My test results

About a week and a half ago, I was in between classes and checked my voicemail with the one minute I had to spare (usually I wouldn't but I saw the same number called twice so I wanted to make sure it wasn't an emergency)...and was caught very off guard with what I listened to. It was my genetic counselor, and he had my test results. I could immediately tell by the tone of this voice that it was...good news. Well, I was right - the results of my testing for the BRCA gene mutation were......negative! I can't explain the immediate weight I literally felt fall off of my shoulders, and the way I instantly breathed differently. Until that moment, I truly did not realize all I was carrying with me the last few months. I had plans with a friend right after my classes, and I didn't want to tell my parents over the phone...so I actually kept the information to myself for almost 24 hours! Didn't tell that friend or anyone...I am so glad I did that though, as it really helped me to fully process by myself, with no other input or reactions, just how significant it was. It was kind of nice to have it as my little "secret" for some time. It gave me a sense of peace and calm.... I felt so relieved and happy for the first time in a while.

Finally some good news. I say "good" news lightly though...anyone who has gone through this will understand what I mean by survivors guilt. It is hard to completely feel so happy about it, when it doesn't take away the fact that my mom is positive. It doesn't take away that she has to go through all these things that I am so happy I DON'T now have to. I still was excited though to tell my mom the next day, but also nervous because I felt bad (it is a natural feeling I know that many others in my shoes have had)...especially when the person you are telling is suffering from the effects of chemo and what the BRCA gene has brought upon her. When I told my mom, I could hardly get two words out before all this emotion came over me - I think that is the first time I have been overcome with such tears of happiness. I have never had that emotion before, and it was very weird - in a good way! My mom felt the same way and we both just let out all of the worry we were probably both holding inside...and it came out in very, VERY happy tears. My mom later said that my Dad keeps buying lottery tickets and is going to check them after her treatments are over, but she thought hearing my good news was like winning the lottery. I love that. AMEN!

I am so happy that I went through with this process, as it has made me a stronger person and taught me just how proactive I can be with my health. Even things on a smaller scale than genetic tests...simple things like being cautious of the foods you put in your mouth, or the amount of exercise you get each week. We all have the opportunity to take charge of our physical and emotional health. So do it. Be proactive. be aware. Go to the doctor. Of course cancer and illnesses can sneak up on anyone, and even the healthiest of people. And to that, I say f&^% cancer! That is what I like to say when I get angry about the C word. Sometimes there are just no words besides that.

I am glad I have this blog to document my journey, and to have to look back on for years to come. I hope another young woman out there googles the things I did a few months ago and comes across my blog. I hope it eases her worries, or at least reminds her she isn't alone. I hope it gives her strength and takes away some of the fear of the test or what may be. If I can help just one person, that is all that matters. And I hope to become a BrightPink PinkPal (www.brightpink.org) to help someone else, just like my PinkPal did for me. And if any of you out there are considering testing have any questions, and even on things I didn't discuss - please email me! I have probably researched and learned more than I'd like to admit!

I feel like I was given a second chance....before I ever actually lost a chance...if that makes any sense. I am so thankful for the strong circle of family and friends I am so blessed to have, who have helped me through this and who have leant a shoulder to lean on since my mom's diagnosis in January. Thank you for always listening :) XOXO

Jenny

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 :)

BRCA whaaaattt?

Well first, thank you SO much to everyone who has sent messages of support, encouragement, and gratitude toward what I am sharing via this blog – I had absolutely no idea how many people I would be able to reach. I have received emails from women who have been in my shoes already – and tested positive for the BRCA gene mutation - including a woman who opted for preventative surgery, but also a woman who chose not to. So it’s great to hear stories from both choices. And of course it has also been beneficial to hear from women who tested negative, too. Then also to hear from women who need to get tested but have just not been able to take that step yet (because it obviously isn’t always an easy one). I guess you could say someone from every choice or outcome.

Blog Shares! Bright Pink (organization which I discussed in my last entry) shared my blog on their Facebook page (they have over 18,000 followers) – SO cool, thank you! It has been so helpful to read stories from fellow Bright Pink ladies. I also received such a nice, encouraging response from Bright Pink founder, Lindsay Avner. It means so much to have this amazing organization behind me, helping me remember to feel proud for speaking up and sharing my story.

