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Once More Unto the Breach

I know I promised an entry about some of what I call the "side effects" of my cancer but that's going on to the back burner for now because yesterday I got my results of my genetic testing.

We did the testing because of my family history. One aunt recently passed away after battling the disease for several years, yet she did not have the genetic mutation. Her sister, had a pre-cancerous condition, but she too did not carry the mutation. They were both tested, so we know this for a fact. But it wasn't their generation that caused concern; it was my grandma's. You see my grandma was the same age I was when she was diagnosed with breast cancer. I knew that. She also had a sister who died when I was eight from either ovarian cancer or cervical cancer (there's some open discussion on that). But what I didn't know was that my grandma had a sister, who died in her 30s of ovarian cancer. That's where the concern lay as far as my genetic counselor was concerned.

Okay - let me step back on this too. And I apologize now for the disjointedness of this entry because my thoughts are still running around in my head, unorganized. I went to see a genetic counselor two weeks ago at the Cancer Institute of NJ where I met not only with her for two hours but also another oncologist, Dr. T., who specializes in genetic cancer. We went over my family history as far back as we could and as wide as we could. And afterward, that's when they told me I was a good candidate for the testing - my family history and my type of cancer (triple negative on the hormone receptors) - you see that form of cancer is usually associated with this genetic abnormality.

It was also during this session that I learned that I don't have a gene that causes cancer but a mutation in a gene and it doesn't so much cause me to get cancer but it prevents my body from suppressing tumors. The BRCA-1 and BRCA-2 genes are tumor suppressors. Because mine are "mutated" they're not doing the work they're supposed to do. Stupid genes.

But here's the kicker and here is one thing I want you all to pay close attention to. This was not my mother's mother we're talking about. This was my father's mother. Which means, assuming my father has the gene mutation (and good odds he does), I inherited it from him. So believe me when I tell you, contrary to a misconception out there, you can get this gene mutation from your father. Years ago I had one doctor tell me you couldn't. Boy was he wrong. The reason people don't think it comes from the father is because men rarely get breast cancer. But check out this stat. In the normal population less than .5% of men get breast cancer but those with this gene mutation have a 6% chance of getting it (so 12 times more likely - thanks Al!). In men, this gene mutation has also been tied to prostate cancer.

So where was I?

Okay - so two weeks ago I met with the counselor and the doctor and decided to have the test done. There was a lot of talk about the cost of the test, especially because there are two versions, one initial screening and then a more detailed sequencing, and not all insurance covers these tests (which can run from $600 - $3000) but so far, it seems like my personal medical history qualified me with our insurance, so we opted for the full gamut .

Yesterday a friend and I went for the results. And sure enough I have a BRCA-1 mutation.

What does that mean?

Well, there are a lot of stats and studies I can quote but I'm getting tired and I may write more about this later, so I'm holding off. In the short term, I'm going to have an oophorectomy, which I think is one of the funniest sounding words ever but it means I'm having my ovaries removed. You see this gene mutation isn't just related to breast cancer, it's also related to increased chances for ovarian cancer, and since there's no good detection method for the big "OC", the oncologists I've talked to have said they need to go. I agree. Kind of feels like a ticking time bomb inside of me.

After that, there are basically two paths to follow, one of increased observation or the double mastectomy and reconstruction. I'm considering my options on that now.

But needless to say, it feels like once more I'm heading to "war." Only this time, my enemy doesn't get a surprise attack, so that's one in my corner.

More later...

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Other Thinks (10)

Kim, first of all, I didn't know that you could inherit these genes from your father. I don't think many doctors know either, so thanks a million for that piece of information.

I wish you all the best for whatever you decide to do.

Sheena:

Oh Kim, I was about to say how sorry I was to read this (which I am)... but also thought about the fact that if there is any factor of cancer that could possibly be considered lucky then you are fortunate that these tests now exist and you were able to have them.

I am very sure that dealing with this is the last thing that you want to do right now, and my heart does go out to you.

It amazes me that you are dealing with all this decision making and still can take the time to educate us.
Thank God for the BRAC tests. Thanks for keeping us posted.

Jennifer:

Kim-Thank you for posting the information, it is important that all women know the facts! Please know that you are in my thoughts and prayers, sending you good vibes too!

Hugs-

Jen

Anne:

Oh Kim, I don't even know what to say about this news. I don't comment often, but I must tell you that your strength and grace through this journey never cease to amaze and inspire me.

Very helpful to learn that breast cancer can be passed down through the males of our families. You're right, that possibility is usually disregarded. As I recall when I had my biopsy, the doctors really only asked about my maternal family history.

Holding you in my prayers and sending mental hugs your way.

Barb Cabot:

I know writing all this down is difficult..sort of mind boggling because there's so much to look at, organize in one's mind to really understand it all. You've explained it in a very clearn way. This is helpful to all of us for many reasons. Thank you for making us aware. As you know you are always in my prayes and positive thoughts. Please continue to keep us posted. Sending you a huge virtual hug.

Marcia:

Kim,
I am so glad that you decided to have the testing, it seems the brave and right thing to do, as does the procedure that you have decided to have. You have us in your corner, and you are in my thoughts, always.

sandrac:

This is really important information, Kim, and thanks so much for sharing it.

Your courage and clear-headedness continue to amaze me. I'm also keeping you in my thoughts and prayers.

Terry (teaberry):

Kim, I'm just catching up with your blog, and after reading this post, I am SO GLAD that you are in such good hands. I like your analogy of going to war but now you are being preemptive to git that sucka. Thanks for sharing this with all of us. "The truth will set you free."

Hi Kim,
I admire you immensly for sharing your experience with BC. I want to immagine you healthy and feeling good: taking a long warm bath, watching an engaging movie or whatever makes you feel good.
Angie

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This page contains a single entry from the blog posted on March 24, 2010 6:47 PM.

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