I think I have a problem

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  • badboob67
    badboob67 Member Posts: 2,780
    edited October 2008

    Annie,

    I'm so sorry about this new worry! Tender had some great words for you. I know more treatment was not what you were hoping for (does anybody?).  You've got my prayers that this is easily treated and your side effects are few!

    (((HUGS)))
    Diane

  • nosurrender
    nosurrender Member Posts: 2,019
    edited October 2008

    Tender,

    Would you consider this a regional recurrence or residual disease, based on her BS saying that he "missed" that lymph node?

    I read it as it was left in place, the rads killed off the surrounding tissue, and hopefully imobilized and contained the cancer cells that were in the node...

    That is my hope  - 

    it is possible, don't you think?

    hugs

    g

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited October 2008

    Thanks to all.

    Tonight I feel like giving up. I'm not sure I can go on -- there's a lot my history I haven't shared.

    Also, how can I now trust my medical team?

    Thanks to all,

    Annie Camel Behind

  • nosurrender
    nosurrender Member Posts: 2,019
    edited October 2008

    (((ANNIE))))

    Do you have any Xanax or ativan in the house?

    Yes you can go on. You will just have to change your signature line to 1/19 nodes.

    I believe you have residual disease which is doctor speak for "ooops- missed that one!"

    I am not a doctor so I don't know.

    But I am someone who started out with TN and then got redx'd with ER/PR+ LOBULAR of all things.

    One foot in front of the other. We have your hands. We are walking next to you, behind you, ahead of you, and we will get you through each step. Close your eyes. Can you feel us?

    ((((BIG HUGS))))

    g

  • sushanna1
    sushanna1 Member Posts: 764
    edited October 2008

    Annie,

    After a couple of four letter words, more accurately the same four letter word repeated several times, I paused and pondered.  Assume that nosurrender is correct.  It sucks, but you can do this.  To quote nosurrender, you "just have to change your signature line."  Hang in there. 

    Sue

  • AlaskaDeb
    AlaskaDeb Member Posts: 2,601
    edited October 2008

    Annie

     NO!!!!  You are NOWHERE near the end of this fight!  You will do another round, kick some more cancer ass and go on to be fine!!!!

    One good thing to think about, there were a lot of DEAD cells in/around the node.  That means that something you did (chemo? Rads?  can't remember what treatment you had....call me clueless) killed a boat-load of cancer cells they were not even aimed at.  Now they know where the little suckers are they can kill them dead.

    I know you feel like you have been sucker punched, and just the bleeding episode would have me heading for the valium bottle.....but you CAN do this.  Take a few days.  Get your feet back under you.  get the tests to help you know exactly where you stand.  Let us know the score, and we will ge ready to help you kick cancer's butt again.

    Love Ya

    Deb C

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited October 2008

    I don't know if you've signed off, but let me mirror the others who urge you on in the morning light. Tears now though are a way of releasing our self, the weight and pain which comes with this disease. 
     
    I had a positive node from the outset. Here I am some seven years out. I did have radiation, and will be happy to share tales, and go with you through it, as many other lovely ladies here will be. So, no, this is not the end, rather the beginning of a new fork in the road. I believe strongly that radiation works, Annie. Persistence in the node, whatever the term, radiation is very good at controlling the cells.
     
    Please feel free to pm me if you wish. Lots of hugs being sent your way tonight and forever.
    Tender 
     


  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited October 2008

    Annie, I feel such strength when I read your posts.  Cancer doesn't have a chance against such determination.  Put your boxing gloves on......we will be cheering you on.  Sending you a big dose of hope, faith and love.  Hang in there.

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited October 2008
    Oh Annie - I'm so ANGRY - at your surgeon for "missing" this - but mostly for this ugly Beast trying to frighten you! Don't despair - you will get through this even though it sucks big time. Cry
  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited October 2008

    Oh, wow -- just logged on for the first time today.  Like Sushanna, I'm repeating a four-letter word.

    You haven't done rads yet, right?  Was that scheduled to start soon?

    Tender, Gina and Deb all sound right on to me.  Residual, not recurrence.

    Please feel all of us with you.  Love you. 

