Turning the Page; Chapter Two

I'm back!  And what a whirlwind the ride has been!  I woke up ready and armed for my first of many annual mammograms to come, prepared to do what's best preventively for my health.  I had no idea what was awaiting on the other side of the Monster Mash (my nickname for the Mammography machine).

Well, three clinical breast exams, a DNA test, thousands of hours of research, a dozen anonymous web-friends later, and more scientific knowledge than my K-Bachelors degree education provided me and I finally feel like I'm at the next chapter.  Let's call it: Surveillance:  The next stage in my fight to prevent Breast Cancer.

I met with Heather the NP today and all's clear.  I have some seriously dense (and a bit sore) tissue near on the outer parts of my breasts (let's say the 3 and 9 o clock) but it's nothing to be concerned about.  I'll have my first MRI next month as scheduled and hopefully next time I'm back in my NP's office it'll be October and I'll be thinner (Goal:  12 lbs before summer).

Thanks for riding the ride with me.  Hopefully it's smoother on out from here.

Guilt

I know this isn't a logical emotion, I know I cannot control the health or happenchance for my friends or my family.  But today, I feel guilty.  I feel guilty for being healthy.  I feel guilty for having the opportunity to use genetic testing to find out my real risk, when so many other genetic cancers do not have access to the same technology.

In the aftermath of my own very good news (BRCA neg), I have learned that a dear friend of mine has Cervical Cancer.  Her family's history with cancer looks like what many BRCA pos women experience, mothers, grandmothers, aunts all plagued by the same disease.  So here she is 29, and headed in for a biopsy tomorrow.  A biopsy who's results could change her entire life, it will determine if she will ever be able to bear children or not, it will determine how much of her cervix they have to remove in order to get the cancer out.  The good news is she shouldn't have to undergo chemo, or radiation.  Just the surgery.

So today, I feel guilty.  I feel guilty for having the opportunity to celebrate the known risk of my life, when so few others in similar positions have the same opportunity.

I get to keep my boobs!

Today was the big day, aka Genetic Test Results day and there is No Mutation Detected!

That's some girlfriends and I jumping because we're silly -
we can say for this blogs purpose we're jumping for joy!

 Anywho, so because my Aunt has yet to test for the mutation, I'm technically an uninformed negative.  Because of the family history, until my Aunt tests also for the BRCA mutations we don't know what the cause of the family cancer is.  If my Aunt tests negative, there is a likelihood, there is something undiscovered that created the pattern.  If she tests positive, there is a mutation and I am just not a carrier.

So the good news here is that my risk has dropped!  I was a 32.92% risk pre-testing (that calculated my risk for having a mutation and my other risk factors).  Now I am about a 24-25% risk (it'd be 23-24% if I didn't have big, full boobies).  So I no longer have a 1 in 3 chance, now it's only 1 in 5 (yes, if you are normal it's 1 in 8).

What this means for me is all state of mind really.  I still need an MRI in December, and an annual Mammo, and I'm still enrolled in the high risk program.  I'm not out of other treatment option woods yet either - but unless things change, I can keep my boobs:).  If you have never met me, you won't have any idea the amount of relief this gives me.  I really wanted to keep em all along!

Its funny, I really thought finding no mutation would be anti-climatic.  You know, the buildup of stress and tension and anxiety and then nothing really changes.  But the sense of relief today is so high!  I'll save the anxiety for my MRI in December:).

When dreams come true, it's not always a fairytale

A couple of weeks ago (just before my last 2 posts) I dreamt that I received a bill in the mail for my BRACAnaylysis before my Genetic Counselor and I met to follow up on my results.  In my dream, I received only a bill for the BRACAnalysis and not for the BRACAnalysis Rearrangement Test (BART).  Because BART is only performed when the BRACAnalysis is negative, I knew my results were a positive for 1 or 2. 

Well, today I received 2 bills from Myriad and haven't heard from my GC.  Fantastic!  I assumed.  Two bills, two tests.  Until I read them and realized the totals aren't what I discussed.  So with some further research (damn Type A personality) I learned that in April of this year the price for the Comprehensive BRACAnalysis was raised to $4,040.00.  Well, after totalling my bill it comes to $4,040.00 even.

