Can biopsy come back negative but still be positive for IBC

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Mommasluvs
Mommasluvs Member Posts: 3
edited June 2014 in IBC (Inflammatory Breast Cancer)

I am still scared and feel uneasy. I am 27 years old with two girls 6 and 8 with a baby boy on the way, 23 weeks pregnant. I am scared my negative biopsy result could be wrong. Is it common to be wrong?  I will never forget the day I got out of the shower and said my breast looks funny. I went to the first Dr on Monday and she said to apply cold instead of heat and it would be okay. By thursday nothing had happened and it had gotten worse. I made another apt and my Dr was in so I seen him. He said he thought it was mastitis (sp?) and put me on an antiobotic. Well it didn't work so the following Wed he decided to send me to a general surgeon. The general surgeon said IBC was rare and did an ultrasound on both my breast. The radiologist said my breast tissue was very thick in the 12 to 3 oclock area. She said that is signs of IBC along with signs of Malstitis. She did not see any lumps or blocked ducts. Everything looked great exept my red swollen breast and the thickness in skin on the ultrasound. This made my general surgeon decide to change my antiobotic and try it out. He also put me on Motrin as an antiflammatory. Then this past Monday no change had occured. He decided to do a biopsy. He went to the thickest point and cut. He cut into it and got the skin and tissue. He also took a extra peice of tissue inside the cut to make sure he got enough. I went back for my results and I should be happy because they were negative but instead I still worry. They came back negative for cancer and also negative for everything. My surgeon didn't understand the report because he said that the report basically had nothing in it. He then called down and talked to the pathologist who read it. The patholist said it looked like normal breast tissue. He spotted absolutly no change. He asked my surgeon what he was looking for and he told him again. The pathologist again said no I see nothing wrong with it. My concern is my Right Breast is still inflammed. It is a good size patch on the left side of my right breast. It has thickened skin and has the orange peel look. The nipple area is very hard and the breast is red. I am scared. Is it posible that the biopsy results could be wrong? He did not do a punch biopsy. I asked him why and he said because sometimes it doesn't get the skin if the skin is really thick which mine was so he was making an incision and cutting into it to make sure he got the biopsy he needed. That sounds reassuring but I really do not know much. I am just scared becuase nothing came back on the biopsy and by looking at my breast there is obviously a problem. Could my biopsy be wrong? Thank You all so much for your help. I am nervous and scared so I hope it wasn't hard to follow.

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  • Mommasluvs
    Mommasluvs Member Posts: 3
    edited May 2010

    Thank You for responding. No my breast isn't really warm. My right breast is really red. It is swollen and has the orange peel look. The nipple area is starting to get pretty scaley looking. The redness comes and goes though. Like when I wake up in the morning it really isn't that red but through out the day it gets really red as though I have a sunburn on it. Through out the day though the red comes and goes to. Would it do that if it was IBC? 2 weeks ago the Doctor did say that the lymph nodes under my arm and in my neck were not swollen. They couldn't feel them anyway. The ultrasound just showed the skin to be really thick. They compared the ultrasound on my right breast with the one on my left and the right was much different. Even when the Doctor did the biopsy I asked if it looked weird. He said no just really thick. What makes me nervous is that it did not show thick skin on the report. I don't know if that is normal though. The nipple goes in a little but not really a lot. I am also starting to get bad pain in it. The pain is under my breast and also it goes up my breast from my breast up my chest near my collar bone and into my right arm. It aches when I use my arm too much to. The pain just started a couple nights ago. Does this sound like IBC to any of you? Thank You so much for all of your help. I really appreciate it as I am really scared!

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  • paigelise
    paigelise Member Posts: 173
    edited May 2010

    Hi...the title of your post caught my eye even though I don't have IBC.  From my understanding a general surgeon did the biopsy?  I would suggest getting a 2nd opinion by a surgeon who specializes in the breast.  The one thing I learned through out my whole ordeal is to go with your gut instinct and it sounds like you are not comfortable with your answer so far.

    Not to scare you but my first biopsy was negative.  But mine is IDC and from the way it looked on the mammogram and ultrasound the surgeon pushed me to have a 2nd biopsy...this time ultrasound guided so they got samples from different parts of it. 

     On the flip side...I have a "thickening" in the other breast that only one other Dr was able to feel.  They sent me for an MRI and it was normal.  But I'm glad I persisted and not worrying about it now.

     Let us know how you are doing!  Sorry I can't answer any of your IBC questions!

    Wendy

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  • Mommasluvs
    Mommasluvs Member Posts: 3
    edited May 2010

    Thank You so much for your replies. I went yesterday and he did do another biopsy more of the affected area. The first biopsy actually was more of the nipple area and the skin underneath. He did it there because he said it was thicker there. That is actually why I was confused because the redness goes up my breast though. Now we will have a biopsy of the nipple area and the other affected area. He said if this comes back negative then he is positive I am in the clear and then he will send me to the dermatologist. I am preying it does. Thank you all so much!! I will let you know the results.

