Options and decisions...pondering what may be

This post is weeks late...but like I said a few days ago in my short posting, I didn't realize how mentally and emotionally draining this was making me. It was getting really hard to just easily sit down and write...anyways, I wrote this on and off last week.

This post will be about what exactly someone who is BRCA positive does, or rather what is suggested they do. I know some who read my blog have been there, done that...but then there are many who didn't hear the term BRCA until me - and I know the first thing that many wonder what happens after the results. Many have questions about it that they are afraid to ask...because, well, it may be embarrassing or just not an easy thing to talk about. So I hope to make it plain and simple :) Especially after I accidentally saw a picture on Pinterest a few weeks ago, of a woman who had a mastectomy - and she had no nipple. There, I said it! That sent me into a complete internal freak out - it may sound immature to say this, but I wish I never saw that picture. I had bad dreams for many a nights after that. In my head, I had thought a mastectomy was literally like taking the stuffing out of a pillow...nothing looks different on the outside. Then you stuff the pillow with some fake stuffing. Make sense?

When a woman is diagnosed as BRCA positive, her chances of developing breast cancer in her lifetime are up to 87%. Therefore, many BRCA positive women choose to have a double mastectomy - removal of both breasts. A mastectomy is the removal of the whole breast. There are five different types of mastectomy: "simple" or "total" mastectomy, modified radical mastectomy, radical mastectomy, partial mastectomy, and subcutaneous (nipple-sparing) mastectomy (from breastcancer.org). More complete descriptions can be found at http://www.breastcancer.org/treatment/surgery/mastectomy/what_is. Can you imagine what you would do? Take a minute or two to really put yourself in those shoes.

If a woman chooses to have a mastectomy, she can either 1) get breast implants  2) have fat from her tummy used to make new breasts (I forget what the technical term is) 3) no reconstruction. It is a very personal decision and one that everyone is entitled to their own opinion about, and I am going to share MY opinion and how I feel - I am not a medical professional so I am sure I may say something incorrectly, so I apologize if so - but I am explaining it the best I know - and in the simplest terms :)

It is also suggested that women have both their ovaries removed, since being BRCA positive also highly increases a woman's chance of developing ovarian cancer. This is called a bilateral oophorectomy. So, now someone is faced with having two of the things taken away from them that make them a woman? Again...what would YOU do? It's hard to even think about it when you are so far removed from it, but now I have to think about it knowing I have a 50% chance of having to make this decision. It is just really difficult to process.

Of course, the above are suggested options, and every woman's situation, family history, health, etc. is different. The other option would be to not have either of the preventative breast or ovary removal surgeries, and to just monitor their breast/ovarian health very closely with regular screenings: mammograms, MRIs, ultrasounds every 6 months to one year. And for ovarian health...I've been told that the blood tests and ultrasounds for it, are really not 100% accurate. But, like I said, monitoring it rather than removal is of course an option. The negatives of monitoring...well, I think are pretty clear. You could be the small percentage of BRCA positive people who never develop cancer (they obviously have to exist!), or you could develop cancer - I know how I am and I would constantly beat myself up for not having preventative surgery. I actually came across a blog recently about a woman who that happened to. And it was heart wrenching to read. I could sense the extreme pain, sadness, and regret through her writing. It really made me think.

Please take 2 minutes to watch - "Decoding Annie Parker" trailer

And me...MY stance on it - it has changed a few times: Before my mom was diagnosed as BRCA positive, and it had merely been a distant "what if" - my instant (and not well thought out) thought was, well I'd probably have my breasts removed and "just get some new ones." I hate my tummy anyways, so maybe they can take some fat from there and give me a nice tummy tuck, too! This is when I thought breast removal was like the pillow stuffing example I gave earlier. And yes, I do feel like an idiot for not realizing what exactly a mastectomy was!

Since my mom was diagnosed as BRCA positive, and I now know my chances of inheriting it are 50/50: After all the research, stories I've read and heard, hours upon hours of time I've had to truly realize all the physical, emotional, and mental stress/trauma a double mastectomy can have on a person...I nearly lose my breath thinking about it. I have had many moments of sheer panic and anxiety, once I realized just what exactly a mastectomy is - and saw photos. I know that sounds dramatic, but....take a moment and look at your chest. Those two things make you a woman. They are part of YOU. You wait years to get them when your younger...and then they can be taken away so quickly? You have a love/hate relationship with them...they are too small, they are too big..Sure, they are "just" a physical outward appearance, and what is most important is on the inside...blah blah blah. Well you know what, I like them and I don't want them to go anywhere! I also learned many women lose their nipples during surgery, often they aren't able to be saved. I cant imagine what I'd feel not seeing what I see now everyday. I feel terrible saying all this because I know there are women who do face this every day. But I am sure they felt the way I do right now at one point. And of course you cant help but think what a future husband would think. Women who are going through this who are already married are fortunate to not have to "explain" any of this to new boyfriends. How would I even begin?? Its hard enough to type about this stuff....let alone talk about it to people....let alone talk about it to a MAN??! This may sound so superficial, but any woman would be lying if she said she didn't think about that. I am just saying it out loud :)

