Monday, April 23, 2012

Day 100 - I know what caused the cancer!

Honestly... give a girl a break.

Got the genetic testing back. Instead of testing negative for BRCA 1 or 2, I tested postive for BRCA 2. That's the genetic mutation in the 13th chromosome. So for me they suggest a double mastectomy (was going to do that) and an oopherectomy or the removal of the ovaries and fallopian tubes. Doing a double mastectomy reduces the chances of me have a new breast cancer by 95%, so there's a 5% chance I may get another cancer in my breast (not caused by the initial cancer that I have now). I will have an breast exam twice a year for the rest of my life. That may be just a physical exam, or it could entail a mammogram. They suggest a surgeon who specializes in the breast because I will be getting reconstruction. If I don't get a double mastectomy, I increase the chances of me getting a new cancer in my breasts. In addition, I would have to get a twice yearly exam where I would get a mammogram done one month, then six months later a breast MRI (uh, no!). So for the ovarian cancer, I have a 27% chance of getting ovarian cancer. If I get an oopherectomy, I reduce my chances of getting an abdomen cancer (same cells found in the ovaries/fallopian tubes) to 2-5%. Taking tamoxifen (which is an estrogen blocker) for five years reduces the chance of me getting breast cancer again by 50%.

I will meet with the genetic counselor on Thursday. But I told the lady that I had to ask these questions now otherwise I will not be able to sleep. She understood and said she'd do the same. I asked her which is more common... BRCA 1 OR 2. She says the more common genetic default is those with BRCA1. However, they are more commonly known to be triple negative where they test negative for estrogen, progesterone and HER2 neu receptors and is a little more difficult to treat. They are also at a 45% risk of getting ovarian cancer. So I guess being BRCA2 is better? But I don't come without risks. I have a a 7% chance of getting pancreatic cancer. And I am at a higher risk for melanoma (thank goodness I am not a sun worshipper). The melanoma is screened by skin exams. As for the pancreatic cancer... I will have to find out about that. I do know that a surgeon will screen for that... however, I don't know if there is a blood cancer marker that they test for.

If I don't do an oopherectomy, I can keep screening for a cancer marker via a blood test. However, ovarian cancer is very hard to detect until it is farther along in its cancer making ways. Honestly, I was thinking about doing an oopherectomy anyway. Figuring that the ovaries are the providers of the hormone estrogen. It just sucks that I have to make the choice. I'll let you know what I decide.

So I am here thinking about my news. It's not a death sentence. It's just not what I really want to hear. I'd rather have heard... good news... you test negative. But now I do know why I got breast cancer at such an early age. It just sucks to have to do all these things so early in life. I feel deflated. I love my life and I will do anything to extend it... but to lose my boobs, then to think that I am going to lose my ovaries and fallopian tubes. I might as well do a hysterectomy because then I won't have periods anymore! Oooh there's an idea. I guess what's most troubling for me is that Amelia and Elaina have a 50/50 chance of being positive for the genetic mutation. I feel a bit guilty to burden them with the idea that some day they may get breast cancer. They may choose to get tested, or they may not choose. We shall see. Maybe by the time they turn 18 (when they can make that decision themselves) we will have found a positive cure for breast cancer. But I guess I am feeling most blue because of what their lives will entail, their uncertainty, or their decision they will have to make... to know if they are a carrier. It just sucks. And I am bummed.

By the way... I had nothing to write on... so I wrote all the information down about the test results on the back of our voter pamphlet guide! hahaha!

Tomorrow I have an appointment to see if my mass shrunk. It's another ultrasound. Will let you know!

8 comments:

  1. Saying extra prayers for you tonight, Holls. To have peace, understanding and comfort in the information you were given. If there is ANYTHING i can do to help, please don't hesistate to ask!! On the positive side- you do have some information/answers that can help you be proactive about the future!! Love ya, hon!!! you are still a ROCK STAR in my book!!

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  2. I'm so sorry Holly. It sucks, but: both ovarian cancer AND pancreatic cancer grow without symptoms and by the time they are detected it's usually too late. Now your doctors know to keep an eye on it and if something does happen you will catch it early... not much of a comfort, I know, but we work with what we've got. I know what you mean about your girls. Because JC had TC, now L has a 50% chance of having it, too. Hugs from the north.

    Kris

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  3. Well, it's better to know then to not know. If you know all these things, you can watch for them. But, doesn't mean you will get them. Think of it in reverse--you have a 93% chance of NOT getting pancreatic cancer...and so on. You are amazing. I don't think I'd handle all you are handling with as much grace and honesty. You are a true fighter, and your girls and husband are lucky to have you as a role-model. Sending you tons of love!!!

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  4. Holly,
    We've never met, but if you want to chat with someone who is a patient at OHSU, a BC survivor and BRCA positive, you can check out my blog at leeasbell.wordpress.com

    Hang in there!
    Lee

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  5. It might not be the best news but at least you know. And your girls will have the knowledge so they will know what to look out for. They have a strong mother to look up to and you should be proud of that. Hugs and love!

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  6. You are loved! And now you have the knowledge to be empowered and empower your girls! You also can empower others with the struggles you face as a result of being BCRA positive! You are a warrior and while you may not understand the rhymn or reason, you are choosing to live! You are AMAZING!

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  7. You are in my prayers! Love you!

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