Saturday, September 18, 2010

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.

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