Family Onset Age - Insert horror movie soundtrack here!

Well, I'm in the weeks leading up to my annual exam.  This year we're doing the mammogram and MRI at the same time.  Why?  I'm not sure, but it's what my NP and Dr ordered.

Every year I'm stressed out, high anxiety, on full alert in the weeks, days, and hours leading up to my appointment.  This year you can multiply that by a kajillion because this year, I've reached my family onset age.

I'm hoping my ability to only compartmentalize my feelings kicks into overdrive and calms my crazy ass down!  I've been able to only think about the big BC once a month when I do my SBE, let's see if I can make that compartment even larger for this looming day.

T Minus 23 days till I spend a thousand bucks to not have cancer!!

Superwoman=Previvor

Alicia Keys sings the line so beautifully: 

'Cause I'm a Superwoman, yes I am, yes she is, even when I'm a mess, I still put on a vest, with an S on my chest, oh yes, I'm a Superwoman.'

Truer words couldn't be spoken about women who wear their scars on their chests, proof that they too are Superwomen.  Daily, I look down at the pysical remains of my biopsy.  One straw-sized healing incinsion (soon to be scar) and a half dollar sized bruise.  Had either of these appeared anywhere else on my body, I probably would have never noticed, and if I had I would have no idea how I did that (I'm not exactly graceful).  But these two circles, these two tiny spots stare back at me, daily.  A daily reminder of Biopsy One. 

These two little spots, markers, alterations in my physical being change the way I see myself.  They change the way I feel about myself.  How will I see myself 5 years from now, 10, 20?  How many spots, markers alterations will I have then?  How will I feel about myself then?

They make me wonder, how many biopsy holes will I acquire in a lifetime?  If I make it through this life cancer free, how many tokens of surveillance will be left behind?  How different will my chest look on my last day even if I never have cancer, which is of course the best case scenario.  I contemplate buying a snug white shirt, and placing some sort of marker on my biopsy spot and recording my history externally like the pathologists mark my history internally.  A Previvor Souvenir if you will.

You see, that's why Previvors have a term, have a community, why our prevention choices don't matter in the long run (surveillance vs mastectomy).  We make not be sick, but we do have the scars to prove it.

Let me tell you a little story called "Brr"

Once upon a time I had a friend.  Said friend very quickly became a best friend.  Sadly, for reasons totally unimportant to this blog, said friend and I haven't spoken in months.  Until today, when he wished me luck on my biopsy tomorrow because another friend told him about it.  I'm hurt, angry, and betrayed.

But I realize that I'm hurt, angry and betrayed because clearly, the tattletale has no idea what I'm going through.  I mean of course I'm nervous about crawling back into the tube, I'm nervous they won't use enough local to numb my full boob, I'm nervous about a needle being poked into the 12 o'clock position of my right breast and ABSOLUTELY I'm nervous about what the tissue sample they draw will say about me.

But best case scenario in this situation is that the tissue is fine, and in 3 months I have a clinical, and then in 3 months I have a mammogram, and then a clinical, and then an MRI.  Tomorrow isn't just one test for cancer.  It's not just one biopsy.  It's one of hundreds of tests for cancer that I'll endure.  It's one of probably many biopsies.

Worst case scenario is its cancer.  And I face my ghost face to face.  But either way I don't rid this.  Truthfully, tomorrow is the just another ordinary day in the life of a high risk breast cancer patient.

It hurts because this isn't one day.  This is my life.

Where's the what to expect when you're not expecting handbook?

And no, I'm not talking about babies.

Yesterday was my MRI.  Hated it!  Although the technicians were gems and deserve Jennifer Anistons salary, in my opinion.  They weren't kidding about the IV making your mouth taste like metal - blech!  And if anyone wants to shoot over any tips on how the hell to sit up after you're done without ripping the IV out of your arm, I would appreciate it. 

When discussing the results with my roommate, I told her I expected a letter in a couple of weeks like I did with the Mammogram stating all was clear.  That's when the unexpected happened.  Heather called at 9:15 this morning to discuss the results and offer recommendations.  Duh, duh, duh. . . . .

So clearly, I knew all wasn't honky-dorry.  I just spoke with her and there is a 7 mm linear mass area of enhancement at the 12 o'clock position on my right breast.  Ain't that a bitch.  There's a spot in my right boob that I will obsess over for the next week and it's too damn small for me to even feel.  Well, I have an appointment next Tuesday for a wire-guided MRI biopsy.  Yup, back in the tube I go.  I'm going to go study up on my biopsy and I'll share anything I learn with ya. 

MRI Day . . . Glad they're not testing my nerves!

In a couple of short hours, I will be lying face down, girls hanging, in a loud banging tube.  There will be a tinted IV in my arm, highlighting my blood stream and more pictures of my beasts will be taken.  If breast cancer previvors, patients, and survivors were paid per picture, we'd make Jenna Jameson look poor!

And today I'm really nervous!  I can't come up with a code name for this test;  that's how I know I'm really nervous- I can't even make fun of it.  I call my mammo's the Monster Mash, my clinicals Tuning in to Tokyo, but can't find anything witty for this one. 

Deep down I know I'm fine.  I SBE every month, my mammo came back clear, my clinical exam last month was all clear.  But at the same time, if on the off chance something wasn't fine, if there was a tiny spot of trouble, this would be the exam that would most likely find it.  I keep telling myself, I'll be fine, but if I was really fine, I wouldn't be doing this at 30 right?

PS - my dear friend with Cervical Cancer has her surgery to remove the cancer, and some of her cervix tomorrow morning.  I ask of you to do whatever spiritually moves you to ask for health, healing, and fertility for her.  Thanks xoxox

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.

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.