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited October 2008

    Hi all,

    Thanks for all the sympathy. Yes, it is residual, not a recurrence. That is precisely what makes me so angry -- his sloppiness might well end up costing me my life. My mother already lost a daughter some years ago, and my daughters lost their father this past May. Wouldn't you think the incompetent idiot would have been a bit more careful? To add insult to injury, I believe this node is the one that biopsied positive when I was first diagnosed.

    Yes, I guess I have to change my node status now. The only problem is that MY node is still inside me. I obviously do not have high hopes for the PET scan.

    Thanks to all,

    Annie

  • cmb35
    cmb35 Member Posts: 1,106
    edited October 2008

    Annie,

    I remember when I found I my SNB was positive. I had been so "strong" (don't you just hate when people use that word to describe you?) up until that point. I went into shock (again) when I heard it was in my nodes. I came home, got into bed, and my body started shaking from head to toe. Like bouncing up off the bed shaking. Luckily my rat bastard ex-fiance (who was just my plain old boyfriend at the time) was 6'1" and 200 lbs. He literally lied on top of me to stop me from shaking.

    I can only imagine how upset you are at your medical team. News of such incompetence, coupled with news of more treatment, is devastating and would make anyone want to take their ball and go home. So, as everyone here already said, let yourself feel those feelings (though take some help from so happy pills if you need to), and I have faith you will get back to your cancer kicking butt self very soon. 

  • VickiG
    VickiG Member Posts: 536
    edited October 2008

    {{{Annie}}}  I know this has knocked the wind out of you, but I know you will feel better once you have had a little time to process everything.  It sucks, believe me, I know how much it sucks... but you will fight this with the same tenacity that you have from Day 1.  Give yourself a break & realize it's ok to feel like the rug has been yanked out from under you, and then get right back on your feet & remember that your spirit doesn't give in.  Now you know what you are dealing with, so you are already one step in the right direction.  Oh, and no, it is NOT a death sentence.  Definitely not!!!!!  :::hugs to you::::

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited October 2008

    Well, you haven't been all that happy with your team all along.

    Are you considering a second opinion, like at one of the national cancer centers, before proceeding?

    Annie - you are SO WORTH WHATEVER IT TAKES.  Start expecting your world to meet YOUR needs - you are certainly entitled.

  • NancyD
    NancyD Member Posts: 3,562
    edited October 2008

    Shoot, Annie, that sucks. But as someone who had a few more positive nodes (also one grossly enlarged that was biopsied and left in for four months), all I can say is I'm moving forward and not looking back.

    So, it either comes out and they do rads, or they start directly doing rads, is what I see happening. I think given the length of time it's been sitting there, they want the PET scan to make themselves (and you) feel better.

    Rads may not have been in your plans, but they do a lot of good clean-up. Messy surgeons aren't the only people who rely on them. However, I don't know if you had recon plans in mind that might have to be altered now that rads are on the table. Another wrench in the works.

  • otter
    otter Member Posts: 6,099
    edited October 2008

    Aw, crap, Annie.  You know we were all silently chanting, "seroma, seroma, seroma."

    Ditto what everyone else has said here.  The fact that there were dead cells surrounding those live cells is a good thing--the necrotic layer probably kept the live cells from growing and escaping.  OTOH, it is infuriating when we trust our docs to do their best, and they mess up.  All I can imagine is that your surgeon missed that LN because it looked so much like the fatty tissue (the "axillary fat pad") in which it was embedded.  Still, it would have been so much better if he had been able to tell you there were no lymph nodes--much less cancer cells--left in there.

    OK.  Deep breath.  You've had a lumpectomy, so you would be getting rads anyway, right?  Rads directed at the axillary area would be standard procedure for a woman with multiple positive nodes.  Any local escapees can be zapped that way.

    The mast you have planned will take out any residual tumor cells that might have been missed with the lumpectomy.  There is also the option of having a few rounds of "regular" (post-surgery) adjuvant chemo, for systemic clean-up.  Nancy did that--her chemo was split between neoadjuvant and regular adjuvant scheduling.

    And, as Sue (ICanDoThis) mentioned, you also have the option of going to a larger cancer center for a 2nd opinion and possible follow-up care.  I'm visiting family members in Oklahoma right now, and we drive right by the Tulsa "Cancer Treatment Centers of America" hospital every day.  I'm not suggesting you go there, although I know you were thinking about it at one time.  It might be a good idea, though, to ask for a referral to a larger, NCI-designated cancer center--perhaps MD Anderson, since you are in the same state anyway.  If I were you, that's what I would do, ASAP.

