Please Help Unsure if I have IBC

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hope09
hope09 Member Posts: 27
edited June 2014 in IBC (Inflammatory Breast Cancer)

Anyone out there that knows about this please write back. I am a 33 year old female that just found out that my sister has breast cancer. Went to my PCP and they were concerned with a thickening area on my left breast. Last Friday I ended up back at the drs office I was in so much pain. They said from left to right breast was quite a differance in size and feel. Went for mammo and ultrasound on Tuesday and radiologist came in an dsaid they found nothing. Came home and mom toldme to look up IBC. Did and was shocked the pain has not gone away. I get stabbing pains at times, and my left still is larger than other side but the pain and soreness is going up into my underarm slightly. I go to see my obgyn next Thursday for a second opinion abd hope they will send me for a MRI of my breast to find out what is going on. I am scared I have 2 little boys. Please respond .

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  • angeltam
    angeltam Member Posts: 248
    edited January 2009

    I've been fighting to getting a DX & at this point I just want an answer.

    I pray that your Dr. will get you into someone who'll listen and hear you. Please do NOT give up until you know what it is. I'm finding this statement is very true...

    "If one or more of these symptoms continue for more than a week, talk to a physician immediately, and find an expert with experience in treating this particular type of breast cancer.   Many women have to demand that their physicians "rule out" IBC, and (therefore) become their own best advocate, as more education is needed in the medical community regarding this form of breast cancer"

    Get your facts on IBC and print it out (along with what site it came from) and take it with you.

    I pray that you get answers and they are B9 answers. My thoughts are with you and your sister.

    Angel

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  • hope09
    hope09 Member Posts: 27
    edited January 2009

    Dear Angel Thanks for the support. I feel like my pcp will not listen. Imeant to say in my first message that the radiologist found nothing but almost in tears I told him I was still in pain. He just wrote it off as maybe mastitis. I have has two kids and have had this and this pain is not it. I just took a shower an d noticed now I have a severe rash between by breasts. I cant wait till next thursday when I go to the obgyn. If they dont listen I am going to go to an oncologist this has been going on for a week long enough. I had a hysterectomy so its not my menstral cycle. Docs hav etried telling me that to and I laugh at them and tell them to look at my chart, I had that surgery 5 years ago. This is so scary. Hope09

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited January 2009

    Hope, where are you located.

    Call the radiologist or pcp and ask them to review your ultasound and mamm...asked if they looked for skin thickening, diffuse increased breast density in one breast over the other, trabecular and stromal thickening.  Mass or architectural distortion is the most common primary breast parenchymal feature in IBC.  IBC is not usually found by mammogram but if they know what to look for it can be detected enough to warrant bx, MRI, or PET.

    If they can't answer that ask them to have them be reviewed by IBC knowledgeable radiologist.  If they won't, ask for referral to Breast Cinic or Surgeon rather than the Obgyn

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  • hope09
    hope09 Member Posts: 27
    edited January 2009

    Daer IBC Spouse, I live in PA. Already been told that I would have to go to Pittsburgh for an MRI of my breast because thatis the closest hospital that does them. 200 Miles South of where I live  As for the radiologist he said he saw absolutly nothing which makes me think he is wrong. Being I can feel something myself and still in  major pain and discomfort. Who should I demand tosee about this. Thanks Hope09

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited January 2009

    I know the radiologist said he saw nothing wrong, I just know that for someone not familiar wiht IBC they tend to look for a mass and do not note what they believe are b9 conditions.  The above items I listed on mamm were all present in my wife's mamm and US, but she was told everything was fine.  It was only later when they were reread, that they were noted.  A breast surgeon at a comprehensive breast clinic, is usually the person that has the most experience.

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  • hope09
    hope09 Member Posts: 27
    edited January 2009

    Dear IBC Spouse , What do some of these terms mean, Ijust wrote them all down so I could take them to the doctor but can you give me a heads up to what all this means. ThanksHope09

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited January 2009

    The skin thickening is seen in about 80% of IBC,  the trabecular and stromal thickening  would indicate more blood supply feeding the tumor.  The diffused density is a relationship of the density of the tissue in one breast as compared to the other.  The diffuse density would show as a light grayish area instead of the normal black background of breast tissue in the mammogram. The grayish area would fade out to black in places.  There are better more scientific definitions and explainations than I have, but this is how it was explained to me so my small brain could understand. 

