Monday, May 10, 2010

the literature sucks

So the literature gives a prognosis of 2.3 years for primary angiosarcoma of the breast. The literature really sucks, mostly because there are so few cases, they can't get good statistics. The most recent report from the mayo clinic shows 27 cases in the last 50 years, and in that time there have been different treatments from lumpectomies to mastectomies to chemo, with no standard treatment. The good news is that the people at Dana Farber have anecdotal evidence that their angiosarcoma patients are responding well to chemotherapy. They see about 2 patients a year with this and for the past 5 years, no deaths, yay! I feel a little guilty calling all my closest people and telling them that this thing was curable as though it was a done deal. That very well might be the case, but it's really a wait and see game, just not enough of us freaks out there to actually study. I did ask my doctor if i would be ok to run my marathon by october and after a brief reflection, he encouraged me to do the half, hey I'll take it!
They are going to make a cell line out of my tumor, I'm lobbying for naming it the copa soca sucks line, but we'll see.
I had a PET/CT scan done on friday but it shows nothing. This elusive cancer doesn't really image on anything..mammo negative, sono negative, pet scan negative, MRI, bam it's there. The good thing is that they believe that there's no metastases from the CT part of the PET/CT, very good and encouraging. The bad news is that there's another lesion in my left breast that they need to biopsy before doing surgery. I have another MRI scheduled for tomorrow at brigham's and another biopsy of both boobies on wednesday. The surgery is scheduled for Thursday the 20th. We'll know by then if they're both coming off and what kind of chemo I'll be receiving.
On Friday, I'm going wig shopping with Charly, she want's me to get a pink wig, I won't mind as long as it has spikes, maybe even a mohawk.
I went in today thinking I might have 12 months and came out hearing at least 5 years, that's enough time to do so freaking much. My babies will know me:)
Oh yeah, one more thing, if you don't believe in karma, you can totally use the cancer card on people and they'll do whatever you want. People freak out and start babbling and doing whatever you want, it's pretty cool stuff really, but don't do it if you believe in an after life. My husbands probably already sick of getting me coffee based on the cancer card, perhaps I should space it out if I plan on being here for a while:)


  1. This is wonderful news, Corrie! And how cool that you'll have your own cell line. :) You're one tough chick who is sticking around, and I'm so thankful! I truly admire your gumption and the fact that you're writing about this experience. You're fabulous!

  2. Happy!! Joy!!!! Hooray!!! It's still a bunch of bullshit that you and the fam have to deal with that sneaky bastard AS. But this is the BEST news that I've heard since you called me last week with the WORST news I've ever heard. My God, what a relief! You are still a huge influence in my life, even though I don't see you every day. I love you, love you, love you and I can't wait to see you to tell you in person!

  3. Corrie,
    You don't even know me but I feel like I know you. Blanca and Bob are dear friends of mine and I am the lucky recipent of lots of your family pictures. I empathize with you so much as I have four little girls myself (from 2-8) and can only imagine the emotional toll that this must be taking on you. Just wanted you to know that you have people that you don't even know sending lots of prayers and good thoughts your way- DAILY! With your positive attitude and all these prayers there is no way that you can elude a healing! -Erin

  4. Alright Corrie....I'm guessing you'll rewrite the books on this one! You are easily the most amazing person I have ever met, and I know you'll kick AS in the ASS!!!!!!! Any woman who can take on Ted, 2 babies, a step-teen, lab work, and marathons, can kick anything, and change it to the way she wants keep on laughing at it, Corrie!!!!! Love you!!!

  5. Hi Corrie,
    Glad to hear that you got good news from the PET scans and in terms of your treatment plan! You are in the best place in the world to be treated. The doctors and nurses at the Farber are the best. I have spent a lot of time there in the past year with a close friend (also with a very rare tumor--thymoma) and my Dad (lung cancer).

    I agree with you daughter get a shockingly sexy wig! You deserve it!

    I think you are crazy for wanting to run a marathon, but I think anyone who runs for fun including Julie is insane :-)!

    Wishing you more positive news,