Then I received an email from a Myriad Genetics Patient Education and Advocacy Educator yesterday. I was shocked! Myriad is the ONLY company right now (I hope i've got that info right) who performs the BRCA genetic testing. I couldn’t believe that my blog had reached them. They would like to share my blog on their blog, and have me be a guest blogger. What an incredible honor!

For a split second it was a little scary when I was getting such an immediate, overwhelming response…because I realized just how many people may read this. Yikes…sharing everything…with the word. But then I hit myself and remembered that IS why I am doing this. To reach any and everyone who has been affected by this in one way or another. To be called things like “inspiring,” and “courageous,” over the past few days by some pretty important people, is beyond words. Because I just feel like an everyday, average person – who happened to decide to write my thoughts down rather than bottling them up in my chaotic brain!

Ok that first part of this entry took a little longer than I thought…now onto the bigger purpose of this entry. BRCA whaaaaat? I realize many people may be thinking what is this BRCA thing she is talking about! Well…everyone has the BRCA1 and BRCA2 genes. It’s people that have a mutation in these genes, who are at an increased risk of breast/ovarian cancer. I thought it would be easiest (and most accurate) to share the following from Mayo clinic - http://www.mayoclinic.com/health/brca-gene-test/MY00322:

“The BRCA gene test is a blood test that uses DNA analysis to identify harmful changes (mutations) in either one of the two breast cancer susceptibility genes — BRCA1 and BRCA2. Women who have inherited mutations in these genes face a much higher risk of developing breast cancer and ovarian cancer compared with the general population. The BRCA gene test is offered only to people who are likely to have an inherited mutation, based on personal or family history, or who have specific types of breast cancer. The BRCA gene test isn't routinely performed on women at average risk of breast and ovarian cancers. Having a BRCA gene mutation is uncommon. Inherited BRCA gene mutations are responsible for about 5 percent of breast cancers and about 10 to 15 percent of ovarian cancers. After having a BRCA gene test performed, you learn whether you carry an inherited BRCA gene mutation and receive an estimate of your personal risk of breast cancer and ovarian cancer. Genetic counseling is an important part of the BRCA gene test process.”

Another site with a wealth of information – Myriad (the company I mentioned earlier). If you click on this link, there is a simple chart that may help others better understand if they are or are not considered high risk. As you can see, it IS rare – so please don’t be scared by my blog or immediately think you need to be tested! According to Myriad, only about 7% of breast cancer and 11 - 15% of ovarian cancer cases are caused by mutations in the BRCA1 or BRCA2 genes. http://myriad.com/treating-diseases/hereditary-breast-cancer/

Lastly, my appointment with the genetic counselor is on Friday. Ill do a posting all about the appointment and what to expect, for all those wondering! I went through the counseling appt. part of this whole process last summer (mentioned in my first entry), but now that my mom tested BRCA positive, I guess I need to start the process over and do the initial appointment again. I realized today it will probably be completely different, since I am going into the appointment with new information and my risk of being BRCA positive is now 50/50. The actual test part (which ill do Friday as well) is just a simple blood draw. Well…there is no such thing as simple blood draw to me– I am sure it will be dramatic and ill think I am going to faint as usual.  My mom will be going with me so at least she can buy me some candy and orange juice ;-)

So…over the next few weeks I plan to do postings about – Genetic Counselor appointments; To know or not to Know (first hand examples from people); What happens if someone is BRCA positive – options, etc…and more. I also hope to have a few guest bloggers.

And of course the MOST important – please keep my mom in your thoughts and prayers (as so many of you already do every day), as she fights breast cancer for the second time. She had her first chemo treatment last week and her next will be in a few weeks. She will have a total of four treatments. She is doing great though and always in good spirits! :)

I wrote this blog last night and will post another one tonight (if I don't fall asleep after work - because I am exhausted from staying up too late browsing Pinterest lol) about my morning and something else I thought I would share.

Blog backstory and why I am doing this

This is difficult to get a few years of information and emotions into a few paragraphs...but I am going to try :) Then I can truly document the day by day journey, after I bring everyone up to speed on who, what, where, why....I am doing this.

