I think I have a problem

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  • Maryiz
    Maryiz Member Posts: 975
    edited October 2008

    Annie, phewwwww, so glad to see the good news.  Sounds like you are being vigilant and taking control of the situation.  So happy for you.  Maryiz

  • AnneW
    AnneW Member Posts: 4,050
    edited October 2008

    Yeehaw, Camel Gal!!

    What a sweet relief. Funny how preparing for the worst never really prepares you for the worst at all, but it sure makes good-to-mediocre news all the sweeter!

    Now. Relax and enjoy life. Get through this next phase. Play with the grandbabies. Go stimulate the economy. Drink some wine. Smile from camel ear to camel ear.

    That's what I'm doing!

    Anne

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

    Hi all [edited to clean up language],

    Interesting stuff: I was just looking over my orders and note that even though BS told me this is "residual," in the paperwork he classifies it as "recurrent." Also, he states clearly that this mass is a lymph node, even though he told me yesterday he has "no idea what it might be."

     I think what bothers me most is that he now believes he's snookered me completely. At the same time, I know he messed up but has no idea I realize it because he believes he's smarter than any patient could possibly be. I would have so much more respect for him if he honestly said, "look, I made a mistake. These things happen. This time I'll be super-vigilant." But no, they make human mistakes, yet want to be seen as gods. What a sad thought to take into surgery ...

    Can one ever trust these people?

    I am so tired of all the dissimulation and hide-and-go-seek. I also think I'm going through some sort of post-stress deflation this evening.

    Annie Elephant-Camel

  • AnneW
    AnneW Member Posts: 4,050
    edited October 2008

    Vent away.

    It's demeaning to have someone try to challenge your intelligence. There would be far fewer law suits if physicians owned up to errors in a compassionate way.

    Annie, I lost track somewhere along the way...is this BS the same one who you liked so much initially when you were going through your diagnosis hell in Camel Land? If so, what happened? And is this guy your only option?

    Anne

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

    Hi Anne,

    Yup, the same one. The higher they perch, the harder they fall. I wonder if any of them ever read these blogs or if they think patients don't know how to write.  No other option in this area but him, and I need to stay here because of work. That's simply the bottom line, so I'll have to go with the situation until it's all over one way or the other.

    Good to hear from you, as always. I hope everything is going great for you, dear Anne!

    Hugs,

    Annie

  • rockwell_girl
    rockwell_girl Member Posts: 1,710
    edited October 2008

    I'm so glad to hear your PET Scan is clear

    Everyone on these boards are so awesome

     I love you all : - )

  • jdash
    jdash Member Posts: 754
    edited October 2008

    Annie  i am sooooo happy to hear your great news!  i follow all your posts and since you began your treatment I have always been praying for your quick recovery   these doctors can be so damn frustrating sometimes!!!!!   sending you a great BIG HUG thru cyberspa 

    xoxoxx

     julia

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited October 2008

    Annie - hide-and-go-seek indeed! That's exactly the game my PS has played with me since my surgery! Fortunately someone on this board advised me to get my operative reports - and THAT's how I found out I never got the Diep surgery I requested! My PS's lack of honesty with me is the main reason I am switching to a new PS. I switched oncologists for the same reason. Both these doctors came highly recommended and seemed compassionate, but they treated me like I was some kind of ignoramus. They must be used to women who don't get copies of their reports - women who don't ask questions - women who need "white lies" to get them through the day. That's certainly not me!

    Annie - did you confront your PS with the information you obtained from reading your orders? I suppose my own fear of confrontation makes me a culprit in my own situation ......I told my old oncologist I was switching doctors because I found someone closer to home (which was a minor reason)........I SHOULD have told him the real reason, but chickened out. I still haven't confronted my PS yet about how I feel he misled me - and how I don't trust him to do my stage 2 revisions.........I guess he'll just write me off as "lost to follow-up". Perhaps, like in college, these doctors should have their patients fill out an anonymous questionnaire about how well they did their job.  Do you think they'd WANT information like that? Or would it burst their own egos too much? Tongue out

    Post-stress all you want Annie - and I hope a calmer routine next week will give you some sense of stability and comfort!

