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.