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  • hope09
    hope09 Member Posts: 27
    edited January 2009

    thank you for all your help IBC Spouse. I am going to see if there are any good oncologists in The Ereie PA area whencethe offices open up and see if they will accept my insurance. See I have Insurance through the state because of low income and not sure what they will cover. Thanks again. Hope09

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  • hope09
    hope09 Member Posts: 27
    edited January 2009

    Hey anyone out there went back to the dr today. They are not messing around . I have gotten more syptoms and the docs are sending me to a breast surgeon to get a core biopsy done. Is thickening the main sign of this disease?  This is one of my many syptoms and has not gone away at all and actually forund it on the mammo also. Thanks Hope09

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited January 2009

    Hope, I am glad you are on a path to get answers.  Now I will pray that those answers are b9. 

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  • caalley
    caalley Member Posts: 3
    edited January 2009

    Hope- You sound just like me.  I am also 33 with 2 small children and after 3 months I am still not sure if I have IBC.  I went in for a visit to my OB at the beginning of Nov b/c overnight I had a 6cm mass in my left breast.  I was sent for a mammo and US soon after.  Both showed nothing specific and the radiologist wanted me to go for an MRI.  Instead my Dr. decided to send me to a surgeon.  I waited weeks for that appt and when I got to him I was told not to worry b/c Cancer doesn''t hurt.  He did 4 punch biopsies which all came back negative.  He suggested it was a mastitis and wanted me on an antibiotic which I declined so he sent me for MRI.  With those results they then scheduled me for an MRI guided biopsy and here I am just waiting like you.  Please do yourself a favor and have your Dr call to make your appts so he/she can stress the urgency.  That is what I wish I had done instead of waiting all of this time between appts b/c I just called as a regular patient.  Nobody seems at all concerned when you mention IBC which is very frustrating!  I hope it all turns out well for you. 

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  • hope09
    hope09 Member Posts: 27
    edited January 2009

    Dear Caalley and Gg08.  Thanks for the replies. I called the breast surgeons office on Friday in rei PA and first my appt was scheduled for Feb25 and with them realizinf what was going on Theyare calling  me the first of next week to get me in earlie. My doc originally sch the appt. Do you ladies have thickening in  your breast they refer to? I have it in my left breast, but like I said before the mammo and ultrasound came up neg. I still have breast tenderness in that area specifically and it feels like some is stabbing you at times. I dont have though any changes to my skin yet. I am hoping the doc in Erie will at least run these tests to make sure  I have beeen so scared. What are your symtoms, and do you have to have all syptoms for them to even consider that you have this? Thanks Again Hope09

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  • plguest
    plguest Member Posts: 2
    edited February 2009

    I had stabbing pains and my breast hurt like it was bruised all over.  Sometimes warmer than normal but not always. Felt like my milk was coming in. Symptoms started 5 months before I found the lump. Very sensitive to the touch and happy headlight on most of the time. Tumour grew from 2 cm to over 10 cm from the time of finding lump to mastectomy 10 weeks later. I had the orange peel skin from 3 weeks prior to mastectomy.  Tumour was multifocal and multicentric and did not show up on mammogram or ultrasound.  Even after seeing the MRI the ultrasound tech could not see it in ultrasound. Needle biopsy found positive.

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  • hope09
    hope09 Member Posts: 27
    edited February 2009

    Dear PLGUESt, Just today my left breast started swelling and really aches. Called my Primary Dr and want tosee me again tomarrow. I dont go to see the breast surgeon until next Wednesday. i dont know what is going on . i am going to request they put me on antibiotics tomarrow just so the breast surgeon does not try to waste time stalling with that dx. It seems weird but I have looked at the symptoms of mastitis and cellulitis and this is not it for god sake I had two kids and had mastitis  and nope this is not it at all . It seems like something new arises every week and this has been going on for about 3 weeks now. Thanks for the response. Hope09

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  • angeltam
    angeltam Member Posts: 248
    edited February 2009

    Praying for you hope09, I would make sure you get in tomorrow and go in with INFO on IBC. Don't let them put you off like they have me. I am sorry you are having to go through this. My prayers will be with you, Please let us know what you find out tomorrow.

