and never see that doctor again. If I ignore it, it'll go away right?

But I didn't. For the first time in my life I actually made a decision for myself. (And trust me, I tried to get other people to make it for me). However, this was something I had to do on my own. And the they history.

I'm 30 years old now and my mastectomy is merely a memory. A distant one at that. However, I feel like the very essence of being a previvor is engrained in my personality now. Making the decision to have a mastectomy was a hard, gut wrenching, soul searching one. But I did it. I took control and I did it. I wouldn't be the person I am today without having had made that decision.

There are days when I don't even think about my mastectomy. Week even. But there are women out there who are just now beginning this scary journey. Women who are a lot younger than I was. Preventative surgeries aren't for everyone. I always say getting your genetic test results is just the beginning. Now, you have the information and you decide how to use it. These women still need support. A place to go and ask questions, cry, laugh, vent without people thinking their crazy. (I'm having a flashback to a few weeks after my surgery and I'm sobbing uncontrollably. Mike is looking at me with a horrified look on his face and I'm insisting I don't know why I'm crying.)

During my surgery the FORCE message board was my rock. Those women were all significantly older than me, but I couldn't have done it without them. As I started to recover I saw a posting about a new Facebook group starting called Young Previvors. I was almost done with recovery, but I figured I'd check it out.

Needless to say, that group has become like family. I help admin a smaller sister group and offer help and insight where I can.

Starting this journey is hard. Staying the course is hard. This place will be a lifesaver because you can't go it alone.

For the rest of my life, I'll feel as if I'm connected to these women, this cause. I am and always will be a Previvor.  I'm a strong woman, capable of making the hard decisions. I am proud of myself for how far I've come, and can't wait to see where me and my 3 year old foobs go next!