And of course its Saturday, so if there is a BART bill coming in the mail, I won't see it for at least 48 hours.  Karma plays for the other team today.

Do you ever have the feeling you're being followed?

I swear, between having blood drawn for the BRACAnalysis and waiting for the results, genetic testing has been following me.

A girlfriend is having it done to confirm paternity of her child.

A woman at work was tested for the BRCA after she had a pre-50 BC diagnosis.

Meredith Gray is being tested for the Alzheimer's Gene.

And it's October, so pink is everywhere.  I can't turn a corner, go into a store, read the news, or even go into a damned bar without seeing pink.  I suddenly understand pinkwashing.  But I'm not self-important enough to call October bad for my own sake.  Awareness is important, and breast cancer does not discriminate.  It hates all women equally, some of us are just more vulnerable victims.

A letter for my Genetic Counselor

Dear Genetic Counselor,

Thank you for taking the time out to meet with me a few weeks back to discuss my genetic testing options.  I feel like we had a great talk, and I left feeling great about going forward with the test, although I had other options.

NOW CALL ME BACK WITH MY RESULTS ALREADY!!!!!  THE SUSPENSE IS DRIVING ME BATTY!

Thanks again, I look forward to speaking with you soon.

Kimberly :)

Lumps and Bumps: Is it all in my head?

My facbook status today reads:  October is Breast Cancer Awareness Month:  Save mans real best friend and perform a monthly self breast exam!

And that's because last night I did.  I have been pretty vigilant at SBE's for a long time now.  I noticed a change, or a lump if you will, two years ago, reported it to my doctor, had an ultrasound, the technician treated me like I was too young to be concerned, and all in all the results came back negative.  This experience compared to my first mammogram has shown me how important your medical provider is.  You must be your own advocate - or change doctors until you find one that fits with your priorities and needs.  The ultrasound tech two years ago commented on my "breast density" and when I inquired further with her, she told me it really wasn't a big deal.  This was a year following the release of a study in the New England Journal of Medicine that confirms high tissue density does lead to higher rates of breast cancer!  Needless to say, I won't be returning to that hospital for my breast care - ever.

So last night again, I noticed a change in my tissue.  I can't tell if it's a lump, or a bump or what.  I can feel a definite indent that is not present elsewhere on either breast.  I will be emailing my Nurse Practitioner to see how she feels I should follow up.  I am still awaiting my BRCA test results, and will schedule a MRI after those are received.  But I can't help but wonder, did I notice this change last month and not take it as seriously?  Am I creating this in my mind because this is all I currently think about?  At what point am I no longer re-acting to the changes in my life and being truly proactive?  Am I seeing things that aren't there because I'm more sensitive?  I don't know.  We'll see what Heather says.

Frick and Frack; BRAC and BART

"Frick and Frack" has become an English slang term used in two ways. One is to refer to two people so closely associated as to be indistinguishable; the other way is as a term of derision for any two people, on par with calling one person a "Bozo" or three people "Stooges".[1]

BRACAnalysis is the typical compBRAC (comprehensive BRCA analysis) test for people being tested without a known mutation in their family.  It's the test I knew I was having.  It costs approximately $3,400 at Myriad Labs, who is currently the only lab legally able in the USA to provide BRCA testing.  The comprehensive BRACAnalysis scans your DNA (Chromosome 17 and 13) for the 5 most largest and most common gene mutations. 

You can imagine my surprise when I spoke with Myriad Labs today and learned that two tests have been ordered to thoroughly exam the threads that make me uniquely me:  BRAC and BART.