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

    I pray that it comes back negative.  I'm glad your doctor is proactive and running another biopsy to make sure your in the clear.  My redness did not go away and my breast was much warmer and larger than the other one.  Good Luck and best wishes with the new baby on the way.

     Terri

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited June 2010

    IBC can present itself different which makes it harder to diagnosis.  My first punch biopsy was negative. Mammo & ultrasound were negative as well. An MRI located the IBC area and the second biopsy was positive. 

    As to the redness, mine would be lighter in the morning and redder by the evening. As others have said to follow your gut, if you are not satisfied the the results or the doctor get a second opinion.  My doctor was a breast specialist and while she said IBC was rare it was possible.  I thank God she didn't ignore my symptoms.

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  • Salmtvernon
    Salmtvernon Member Posts: 5
    edited July 2010

    My heart goes out to you....docs are not informed about IBC in general. After seeing my red breast, I immediately went to my OB-GYN.   Over a 9 months period from Dec. 2008 to August, 2009 I went to her and another doc, had a mammogram which came back negative and no one even referred me to a specialist.  Finally, when my lymph nodes under my arm were swollen in late August, 2009, I insisted on a referral 'to someone who could diagnose the cause of the redness and swelling'.   I went to a 'breast surgeon' in Bradenton, FL who didn't recognize the symptoms, either, but who gave me anitboitics, just like yours did. Then, she took TWO biopsies, and  both results came back that I had Inflammatory Breast Cancer,and that my estrogen receptors were 'triple negative'. ( I told her I didn't want to have surgery, so she said, "I'll refer you to hospice"....and she did!!)  Wanting a second opinion,  I called an oncologist who saw me immediately, and he said he could see from the 2 test resutls that she hadn't gotten enough tissue in either biopsy to allow him to 'stage' the cancer. So, he insisted that I have another doc order o a  'wire biopsy' which is the wire guided type the radiologist does.  That specimen revealed that instead of being triple negative,  I had 'positive' estogen receptors which was GOOD news as there are medications on the market which work better than if one has all negative receptors.  I had 4 chemo treatments, didn't have surgery, was put on Arimidex in Nov. 2009 and am still on it along with having zometa treatments every three months.  To make my point, NONE of the first 3 doctors I saw recognized my symptoms as IBC.  They are not educated sufficiently, don't take the time to research symptoms, etc.  Right after I decided to go to my GYN for the second time,  I went on the internet and found out that I had 4 of the 7 symptoms:  red patch of skin under the breast, thickening of the breast skin, swollen lymph nodes under the arm and swelling above my collarbone.  Now, my lymph nodes are active (I'm aware of soreness/numbness) above my breast and up into my neck/jaw area.  I'm otherwise very healthy, and as of the last tests, the lymph nodes haven't spread cancer into my vital organs.  They may not, but I know I have activity into my neck/shoulder area.  I'm almost 70 which isn't 'old' in our society, but I am going to live my life without further intervention/surgery/etc.  My doc told me that if I had surgery to remove the tumors in my breast (I also have Invasive Ductal Carcinoma), the skin on my breast that would be needed to sew the incision closed would have cancer cells in it, and the incision in all probablitlity would not heal correctly /without much, much ongoing care.  I didn't want that vs living a full life in the meantime.  In other words, I didn't think the time that surgery 'might' buy me would be of a good enough quality to sacrifice a more normal living of my life as I am.  I have good energy, good outlook, and a good life.  Stay strong, but be your own advocate..........nobody else will do it as well as  you!

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  • annieh11635
    annieh11635 Member Posts: 2
    edited July 2011

    Dear Mommasluvs....did you ever get an ANSWER to your important question?  It is the same for me so I am quite interested.  Do people just enter questions that get no answers or does someone email you or are they posted somewhere? Otherwise I see no sense in asking.

    annieh11635

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  • annieh11635
    annieh11635 Member Posts: 2
    edited July 2011

    I too have the same question.  Can you have a biopsy that is negative but still be positive for IBC?  Someone please give me a direct answer...please no replies of the same nature.

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited July 2011

    annieh11635 - Yes, you can have a biopsy that is negative and still have IBC.  Mrsnjband's post illustrated her experience with having her first biopsy show negative.  It's possible to perform the biopsy on the wrong area.  The best way to ensure that they are taking a sample of tissue from the correct area is to have an MRI first.

    Mommasluvs - I just found your thread.  If you're out there we would all love to know how you are doing.  Praying for you. 

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