    Whatever you decide, there will be lots of BCO women walking right alongside you, steadying you and holding your hand.

    otter 

  • BMac
    BMac Member Posts: 650
    edited October 2008

    Wow this is unbelievable.  I'm sorry this is happening to you.  Is this the end?  I sure hope not.  I thought I was at the end in November when I got the news that the lmyph nodes behind the breastbone were involved and they couldn't operate on them.  When I pressed my surgeon for a stage he hesitated before saying a late stage III.  I felt that he was even thinking stage IV.  I really thought this was the end of the line for me.

    I did chemo first, then surgery, then rads.  Luckily for me the chemo worked in shrinking everything, the path report was good after surgery (surgeon was almost giddy with excitement) and the cat scan was clear.  It was the best news I could have hoped for.  So my dear I feel optimistic for you.  I DO know how you feel because I was there last fall and I sincerely hope that all goes well for you.  You certainly deserve it.

  • Sassa
    Sassa Member Posts: 1,588
    edited October 2008
  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited October 2008

    What would I do without you guys? You've become my lifeline to sanity. I'm sort of taking the day off today to mull things over. I'll be back to the boards tomorrow. I have my PET scan on Thursday, and will know what the battle plan is at that time.

    Love to all,

    Annie Camel Heart

  • sueper13
    sueper13 Member Posts: 1,224
    edited October 2008

    Annie,

    I haven't posted to you much (I think we hang out in different places) but from what I've seen of you, you can fight like nobody's business. I can't understand what you are feeling, but I can echo what's been said here--one foot in front of the other, and we are all walking with you--together we are strong enough.

    This is not the end. It's a little, pissant, annoying delay in being all done with treatment.

    Love to you and hugs,

    Sue 

  • jeanne46
    jeanne46 Member Posts: 1,941
    edited October 2008

    Just chiming in with the rest to say how sorry I am that your lump was a residual cancer/node but also glad that it was "residual" vs. "recurrent."  I thought all my lymph nodes had been removed when I first had breast cancer in 1992 (23 were taken then), but last February found a swollen axillary node in the same arm.  Huh?  Was then told that often not ALL nodes are taken (I don't think they meant on purpose).

    Good luck with the PET scan on Thursday.  I thoroughly expect all to be unremarkable (medical- speak for CLEAR). 

    Edited:  Don't know why I'm having such a hard time with the text.  Can't seem to change all the screwy type face.   

  • lisamed123
    lisamed123 Member Posts: 186
    edited October 2008

    Annie,

    I am so sorry for your situation and how it has brought you so down.  I have noticed you since I joined here, I read much more than I post.  I do know that we have a similar time frame and the triple negative diagnosis, only I had 10 positive nodes.  I am not sure of the specifics of your surgery or treatment.

    I was so clueless when I started out.  When they told me I had 10 positive nodes, it truly did not register to me what that meant, then a couple days later I looked up triple negative on-line and I was completely discourged and "down and out".  Then waiting for scan results to see if it had spread was the worst.  That was my lowest point. 

    I know how discouraging this is for you, but I have to echo what everyone else is say, thank God is it not a "recurrent".  I know I felt better when you said it was residual, because I thought if it could come back to you so fast, I could very easily be in the same predicament at any time. 

    Please hang in there and keep fighting.  My cousin, who is a hospice volunteer, gave me a book by Bernie S. Siegel, MD called "Love, Medicine & Miracles".  I do not know if you or others are familar with his books, but I am finding it to be very inspirational.

    Take care, and please hang in there.

    Lisa

  • chumfry
    chumfry Member Posts: 642
    edited October 2008

    Annie:

    This doesn't take bravery. This only takes stubborness. I've been following your story and, from what I've read, I think you've got *plenty* of what it will take to get through this. Laughing

    That said, I think you're right to rest up and lick your wounds. You've just been hit in the head with an ax handle. I'd be in bed with the covers over my head for awhile. Yell  But once you've rested up a bit and get the info you need to make decisions, you'll finish up this fight.

