Here we go....Probably the longest post I do.

I am probably one of the world's worst bloggers.

I apologize to anyone reading this for all the long rambles, the bad spelling and the really scattered thought process I have. After reading other BRCA1 and 2 survivor's/ previvor's personal blogs though, I decided to begin "writing down" my own journey. I hope to be able to update how I am feeling from week to week... and if I'm lucky maybe even from day to day. This first blog is a really long ramble about why I am choosing to have a nipple sparing mastectomy and breast reconstruction. I am assuming that anyone reading this already knows about BRCA1 and 2. This isn't so much of an informative blog, as it is a way to vent and possibly connect with other people in my boat.

My name is Shannon, I am 28 years old, pretty goofy and BRCA 2 Positive. Growing up I always knew that cancer ran in our family, but I never really thought twice about it. My maternal great grandmother died of ovarian cancer, but I never met her so it didn't affect me. My maternal grandfather died from prostate cancer, I was maybe 3 when he passed away. My aunt whom I had only met once or twice when I very young had breast cancer in both breasts at different times in her 50's and 60s, eventually passing away from the second battle. My maternal grandmother battled fallopian tube cancer in the 1980's, they gave her months to live but she survived to later die of a stroke when I was 15. Sadly, I never got a chance to truly bond with her, with us living so far away and only visiting once a year.

Though I understood cancer, it had yet to hit close enough to home to truly shake me. Let alone think I would ever be at risk.

Then in 2005, my mom was diagnosed with breast cancer. They initially told her the mammogram showed a complex cyst in the upper left region near the muscle wall of her breast.  They said it was nothing and  " to just come back in 6 months" Thank God my mom listened to her primary care physician and got a second opinion. Due to her family history, they opted to do a biopsy. They said: "It's just a precaution, complex cysts are rarely cancerous...it's only about a 1% chance that you would come back with a malignancy".

The results came back malignant. Triple Negative. My mom was 55. The thought of her never getting a second opinion, going home, trusting the initial diagnosis to come back in 6 months. It makes me sick to think about it. After the diagnosis, my mom was tested for genetic mutations and tested BRCA2 positive.The lumpectomy she initially thought she would have, became a double mastectomy and hysterectomy. Luckily, surgery and 6 weeks of chemo saved her life. She has been in remission every since <3.

Anyway, this caused a ripple effect in our family. My uncle was diagnosed with prostate cancer before 2005 and decided to get tested as well after my mom's results and he tested positive. Sadly, he will probably be passing away soon after fighting for over 7 years. He was the only member of my mother's family that I ever truly got to know well.  My big sister decided to get tested in 2006 and came back positive as well. After 2 years of "false positive" testing she had a simple PBM in 2008 with breast and nipple reconstruction. Part of me, even after everything I knew, still thought she was crazy to do this. She was only 30! :/ Cancer effects old people. That was that.

I decided to get tested in 2008. I literally went into it thinking "Ohhh I look and act like my dad, I'll be negative." Why I chose to go down this road of ridiculous logic, I have no idea. Apparently I can be somewhat of an idiot at times. When I got my results, I couldn't breathe. The genetic counselor kept saying how sorry she was. Like I was doomed... like I already had something wrong with me. She explained that with this mutation and my family history it put me at extreme risk and referred me to a breast specialist. Though the news shook me, I still kept my denial going... "Whatever....I'm 26! Psssh."

But my breast specialist said the same things. She explained that age wasn't a factor. That cancer in high risk patients, especially BRCA1 and 2 could hit any age. And it is normally an aggressive form. That I was guilty until proven innocent in her eyes. Being high-risk was serious business.
She said with my breasts I had 2 options: extreme surveillance every 6 months pretty much forever until I probably get cancer. Or preventive surgery.  With my ovaries: preventive testing until I'm 40 and then they have to come out. She looked at me point blank and said that most of the time we can catch breast cancer with heavy survellience to give you a good chance of survival. But with your ovaries... it's just so hard to catch it in it's early stages in time to have a high survival rate...and your risk is just too high after 40 to keep them. They are like ticking time bombs.

I cried a lot over the next couple weeks. It was all so confusing. I was a healthy young girl, finally beginning to love my body, in a new relationship... only to be told my breasts and ovaries would probably betray me, at any age...maybe next year, in 5 years, when I'm 50. Who knows? So c'mon Shannon, let's make some life changing decisions!  Do you ever want to breast feed? Do you want kids? Will you ever get married? Would you still want kids even if you don't get married? Can you handle losing your breasts? Fake boobs!?  Early menopause?! Really?? Ugh....No pressure though!!

I planned on doing preventive surveillance forever. I'm young. "You can't have my boobs and baby makers!!" was my motto! "Screw THAT" I said!

This was how 2008 to 2011 went:
I would avoid thinking about any of it at all costs, until it was time to do preventive testing. Then I would sit around in an emotional panic, rambling on and on to my boyfriend, my family etc. about what I'd do if I got cancer. Crying thinking about it. I'd get called back in for every little thing. "We need to do another ultrasound." Very. Emotionally. Draining. The medical bills, having to pay hundreds to thousands of dollars each year with insurance premiums and deductibles constantly going up didn't help the situation either.

Then I had to get a biopsy last fall. That was a horrible month. Even though the biopsy came back benign as a fibroadenoma, it changed my thinking. "Could I put myself through this potentially ever 6 months, forever, until the big C gets me?" "Could I afford spending this kind of money forever?"  The answers all started to lean towards a big fat  hell no.

So, in January I started doing serious research and talking with my family. My boyfriend has been supportive from the very beginning. He has said from the get go of our relationship that he loves me and just wants me to be okay. He's with me through it all. My family all feel the same way. So after meeting with several plastic surgeons and  researching the different types of mastectomy surgeries over the last 4-5 months, I scheduled a nipple sparing PBM with tissue expansion for August 2011. I plan continuing surveillance with my ovaries until at least 35, and seeing where I am at then.

Every day since I have finalized it all I have had different emotions. I am just so ready to move forward so I can find closure and learn to love my new body and rejoice in the fact that my life won't revolve around this stupid mutation. I will beat cancer before it has a chance to beat me. An who knows, maybe I'll get the cleavage I always wished I could have, ha ha. :)


Again I apologize for my poor writing skills. I hope that if anything, I can help others by posting my emotions on BRCA2  and later on posting pictures along with a day to day healing log from my surgery.

:)X