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lilworried
lilworried Member Posts: 12
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello all--

I been lurking here forever and decided to post. So my right breast has been red for almost 2 years. It has never been hot and I have no pain, little tenderness sometimes the day before I start my period.  It's not flaming red, looks like lots of red blood vessels and tends to look worse when I'm cold. My left breast has some of the same but its not near as red.  When to my primary doc about a year ago and she passed it off as a skin thing as I am very fair skinned and have alot of skin reddness everywhere.  I accepted it and didnt really think anymore about it.  I have recently been laid off and been under alot of stress so I been worrying about everything and seem to have fixated on my breast.  I don't have any insurance now so I can't go to the doc so I cant go get it looked at again so I just worry all the time about it.  It seems alot redder but that could be because I can't keep my hands off it.  I still have no pain or swelling, warmth, etc,  I do have one area at the top of my areola that I have had for a long long time too, seems a little bumpy and I can see pores but its only visable when my nipple is errect and areola tight but I am convinced its peau d orange.  I am also convince my lympth node is swollen but the other side is also puffy and I am a big girl so it may just be fat.Can anyone tell me if you have peau d orange is it visble all the times, a friend says she has the same its just how areola looks when your nipple is errect and after and also would it have spread out into the breast skin after all this time or just stayed in the same area.  Also after almost 2 years would the symptoms be alot worse all together  and be having pain?  I have been reading alot online about how people go a long time without getting a correct dx and by the time its found its already spread.  How long can you go without a correct dx and how fast/severe would more symptoms appear?

Thanks to everyone

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Comments

  • ibcmets
    ibcmets Member Posts: 4,286
    edited November 2010

    I believe if it was ibc and you had it for 2 years, you would be a lot worse. I had all symptoms, one breast larger than the other (swelling), no pain, but itching and red and peau d orange, inverted nipple, breast much warmer than other one.   It took me 3 weeks before I could see a doctor and it did get worse within that short period of time.

    If it's been 2 years, you might want to have it checked out again.

    Terri

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  • lorieg
    lorieg Member Posts: 802
    edited November 2010

    Get it checked out, but I agree with Terri.  Honestly, if you had symptomatic  IBC for 2 years you would probably be dead.  Sorry to be blunt!

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  • leisaparis
    leisaparis Member Posts: 587
    edited November 2010

    I was thinking exactally the same thing, but you said it first. Very doubtful that it's IBC. Hope you find out what it is. Good luck.

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  • lilworried
    lilworried Member Posts: 12
    edited November 2010

    Thanks ladies for all of your information....I am going to try to get it looked at again, this not having a job or insurance sure makes it difficult.  For those of you that had peau d orange--where was it on your breast and did it get worse--i.e.--spread to more of your breast?

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  • leisaparis
    leisaparis Member Posts: 587
    edited November 2010

    My right side was the infected side and it covered my whole breast.

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  • anonymice
    anonymice Member Posts: 532
    edited August 2013

    That was exactly my thought too - you'd be dead.  But on the other hand, looking back, my symptoms may have been coming on for a long time, and my tumor is grade 2 which means it grows moderately rather than the wildfire that you will often read about.  Looking back I *know* I had symptoms of IBC for at least 6 months before first chemo.  

    (By the way, the good news is that when I started chemo I lost about a month of symptoms per week - they retreated *way* faster than they came on.)  

    I think you need a biopsy done at a breast care center.  I say that because of the peau d'orange, primarily, which can be caused by other problems as well but is the symptom that is most likely to be suspicious.  

    About affording it - you should google the breast and cervical cancer program.  In some states if you are screened under that program and then found to have cancer, you get a medical card.  That is how I am affording care - I made too much money to qualify for low income services but not enough money to afford insurance because of a pre-existing condition (TMJ).  But if you are currently out of work you can get many other services. **Do not let finances prevent you from seeking care**  

    Also, don't read the stats on IBC and get too scared to be as aggressive as you may need to be with the doctors.  None of the online stats are valid, they don't treat IBC the same way they did even 5 yrs ago.  They have learned a lot in the last few years.

