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Lesley_Ann
Lesley_Ann Member Posts: 8
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello everyone, I was just diagnosed with IDC last Monday.

 In June I went to the doctor with what felt like a lump in my breast. At the time

I was about 6 months pregnant and  he brushed it off as "nothing" or maybe changes in my

breast during pregnancy. At the time we were in Japan (DH is a Marine)...we moved back to the states in July and I went to see the doc here. I got sent to a specialist and he said that looking at it with the US, he could tell I had a cyst but it was probably nothing.

 My beautiful baby boy was born on Sept 29.  That week, doc decides to have an MRI done just to make sure the cyst is nothing since tests of the fluid come back basically unidentifiable. On MRI they see "dense tissue" behind the cyst...in the meantime this cyst has taken on epic proportions...it has made my breast HUGE and its painful to touch...doc drains it, but it comes back promptly....so, they decide to do a biopsy...and Monday they let me know biopsy came back as cancer...I am told I have IDC...and that though rare, sometimes cancers show a build up of fluid/cysts....Oncologist tells me that my scans are clean, I am showing some swollen lymph nodes, and I will have to have a mastectomy, and she said my cancer is Stage 3 becuase it is "inflammatory"...

 at the time, I should have asked her to clarify...of course my breast is swollen, there is a cyst that wont stop growing in there and its stretching out my breast...but is it IBC....she said that IBC did not pop up on the biopsy...

I am wondering...is it IBC?...could I have IDC...this cyst...and my breast looks like this due to the cyst? 

 Start Chemo on Tuesday...to top it off I am a triple negtive...so chemo is going to have to be it...

I am terrified...nothing I read on IBC sounds good at all...What will become of my 3 girls and 2 boys...they are 14, 9,8,4 and one month...Cryhelp me....please

 Cry

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  • shrink
    shrink Member Posts: 936
    edited November 2008

     Lesley:  Sorry you had to join us here.  Although IBC is staged at III automoatically due usually to size of the tumor and the assumption that nodes are involved, there are many long-term survivors our there.  Check out ibcsupport.org.  My IBC was not found on any pathology reports but the diagnosis was made based on symptoms - pinkness, swelling, sudden onset.  Perhaps your swelling IS due to the cyst. This is the scarriest of times.  Once a plan is in place you'll begin to feel  that you're doing something to beat it. You might want to ask your doctor to clarify why she thinks this is inflammatory.  Did you have a skin biopsy? I wish you the best.  Please keep us posted.

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  • Jessica29
    Jessica29 Member Posts: 36
    edited November 2008

    Hello Lesley Anne,

    I am so sorry to read of your recent dx. Of course you are worried and upset, this is the toughest time for us, just dx and worrying about what happens next.

    I think sometimes there can be confusion re IDC and IBC.

    I was dx with IBC in 2005 but it was referred to as IDC for many months before the dreaded IBC was ever mentioned. When I queried this the surgeons told me it was a surgical term!

    IBC can only be identifed by biopsy, however they need to take enough samples from the area to be sure. It is possible that you have an infection in your breast and this is causing both the swelling and burning sensation. It's a shame they didn't try a course of antibiotics while waiting to start the chemo. 

     That said I want to try to reassure you.

     Please do not believe everything you read on the internet about IBC. The information is often horribly out of date and it will only scare you. Treatment has moved on so much since many of the statistics they like to quote were published and fortunately you do not appear to be showing any of the classic signs for IBC.

    You will feel much stronger once you know your treatment plan, somehow it feels as though you are 'doing something', 'fighting back'.

    I finished my chemo in July 06, went on to have my mast and rads and am currently doing well, back working full time. I have two sons, now aged 18 and 16, there is no way I am going anywhere anytime soon!

    Please come back and let us know how you get on in clinic on Tuesday, I sahll be thinking of you.

    Jessica x 

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  • shrink
    shrink Member Posts: 936
    edited November 2008
    I have ILC, IDC and IBC.  The diagnosis for IBC can be made by pathology and/or by clinical symptoms such as I mentioned above. My skin biopsy was negative. In any case, as Jessica says, don't scare yourself with out of date statistics.  I was diagnosed a year and a half ago and have no plans for "going anywhere soon."
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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited November 2008

    My cancer was diagnosed as inflammatory, but I also had cancer cells that were IDC and ILC.  I also had focal carcinoma of the skin.  Inflammatory is when the cancer is in the skin and is how it appears in sheets rather than a lump.  I am not a doctor, so i don't know what the exact clinical diagnosis of IBC is, all I know is I had 3 different kinds of cancer cells.  This is still confusing to me, and I have been battling for 18 months!

    I wish you all the best!
    Amber

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  • lexi4
    lexi4 Member Posts: 1,074
    edited November 2008

    HI Lesley Ann,

    I know that it's so scary. I am sorry that you are going through this as well as having a new baby. This disease is horrible.

    I was diagnosed w/ IDC and had a mastectomy. It wasn't until I had a skin biopsy of a small pimple like rash that came back positive w/ bc cells that I was restaged IBC. It is scary, but they will treat the cancer aggresively.

    The ladies here are so great. They all get IT. Please come back and let us know how you are doing.

    Hugs and Prayers,

    Lexi 

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  • Lesley_Ann
    Lesley_Ann Member Posts: 8
    edited November 2008

    Thank you for your responses to my posts...I am going to get my second round of chemo today, I am getting TAC and Avastin.

     I think the chemo is working on slowing down the cyst, because it has not refilled as quickly as it usually does. My breast looks like it has stretch marks, and it is red...I am going to ask about having the skin biopsied, although from what I understand my Oncologist is treating me aggressively, and it appears that she is just going with it being Inflammatory. She said she is basing the dx on the fact that there appears to be a lot of vascular activity on my breast...

    She seems very optimistic, but I feel like I am drowning...if you all could keep me in your prayers today, that the chemo they are giving me do its job...

    Thanks, Lesley

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