Help-Doc says IBC-like trmt bc odd presentation

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in IBC (Inflammatory Breast Cancer)

hello, after completing trmt for left idc stage 2a and 10 good more months, inflamed node led to dx of recurrence in left and right axilla nodes as well as in left supraclavicular node; not in breasts.  Then immediate ACT chemo, bmx coming up and then radiation.  New radiation doc and surgeon said can be: 1. Occult primary on new side and local recurrence on old left side; 2. A local/regional recurrence with lymph system spread that crossed the median to right side; or 3. A distant metastasis to the new right side axilla as the area of spread.  They both said 1 and 3 are less likely but 2 is more likely.  Radiation doc then said this means we are treating you like its inflammatory breast cancer because it's obviously an aggressive cancer.  

SO, I knew that it was aggressive bc it came back 10 months after trmt but I am completely freaking out that this is aggressive like (or perhaps more than) IBC.  My questions are: what are the treatments for IBC? I had sort of figured that I was three c but now if it's IBC - like that means three b.  I'm sorry just freaking out.  I don't know what side is up and I can't even find kinship among our bc.org community as I'm not a usual presentation.  The closest I am is IBC-like.  

Any counsel? Does my treatment seem similar to your own?  Do IBC-like people live? Thank you!

V

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited January 2014

    V, treatment for ibc is usually chemo first, surgery & radiation.  I'm 4.5 years out & doing well even though I was diagnosed stage IV with bone mets from day 1.  Best wishes on your treatment.

    Terri

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    Terri. That is very helpful.  That is my treatment plan. Thank you for that info about your health. It is very reassuring.  I wish you the best.  V

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    I think you should ask your doctor to 'stage' you.  Usually, in my experience, findings in the supraclavicle usually means stage 4.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014
    Hi Alwsyshope,
    I have asked for this indirectly and haven't gotten very far. I think now that I've switched to a new hospital once I'm post surgery I'll get more info. As far as the supraclavicilar nodes I've been told that these are no longer considered an indicator of stage four. Thank goodness and thank you! V
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014
    Bonnie. Thank you. My docs are moving fast - was told surgery within 4 weeks of chemo-I'm scheduled for four and a half weeks out due to docs availability; rads scheduled for simulation 3 weeks post surgery and doc mentioned chest wall, internal mammary nodes, supraclavs on both sides, breasts, and axillas. And I've started on Aromasin 2 weeks post chemo. Last years chemo sent me into menopause so I'm not sure if I need an oopherectomy. Would you think so? What is femara?

    Thank you for the info and your kindness. It helps a lot.

    V
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    HVV, you are correct.  I looked up staging here and node involvement above or below the collarbone would be stage 3C.  :)

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    From what I've been seeing/reading, neoadjuvant chemo is being used more often with other types of BC now, especially with a recurrance - not just IBC. 

    Even with IBC, the TX plan is not always the same though some neoadjuvant is.  Most will do 2 different 'batches' neoadjuvant but not all do.  I did 4 DD A/C neoadjuvant, 2 weeks later UMX, 3 weeks later started 12 weekly Taxol adjuvant followed a week later with starting rads and started Femara a week after starting rads.  As my chemo Dr explained it, as long as the A/C did it's 'job' and got a 'lump' to form and shrink it so surgeon could  'get it out' then Taxol would be adjuvant so it only had to deal with any cells that surgery could not get and any 'hiding' in other areas.  That's a bit more simplistic than his (and surgeon's) explainations but the gist of them.  Apparently it was the way to go for me - I'm 4+ yrs post DX and as far as I know still NED.   19 of the 19 nodes removed were positive, some were supraclavical so was 3C.

    We are each so unique.

     

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014
    Kicks, thank you. That's helpful. Scans seem to indicate shrinkage/resolution though of course pathology will tell. I'm glad for the explanation and hope that you continue to be well. Here's hoping that my path results post January 15 surgery shows Ned. V
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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    HVV,

    IBC people better live!  I'm planning to live a long time to continue to harass and love my children and eventually my grandchildren!

    I was diagnosed in August.  Treatment plan is chemo (done!) for six rounds, every three weeks; then surgery (double mastectomy for me, no skin sparing, happening on January 16th), then radiation (7 weeks of daily treatment-starting in mid February).  I am HER2+, so I will also get Herceptin every three weeks for a full year.  For the first six rounds, the Herceptin was pumped in the same day as chemo (carboplatin and taxotere).  Now that I am done with chemo, I'll go in for Herceptin every three weeks through August.

    We are here for you and we will survive and thrive together!

    I think you popped into the September Chemo group I'm in??  Yes?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014
    Thank you KJ. I'm beginning to see that. V
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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    Good!  :-)  Let me know if I can be of any help.  I'm just a little ahead of you on the road to recovery.

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    Thanks, Bon.

    Humor is a good chaser med for carbo, taxo, hercepto, surgio, and radio.  ;-)

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    HVV,

    There is a great support group on facebook for IBC. Do a search for "Inflammatory Breast Cancer (IBC) Support".  You will have to ask to join and one of the group admins will have to admit you. It is a good group to connect with folks specific to IBC.  Lots of survivors and thrivers there.  :-)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    Hi Kathryn, I asked to join but think my message went into the other mailbox.  Would you mind helping me out?

    Vielka

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    Hi HVV,

    I'll mention to Terry to look in the "other" box.  But, it is likely that she just hasn't seen it yet.  Can you shoot me a private message with your last name?

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    Done. :-)  Feel free to friend me on facebook. 


     

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  • bride
    bride Member Posts: 382
    edited May 2014

    Just to prove BC really changes fast. After finally getting out under chemo fog and Taxol toxicity, my CA super HIV doc wrote me the findings of Jan 2014 BC meetings. Seems IBC is now consider to be a peculiar type of IDC. All of the Medicare records now must classify IBC as malignant, invasive IDC. At least that's the rule if you're being treated at a national cancer institute and that means sooner or later, that will either become "the rule" for all insurance or the picture will shift yet again.

    It doesn't change the treatment plan or the medicine. It does mean doing more freaking paperwork. 

    And, I swear, it sometimes pisses me off that it seems like IBC is like Cinderella -- some people seem to want to will themselves to be her and some people want her to remain the odd stepsister. Strange, huh? Or maybe I'm still sort of foggy?

    bride

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