    So, after having been the voice of doom and gloom, I would also say I don't think you have IBC - but even if we were all physicians here our opinion would mean nothing without biopsy results.  It is normally way too aggressive for 2 yrs of symptoms.  But you need to make sure.  If it is, catch it now, it's obviously very slow growing.

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  • LEisenbarth
    LEisenbarth Member Posts: 30
    edited December 2010
    Lilworried,  Tell them up front you have no insurance and no Job.  There should be someplace in your area that will help you with a grant or something like that.   Get it checked out please:}...  Our town has a van that comes every so often to give mammograms and for people in your situation they are free.    Hugs and Prayers ~Leslie
     
     
     
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  • lilworried
    lilworried Member Posts: 12
    edited December 2010

    Thanks to everyone for the responses, I did some checking and it seems my insurance coverage hasn't actually lapsed yet--it will on Jan 5th-so for now I still have some coverage.  Made an appointment with my regular doc but couldn't get in until 12/28....obessed all night about this redness--called and was saw by the nurse pract.  She gave me a really good breast exam but really didn't look much at the spot I thought was peau d orange on my areola--said she didn't feel any lumps so that was a good thing.  I brought up IBC and she said I don't have any pain and all the red on my breast is almost cold--alot colder than the other breast--and if it was IBC would be warm  or hot-esp after all this time.  Said she thinks it is something vascular--also said if was peau d orange it would be all over my breast my now.  Can't stop looking at it or thinking about it--I am so worried.  Having a diagnositic mammo next Tuesday and guess we will go from there but I am really scared :(

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  • scuttlers
    scuttlers Member Posts: 1,658
    edited December 2010

    It is always a good idea to know your body and to know when it is changing or when something is just not right.  

    Worrying about IBC for 2 years is rather excessive.  If it was IBC, it would be a whole lot worse and as another poster stated, you would probably be dead.  

    IBC will not (very rare, very unusual) show on a mammogram.  My MRI with biopsies (positive for stage III IBC) and Mammogram (normal, no breast cancer); were done the SAME morning.  MRI first, walked across the hall to Mammogram.   

    Also the "peau d orange" is usually on the skin, not the areola.  The areola may change in color (mine went from a nice pink to a tan) and the nipple usually retracts and doesn't become erect.  If you took an orange or lemon and painted it skin color, that is what the symptom looks like.  Mine only covered the bottom half of the breast, but it can cover the whole breast.  Lumps are rarely seen or felt.  In my case, the entire breast was a huge lump.  Very hot to the touch, and with stabbing pains nearly constantly.  

    I saw the doctor (who was very familiar with IBC) within 2 weeks of the start of the symptoms and therefore was caught early at Stage III.  Another 6-8 weeks would have been a death sentence.  I am almost 2 years out now, and am close to looking a cure in the face because of the Clinical Trial at John Hopkins, which I hope to start in January. 

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  • lilworried
    lilworried Member Posts: 12
    edited December 2010

    Thanks for your reply and words of wisdom.  I will agree it is excessive to worry about something for 2 years but thats what I do LOL  In all seriousiness, I have a big, big  problem with anxiety.  I realise that to get a diagnois that I need to have a biopsy but the doc I saw says we have to start with a mammogram so that my insurance will pay and I think she also wants to make sure I don't have any lumps/tumors causing my problem.  Someone told me that IDC could also cause redness and peau d orange, so now I am worrying about that as well. 

    Congrats on your 2 years out now and I will say a prayer that the clinical  trial works out and you get to start in Jan!!!!!!  That is wonderful! Laughing

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  • leisaparis
    leisaparis Member Posts: 587
    edited December 2010
    scuttlers....are you starting the neratnib(sp) trial? I am, should be starting next week or so. It's for HER2+ patients.
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  • lindaa
    lindaa Member Posts: 119
    edited December 2010

    scuttlers

    You say "I am almost 2 years out now, and am close to looking a cure in the face because of the Clinical Trial at John Hopkins, which I hope to start in January"  What is the name of the trial?  What is it about?  I am also IBC in treatment but always trying to have next steps in consideration..

     Thanks,

    Linda

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