Wednesday, March 31, 2010

To Cut or Not to Cut?

So, why have I chosen the surgery route to manage my BRCA status? I know that many people may think “What?! Are you crazy? You are going to remove perfectly healthy breasts?” And to be perfectly honest that thought crossed my mind before I knew I was BRCA1+. If you don’t have cancer, why would you do something so extreme? Well, there are so many emotions involved in a decision like this one. First, and a reason that has a HUGE impact, is my mom. She had breast cancer in her late 30’s and ovarian cancer at 45. She fought ovarian cancer for 4 ½ years by trying numerous types of chemos, going through multiple surgeries and even trying a bone marrow transplant. But even though it was caught “early” the ovarian cancer eventually took over. Conversely, she was a breast cancer survivor. She had a lumpectomy followed by radiation. So, one might think, okay, so your mom beat her breast cancer why are you worried about that? What about your ovaries? Well, those suckers are coming out as soon as my doctors feel comfortable about taking them out and not causing other problems due to the drastic reduction of hormones, etc. But that will be another topic down the road.

As for the breast cancer, yes, my mother found hers early. However, I have no way to know that I would be fortunate enough to not only find the breast cancer in its early stages, but also have it be a beatable form of breast cancer. Not to mention, if I get breast cancer I will want my breasts removed so I don’t have that constant threat of a reoccurrence. By then I will always have to worry and wonder if they did indeed remove all of the cancerous tissue. Are there some rogue cancer cells that sloughed off into my body as the surgery was being performed? Then of course, I would most likely need chemo and/or radiation on top of the surgery. Sounds like a blast, right? No, not to me. And this may seem like the glass half empty approach, but in general, I’m a pretty positive, optimistic person. This is me being proactive as opposed to reactive. I like being prepared. And knowing that my lifetime risk of developing breast cancer is about 87% I have chosen to reduce my risk to less than that of the normal population, which is about 12%. A wonderful woman who is also in my situation, gave me an example that I think is helpful when trying to understand the percentages. If you are about to board a plane and someone tells you that the plane has up to an 87% chance of crashing-it might not crash at all- but 87% chance it will. Are you going to board that plane?

Now of course I know I could be in that 13% that doesn’t get cancer at all…but I am just not willing to take that risk. I know I could hang on to “the girls” a little longer and still probably not have any problems with breast cancer, but right now is as good a time as any to kick this underlying stress and anxiety. I know I said I was a pretty positive person, but when it comes to cancer, not so much. I worry that I must be missing something when I am doing self-exams. Or, for example, following the few scares during preventative screening mammograms and MRI’s, I worried about if they were sure everything was really was ok. Did they truly understand my high risk or were they just assuming everything was probably ok because I was so young? Sometimes I feel like I am just waiting to get cancer…and that’s not how I want to live my life. I want to actually live my life and not be consumed by fear and worry.

My mom was a fighter. And I honestly am not sure if she would make the same choice as I am, but she might have if she had 1) been given the option and 2) knew it would give her a greater chance of living a longer, healthier life. Even if she would not have chosen this for herself, I am confident she’d support me in the decisions I have made for myself. As the surgery gets closer, I am positive I have made the right decision for me. Of course, that doesn’t mean I’m not nervous and scared.

Until next time, here’s to choices, decisions and silicone!

Monday, March 29, 2010

A Little Background

I apologize for this being so long, just wanted to start off giving anyone reading some background info to understand where I’m coming from. I’ve never done a blog before, but decided to start this one after my husband and sister provided words of encouragement. Maybe sharing my feelings about my BRCA journey will be healing for me and hopefully beneficial to others in my shoes. Perhaps it will be encouraging for others to know they are not alone on the emotional roller coaster that accompanies being BRCA positive. And perhaps others will find comfort knowing that there are others who understand the intense pain from losing someone you loved so dearly.

This is my first blog and my first posting. As I have stated in my “About Me” section, I am 30 years old and a BRCA1 mutation carrier. I am a wife and a mother of two boys (5 and 3). I lost my mother to ovarian cancer when I was just 18. My mother was 13 when her mother lost her battle to breast cancer. My grandmother was 3, when her mother lost her fight with “stomach” cancer. I have choices these amazing women didn't, and I choose to do everything in my power to spend a long life with my wonderful husband, and to see my boys get married and have kids. I choose to FIGHT! BRCA be DAMNED!

I am the baby of three girls; two of us are BRCA1 positive and one negative. My mother was 38ish when she was diagnosed with breast cancer, and 45 when she was diagnosed with ovarian cancer. She lost her battle to ovarian cancer when she was only 49. One of her sisters also lost her battle to ovarian cancer in her early fifties. Their mother had breast cancer at age 42 and died a few years later from the disease. My great-grandmother had “stomach” cancer, but the doctors now say it was likely ovarian cancer. Needless to say my family history of breast and ovarian cancer is very strong. I’m pretty sure nurses and doctors are a bit surprised when they ask what they think is a simple question; “Do you have any history of cancer in your family?”.

My mother’s doctors always told her there was a strong chance two of the three of us girls had a mutation…unfortunately they were correct on that stat. Deep down, I always had a feeling that I was going to test positive for a mutation. I was only 18 when we lost my mother. Several months after her death, I went to my new OBGYN and she suggested I get genetically tested. At that time it was so soon after losing my mom that all that I could think was, “Why would I want a test that is just going to tell me I’m going to die?”. I know it sounds a bit extreme, but from the time I was 14 years old, I had watched my mom suffer through chemo after chemo, surgery after surgery, and really did not want to be told that was my fate too. I waited until I knew I was done having children to get tested. Both of my sisters had already been tested, one positive, and one negative. I was 28 when I got my BRCA1 positive results and although I kinda figured, it still sucked. Along with the positive result went the slight shred of hope that maybe, just maybe, I wouldn’t have the same fate as my mom.

So, that brings us to today. I just turned 30 and my prophylactic bilateral mastectomy with reconstruction is scheduled for April 23, 2010. Deep down I always knew I would have the preventative surgeries, but I gave myself time to let all the information about being BRCA1 positive sink in. Right after I found out about the mutation I did lots of reading and research. However, I allowed myself to get caught up in work and family. Finally, last summer, I came to a conclusion about what I needed to do and when. I scheduled new appointments with a genetic counselor, breast surgeon and plastic surgeons and went to a young breast cancer survivor meeting. After many conversations (too many to count actually) with my husband, and notifying those close to me, I am less than four weeks away from my surgery date. I know I am making the right choice for me and my family.