  • KPolasek
    KPolasek Member Posts: 184
    edited October 2008

    I am so scared tonight .... my breast is looking weird .... hard all around the incision area ... the incision area itself is indented .... there is an area that is redder than the rest and it is about the size of a quarter or a bit larger. IT HURTS .... my arm hurts .... and I am sick of hurting!!!  I have had an ultrasound and the radiologist said that there is a cyst and could not say for sure if there is a malignancy.  So, then I had a mammogram ... they don't "think" that the mass is malignancy ... could be scar tissue.  I had my lumpectomy last year, 11/1 ... then chemo and finished rads on 5/9/08.  Anyone else out there having these kinds of problems?  Oh yeah, I forgot to mention, I also have "tennis elbow."  And, my whole arm hurts to lift ...

    I finally decided to go to a female breast surgeon in another city to get her opinion.  I will see her on Monday at 1 p.m.  Please pray that this woman has some brains.

    Kay

    P.S.  Sorry that I am whining so much

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Wonderful news, Annie. I can't help but wonder...chemo, lymph node with tumor, necrosis...um isn't that what chemo does...cause necrosis? I don't understand why the BS would be baffled by the presence of necrosis. He should, however, be concerned about the presence of a node that should be in a jar somewhere instead of in your 'pit!

    But then what is, is. It looks like you're good to go for longevity. Congratulations on another crisis conquered.

    Judie

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

    Dear fellow Elephants,

    Thanks for all your comments and encouragement. As far as the BS is concerned, I think he must be concerned about the remaining node, but perhaps focuses on the necrotic surroundings in order to make things sound less dire than they might be. I don't like the idea that after completing chemo, I still have free-floating cancer cells, and wonder what that bodes for the future. I can't imagine that my chances now for long-term survival are as good as they were when we all thought the cancer was gone after surgery.

    I have an appointment with the oncologist on Wednesday morning, and DH and I will ask him to be a straight-shooter. I want to know what my odds are now, and will not accept the assurances that prognosis hasn't changed with this new development. Of course it has. And they need to look us in the eyeballs and tell us the truth. Wonder if they are even able?

    Anyway, I'm thrilled with the results of the PET scan, and would like to stave off stage IV as long as possible. I wonder what the next steps will be after this Thursday's surgery and then radiation which is to follow closely behind.

    Love to all,

    Annie Cow

  • rumoret
    rumoret Member Posts: 685
    edited October 2008

    Just came across this thread......been off the board for awhile do to planning and attending my daughter's wedding.

     So I am so glad to hear that your PET scan came back clear. I am also glad that all of our sisters were there for you Annie.

    Sending you my love,

    Terry 

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

    Dear Elephant Sisters,

    Well, I saw the oncologist this morning, and this is the upshot: At diagnosis, I had two areas of malignancy, the primary breast tumor, and one positive lymph node. After chemotherapy, both had shrunk so small they were no longer palpable. The BS removed the remaining breast neoplasm, a cocoon of necrotic tissue encasing a .5 mm residual medullary carcinoma. He thought he got the node as well, but apparently missed it. This is why the 19 nodes he did take were sterile -- they probably never had cancer to begin with. However, and this is where I am totally flabbergasted, the one node that had biopsied positive was left behind.  We can deduce that node had remaining cancer (the reaction to chemo probably mirrored that of the breast tumor), and that is why it has now grown to 3 cm again. It will be removed surgically tomorrow.

    My medical team sees no reason to give additional chemo at this point, and are basing that decision on two factors: first a negative PET scan; and secondly, the report saying "no vascular or perineural invasion noted." The surgery will be tightly followed by whole breast, axillary, supraclavicular, and internal node radiation, and I'll have MRI plus CT scan every six months for several years, and regular follow-ups for ten years. They want me to continue the Avastin as soon as I'm healed.