BART or the BRACAnalysis Rearrangement Test as it is officially called, is a second genetic assessment for some high risk women who's BRACAnalysis comes back negative.  BART looks for additional arrangements of my DNA within those two mutations that may also lead to an increased risk for BC.  In order to qualify for a date with BART one must:

1) {come} from families with an inherited pattern of cancer but no identified mutation, and 2) whose family history meets certain criteria, and 3) whose initial testing produced a result of either “no mutation detected,” “genetic variant of uncertain significance,” or “genetic variant, favor polymorphism.” [2]

If you are considering the Comprehensive BRACAnalysis please keep in mind that BART, while extremely similar to her sister BRAC, is a different test that a.  comes after a negative result in BRAC, and b.  costs additionally.  Based upon my personal out of pocket for the second test, I'm assuming in the $600 range.

[1] Source:  Wikipedia
[2] Source:  Facing Our Risk for Cancer Empowered (FORCE)

Post Testing: The "What if" factor is gone!

My appointment with the geneticist went great and I feel great!  I have decided to go forward with the test.  In a perfect world, my surviving relative would be tested, and if she were BRCA +, my father would be tested, and if he was also BRCA +, my sis and I would test.  In reality, my surviving relative and I don't speak, my father is retired, and I am still at risk. 

I had my mind made up for the most part before the appointment.  It was important to me to feel like I am doing something, anything, to fight my predisposition to cancer and to be proactive in staying cancer free.  By testing, if my results are an uninformed negative, my surveillance plan stays the same - the exact same as it is had I chosen not the test.  But I have gotten rid of the "what if" I tested factor.  I am taking a step, a step that I can control.

I also plan on using this, regardless of my results, to hopefully inform my cousins who may also be at risk.  I intend to reach out to them either way and share my results and why testing is important.  If there is a mutation in my family, even if I don't have it, it needs to be found so everyone is aware of their personal risk.

I also realized, and it was reinforced during my appointment, that I'm actually not afraid of being BRCA +.  I mean, don't get me wrong, I'd much rather be back at the point in my life where cancer wasn't something I worried about, but I am much more afraid of having an increased risk and not knowing.  If I know I have an elevated risk, like that with BRCA+ I have a calculated, identified risk with multiple (although not preferable) treatment options, for lack of a better word.

I'm also glad I did as much research as I did going in.  I felt confident in the process, my potential results, and how I would feel about the outcomes.  Now, for some people, research before the decision (the shirt before the shirt as they would say on Jersey Shore) may seem excessive and cause more concern.  For me, it was calming.  I believe that knowledge is power and the more I know, the better I feel.  Make sure, if you are approaching testing, you know how you typically problem solve and go about it the same way.  I'm glad I did.

I'm not sure what result I am hoping for, but I know I made the right decision for me and knew I had to test when the GC said to me:  "You know, some people find a certain amount of bliss in ignorance."  I immediately responded:  "I am not that person."  This is the best decision for me.

36 Hours and Counting

I'm 36 hours away from my appointment with the genetic counselor.  I've been reading and preparing for weeks and I can't come up with a single question to ask and I feel so unprepared.  I know I've read and researched a lot, and I mean a lot, since my NP called me on August 7th to recommend I make this appointment, but how do I of all people draw a blank?  I'm not a quiet person, especially not as a patient.  I am probably on the total opposite side of the spectrum, borderline obnoxious, when it comes to knowing everything, and I mean everything, a doctor is doing.  It's my health and body damn it and I will not apologize nor am I ashamed that I am a nosey patient.

So, why oh why, am I staring at a blank pad of paper, mind empty? 

According to the hospitals genetic center this is what I am to expect:

At the time of scheduling the appointment for the first visit, a second consult appointment will be schedule to review the test results. During the patients initial visit to the clinic, a genetic counselor will include a review of the personal and family medical history, a discussion of the role genes play in the development of cancer, and basic genetic concepts. A personalized risk assessment for hereditary cancer, a description of the genetic testing process, as well as information about cancer risk reduction and prevention strategies are discussed in detail. The family history is carefully assessed and the risk of carrying a mutation is determined and fully discussed.

Most health insurance plans pay for these tests, but not all do. We will help with the preauthorization process and determine the level of insurance coverage for testing. If you have an HMO insurance, it is your responsibility to obtain a referral for genetic testing prior to our ability to check with your insurance.

