Only one symptom but terrified....

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MamaMiss
MamaMiss Member Posts: 18
edited June 2014 in IBC (Inflammatory Breast Cancer)
Only one symptom but terrified....
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  • MamaMiss
    MamaMiss Member Posts: 18
    edited June 2012

    Hi Ladies. I'm looking to hear back from those of you who have been diagnosed and either had only one symptom or who had to jump through several hoops to get your diagnosis. Here's "me" in a nutshell.



    Saw rash 9 nights ago on right breast around the areola and curving down to the bottom almost like a kidney bean shape.



    Saw OB Friday. She wanted to put me on creams, but due to what I'd read on internet I said I wanted biopsy. Hubby (dr.) started antibiotics. Over the next few days rash is much lighter.



    Tuesday saw surgeon my Hubby

    knows who has experience with IBC.

    He did exam, says he's doesn't think

    It's IBC, possible cellulitis since it seemed to be improving since I started antibiotics. Said if not gone by next Tuesday (which would be 10 full days of antibiotics) we would do biopsy.



    Had ultrasound 2 days ago. Radiologist has experience with and knows we were looking for IBC. She says she doesn't believe I have it. Everyone thinks I should be rejoicing now but here's the thing.....



    The rash (mottled, light pink) hasn't changed in 2 days now) and I have read stories and seen pics that say:



    1. You can have this and only this symptom

    2. The antibiotics "can" make the rash look better but it doesn't go away. (I'd love to hear if you experienced this and some timelines)

    3. An ultrasound can absolutely miss IBC. This is why punch biopsy is recommended.



    I want to hear (for those of you who had rash only..) did your breast EVER show any other signs and if so, how long after you noticed the rash? I'm on Day 9 with no additional symptoms.....EXCEPT.....it was hurting some yesterday (but I also have fibrocystic disease so it could be that)



    AAAAAAANNNNND......



    I saw a video where an IB

    C survivor mentioned numbness in her right hand. I have had that in my pinky.



    Ok- I guess I'll quit there and not write a book. Thank you for any input you can give me based on your experience. My husband thinks I shouldn't worry but gosh- I feel like I know more about this than he does just from what I've read from diagnosed ladies and the need to be aggressive with your doctors (or you Dr. Husband! ) ;). I'm terrified. Thank you so very very much for your time.



    Missy

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  • sflow
    sflow Member Posts: 297
    edited June 2012

    Hi--I had cellulitis twice--what you had sounded what mine looked like.  It looked half a tank top--dark red--no pain or heat.  I was put on antibiotics for 2 weeks( by my PCP)  and it went away only to re-surface a few months later.  My onc flipped when he saw it--did not think it was IBC but wanted to put me in hospital for cellulitis.  He did give me two courses of a strong antibiotic and it went away. Could never explain the cause.  I am not sure if my info helped you, but best wishes.

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  • MamaMiss
    MamaMiss Member Posts: 18
    edited June 2012

    Sflow,



    Thank you for responding. I'm just a little confused.



    Are you saying it was ONLY cellulitis?

    -or are you saying-

    You are fighting IBC and have HAD cellulitis?



    Sorry to be so dense. I just feel like I can't think/ understand even basic things clearly right now. :/



    Thanks so much.

    Missy

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  • MamaMiss
    MamaMiss Member Posts: 18
    edited June 2012

    Oh, also...mine is pale pink. I've seen pictures of IBC that look like this.

    Missy

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2012

    Hi MamaMiss, and welcome to BCO.

    We're sorry you're dealing with this worry. The main Breastcancer.org site has more information about IBC that may help you, and we'll also shift your thread to the IBC forum.

    The Mods

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  • MamaMiss
    MamaMiss Member Posts: 18
    edited June 2012

    Thank you, Moderators. I wasn't sure how to get more responses.

    Enjoy your weekend.

    Missy

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

    Missy,

    I would not panic yet.  I had all symptoms: hardness & fuller breast, light rash looked like spider bite, itchy and warm and organge like dimpling skin texture.