When I was in high school, my mom was diagnosed with breast cancer at age 42. She had a lumpectomy, chemo, and radiation. Every year since then, I would get that twinge of nervousness when she had her yearly mammogram...but the more years that went on, it would get a little easier because I had convinced myself there's no way her breast cancer would return...ever, it'd been way too long! The thought would hardly cross my mind. In December of 2012, I even dedicated my winter dance recital to her and her 15 years of being a breast cancer survivor. Then ironically, just a few weeks after that....I can't explain the feelings and emotions I felt when she was diagnosed with breast cancer for a second time. Shock, fear, anger, fear, fear...Amongst everything else, I couldn't help but immediately wonder if she did have the BRCA gene mutation (BRCA1 and BRCA2 are human genes that belong to a class of genes known as tumor suppressors. Mutation of these genes has been linked to hereditary breast and ovarian cancer. It can increase a woman's chance of getting breast and/or ovarian cancer by up to 70% http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA.)* Why and how did she just happen to get cancer AGAIN (and a new cancer, not a reoccurrence) 15 years later? I had learned a lot about genetic testing and the BRCA genes over the last year and a half, because I had ironically already met with a genetic counselor to start the process of getting tested....which is where the next part of the backstory comes in.



Bright Pink Fundraiser

In late 2011, I learned about Bright Pink (www.brightpink.org, A non-profit focusing on early breast/ovarian detection in high-risk young women) from my good friend Lindsay and we thought it sounded like a great organization to get involved with, as we were both looking for a new volunteer opportunity. She had an aunt who was currently fighting breast cancer and I of course had my mom who was a breast cancer survivor (and on a sidenote, we eventually "hooked" those two up and they became friends and supporters of each other - I love connecting people)! Bright Pink was something we could both relate to and were excited to get involved with. It was thru Bright Pink that I gained a wealth of information about how to be proactive with your health, especially for women who have a family history of cancer. It is also thru Bright Pink that I was truly and properly educated on the BRCA gene and genetic testing. Every year, probably since I was 24, my doctor(s) would bring up genetic testing and ask if my mom and I had considered it, since she was diagnosed at a young age with breast cancer. I would barely let them finish speaking, and immediately say that it wasn't something I was ever interested in knowing. I remember at times getting so frustrated and fighting back tears, as they would continue to press the matter. "Why would I want to walk around knowing I was going to get cancer? Why would I want to wake up every day thinking cancer was looming in my body?" Those are the honest to god, truthful (and immature!) thoughts that used to go through my head. I would leave their office thinking who are these people that get this crazy test?

However, it did also take that same friend to get me to "see the light." I remember one night (I think the same day we discussed getting involved with Bright Pink), the topic of genetic testing came up...and I am sure said out loud all those crazy questions that usually just went on in my head with myself...for why I would never EVER want to go through genetic testing. She somehow easily changed my way of thinking, by making me look at it as a gift, not a death sentence (I know it sounds harsh, but its the honest truth on how I always felt about genetic testing). She made me realize someone who is BRCA positive is given the gift and opportunity to be proactive and in control of their health. It's a life saving information. (I'll discuss exactly what those proactive options are in a later blog entry). I think it was the fact that it wasn't a stern doctor or medical professional who only knows me from 10 minutes a year they see me....it was someone talking to me as a friend, giving me the straightforward truth in plain old simple words. I don't know if she realizes the impact that conversation had on me, or even remembers, but thank you ;-)

Bright Pink has a program called "PinkPal," which pairs women like myself up with someone who has already gone through genetic testing. I was paired up with Jaclyn in 2011 when I started to consider the test, and words can't describe how much help she was in just giving me the honest, straightforward truth about waiting for test results, her being diagnosed as BRCA2 positive, and decisions she now faces.