An appointment with the Cancer Genetics Program consists of a consult with both a genetic counselor and physician, and possibly a blood draw, if testing is pursued. There is no need to fast prior to the blood draw. The initial consult lasts around an hour to an hour and a half, depending on the questions that arise. Most, but not all, insurances cover the cost of this office visit.

Test results are available in two to five weeks (depending on the test(s) ordered). Results will be discussed in details at the follow up appointment (we give test results in person, and not over the telephone). We then have a thorough discussion about future management recommendations and risk reduction strategies, as well as family dynamics.

Ah well, here's to October 28th - ish!

Figuring it out

I've been talking this whole 'bidness' through with a friend (thanks) and have stumbled upon some Aha! moments that I want to share here.  Forgive them, because they've been cut and pasted from emails :)

About the test and my personal risk:  I am being tested for a gene mutation that could raise my risk up to 87%.  It is not a gene that causes breast cancer, it is a gene mutation that prevents my bodies natural resistance to tumor growth in my breast tissue.  There are unrecognized gene mutations that do the same thing as BRCA 1 or 2 that have been identified and have not been identified that also raise risk an unknown amount.  That is why an overall family history of cancer is important to a geneticist to study.  BC is also linked to ovarian, prostate and colon cancer.  I have prostate and colon cancer family history as well. 

It's not my risk that totally concerns me.  Clearly, I got my first mammo at 30 because of my risk.  Here's what unsettling, the reality of said risk.  Whether my risk is 33% or 67% or 87% (highest risk % available) my "surveillance" options are the same because risk is so difficult to manage.  Couple that with being 18 months from the age of cancer onset in my family and it creates a scary situation. If my Grandma had a mutation, my dad had a 50% chance of also getting it.  If he did, I have a 50% chance of getting it from him.  Right now, based on that alone I have a 25% chance of gaining the mutation - which is unrelated to my overall 33% risk assessment.

I'm not afraid I'm going to get BC and die tomorrow:  Truth be told, I have (in the back of my mind) always assumed I would get BC at some point in my life.  Am I afraid of death, as a general idea?  Yes, absolutely!  I'm way too cool to die, clearly:).  Will I die eventually, yes, obviously.  But let me make this clear, my frustration, emotions, nerves right now are maybe 2% because I think I'm going to get BC and die tomorrow, and 98% for the road there.

Surveillance:  While it's great that science allows us the opportunity to asses risk and catch cancerous growth quicker than ever before, it still has a long way to go when treating BC specifically.  Surveillance is the same whether my risk is 33% or 87%.  And prevention options are surveillance, early menopause, or a mastectomy.  The only difference, is someone with an 87% risk would also likely go through preventive chemotherapy.  Yup, that's right preventive chemo, Tamoxifen.

As you age, you expect to see more doctors, have more appointments, begin to worry about cancer etc.  Most women begin mammograms at 40 and everyone begins checking (or should) for colon cancer at age 50.  I'm only 30!  I thought at 30 I would have my usual annual exam plus a mammogram annually.  Now, I have my annual, then a mammogram 3 months later, than I meet with my NP for a clinical exam, then an MRI 3 months later, and on it goes.  It's a lot for a seemingly healthy 30 year old to go through.  It's a big change.  Most women my age don't have to actively worry and fight cancer.  And while I've known for about a month now that I do, it's been one month out of 30 years!

Why I'm doing so much research now instead of waiting for my results: 
I didn't research this extensively because I'm a worry wart.  I researched this because if I am positive for a mutation or have an elevated risk, I want to know what my answer to that problem is before it's my problem.  If my immediate response that day is:  cut off the girls, I want to make sure I thought that was an appropriate response when I doubted I would have to make that decision.  I also want to know what to expect either way.

And, I should say, that because of my recent research I have uncovered a whole community of women whose strength, and diligence, passion and compassion has inspired me and whose stories can be used as lessons across all problems in our lives.