    I had to wait 3 weeks to get in and breast got worse.  Being fibrocystic, just keep up with breast care.

    Terri

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  • MamaMiss
    MamaMiss Member Posts: 18
    edited June 2012

    Hi Terri,

    Thank you for your response. Sooooo......I have a follow up visit with Dr. Tuesday. (surgeon). My rash is lighter...been on antibiotic for almost 9 days now. But I read in some forum that the antibiotics can make the rash look lighter but not go away- so if course I'm wondering if that is what's happening. I think that I am gonna push for a biopsy even if he doesn't want to. Geez- I am soooo not assertive, don't wanna appear pushy, but crap, I mean if a biopsy is the only way to rule it out why waste time and maybe see the rash progress when off the meds only to find out that I do, indeed, have IBC.?!?!? I I don't wanna be an alarmist- but I do wanna be smart.



    When were u diagnosed? How are you feeling?



    Missy

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

    Missy,

    I was diagnosed out of the blue in 6/09 but it already spread to the bones so I was stage IV from the start ibc with bone mets.  The only thing I did not have was radiation as I was already stage IV.  I'm now on Zometa for the bones monthly & Femara as I'm ER+.  This has kept me stable the last 2 years.

    Biopsy is needed for ibc diagnosis but if they don't know exaclty where to take the specimen from it still can come out out with no detection. 

    I for some reason had a 3.5 cm tumor along with the ibc, which is highly unusual so it was easy for them to know what to biopsy.  I also had a ultrasound which pinpointed 3 spots to biopsy.

    Make sure you get ultrasound as well as mammo as sometimes mammo may not detect problem.

    Terri

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  • MamaMiss
    MamaMiss Member Posts: 18
    edited June 2012

    Hi Terri :)



    Thanks for writing. I did have an ultrasound that showed nothing but ive read that it can absolutely be missed by US. I have follow up with surgeon tmrw to see how rash looks. It's still there---faded but there. My husband asked if I will push for a biopsy even if doc says he doesn't think it necessary. I think I will bc otherwise how can I really know? He will put me under and take several samples through incisions. My husband, I feel, is probly mortified and maybe embarrassed since he knows this doc but I just can't worry about that. Right??? I would be soooo mad if I decided to not do it bc of that and then have this thing explode in a few months with mets.



    I am glad your meds are keeping you stable. Do you feel sick on them? I don't know how different chemo drugs affect people so I hope these don't make you feel wretched. My friend has stage 4 breast mets to her lung and you'd never know it to see her. No hair loss, etc



    Do you have a family?

    I live in Indianapolis area- Zionsville to be exact. If you google it you can see my village. It's a nice place.



    Anyway- I appreciate your thoughts and now I think of you often.



    Warmly,

    Missy





    I will pray for you.

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  • Derby2012
    Derby2012 Member Posts: 8
    edited July 2012

    Missy, if you're still around, I'd like to hear how it turned out for you. I'm in the same situation (posted the whole sordid story in undiagnosed but worried thread. Basically, after 7 days, the redness is lighter but not gone, and the original puffy bulge is still there. Cellutitus or metitus is the general concensus, but docs don't seem to agree on which one. There's an area of suspicion, but not enough to have to do an MRI though they also think theres a cyst. So confused, sort of angry, and VERY scared.

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  • nancyjac
    nancyjac Member Posts: 120
    edited July 2012

    I have IBC.

    I also had a fibroid breast with some redness discoloration for 18 years after radiation for an earlier ductal cancer.  

    My current cancer was initially identified by my annual mammogram that showed some new areas of calcification,  That is was inflammatory breast cancer was confirmed by a punch biopsy.  But ibcmets is correct that a punch biopsy can miss finding cancer cells if the IBC is not locally advanced.  A PET and/or CT scan may be a better option for you than a bunch of invasive punch biopsies.  However, if your onc/surgeon indicate that there is not sufficient medical cause to do any of those scans or surgical procedures, they may not pay for it. 

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