    I don't know if I've shared this story with this group. I'm one of the Rocktober Girls who started chemo in October 2005. We moved to gmail for more privacy, but we're still together. We've even met in person, twice! Chicago in August 2007, when I was bald from chemo for my second primary, and Las Vegas this past May.

    Early on, one of the other Rocktober girls told us this story about elephants. When an elephant gets so sick that she has to lie down, she's usually doomed. Predators will get her. So when a sick elephant starts to wobble, all the other females in the troop crowd around her in so tight a circle that she literally can't fall down.

    My Rocktober girls held me up after I learned of my second primary. I could feel their concern and strength flow into me from across the miles. It let me rest for a bit above the chaos of fear.

    Can you feel us around you, Annie? We are here and we won't let you fall.

    --CindyMN

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited October 2008

    Annie, If it had to come back this is a good place.  Zap & Cut and move on.  Hang in there we know you have it in you to finish this journey with flying colors.

    May peace be with you.

    Flalady

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited October 2008

    Cindy, AnnNYC, Gina, Deb, Flalady, Lisa, Tender, Jeanne, Sue, all my female herd members --

    I'm writing this while crying. I'm not crying because I'm scared (although I am), but because I'm so touched by the warmth and support you provide me and one another. The elephant story is phenomenal. I think I'd vaguely heard something like that before, but didn't remember it until I read it again this morning. We females are pretty awesome if we don't allow ourselves to be overcome and ruled by a patriarchal universe.

    Well, I guess it's going to have to be one foot in front of the other all over again. Tomorrow the PET scan, and then treatment based on what shows up. The doctors and I are all hoping this is residual disease since the tumor cells are inside a necrotic mass, but since all other 19 nodes were sterile, that also seems a bit hard to believe. We shall see how things look when the deck has been dealt. Radiation was in the cards anyway; chemo will be a bit harder to deal with emotionally since my hair is nearly where I can go wigless, but we'll do what needs to be done. My fabulous mom and my wonderful girls need me around for a while longer. Did I ever tell you how much I love my daughters?

    In the meantime, I saw the plastic surgeon yesterday to see if I'm a candidate for reconstruction. Funnily enough, he told me to gain weight so as to have enough tummy fat for the procedure. "Eat Blue Bell ice cream," he said, and had his nurse give me some frosted cupcakes to take home. Never did I think I'd see the day, Hah!

    Love to all,

    Annie Camel Fat

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited October 2008

    Annie, I just got caught up on your problem. sorry to hear that they didn't get that stubborn node out. My mom was not TN but had 15 nodes removed and had 8 positive in 2001. She did the chemo and rads and is doing great. We are all here to support you like the herd of elephants. I guess you will need to change your name to Annie Elephant tail now.

    I will gladly give you part of my belly fat for your new boob! I wish my doctors would tell me to eat Blue Bell Ice cream and gain weight, all they tell me is you need to lose some weight!

    Sheila

  • femme
    femme Member Posts: 262
    edited October 2008

    Dear Annie,

    Not only are we elephants circling you and holding you up so that you can never fall, but we are multi cultural, multiracial elephants with NO inbreeding and the strength of each ethnic group.  We come together as an amazing female force, from all over the world.  We will not let you down.  We are with you more than you will ever know.

    In hoof shaking authority with lots of trunk hugs and nose rubs,

    femme,(one of the herd who must be heard,and seems to have heard more than she would like). 

  • chumfry
    chumfry Member Posts: 642
    edited October 2008

    My elephant sisters have gotten me through a lot! Thinking about that story always makes me feel strong and cherished. I try to share it when appropriate.

    And I, too, would love to donate some belly fat to your cause! LOL

     --CindyMN

  • AlaskaDeb
    AlaskaDeb Member Posts: 2,601
    edited October 2008

    I have enough belly fat to make about 10 boobs......but what would you expect from an elephant sister :) I love that story, by the way!

    We are here for Annie.

    Just think of us all there in the pet scan machine with you.....you may have to share you xanex though

    Hugs

    Deb C

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited October 2008

    Just a real quick thought as I scoot between classes: I think it's hilarious that female elephants ae called "cows," and that cows have udders.

    I'll be checking back in tonight to try to stay in control of myself. In the meantime, thanks for the mammaries, and if anyone has udder thoughts to share, I'll be excited to hear them.

    Love and groans,

    Annie Camel Cow

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