Preparing for the Genetic Counselor

In 9 days I take a test that only has 3 results.  I remain at 33% chance of BC in my life time, I increase due to some mutation not related to the BRCA gene, or I have one of the BRCA gene mutations.

In cases in which a family has a history of breast and/or ovarian cancer and no known mutation in BRCA1 or BRCA2 has been previously identified, a negative test result is not informative. It is not possible to tell whether an individual has a harmful BRCA1 or BRCA2 mutation that was not detected by testing (a “false negative”) or whether the result is a true negative. In addition, it is possible for people to have a mutation in a gene other than BRCA1 or BRCA2 that increases their cancer risk but is not detectable by the test(s) used.  - from www.cancer.gov

The whole point of this test is to determine your risk level as accurately as possible so that you can take the correct preventive measures.  I don't want to get to cancer!  I am 18 months away from the beginning of my family history with breast cancer.  I want to stop it by any means necessary and if I have the opportunity to do so, I will.  Maybe that sounds severe or exaggerated but I wouldn't play Russian Roulette with a gun 1/3 filled either!

I know I could skip the test and continue routine surveillance, but that doesn't sound right for me (although I foresee a lifetime of it anyways).  A new doctor appointment every 3 months for the rest of my life spent waiting to hear:  You have breast cancer.  No thanks!  I don't want to detect it early, I don't want to get it and survive, I don't want treatment, chemo, radiation, I don't want cancer period.  I want to go back to the day that I only needed an annual mammogram. 

And as much as I don't want to wish BRCA on anyone, let alone myself, knowing I'll never be a true negative makes me want to be a positive.  I have an actual answer then, I have real numbers to work with, real risks, real outcomes, not hypotecticals based on a high risk.
*Exhale*  Back to my list of questions for my genetic counselor.

The term Previvor

This is copied and pasted from:  http://facingourrisk.wordpress.com/2008/07/22/previvor-past-present-future/.  It's a description of the word, its origin, meaning and purpose straight from Sue Friedman who coined the term and founded FORCE (Facing our Risk for Cancer Empowered).

Use of the term “previvor” has become common, which, in my opinion is good for our community. Since popularization of the term increases the chance that its meaning and origin can get lost or forgotten, a post on the origins and future of the term seems timely.
I have seen some people react strongly (with intense like or dislike) to the term, which I can understand. By sharing the history and reason why the term was coined I hope to help people accept or at least understand the intent and meaning behind the creation of the term.

In 1998, after finishing my treatment for breast cancer and after learning that I had a BRCA 2 mutation, I sought out breast cancer support groups. Because of the hereditary component to my cancer, I felt that others in the group couldn’t relate to many of the issues I was facing. My needs were not entirely met by the standard cancer support group model. Along the way I met women who were high-risk because of a BRCA mutation or other risk factor but who did not have cancer. These women became my friends and inspiration; certainly they were facing difficult decisions and issues that most of their friends couldn’t understand or relate to. With a diagnosis of cancer I immediately joined an already well-established community (albeit one I didn’t want to belong to) and instant access to support and resources via great organizations such as Gilda’s Club, the Wellness Community, and local support groups. Sadly, I noticed that many of my new high-risk friends without cancer felt alone, and not comfortable with using resources and forums created specifically for people with a cancer diagnosis.

I founded FORCE in 1999 under the principle that nobody should face hereditary cancer alone. Our goal has always been to include all who have been affected by hereditary cancer: those with cancer and those without, those with a known mutation and those with cancer in the family even if no BRCA mutation has been found. FORCE was also established to provide a home and safe haven specifically for high-risk women who had very few other safe and supportive places to share their common experiences.

The term “cancer pre-vivor” arose in 2000 from a challenge on the FORCE message board by Jordan, a website regular, who posted, “I need a label!” At that time I knew that the medical community had a label: the term “unaffected carrier” is used to describe those who have a gene mutation but have not had cancer. The term applies from a medical perspective, but can be dismissive for people who face the fears, stress, and difficult choices that accompany an increased risk for cancer. As a result, FORCE developed and promoted the term “cancer previvor” for “survivor of a predisposition to cancer.” The term includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor who are living with the knowlege of being high-risk.