In the summer of 2012, I finally made an appointment with a genetic counselor, Scott (ill be happy to provide his name and more info once I get his "OK" to do so!) whom my new doctor referred me to. It was an extremely interesting and educational appointment, and in the end it was determined I only had a small chance of  the BRCA gene mutation (I want to say it was 11%, but I have to find that info again). I didn't leave there feeling nervous, scared, or anxious...I felt educated, calm, and empowered. Scott told me it would be best for my mom to be tested, not me. This is because if I have the BRCA gene mutation, it is obviously something I inherited from a parent (my dads family doesn't have much cancer history that I know of, but my mom's does - and since my mom had breast cancer, it would likely have been inherited from my mom's genetics). If my mom was in fact BRCA positive, it would be information she could use to share with other family members - to potentially save them from getting cancer (if they inherited the gene as well). So it would make more sense for her to be tested. Because if I tested first and was positive, it would mean I inherited it - so the first suggestion would be for my mom to be tested.

That summer I talked to my mom about her being tested, we found out her insurance wouldn't pay for it, I changed jobs and lost my insurance. Fall came....I looked into programs for genetic testing for non and under-insured people, and the usual "life got busy"....all of that over the course of six months, until January 2013 when it became a priority again after the shock of my mom's second breast cancer diagnosis.

My mom was ironically referred to the same genetic counselor that I met with (I really liked him, so I was glad!) and received the blood test to determine if she had the BRCA gene mutation. I'll be completely honest and just say I knew it was going to come back positive. I of course kept that to myself, as that is the last thing I wanted my mom to be worrying about as she started chemo and began her second fight with breast cancer. It was just intuition, I can't explain it other than that. I would tell her the test was going to come back negative, as there would be more breast cancer in our family if she was BRCA positive. My mom received her results this past Friday, and she is in fact BRCA2 positive. I tried to stay calm and remind my mom (and myself) that it is a GIFT of knowing - you have the chance to save your life. But I'd be lying if I said I wasn't immediately upset, worried, and angry - she just started chemo and now it's suggested she have surgery after that? Noone likes to see their loved ones in pain, and it's unfair to me that my mom has to go through all this. And then I thought about myself and if I have it - and immediately felt selfish for thinking about myself in that moment, as I think most women in this situation do. But after I got those emotions out, I remembered what's really important - we have this information that not everyone is so lucky to have. There are people in this world who are diagnosed with cancer when it's too late - and being diagnosed as BRCA positive...well, you have the chance to know BEFORE that happens! I will write a separate blog posting on what happens when someone tests positive and the preventative measures that are suggested.

So...that is the story of how I came to being tested for the BRCA gene mutation. I plan to get my blood test done this week, and then results will take about two weeks. Over the course of those few weeks, I am going to write about all of the topics related to this that too many people are afraid, ashamed, or embarrassed to talk about. I think it would be beneficial to others to share the step by step process before, during, and after - no matter if my result turns out to be positive or negative. I've always been one to speak my mind, so why stop now? :) What will I even do with the information if I test positive? Would I have a prophylactic mastectomy? I already think I know the answer to that in my head (I can't help but already think about what I would do), and I will share my feelings on it later. Some people may think I am sharing too much, but this is a topic that I wish more information was EASILY available on. The information and education IS definitely out there, but it's just not right in front of our faces. If I can encourage just one high risk woman to get tested, or help just one person understand "knowing is empowering," then my purpose of this blog has been met! It's also a great way to keep my (and my mom's) friends and family in the loop. I am hoping she will use this blog to share her story, too :)

I also want to say...My PinkPal (Jaclyn) and I exchanged emails from December 2011 all the way thru summer 2012 when I finally had my genetic counselor appointment. We keep in touch via Facebook too, and even though Jaclyn and I have never met, I know she is an amazing, inspirational, and strong woman! She always checked in on me and offered so much to support...and to me, someone whom she had never even met. She is the first person I contacted when I found out my mom was BRCA2 positive, and we are finally going to meet in the coming weeks while I wait for my test results. I highly suggest Bright Pink to any young woman, especially those at high risk or who are even just thinking about genetic testing. www.brightpink.org

A sidenote: Some may wonder why I was so adamant about genetic testing and learning so much about it, when (at the time) my mom only had breast cancer once and none of her sisters had had it. Many women with the BRCA gene mutation have a long line of breast cancer in their family, and my family doesn't necessarily have that. However, I can only explain it by saying I had a weird gut intuition the last few years. Something was telling me my mom (and possibly me) needed to get tested.