Flalady Update

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FloridaLady
FloridaLady Member Posts: 2,155
Flalady Update

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

    This just gets more interesting...

    I waited 4 1/2 hours yesterday to see the head of bc surgery at Moffitt CC near my home.  (top ten center)  He had not read my PET scan and just looked at me and said I remember you for last Sept with PET Probe surgery and you sure look wonderful.  (I thought... thanks but I did not wait for almost five hours for this...) He asked me what was going on. I explained about two nodes last Pet in Dec 07 and this time they are not there, and now I have two new ones. His comments..."He feels that one Pet scan does not mean this is cancer and even if it is... the nodes are so small that we should not go chancing after them yet."

    He also said that they (Moffitt) has found that treating localized recurrence with chemo is a waste of time.Surprised What!!!!!  They use too do the old chemo slam with stem cell transplant at Moffitt, and they found that it could kill cancer cells every place in the body but the breast with chemo.  I can tell this guy is very anti-chemo ...working at a major cancer center??? He did say chemo can work with other mets but not chest wall??????  (I have been told this at other places)

    He said there would be a possibility of using Gamma or Cyberknife later if this does turn into something but he pretty much told me this would be a waste of time also.  So they are saying I have this little bit of cancer and no way of treating.   Wait until it goes to organ or bone mets and they can only treat those areas but not my chest-wall.

    He said I was so rare to be triple neg with so many localized recurrences they don't know how to really treat me...

    Fine! I was not ready to do any thing with these small area any way.  If they can't get me anymore facts than this, I will continue to treat alternatively and I believe this is where the two missing nodes went last time.

    Living in Hope,

    Flalady

  • wishiwere
    wishiwere Member Posts: 3,793
    edited April 2008

    Geepers!  Can you send your records/info to another place and get a 2nd opinion.  You're right, he wasn't very helpful and really sounds like he wants to just wait till it goes somewhere else?  Easy to say when it's NOT him!

    {{hugs}}

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited April 2008

    Hi Floridalady,

    It must have been a very difficult appointment and frustrating.  I agree with wishwere.  I would get another opinion, perhaps see a woman and get her perspective. 

    I'll send you some positive energy~~~~~~~~~

    Warmly,

     Sadie

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

    I have already been to MD Anderson Houston and they told me pretty much the same thing... They could give me chemo if I wanted it but it would not control my disease more than two months at best.  Because of my neuopathy it was not worth the risk.

    Flalady

    Flalady

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



    Hmmm, this gives you pause, doesn't it, Flalady. I'm glad to see you had a followup, yet it does sound a tad confusing. And to wait so long at the appointment, which isn't so unusual when you see the top doctor, is hard on top of taking in the words and making sense of them in a complicated situation.



    So, now is it you wait for a while until a third scan is done down the road to break the tie, so to speak?



    I'm wondering if interventional radiology might be able to deliver a pellet chemotherapy, as a way to deal with your findings, should it be technically feasible at some point. I know your surgeon thought maybe cyberknife at some point too.



    I'm sure you'll keep on with your current personal regimen. I'm hoping in a bit some clearer direction may come your way as to recommendations. Surely some triple negative breast expert might have experience with slow growth situations.



    I'm glad to see you post. I've been wondering how you are. Thanks for the update. I'll be thinking on this and you.



    Tender









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

    Hey Tender,

    I like your ideal about the pellet chemo, but when I spoke to UNC last year they said it only work so "deep" in the body and mine was too deep.  But it is something that I will follow up on after this next set of scans.  (I think in 2 mths) As for a expert for triple neg I have not been able to locate any. (not even at MDA) I'm still pushing for gamma knife.  They are building a new location about 35 miles from me.  I'm also waiting to see what my local oncologist says...I really think he did not want to wait around.  But he hates this doctor I saw at Moffitt so he may buck him on this.

    I have peace... that I have time to wait.  This guy said if it hasn't wanted my other body part by now it's not going to want them anytime soon.  I sure hope that is true!

    Flalady

    Living in Hope

    Flalady

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



    Flalady,



    I think on the East Coast, Lisa A. Carey, MD, Associate Professor of Hematology/Oncology at the University of North Carolina, Chapel Hill, North Carolina is widely recognized as an expert in triple negative disease.

    She routinely lectures on it around the country, and has studied it based on it's prevalence in the "Carolina project". I think of her name particularly in your localized situation, due to it's slightly unusual nature, since Dr. Carey has been deeply involved in exploring the behavior of these tumors based on their underlying biology. She may be as interested in your specific situation as you are in her expertise. I understand she is approciable and kind.



    Perhaps you might wish to look around at her writings some, and ask your own oncologist. Maybe he could head up a phone consultation with her, providing a summary of your treatments, and history of the disease and where on the chest, and of course your CAM therapy.



    One has to wonder if your tumor harbors some special tumor suppression gene expression atypical of triple negatives, or genes involved in metastatic suppression or stromal suppression (the background on which cells must attach and migrate etc) which may be a real help to all triple negatives to study while providing help and treatment for you.



    Please consider this woman oncologist. She's a gracious, knowledgable person.



    Glad to see your Living in Hope again,

    Tender

  • davitamorales
    davitamorales Member Posts: 11
    edited April 2008

    Oh my God!....So many stories about Triple Negative, that I really do not know what to do.   I had my last A/C session on Feb.28 .  My tumor was grade 3  (2.8cm)... I had a mastectomy immediately, then went to the Oncologist for treatment.  When he noticed I was Triple Negative he said I must go for turther treatment but wasn't sure yet on which chemo... I have not gone back to see him, since I really do not want any more chemo treatment....Because I thought that with Mastectomy and 4 sessions of A/C would be enough...And now reading all the stories about Triple Neg...I am scared, and still  do not feel like visiting a doctor again....

    Anyone Triple Neg.  has had only mastectomy and that's it?? and is doing well???...

    Dava

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

    davita,

    Please be sure to read the thread "where are all the triple negs".  There are some wonderful positive stories on this thread that hopefully will ease some of your fear.

    Flalady

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