Over the years the term previvor has been incorporated into the FORCE lexicon. Due to the enthusiastic use by our community and the medical community’s lack of a better word, the term has slowly been accepted by the medical and research community. In 2007 a series of high-profile articles in the New York Times brought public attention to the term and the serious issues that cancer previvors face. In December 2007, Time Magazine chose “previvor” as #3 of the top buzzwords of 2007 giving millions of people exposure to the term.

What does the future hold for the term and the community? The explosion of genetics research has led to the discovery of genes that predispose people to many different diseases. One of the powerful promises of genetics research is the ability to better predict risk and develop effective strategies to prevent diseases like cancer before they develop; this is an area where we have great potential to make an impact on the wellbeing of this and future generations. With the discovery of more genes that predispose to an assortment of diseases; cancer, diabetes, Alzheimers, we can expect that more people will learn that they are at high-risk for something. And risk is a spectrum: not all risk is created equal. Someone with a 25% lifetime risk for breast cancer for example,(compared with the population risk of 12.5%) may have a different set of issues to face and choices to make than someone with an 85% lifetime risk for the disease. These emerging “previvors” will face new challenges and dilemmas that may be different from those faced by the BRCA community but which require a new set of devoted resources. Through recognition and awareness of the unique issues each high-risk group faces we can begin to address their information, resource, and research needs. Perhaps this will require the development of a government agency–maybe an “Office Of Previvorship” (OOPs for short?)–with committed resources and funding to study and try to meet the medical and emotional needs of those who have hereditary predisposition to diseases.

The development and success of the term previvor is just one example of FORCE’s continuing role in uniting and providing a strong voice for families touched by hereditary cancer. For more information on FORCE and our programs, visit our website at facingourrisk.org.

The wait on my chest

I am not good at "doing nothing."  Don't get me wrong, I'm great at vegging out on a Sunday afternoon, TV in the background, laptop on my lap (ahem), snack food an arms reach away.  But I'm your classic, textbook definition of a Type A personality, or as Wikipedia puts it: an impatient, time conscious, controlling, concerned about their status, highly competitive, ambitious, business like, aggressive "stress junkie."

And now I feel like my whole life is a waiting game; and I'm not very good at waiting.  First, I waited until I was 30 for my first mammogram, then I waited for the results, then I waited to meet the NP, now I'm waiting to meet with a geneticist.  After that, I'll wait 4-6 weeks for my results.  If my results are positive (awful word for it since it really means something negative) then I'll wait the appropriate amount of time (5 minutes enough?) and make my prevention decision.  If my results are negative, then I'll wait for my MRI, and it's results thereafter, wait until I have my mammo 6 months after that.  Lather, Rinse, Repeat.

I feel like I'm just waiting to get cancer, like cancer is the finish line and I'm somewhere on the course without a map. I need a "you are here" dot like on the mall maps so I can stop waiting. I need answers, results, action. I need to stop waiting.  I want to start doing.

Mainly, I feel like I'm waiting for people to get it.  The support boards are great and have offered me so much direction and insight for what happens after, but I am actively trying to find something, someone for now.  I'm waiting for someone to come along and not question what I am doing, but ask questions about what I am doing.  I am waiting to talk to someone who doesn't imply that I'm handling this all wrong.  I'm waiting for a conversation with someone who gets that this is a big deal and why it's the weight on my chest right now. 

I'm waiting, always waiting.

Check yourself before you wreck yourself

Today I SBE'd, shorthand for Self Breast Exam.  This is my first SBE post my NP appointment so I wanted to do a little bit of research on what to look for.  Basically, you're looking for:

• Any new lump (which may or may not be painful or tender)
• Unusual thickening of your breasts
• Sticky or bloody discharge from your nipples
• Any changes in the skin of your nipples or breasts, such as puckering or dimpling
• An unusual increase in the size of one breast
• One breast unusually lower than the other

Sounds simple right?  It's not.  While a mammogram can detect a lump as small as 0.2 cm, the lumps you'll find while SBE can range from 2-3.5 cm! 