    What's your opinion? Is this good enough?  Can you believe that surgeon? What on earth was he thinking? What a bumbling idiot. No wonder he seemed ill at ease when I saw him the other day -- he's probably wondering if a lawsuit is coming down the pike at full speed.

    I hope this all ends well ...

    Love to all,

    Annie Cow Dung

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Geez, Annie.  What a total mess.  I don't even know if I have an opinion, because it is all so surreal. 

    I am going to be thinking of you during your surgery, and praying to God that the surgeon is watching himself a little more closely this time.
    Love and prayers, Deb

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

    Annie, I am sorry for this difficult situation and will be praying as well for your benevolence.
     
    Tender 
  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited October 2008

    Dearest All,

    Thanks for your feedback. I guess my benevolence will depend on the long-term outcome of this mess-up. I shall be extremely benevolent if it's merely a bump in the road. If, however, this proves to be a death sentence, I'm fairly sure my store of benevolence will run out sooner rather than later.

    Love to all,

    Anne the probably-not-so-benevolent.

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

    Annie - I know this sucks rocks. But, today, it appears like you are dealing with no more cancer than you were before the surgery. I'm glad that evil thing will be gone from your body tomorrow, and that they have a plan for continuing treatment after surgery.

    Just for today, I am willing to trust that this will just be a bump-in-the-road, and that you can gradually learn to exhale. This whole thing has been so hard on you - I'm glad the surgeon looked stressed, he should try a half-hour in your skin!

  • femme
    femme Member Posts: 262
    edited October 2008

    Dear Annie,

    As ICanDoThis has just said, you are dealing with no more cancer than before the surgery.  Tomorrow it will all be out. You were lucky (if one can use that term about cancer) that the "bump' reappeared and alerted you to its' existence.  You are certainly the "general contractor" for this Camel Turd Demolition and Removal project.  Thank goodness you are smart and not an oistrich.  A less spunky camel would have said, "ah it is nothing"...subtext- "enough, already"'

    You will be OK.  We elephants will see to it. Your doctor might be a good candidate for a complaint of professional misconduct and incompetence.  Each state has a review board that reviews situations regarding a doctor's professional conduct that is questionable. This is not about bedside manner or rudeness.  It is about, among other things, bad decisions made, lapses in judgement, abandonment of a patient or failure to act, thereby putting a patient's health in jeopardy, drug use by the doctor,etc. You can find the info on the web if you look up your state's Dept of Health, Office of Professional Medical Conduct website .All one has to do is be honest and write up the narrative in a concise way.  It is then out of your hands and the state will take over if it feels there is cause for further investigation.

     Right now you have to get through the surgery, which does not sound too extensive, AND HEAL.  If fantasies of getting this doctor to be accountable for his actions, or at least scutinized by his peers, helps you recover quicker, allow yourself to think about it.  Otherwise just be assured that all we oversized, smart women elephants, are at your bedside, keeping the jerk-doc anxious that we'll "out" him and subsequently rub him out.  No size 4 elephant need apply for this watch tomorrow!!!

    May God and all the Goddesses hold you in the palms of their beautiful, deft hands, sweet Annie. Tomorrow will be a busy day for all of us as we keep watch over you.

    femme 

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

    Annie,
     
    Wishing you a restful night and thorough, yet uneventful surgery tomorrow. Hope it's bright and early to be done with so you can come home and have DH attend to you.
     
    Don't forget to have him get the pain rx filled while he waits. I bet almost all we wives put our husbands or SO to work doing this step.
     
    Big hug,
    Tender 
  • otter
    otter Member Posts: 6,099
    edited October 2008

    Annie, I hope that operating room is huge, because we're all going to be crowded in there....appropriately gowned and masked, of course.  I just washed my scrub pants and top this morning, so I'm all prepared.

    There is no need for you to feel as if you're supposed to be benevolent.  That is not your job.  Your job is to be the patient, and your responsibilities as a patient do not include having to be patient all the time.   (You do not have to be a patient patient.)

