Tuesday, May 17, 2011

Starting off my blog

I feel like I need to write a book to provide background to where I am now. This blog really should have started over a year ago when I first started down the road of genetic testing.  It all happened fairly quickly.  My cousin passed away from breast cancer at the age of 37.  I thought it was too much of coincidence that my Aunt had also died from Breast Cancer at the same age (this was not my cousin's mother, but her aunt as well - my dad's sister.) 

I had a lump in my left breast a few years ago and ended up having it removed - it was a fibroadenoma (benign).  And when I was there I talked to a few people about whether I would be considered high risk because of the diagnosis of my Aunt and my Cousin on my Dad's side.  I was actually told by someone at that point that there was no evidence that breast cancer would be hereditary through a paternal link. Well geez... that person was WRONG. 

When we found out about my uncle's positive test result after my cousin passed away, I talked to my ob-gyn about my risk, and asked if she could refer me for genetic counseling.  She thought it was warranted and made the referral.  It seemed like an obvious thing to do.  I'm a person that likes to know.  If there is something to know.. I want to know it.  I can't say I haven't regretted that decision a couple times since then.

At the time my chances were only 25% because my dad hadn't been tested.  I thought I had prepared myself mentally for the news either way, when I sat there with my husband waiting to recieve the results.  As soon as she entered the room, she sat down and cut to the point.  "the result was positive".  I felt a little crushed inside.  I teared up.  There wasn't alot to say at that point, since she had been so thorough in the initial counseling.  I had tested positive for a BRCA2 mutation, increasing my risk of breast cancer to 84%.  She reiterated a few things about options, gave me some pamphlets and said the patient navigator at the high risk breast clinic would be working with me to get set up with my first appointment.  She also put her hand on mine and said "This is NOT a death sentence".

At the high risk breast clinic, I met a surgeon to discuss my surgical options, he kind of casually laid the options out there, and they seemed so drastic, I don't think I paid alot of attention, because I really wasn't ready for those kinds of steps at that point.  I then met with the oncologist, who gave me all kinds of interesting information.  For instance, he confirmed that it would be likely based on family history that my specific genetic mutation would indicate an early onset - since both my Aunt and Cousin developed breast cancer in their early 30's, it was fairly likely I would as well.  He said I had a few things working in my favor though, and while he would not encourage anyone to do these things, it could possibly have the effect of delaying onset.  First I had my first child VERY young, and when you have your first child you stop developing ducts in your breasts, so I have fewer ducts than most people.  Plus I smoked for 10 years, and smoking reduces your estrogen.  Of course neither of these things should be recommended because of their other negative impacts. He did also say that I absolutely needed to quit smoking, because in a nonsmoker in my situation when we can catch the cancer early because of the level of surveilance I'll have, the odds of survival are 90%, however in a current smoker, that drops to 50%.  That's all I needed (and a medicinal aid).  I quit. almost a year ago now.

I started out feeling the way I wanted to go was surveillance.  Even when my first MRI resulted in a callback and further testing, and core needle biopsy, I reminded myself that I knew this is what i was in store for with surveilance.  I might have a biopsy every time I have an MRI.  I thought I was prepared for that.  I felt like if I were to get cancer I would go through treatment, have a mastectomy at that point, and he'd catch it so early, I'd be okay, and never have to worry about it again. 

I don't remember now what changed my mind, but sometime in the fall I really started obsessing over it.  I started drawing it out something like this.. but I broke it down in different ways.. I'll just share this example of one, it makes it pretty obvious

So the way I looked at this was that I had 2 options - 2 Rooms I could go into, the first was "Surveillance", the second was a prophylactic bilateral mastectomy.  After obsessing over these drawings for a couple weeks and talking about it outloud to a couple people I made my choice. I would do just about whatever necessary to get into that second room.
Then it was just one thing after another, with the holidays and birthdays, and crazy stuff at work and what not, then I had a weird health issue with my lungs, pleural effusion, chest pain, having to have a lung biopsy, and being diagnosed with "an unidentified autoimmune disorder affecting the lining of my lungs".  GREAT. 

So I'm mostly better from that episode now, and I'm moving forward.  So here I am a little over a year since my first appointment with the high risk breast clinic, and on Thursday (in 2 days) I have my appointment with a plastic surgeon, to be followed by an appointment on Friday with a general surgeon for consultation on my mastectomy.

I wanted to start this blog so I could get out some of what I have in my head, and maybe I'll share my experiences, and others will read and not feel so alone.  I've found it tremendously helpful to read the blogs of others who have "been there, done that". as well as those who are currently exploring their options and making decisions like I am.

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