Plus, now I'm curious and loaded with questions for when I see my NP next (10 months!).  I want to know what a lump feels like, how it will differ from the already present "dense-ness" of my breasts, how do you tell the difference?

Here's your how to guide:

Feeling like an A!

I feel good today.  I went straight to the source and found out that my health insurance provider will cover 80% of the genetic testing!  Which means only a $640 expense to me, only!  Something about having this concrete information has helped me settle down a bit and I can honestly say I forgot about this 33% weight on my chest.  Okay so I haven't forgotten but I am not thinking about it as much.

I do think about it whenever I see someone with fake boobs though.  Is that what mine would look like?  Would people notice them and assume I just wanted fake big boobs (as opposed to my real big boobs)?  Why do I care?  Do you keep the nipple?  Are they BRCA carriers?

But today I feel good.  I'm coming more to terms with other people not getting it too.  I am handling this journey the way I handle things and in the end I know whatever decision I make will be based on research, thought, and what's best for me.  I will not make any rash decisions in vain based upon a yes or no moment at a geneticist.  I feel good today.

You already have my boobs; now you want my beer?

 

So how far do we go to "be healthy?"  How far should we go?  Ideally, I should lose 22 lbs, not eat processed red meats, have 5 servings of veggies daily, exercise for 30 minutes a day, SBE monthly, get medically checked quarterly, quit smoking, and *insertjawdrop* quit drinking!  How do you expect me to process the news that I have a 1 in 3 chance of getting breast cancer and NOT drink.  I think even my barely-drinking sister would want some wine after that bomb.

According to research, women who drink are at a greater disposition for invasive ductal carcinoma, a major form of breast cancer (grazi David J Hanson).  If you're a red wine drinker for your heart - your heart will rock, but your knockers won't.  Some speculate that even a half glass of wine daily can increase your chances.  However, it does not increase your risk for many other types of breast cancer.  What's a drinking gal to do?

So, you can have my boobs, and my fat rolls, and my Whopper Jr. (no onions, please), you can even have me 4 times a year, and poke and prod and squeeze and push and look at my girls.  But no you cannot have my Sam Adams, or my Miller Time.  You cannot take away the joy a dirty martini brings at the end of a stressful week, or how great wine goes with dinner.  You will not make me realize I'm a bad dancer, you cannot have my liquid spirit.  You can have my boobs, but you cannot have my buzz.

With that said, it's 5 o'clock somewhere.  Salute!

To test or not to test; that is the question

So, I have scheduled my first Genetic Counseling appointment for September 23rd.  Beaumont will be sending me a packet that I need to complete and return before I show up.  Yay!  More paperwork!  If I ever get around to purchasing a home in this lifetime, I am totally convinced my closing documents will have less pages to complete than all of my high-risk paperwork.

I have a lot to think about going into this first appointment, so many questions, so many uncertainties.  Or maybe I don't, and I'm an extreme over-thinker and I'm doing all of this unnecessarily.  I live my life literally planning for the worst and expecting the best.  As that applies to this current journey I've found myself researching like crazy.  You see the thing is that I really don't expect to come back BCRA 1 or 1 positive.  If only 2% of women are positive, the odds are in my favor. But then again, when are the odds ever in my favor?  So, with that I'd like to be able to make an educated, informed decision now, so if I am in that select 2% of people, I know my decision is based on rationale, and not emotion.

But then, what does a negative for BRCA really mean?  Does it mean I won't get breast cancer?  No, even if the test is negative I still  have that 32.92% chance.  Does it even mean I am really BRCA negative?  NO!  After all, the relative you should compare DNA with is a survivor, and my only living survivor and I don't speak.  For all we know, we may have the gene in the family and it may not show up in my screening, which doesn't mean I'm not, it just won't jump out and bite you from the snapshot of my DNA. 

So test or not to test?  That is the question.