Anyways, as of right now, my decision would be to NOT have preventative surgeries anytime soon if I am BRCA positive. That doesn't mean I won't in the future. I just don't believe that I have the strength to make that drastic decision to remove my breasts and/or have my ovaries removed at 32 years old. I have tears coming down my face as I type this. It makes me angry, it makes me think how unfair life is, and how many unfair cards I feel I've been dealt...and I really don't want to be dealt this one. I am a positive person, I am the one my friends know can always the positive spin on a bad situation. But this I cant lie - it makes me angry that my mom has cancer for a second time, that she also is BRCA psotiive...it makes me angry I even have to talk to someone about ovary removal, when i haven't even had kids yet. I am the girl who has dreamed of being a mom since I was a little girl, and I never thought id be the one in my 30s without kids yet. And now I may have this roadblock too?? Roadblock as in - if i am BRCA positive, I now have to consider whether i'd want to risk passing on the genetic mutation to a child. The other roadblock would be potential ovary removal. Why? Such is life! (I do have a blog entry written on this, that i may post tomorrow). I have had many pity parties with me, myself, and  I over the last few weeks. I do know the positive spin out of being diagnosed as BRCA positive - is that you are blessed with the information to potentially save your life. But it will still plain old suck. Right now, I feel testing and monitoring would be sufficient for me - for now.

I am pretty sure by age 40 though, I would opt for removal. Weird and random thought...I cant help but already think about the fact that I'd be the type of person who would hate the feeling of implants and would probably be so sensitive to the feeling of them and want to rip them out!  That is just me and my personal opinion. I am sure my words are offending one person or another, but this is how I feel and I want to be able to document it. And even though I feel very adamant about my feelings in this moment, I am aware my decision may change once I find out my test results.

But of course, first and foremost in all of this is my mom, and trying to help and be there as much as I can while she undergoes her chemo treatments - and keeping positive, fun, and laughs around! So as always, please keep her in your thoughts and prayers. Instead of always wondering why my mom has cancer again, worrying, or being angry about how unfair it is, I am trying to not focus on that because its something I, or anyone, obviously cannot change. But I may have the opportunity to change - or rather, control - my future health.  Whether this BRCA mutation is in my DNA or not...I can't change so there is no use being angry or confused about it....because I was born this way. :-)

Checking in...bear with me!

First off...I feel terrible because I haven't written in a while, and I made a plan to write about a number of things - and to post every few days. I feel like I've let everyone, including myself, down! But to be honest, I needed a break from talking about anything that has to do with the word BRCA, breast, or cancer. I've just been exhausted and overwhelmed in every way, especially because this is also a busy time with work for me (recitals in April, May and June...already making fall schedules, etc.). So, bear with me as I finish up a blog post in the next day. Thanks everyone! And no, I do not have my results and will probably not have them for a few weeks.

XOXO
Jen

Genetic Counselor appointment and test....and reality

I know this is a long entry...but a lot to share from a few days, and I don't know how to keep it short. So thanks for reading :)

I know this is a few days late, but I had to take a mental break from thinking and talking about this for a few days. Reality hit me like a ton of bricks....which explains the huge headache I had for a few days....it was all bottled up in there, but at least its out now and I feel better. The point of this post is to talk about my appointment on Friday (let me first remind everyone again, I wont know the results for a few weeks), but I am going to start with Thursday.

Thursday morning I had my annual mammogram appointment - the timing of this has nothing to do with my moms recent breast cancer or BRCA2 positive diagnosis - this just happens to be the time of year I get one. Most doctors suggest women with a family history of breast cancer (especially since my mom was diagnosed at just 42), start getting mammograms at age 30. So, this was my third one. I've never been worried or nervous the last two years I had one, hardly thought twice about it. I was usually more concerned with squeezing (um, literally) the appointment in during my work day. Since most of my friends haven't had one yet, it was always fun to be the first to tell them what it's actually like to have your boob flattened like a pancake! However....Thursday was different than every other year. I felt that terrible anxious feeling in the pit of my stomach, as somehow the word "hospital" looked and felt different then it usually does. I had tears welled up in my eyes trying to fight them back as I checked in. I felt sick to my stomach like all the tears were about to come flooding out. I also felt selfish and stupid for feeling this way...I don't HAVE cancer, I am lucky.

I realized everything about my mammogram and the hospital felt so different because it was the reality that this could be my life every 6 months, getting mammograms, MRI's, ultrasounds, etc. Or this could be me at the hospital having a lump removed. Or this could be me at the hospital getting chemo one day. It was just that moment when I realized exactly what was going on...all week I would act to everyone else as if I was fine and it wasn't a big deal, it was a blessing to know if I am positive....blah blah blah. You know how if you say something out loud, sometimes you can distract yourself from the reality that it really is? I let out a few tears in the car by myself, and went about my day.