    Just this evening when I called our residential phone company for the dozenth time to complain about our poor-quality phone line, I asked the customer service person to be sure our account is flagged to say I am an "angry and frustrated" customer.  She said she would be sure to do that.  (Yeah, as if it will make any difference.)

    My point, of course, is that we do not need to be polite all the time.  You and I know how critically important it is to be assertive--even aggressive--when necessary.  Sometimes it's especially necessary when we're in a subservient role (i.e. the patient).

    On the other hand (and you knew this was coming, too):  At the present time, your most important job is to get better.  You need to get through tomorrow's surgery (which will be made more awkward for your surgeon by all of us being there, watching over his shoulder).  You need to move on to rads, for which you can get loads of advice from the Rads board.  (I've lurked there.  It's great reading.)  It sounds like your medicos have a plan for monitoring you, and the plan sounds reasonable.

    So, go with it.  Get this next stage, and the one after that, out of the way.  Don't consume your time and energy with anger....yet.  There is plenty of time for that, and we will all be cheering on the sidelines or running beside you as you make your charge.

    The only thing I can add is that you still have the option, even as you continue with your treatments, of seeking a 2nd opinion at a bigger cancer center.  You might get ahold of the path slides and report from tomorrow's excision, plus everything that preceded it, and take the stuff somewhere big, so they can look at what has happened and give you an opinion from another viewpoint.  I guess once you start daily rads that will be harder to do, logistically--but you could arrange it to happen immediately after you've finished rads.

    I am scratching my furry head (see the Hair Hair Hair thread on the Chemo forum, for a pic), trying to understand how the very axillary lump that brought you back from your overseas assignment was overlooked or bypassed during your initial surgery.   Just can't figure that one out.  (Neither can you, I know.)

    But, as I said, this may not be the best time to be phoning your favorite attorney.  Take care of your health first--then take care of your anger.   Shout at us about it in the meantime.  We're listening.

    Big hugs, Annie....

    otter 

  • sushanna1
    sushanna1 Member Posts: 764
    edited October 2008

    Annie--Just wanted to chime in to wish you well.

    femme--This size four (since chemo and chemopause, size six) can hold her own in a pack. 

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited October 2008

    Annie, hugs and prayers for you,

    (and LOTS of prayers for enlightenment of the benighted...)

    Love from another pachyderm,

    Ann

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    How's our Annie doin? 

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

    Still waiting here for news.

    Sheila

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

    Annie, More prayers for a quick surgery and recovery. Nothing like having your surgeon call a "do-over", huh?

    I second otter's advice. First, spend your energy healing, then think about steps to address the surgeon's mistake. 

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited October 2008

    Just checking in -- thinking of you, Annie!

    ((((((((Hugs))))))))

  • femme
    femme Member Posts: 262
    edited October 2008

    Annie, wake up and tell us all that you are feeling OK.  There are probably over 200 elephants in your room now and it is "Standing Room Only" here in Texas.  I for one am getting sweaty, my trunk fell asleep a few times in the crush, and my feet, all 4 of them, hurt.  Anyone know where I can get a good price on an elephant pedicure later today?

    Annie, I feel it in my hide; you will be fine and very soon you will be up to your old tricks.  Just give us a snort as soon as you can, so we can all make flight arrangements and fly back to our home(s).

    We are a reserve that convenes in situations where ordinary mammals fail.  Our motto - Have trunk, will travel.  We have gotten together to eloquently cause the earth to move for your successful outcome.

    And Sushanna1, I did not mean to step on your toes.  Size 4 was just a metaphor.  I am sure that your size 6, and my size 10 and all sizes from petite to Full, Missy and Half Sizes, are able to hold our own.  The silver lining of this cancer circus is that no one is left in the peanut gallery; We are all women of substance.

    Annie, Annie, talk to us!

    femme 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Size 10 pachyderm checking in. Do you have any idea just how many of us are out here? You are loved, dear Annie.

    Judie

  • Boo46
    Boo46 Member Posts: 539
    edited October 2008

    Thinking of you and hoping to hear good news

    Sue

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited October 2008

    Sending a prayer your way Annie - hope you're OK!

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