Monday, April 8, 2013

Keeping It Real about TNBC

Everyone keeps telling me how "strong" and "positive" I am, which I thank you for and I generally do think I'm strong and positive. But I don't want you think I'm an insane Pollyanna or that the type of breast cancer I have isn't totally shitty.

I've mentioned before that the type of breast cancer I have is called Triple Negative Breast Cancer (TNBC). This is not your Grandma's breast cancer. This type accounts for ~15% of all breast cancers and is most often seen in young women. It's not receptive to the blockbuster drugs that have increased survival rates for other types of breast cancer because it's not receptive to any hormones. And it's the most likely to metastasize (i.e. spread to other organs which basically means certain death). Researchers think there are several genetic components to it (like BRCA), many of which are not yet known, which is why more young women get it. You can read a lot more about TNBC here if you are interested. 

Sadly, when news stories report on TNBC they use terms like "deadliest" breast cancer and "poorer survival." So that's awesome. But that's because the hormone-positive breast cancers carry a survival rate in the 90%s and the survival rate for TNBC is more like 70%-80% depending on the studies you read. So you can see that although many people do survive TNBC, you're twice as likely to die of it than other types. One good website I found is called "positives about negative". It's shares realistic and positive news about TNBC research. Like one good thing about TNBC is that when it responds well to chemo (which often happens) the chances of disease-free survival go way up.

What's scaring the crap out of me right now, is that I've not have a PET/CT scan or MRI yet to look for metastasis because those involve radiation is which is not safe during pregnancy. So please keep praying that the cancer has not metastasized (e.g. spread) elsewhere. 

I don't mean this to sound depressing if it does, but I wanted to share this information so people don't think "oh poor Kirsten has to lose her hair and have a less-fun pregnancy, but beating this cancer is a slam-dunk". That said, I truly believe that if anyone can be in the 70-80% TNBC survivor stats, I will be. And I believe this... 


10 comments:

  1. I think you have a great attitude, but it's okay to acknowledge that this totally sucks too. Finding that balance is important because you have to be realistic but you can't let it steal your joy. Thinking of you and praying everyday! XO

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  2. Hey kirsten, glad you are doing ok with the chemo, I know it can be tiring...along with being pregnant! Those wigs are awesome too! Did they not do an MRI on you? You can have an MRI, they are safe, no radiation. Ask your dr. Believe me, i know its something you want to know but don't want to know, I get that. Keep going, you'll get there :)

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  3. Thinking and praying for you always, Big hug, Fabiola

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  4. I used to read your blog a bazillion years ago (and then I fell off the face of the blogging planet) and I just got directed back here to read your story.
    You WILL be in the 70-80% of survivors!!!
    Lots of prayers and all the positive energy I can muster sent your way!!!

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  5. As with the blogger above me, I read your old blog. And I was also redirected here (thanks to Megan). When I realized this was you, my heart dropped. We obviously don't know you in person, but when you follow someone's blog, you develop a sense of a weird-technological-friendship for them. Thank you for sharing your story, and I know I'll be praying right along with everyone for your health and the health of that beautiful baby girl. Keep kicking ass! :)

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  6. I read your old blog as well - don't remember how I originally found you, but I always loved your posts and felt the same weird-technological-friendship with you. I'm a member of your sorority, so maybe that helped :) I'm also expecting our first - due in August. Just wanted to let you know that I'll be praying for you and your husband and daughter.

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  7. I just came across your blog on another blog I read. Your story is remarkable, and you are so brave to be sharing it with others for awareness and hope.
    Ps..love your new wigs, especially the hat/ hair wig. This would be ideal for the summer months and for blocking the sun... chic and stylish "hat hair"!!

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  8. This does suck, and I think of you often because I imagine so much goes unsaid, despite your wonderful and informative updates. I remember when I lost Grace, some people shared the quote/idea about God giving us only what we can handle, and truth be told, I have mixed feeling about that idea - what it implies about me, what it implies about those who have it "easy" (no one does), about those who get "struck down", and about God, too. Still, you are absolutely right that surely YOU can be in that 70 - 80%, I know you are in God's good hands, and I will keep you in my prayers - that you will watch your daughter hit all life's big milestones, you'll do so in good health, and we'll get those girls to Disney Land!!

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  9. maggie.danhakl@healthline.comApril 11, 2014 at 2:59 PM

    Hello,

    I hope all is well. Healthline just published these inspiring quotes about breast cancer from celebrities who battled the disease. Our audience really enjoyed them and gave us great feedback on how powerful and inspirational they are. You can see them here: http://www.healthline.com/health/breast-cancer/quotes

    I thought they would be of interest to your followers as well, and I wanted to see if you would include it as a resource on your page: http://abumpandalump.blogspot.com/2013/04/keeping-it-real-about-tnbc.html

    Please let me know if this would be possible. I’m happy to answer any other questions as well.

    Thanks so much!
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

    ReplyDelete