Question for IBC Fighters/Survivors

rainakay
rainakay Member Posts: 15
edited June 2014 in IBC (Inflammatory Breast Cancer)
Question for IBC Fighters/Survivors
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  • rainakay
    rainakay Member Posts: 15
    edited April 2012

    Hello,

    I have not been diagnosed with any type of cancer, had a lumpectomy a Mar 2011, and have had some odd breast conditions show up since getting pregnant which has been told to me to be mastitis/ Dermatitis (going on my 3rd round of antibiotics). Currently 26 weeks along. However, with the extensive family history of breast cancer, I like to get an insight on all the different possibilities that show up for people in their personal cases. If some of you don't mind sharing your stories, I'd love to know what your symptoms were presented with, if you ever had negative biopsies, how long before you got a confirmed diagnosis, ect. I know IBC can be very tough to diagnose due to being uncommon and not until further along is there usually a lump present, but I was just a curious 21 year old. Thank you! 

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  • Kicks
    Kicks Member Posts: 4,131
    edited May 2012

    It's because of how IBC presents itself is why it is hard to DX. It does not form a lump but makes nests or bands that have no clear margins. It is very aggressive and fast, can be within a day.



    I never had breast issues before DX. For me, I found an enlarged lymph node under my arm where there hadn't been one the day before. It took me a week to get in to see my PA as she was on vacation. In that week, orange peel skin developed, nipple inverted, and there was some swelling. I saw her at 11, was at radiology at 1 for new mammo, sono and had a biopsy. Had path. at 8 the next morning (Friday) - IBC as we knew it would be. On Monday, I saw the surgeon, Wed., the Rads Dr and Chemo Dr on Thurs. Next week was lots of scans and port put in. 17 days after DX I started chemo to try to get it to form a lump and get margins - it worked. Surgery followed, more chemo, rads and Femara. That was 2+ yrs ago and I'm still NED.



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  • rainakay
    rainakay Member Posts: 15
    edited May 2012

    Sorry to hear that kicks, but thank you for sharing. Never know when what you experience can help someone else out. Especially when they see doctors who aren't well informed themselves or brush the symptoms off as inflammation or dermatitis or just get askin biopsy in a clean area as I've heard. It's appreciated and I hope you heal through and through.

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  • rainakay
    rainakay Member Posts: 15
    edited May 2012

    What stages were you diagnosed to be in when you found out? Did you feel like something was off at all before your symptoms appeared or were so drastic?

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited May 2012

    rainakay,

    I started with an itchy breast that looked like I had a small bug bite.  Daily, it got warmer & inflamed to where my R breast was a cup size larger than the L.

    My obgyn suggested mammo & ultrasound which suspected ibc.  They strongly recommended that I have a biopsy and a week later; I was diagnosed stage IV ibc with a 3.5cm idc tumor (unusual with ibc) with spread to the lymph nodes.  With other test my oncologist ran, I found out I also had bone metastasis.  I heard that cancer usually does not cause pain until much later stages.  I felt fine and had no pain b/4 diagnosis.

    Terri

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  • rainakay
    rainakay Member Posts: 15
    edited May 2012

    ibcmets- How long was it before you were diagnosed? Did any doctors give you the run around? Again, for anyone who comes here sharing their story it is appreciated and pray for healing.

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  • erika-canada
    erika-canada Member Posts: 142
    edited May 2012

    Hi:

    I need help, therefore this is a question.

    Were any of you with IBC on Letrozole (or sister meds) for 5 years?  PLEASE, send me a private message. I used to be on these discussions and learned so much. Also, gave my opinion on questions.

    PLEASE, help me on this one.

    Thank you with all my heart

    Erika

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  • erika-canada
    erika-canada Member Posts: 142
    edited May 2012

    Hi:

    As far as I know, it should show up on an MRI.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited May 2012

    Rainakay,

    Sorry for late response as the boards have been difficult to figure out lately.