Meet the Girls

I'm a curvy woman.  I have always been a curvy woman and will always be a curvy woman and will always love my curves.  Or so I thought.

My relationship with "The Girls" began when I was 9.  My Grandmother (the survivor of all survivors) told me after school one day that that weekend "we had to go to Pennys and get me a training bra."  Outwardly, I was horrified.  Internally, thrilled.  "Really, really?  I get to be the first in my class in a bra?  Yes!"  Of course, I wasn't.  I tied H, we giggled together about our shared experience.

Fast forward to 6th grade.  I was already a size B and most girls were rocking the training bra, amateurs!  My best friend - bestie as the kids say now - accused me of stuffing my bra while brushing her teeth after lunch in the bathroom (braces!).  Determined to prove I was right (such a brat, always) I flashed her like a Mardi Gras regular.  I won!

That year brought the first of few conflicting emotions I had about the girls.  I loved them!  I loved having bigger boobs than the popular pretty girls (what do I have that they don't got?).  I liked that I was becoming a woman.  A woman, to me, meant so many things.  Mainly, intelligence, independence, success.  But the boys - oh the boys - they loved to snap my strap, and would compete to see who could unsnap it at the same time.  If only I knew then what I know now.

"The Girls" growth and potential just continued as I grew older.  And the more they grew, they more I loved them.  I used to knock (pun intended) fake boobies.  Until a friend (much more recently) put it into perspective for me:  women pay for my chest!  Thousands of women pay and undergo surgery to mock my look.  Big Breasted Woman in the modern fashion culture are what Madonna was to Bangles and Bangs in the 80's.  Rock on Girls.

I can't remember when I discovered I was high risk for breast cancer, I feel like I've always known..  Was it when I used to play with my grandmothers prosthetics? Was it when I visited Grandma Jo in the hospital with breast cancer? Was it when I realized everyone in my family has cancer?  Or was it as simple as my first Ob/Gyn appointment when they recommend I begin mammograms at 30 instead of 40?  I'm not sure when.  But I do know, I've spent a long time knowing I was high risk, and a part of that time assuming that meant more than a 12% chance, 1 in 5 maybe.

So it was without reluctance, or embarrassment, or worry when I went in for my first mammogram.  I was easily half the age of the other women in the waiting room.  I felt their looks, their concern.  It didn't phase me.  I was doing the only thing I could do:  take the appropriate steps for early detection.  When I received the follow up letter (my mammogram was clear) it recommended I join the High Risk program the hospital offered and make a follow up appointment.  At this point, I was overjoyed!  I was so happy to have chosen a hospital with a hands-on, pro-active approach.  I happily scheduled my follow up immediately.

That's when I met Heather, my Nurse Practitioner (NP).  She was great!  Young and fresh, answered all of my questions, spoke to me like a human and not like a medical professional.  I thought wow!  I am so lucky.  Heather wanted me to drop some weight and get to a healthy BMI - check!  Schedule an appointment with her alternating my annual appointment every 6 months - check!  Eat 5 servings of veggies a day - check!  Drink less - errr, we'll see:).

But when my new girlfriend Heather called me back later in the week - her news hurt to the core.  According to the Tyrer-Cuzick risk model, I have a 32.92% chance of getting breast cancer in my lifetime.  Heather wants me to alternate an MRI with my mammogram so I am being checked every 3 months for cancer.  I can do that.  What I couldn't do was grasp my gambling bets.  When I met Heather, I assumed I had a 1 in 5 chance of getting breast cancer and needed an annual mammogram.  Now I have a 1 in 3 chance, I need to be checked quarterly using 3 different methods, and should meet with a genetic counselor to be the first in my family to see if I have a BRCA mutation.  The only living survivor in my family doesn't speak to me.  I feel speechless, and I am not known for being short on words.

So, yeah I used to love my girls.  They're beautiful, they have identified me for so long, they are a serious part of my physical make up, and now they also bring a 1 in 3 chance of giving me a potentially deadly disease that has affected many people in all sides of my family, even claiming the lives of a few.  Its hard to love them as much now, but I'm trying.