The appointment with the Genetic Counselor was at 1pm the next day, Friday, and the feeling in the pit of my stomach from the day before was still there....times ten. I did not want to go, I kept fighting back tears while I was getting ready and was 10 minutes late getting there because I was procrastinating so bad. I did not understand why I felt this way. What was the big deal? I wasn't even finding out anything today, just taking the damn test! Now I realize it was because I knew I was going to have to talk about it. I met my mom there and had to keep thinking about Kristin Wiig SNL (Penelope, the One Upper - my favorite... http://www.hulu.com/watch/194734) skits so I wouldn't start crying. I always think of her when I need to laugh because I just LOVE her! And a sidenote - last year when I met with the GC (genetic counselor), I remember thinking "counselor...why do they call them that?" Sounded so dramatic. I thought they should be called a Genetic Specialist or something. That sounded better. I never thought of it as someone who counsels you...well I get it now.

Within two minutes of being in the appointment, I completely broke down, crying hysterically...like that uncontrollable ugly cry. Since I am not hiding anything in this blog, that is the honest raw truth. I feel like Debbie Downer, but that's what happened :) All it took was for him to say "how are you doing?" Or something like that. It all came flooding out. I know I was not just diagnosed with cancer...and that there are plenty of people out there (like my mom!) who ARE currently fighting the disease. So its hard for me to discuss these emotions because this is "just" some test I am taking to see if I have a higher chance of developing cancer in my lifetime...right? No, its NOT "just a test." It IS a big deal. It is life altering information. People who are BRCA positive have up to an 87% (I keep reading/hearing different percentages. Chart above from Myriad.com) chance of developing breast cancer in their lifetime. People who are BRCA positive choose to voluntarily have their breasts and/or ovaries removed, to save themselves from developing either of these cancers. They use their knowledge of knowing as power...which not everyone is blessed to know or have. People who are BRCA positive can pass that mutation on to their children (I do not have kids yet, but its something I do want). I have a 50/50 chance of being one of those "people," who will face those decisions. The GC helped me realize its OK and NORMAL to feel what I'm feeling and what a huge impact it really does have on ones life. The results can affect someone's life immensely. I also haven't wanted to get upset in front of my mom, because the last thing I want is her worrying about me. I know its OK to show your emotions, but I have just been trying so hard to be strong for her. We spent about an hour there, and I felt a lot better when I left and am SO thankful doctors do not simply just give people a test in their office and then call with the results. I can't imagine...I would be completely uneducated on the the before, during and after process if I hadn't met with a GC. Maybe doctors do offer that option actually...but I would NEVER ever suggest it to someone. The actual test, done at the end of the appointment - was surprisingly NOT a blood draw - they can administer the test by blood draw OR saliva sample. I do believe it depends on if you are the first person in your family being tested, which is why I was able to do the saliva way. On a funny note...it was the oddest test - the kit comes with mouthwash, a plastic tube (to spit in), and mini cup (to pour mouthwash in). I had to swish around the mouthwash for 30 seconds, spit in the tube and then "gather up" more saliva in my mouth with my tongue...and spit again. Repeat 3 times. My mouth was on fire after! At least it made for a good laugh...what a weird little process!

The appointment was a lot different than mine last summer, actually completely different - the one last year was spent discussing family history and the GC making a chart of all that info, discussing statistics, costs, etc. An extremely informative appointment. But since I already did that last year, and now that my mom has tested positive - there was no need for discussing history in the family of cancer and all that. But for those of you who were wondering what a typical GC appointment is like, because you are thinking of starting the process...I am thinking I could do another post, and also discuss costs and insurance coverage. My test results should be ready in 2 weeks. They do not tell you anything over phone, they will call to set up another appointment. I am hoping it falls during my spring break at the end of the month, as I cannot imagine the anxiety ill feel going there...considering how hard it was to just go to the appt/test.

On the topic of exactly WHY I got so upset and why this is a hard pill to swallow....I am going to discuss all the preventative measures someone who is BRCA positive takes a different day - and what I, personally, think I would or wouldn't do. Too much info for this post. And quite frankly, not something I am ready to write about yet because that is the reason for my little breakdown. I can talk about it to my close friends, but not something I am ready to share with everyone just yet. I am so thankful for all the people in my life who let me vent and talk about it, and don't judge me for how I feel and are able to put themselves in my shoes and realize what it could mean if I am BRCA positive. I am sure people going through this hear others say "relax," or its not a big deal, don't worry"...but it IS a big deal, and, everyone deals with things differently. I am thankful for the friend who sat through my tears and listened Friday, when I thought I had gotten it all out. it was like part 2. I think I needed someone to say all the things to, that I hadn't wanted to ask or talk to the GC about yet...until I know if I am even going to be positive. There were certain things I didn't want to discuss with the GC yet, because why make myself even more anxious than I already am. It would become too much of a harsh reality if I did.

Oh and my mammogram was fine, nothing to report - but I DO have a funny story about it...ill save for another time/post...when I tell it to people they laugh hysterically, so why not share...laughter IS the best medicine :)