Maybe IBC, maybe nothing.

maybeafighter
maybeafighter Member Posts: 2
edited March 2016 in Waiting for Test Results

Has anybody had IBC present without the redness/rash/pain? I have had an ultrasound, mammogram and biopsy - still waiting for results. The radiologist seems to think i have IBC but the timeline doesnt quite fit and i have had no inflammatory symptoms.

Current symptoms include a hard feel to a significant portion of the breast, thickened skin, a little nipple retraction and swelling/edema. There is what looks like peau d'orange only when I press the flesh in. Symptoms started around ten months ago when I was halfway through my pregnancy and I attributed it to normal pregnancy changes. I have had NO instancesof mmastitis, suspected mastitis or anything like that. As a side not the biospy sample floated but that seems like it probably doesn't mean much.

Does anyone have any advice or stories to help get through the next few days? I have 2 kids under 4 and the thought of what the future may hold is terrifying right now :(.






· Share on FacebookShare on Twitter

Comments

  • 614
    614 Member Posts: 851
    edited March 2016

    Dear MaybeaFighter:  I don't know what "the biopsy sample floated" means.  When do you expect to get your results from your biopsy?  The waiting and wondering is extremely difficult and stressful.  the "not knowing" causes you to be filled with anxiety.  I am praying that your results are benign.  From what I know, IBC progresses extremely quickly.  10 months is a long time for IBC.  Hopefully, your symptoms are reactions to your pregancy and breast milk coming in.  Are you breast feeding?  I wish you the best but I cannot give you answers.  Sorry.

    · Share on FacebookShare on Twitter
  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited March 2016

    From what I've read here, and experienced myself, a 10 month symptom doesn't seem likely. But there's only one way to find out and that is to go through the diagnostic process. I will say that even IBC can be treated successfully, if that turns out to be what it is. I'm nearly five years from a stage IV IBC diagnosis and I'm doing fine.

    Here's to hoping you do not have bc!

    · Share on FacebookShare on Twitter
  • 614
    614 Member Posts: 851
    edited March 2016

    Dear Winningsofar:  Yay!  Congratulations to you.  It is so scary that you had the recurrence 12 years later to Stage IV IBC.  Thank God that you are ok.  I am always afraid of recurrence.

    · Share on FacebookShare on Twitter
  • 614
    614 Member Posts: 851
    edited March 2016

    Dear Maybeafighter:  Your symptoms may indicate ILC??? I am wishing a benign result to your biopsy.  I hope that your results come back quickly.  Good luck.

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited March 2016

    Why are you thinking IBC? Has a Dr suggested it to you or are you deciding on it?

    There are many possibilities as to what has been going on for quite a long time for IBC. Besides the fact that IBC is rare - only between 1% - 5% of all types of DXd BC, it is aggressive and rapid in presentation and progression - literally can present over night and progress in days. It doesn't just 'hang around' for months on months.

    Yes ; it is possible to be IBC and not present with 'redness/rash' or pain/itchiness - there are no 'set in stone' 'rules' that IBC (or any type of cancer HAS to follow exactly with everyone - we are each so unique. In my case (others have had different presentations), I never had any ' redness/rash' or pain/itchiness. In the 24 days (7 days to see my PA, DX the next day and 16 more days) from it presenting literally overnight in a lymph node under arm to starting neoadjuvant Chemo. In that time, the node continued to enlarge, breast enlarged, nipple inverted and peau d'orange developed BUT there was never any 'redness/rash', pain, itchiness or heat. This presentation is not what all experience - but it is what I experienced 6 1/2 yrs ago and I am still here and still NED.

    I have not heard the term "not the biopsy floated". What is that supposed to mean?

    No one here can tell you what is going on (of course, anything is possible no matter how unlikely) as we are not medical professions who are actually seeing you (or any of your reports/scans/tests/etc.). Do not jump to unfounded conclusions before you have the facts.

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited March 2016

    Why are you thinking IBC? Has a Dr suggested it to you or are you deciding on it?

    There are many possibilities as to what has been going on for quite a long time for IBC. Besides the fact that IBC is rare - only between 1% - 5% of all types of DXd BC, it is aggressive and rapid in presentation and progression - literally can present over night and progress in days. It doesn't just 'hang around' for months on months.

    Yes ; it is possible to be IBC and not present with 'redness/rash' or pain/itchiness - there are no 'set in stone' 'rules' that IBC (or any type of cancer HAS to follow exactly with everyone - we are each so unique. In my case (others have had different presentations), I never had any ' redness/rash' or pain/itchiness. In the 24 days (7 days to see my PA, DX the next day and 16 more days) from it presenting literally overnight in a lymph node under arm to starting neoadjuvant Chemo. In that time, the node continued to enlarge, breast enlarged, nipple inverted and peau d'orange developed BUT there was never any 'redness/rash', pain, itchiness or heat. This presentation is not what all experience - but it is what I experienced 6 1/2 yrs ago and I am still here and still NED. (My annual mammo had been done less than 6 weeks before and had been as all previous yrs with no changes.).

    I have not heard the term "not the biopsy floated". What is that supposed to mean?

    No one here can tell you what is going on (of course, anything is possible no matter how unlikely) as we are not medical professions who are actually seeing you (or any of your reports/scans/tests/etc.). Do not jump to unfounded conclusions before you have the facts. The vast majority who come here having decided on IBC as a DX never get that DX.

    · Share on FacebookShare on Twitter
  • maybeafighter
    maybeafighter Member Posts: 2
    edited March 2016

    Hi everyone. Thank you all so much for the replies.

    To clarify, the radiologist is the one suggesting IBC on the initial imaging reports. I had never even heard of it. The doctors have told us to prepare for a diagnosis. If the biopsy comes back negative they have said they will just go back for more. The radiologist said that if there were malignant cells present than you would expect the biopsy sample to sink in the solution. He said the fact it floated means it may not be cancer (which he said he would be very surprised if it wasn't) but more likely they need to biopsy another area. Fatty breast tissue will float etc

    .

    The unknown is so hard to deal with and I guess I'm just trying to gather as much info as I can to feel like I'm doing something.

    · Share on FacebookShare on Twitter
  • 614
    614 Member Posts: 851
    edited March 2016

    Dear Maybeafighter: I hope that you get your results soon. It sounds like you may want to go for a second opinion. What you are posting does not make sense to me. Sorry.

    · Share on FacebookShare on Twitter

Categories