Wednesday, September 30, 2009

Quest is over

Waiting is hard, isn't it?  Welcome to my world!

And, the wait is not over.

The good news is the latest biopsy showed no cancer in the medial area.

Yay!

The bad news is it did show Lobular Carcinoma in Situ in that area.  Despite the scary name, LCIS is not cancer - it's a tumor marker.  That means there is a  slightly higher chance of developing cancer in that area, but normal treatment for this is to watch it and see what happens.  And, most often, nothing does.

The good news is I may still be able to have a lumpectomy rather than a mastectomy.

Yay!

The bad news is the word "may."  That means more discussion.  And, more waiting.

Dr. Raja is going to bring my case to a tumor board.   Apparently, a tumor board consists of oncologists,  radiation oncologists, and surgeons, all of whom have differing favorite treatments and who like to argue about difficult or intriguing cases.  (Finally, something about me is called intriguing - and it's a tumor.  Just my luck.)

I don't think I'm invited.  I bet they won't even let me take the minutes.

I hate it when people talk behind my back.  Especially when it's about my front.

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4:59 pm.  I just finished typing the above, and the phone rang.  It was Dr. Raja.  Apparently, the tumor board meeting was this morning.  (See, I told you I wouldn't be invited.  I make great coffee too!)

All of the doctors agreed that I would need a mastectomy, and not only that, as soon as possible.  All 8 doctors agreed unanimously that it can't wait, that my cancer was too aggressive.   And, Dr Raja mentioned to me that I was HER2+ and would need to start chemotherapy sooner rather than later, so he is going to try to find a plastic surgeon who will fit me in quickly.

There was an urgency in his voice I hadn't heard before.  "as soon as possible"  "we have to move quickly."  "I'll find a plastic surgeon to fit you in immediately." "Call me first thing in the morning and we'll set it up."   "Chemo as soon as possible." He's always been so soothing and comforting, assuring me I'd be fine. 

His tone had changed.  Seems strange to go from "you have plenty of time" to "it has to happen NOW" in one day.

Maybe he's tired.  He did say it was a very active meeting.

Well, I have had plenty of time to adjust, so I'm okay.  I've been expecting a fake boob and no hair and a year of chemo and infusions.  (Sometimes 15 months with herception - ouch!)

But, I really want those meeting notes.   I'd love to know what really happened in there.  Did they fight about me?  Did they think something was overlooked?  Did they call me nuts for even trying to save my cancer soup girl?

Oh, to be a fly on the wall.

7 comments:

  1. Oh, I'm sorry!! You'll make it through this, sounds like you have a good support system out there. Keep us informed!

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  2. I have no doubt I'll be fine - I finally have a built-in blog topic - can't give that up!

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  3. Chemo wasn't a year of no hair. I lost mine abuot august 15 and went for my first post chemo hair cut in late March. A year from now I would think you have short hair, but it will be hair.On the doctor's changing their tune from you have plenty of time, you might ask how they define right away. I means is tomorrow too late? Can you have a week to deal? Or is it more like a couple of weeks and you could go do something fun for a few days? Good luck!

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  4. I think you've seen my site (CancerVacation.com) - you'll be fine. I just got my last dose of Herceptin yesterday (the same day as this entry). I had a few months of chemo and over a year of Herceptin. I lost my boobs, I lost my hair, the hair grew back, I'm almost done with reconstruction (I get nipples on Monday). Email me if there's anything not on my site that you want to know... I'm posting the chemo/herceptin photos tonight. Don't mourn the boob... it tried to KILL YOU.

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  5. Nah, I know I won't have a year of baldness. Herception is a year of treatment though, often done after chemo is half done, so it can be a 15 month process. I have bad hair anyway. :)

    My boob didn't try to kill me. Cancer tried to kill me and the battleground is my boob. My boob is a soldier that has to give its life so I can keep mine - I'll mourn but it's for a better cause.

    I linked to your site Julia, it's very inspiring.

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  6. Oh Ann - that is like holding a party in your honour and forgetting to invite the birthday girl!

    Sorry to hear about the masectomy. But I guess if that is their recommendation then you need to go with it. Keep us posted on what is happening!! BW - Paula

    www.redshoesgreenpeppers.blogspot.com

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  7. Tumor boards never invited me either!
    I heard from the radiation oncologist that I was an "interesting case" and he had been following the discussions about me for some time, hoping that when I got to radiation that he would get me.
    Just what I always wanted, to be an interesting case to a tumor board! (sarcasm) So not on my bucket list!
    Elizabeth

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