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  • sflow
    sflow Member Posts: 297
    edited February 2009

    hope09

     I live in the suburbs of Pgh and would be glad to help you out in terms of hospitals etc.  I had my biopsy at Hillman breast center and my lumpectomy at Shadyside Hospital.  Wonderful Surgeon Dr. Steven Evans.  PM me if I can be of any help.  Does not seem to be too many members on here from PA that I know of.

    Sandi

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  • KPolasek
    KPolasek Member Posts: 184
    edited February 2009

    My daughter is 30, has 4 children and has been in pain for over a year.  One breast is swollen, painful, the pain travels down her arm ...The mammogram showed nothing.  We live in Texas ..... MD Anderson is about an 1 1/2 hour away.  Anyone know of a good breast specialist there?

     She is so scared ....

    Blessings

    Kay

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  • StacyinTX
    StacyinTX Member Posts: 2
    edited February 2009

    KPolasek - MDAnderson actually has an IBC clinic. Here is a link:

    http://www.mdanderson.org/care_centers/breastcenter/dIndex.cfm?pn=80B5670B-7F3D-11D4-AEC800508BDCCE3A

    I'm in treatment for IBC in Dallas with TXOncology (Drs Pippen & Grant) and they are great, but if you are near Houston MDA would be 1st choice..

    I feel for you as waiting for the Dx is excruciating. I'm 34 and was told in Oct that I was "fine & come see us when you're 40 as your symptoms could be from hormones, stress or even your underwire bra" after mammo & ultrasound. I had never heard of IBC, so I took their word and went away until I received an email about IBC in Jan. Two weeks and two biopsies later - I started treatment. If your doctor doesn't listen to you or know about IBC, find someone who will. You'll need a skin or core needle biopsy for diagnosis and can then begin treatment.

    Feel free to PM me if you want to talk more about any of this & good luck!

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  • aljlbl
    aljlbl Member Posts: 19
    edited March 2009

    Your experience sounds a lot like mine except mine has been going on for 2 months been under a surgeons care for the last month, and on 3 rounds of antibiotics he is going to do a biopsy on Friday March 6 to rule out IBC and other things says I should of responded to antibiotics but I haven't so I hope to get some answers then.  Your symptoms are a lot like mine too, severe pain in my left breast, red rash on it, scaly dry patch that is different color then the rest.  Hope you find answers soon.

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  • reeniebabe
    reeniebabe Member Posts: 7
    edited March 2009

    These stories all sound terribly familiar.  The interesting thing that I have become aware of in Australia is that unless the regime of two lots of antibiotics and surgery (a biopsy counts) is given then the government will not subsidise the use of chemo drugs to treat IBC (particularly Herceptin).  This means that there is often a 'waste of time' just to jump through the hoops of the government requirements.

    In my case it was my own perserverance that ensured that all was done in a very timely manner (not quick enough though!).  Initially I was told it was just menopause (the blood tests confirmed this) but after a further few weeks and a marked difference between one breast and another I insisted on more tests etc.  Am now awaiting surgery after my fourth chemo session.

    I have noted in these forums that people have suggested some 'action' on these matters within America - why can't we become more proactive and start something more universal.  It seems in many of the cases that I read that the waste of time for antibiotics, awaiting specialist appointments and tests are actually making the 'survival' rate of IBC worse.  Many people are being diagnosed at Stage 4 even though they have commenced the process of diagnosis quite early.  Given that IBC is also so aggressive - any waste of time really counts.

     Is there anything we can do?

    Reenie

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    If you remember "ibcspouse" who has been a faithful poster here in the IBC threads, he needs you guys right now.

    Cam, his wife, had been NED since November.  Last week in a matter of hours, she developed mets to the skin!!!!!  They are leaving for Houston today to try and get accepted into a clinical trial at MD Anderson.  I dont know which trial, but evidently there is one that could offer her some hope.

    In case you are unaware, ibcspouse was unfairly banned for life from this message forum!  Those of you who know him, know that he could never do anything to deserve that!  BUT, you can find him here:  http://www.breastcanswers.com/bcforum/index.php and his new ID is "camsdh".

    If you guys could take a minute to visit the new forum, perhaps register and post to him in the IBC Forum, I know it would help him get through this very scary time.

    On ibcspouse's behalf, I thank you!

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