    I was diagnosed after biopsy, but the ultrasound I had at first showed suspicion of ibc.  2 weeks later I had biopsy & onc visit who required MRI, brain MRI, Pet scan, bone scan (the works)

    Hope you don't have ibc.

    Terri

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  • lollypop59
    lollypop59 Member Posts: 123
    edited July 2012

    hello ibc mets, hoping this message is finding you well, i would just like to share my good news with you that my ct results yesterday was that my lung mets have gone and all my other organs are still clear, i have been on taxol weekly for 5 and half months now and my onc said that they are considering stopping my chemo and just keeping me on the herceptin, i am so pleased right now.

                                   lollypop 59

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited July 2012

    Lollypop,

    So very good to hear your good news.  I just had a PET scan and I'm still stable after 3 years.  My bone mets are showing up as healed lesions.

    Terri

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  • lollypop59
    lollypop59 Member Posts: 123
    edited July 2012

    ibc good news for you to, stilll stable after 3 years thats fantastic.

                                            take care lollypop59

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  • chester2010
    chester2010 Member Posts: 101
    edited July 2012

    Hi Lolllypop in Cardiff:  So happy to hear your good news that the lung mets have cleared.  That's great the Taxol worked so well. It will be great to be off that chemo.  Well done.

    This web site has changed and I'm finding it very confusing.

     Hoping to visit Wales in September - just checking out flights and accommodation.

    Best wishes.  Kathy, Toronto

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  • nancyjac
    nancyjac Member Posts: 120
    edited July 2012

    I have had breast cancer twice.  The first was ductal, the second was IBC.  Didn't have any symptoms in either case.  Both were detected via routine mammogram and confirmed with biopsies. As I recall it was maybe a week or ten days between the mammogram and the biopsy and a 3-4 days after the biopsy to get the pathology report. I had some additional tests (punch biopsy, PET/CT) physical examination to confirm the malignancy as IBC.  I did not have any lump(s) with the IBC

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  • lollypop59
    lollypop59 Member Posts: 123
    edited July 2012

    hi chester2010, nice to hear from you and hoping you are well also, yes wales is a very nice country to live do you have family hear or friends i live in barry about  twenty mins from barry island beach.

                                                    take care lorraine xx

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  • lollypop59
    lollypop59 Member Posts: 123
    edited May 2013

    hi ibc mets last time i spoke with you was last july, hoping this message is finding you well, unfortunatly my mets grew back in lungs skin and chest wall, been on cap and lapatinib but had slight proggression so was switched to vinorilbine which is now keeping me stable, but my onc is trying me on the beacon trial i am feelling well so cant complain, it would be lovely to hear from you. xx

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  • Annie2012
    Annie2012 Member Posts: 32
    edited May 2013

    I had chemo last October AC and Taxol. Finished chemo in March and had bitateral mastectomy in April. Started my 6 weeks of rads today. My IDC tumer was 9 CM and after the chemo it shrunk down to 1mm and also one node positive 2.5 mm. Before chemo the core biopsy showed IDC and the punch biopsy was negative. I had all the IBC clinical signs. Swollen breast, redness over half, warm to the touch. It didn't get that way until after the core biopsy, I thought it was infected from digging around doing the biopsy. The antibiotics did not help. After my surgery, there was no sign of anything in the skin or in the nipple. I had clean margins. So my breast surgeon says I never had IBC and only IDC, however my MO says I have IBC and IDC. The IBC by clinical diagnosis only.  Don't know if I will ever know for sure if I have IBC for sure or not. I know the treatment I am having is the same, chemo first, then no skin sparing surgery, then rads. I am triple negative and Brac 1 positive, so I am going to hope that my BS is right, not my MO, since this is so aggressive. In the end, everything in this journey is so out of our control. We can follow all the treatment from our Drs, try to eat right and exercise, but only God is in control of our outcomes! 

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