negative pathology report for IBC

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younggrandmaof2
younggrandmaof2 Member Posts: 55
edited June 2014 in IBC (Inflammatory Breast Cancer)

I posted this in the general forum as well.  If anyone has any info for me it would be greatly appreciated.

I am a 46 year old grandma.  I have had two benign lumpectomies in the past 10 years.  Over the past 8 months or so I have been fighting what I thought was hives.  After being treated by 2 dermatologists, a gp and now a breast doctor I am totally confused.  Last week I finally made an appt with my breast doctor.  My normal appt isn't until March but I just read a bit about IBC and it scared me to death.  she said that she had heard that the internet had apparently been my friend and scared me.  She went ahead and did a skin biopsy (I felt mainly to pacify me).  My right breast is a little swollen and has a very itchy rash.  It stays relatively pink to red and I have pain/heaviness.  Today I received a call from my breast doctor (who I have the utmost confidence in) that said the biopsy has ruled out "the big ugly" (IBC) and to keep using the cortisone cream and if it didn't get better to go back to the dermatologist.  I was relieved a bit except I have read that many of the people with IBC had a negative biopsy result.  Should I take this at face value or should I still be concerned as the cream is not helping?  Help from anyone would be greatly appreciated. 

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited October 2008

    The only other symptoms I have had are warm, not hot, breast, itchy and a heavy feeling with pain.  The right breast feels completely different from the left.  However, no orange peel skin which is what the doctor seemed to think was the main symptom.  I think I have been on almost every site there is checking symptoms and treatments since I noticed that I might have some of the symptoms.  I guess the internet can be a good thing and a bad one.

    I guess my only quesiton is how can I make the doctor order a test that will conclusively rule out IBC.  I have an appt with my gyn in a couple of weeks.  Maybe I can get a different result from him.  I don't go back to the breast doctor until March and I'm afraid that might be waiting too long from what I have read.

    Thank you for your response and information but most of all thank you for your prayers!

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  • shrink
    shrink Member Posts: 936
    edited October 2008

    I don't think there are definitive tests to rule out IBC.  My skin biopsy was negative although it was taken from a very pink area.  The diagnosis was made based on sudden onset, swelling, pinkishness, warmth, bruising.  The needle and core biopsies were positive for IDC and ILC.  Is there an area of thickness which could be biopsied?  Have you had a mammogram, MRI, ultrasound?

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited October 2008

    I am not scheduled for my mammogran until March...that is what I am concerned about.  I have read alot...maybe too much but if this is IBC I certainly don't want to wait until March.  My breast doctor seemed very at ease about the situation but unfortunately, I'm still apprehensive.  I have a gyn appt the beginning of November.  I guess I will approach the situation with him.  It seems like whomever I talk to about it says it is very rare so there is nothing to worry about.  Maybe I'm just a worrier but having this issue for months seems a bit extreme. 

    I have a area of thickness but not so much on the breast itself but just above and the breast doc didn't seem to concerned once again.  She took the sample from a red area but it was just a skin biopsy done in the office.  Would that be enough to diagnose IBC?

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited October 2008

    thank you so much for all the information.  I don't know whether I am over reacting of not.  I was just discussing your entry with my husband and he said if I was still uncomfortable maybe I should go an see an oncologist.  I don't know whether to wait and see my gyn on the 7th or to  just go.  I guess I just don't understand why it is so hard for a breast health doctor to see the frustration when you have voiced it so loudly...why not just order the test to make sure?????  I feel like we have to be the doctor, do the research, and then go find someone who will listen and do something to rule it out definitively.  I know I am probably preaching to the choir but this scares me and I'm frustrated.  I guess I will talk it over with my husband and bit more and make a decision. 

    In your journey have you met anyone with IBC that had a negative pathology report?  I think that is why I am the most apprehensive.  I have read so many stories that said they had a negative skin biopsy.I had the biopsy and the doc says "that's it...you don't have the big ugly cancer but I don't know why you are having the problems.  Maybe you should go back to the dermatologist." The dermatologist can't care for the heaviness and discomfort inside the breast.  Normally she is very thorough, after all she is a 5 year breast cancer survivor herself.

    Any other information you can send my way would be great.  Thanks praying4u, I really appreciate your help.

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited October 2008

    thanks for the info and for the prayers.  God has truly blessed you with a gift of peace with knowledge.  I love you signature line and do truly belive it too "by His wounds we are healed".  I pray I am being over concerned but I think I will contact my gyn and see if he can get me in any sooner.  He usually seems open for discussion.  I don't know...I just have an uneasy feeling about this and I guess that is why I am so frustrated.  I don't want my concerns to fall on deaf ears...I just want someone to be able to rule out IBC for sure...not the blanket answer of "I don't think it is anything to worry about right now".  Well, it is not your body, life and family so just do the tests and make sure...you know what I mean.  I'm sure you do from the story you shared.

    I have read a few of the posts on the IBC area...you were right, there were a few that did have a negative biopsy.  I guess my day starts tomorrow with contacting my gyn and maybe making a second contact with my breast doctor to see if one of them will schedule an MRI or something that can validate the negative pathology report.

    Keep me in your prayers...p4u2!

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited October 2008

    I called the gyn and told them my concerns...he is working me in tomorrow morning...scared to death but better safe than sorry....Right?????????

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited October 2008

    younggrandma:

    Yes it is better to be safe! 

    Good Luck tomorrow

    Hugs

    Laura

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited October 2008

    Laura, praying4u and Shrink,

    Thanks so much for the well wishes,input and information.  I am a woman of faith and I know God is walking the journey with me.  Praying4U I hope you have a wonderful trip and I hope I have great news for you when you return.

    Shrink...I would like to ask you a few more questions about the negative biopsy result...I'm not real certain what all the initials you were speaking of meant and I'm not real sure what a core biopsy is.  Please feel free to contact me directly or on the post.  I just want to go in as armed as possible tomorrow.

    Thanks and prayers to all of you.

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  • shrink
    shrink Member Posts: 936
    edited October 2008

    ILC is Invasive Lobular Cancer, IDC is Invansive Ductal Cancer (the most common breast cancer).  In my case the diagnosis of IBC was made based on my symptoms because, as I said, the skin biopsy came back negative for IBC. So, I may never know if I really had IBC.  However, the treatment for IBC, ILC and IDC is the same if the tumor is of a certain size and if there is invasion to the lymph nodes. A needle biopsy involves drawing some cells from the breast in the suspicious area with a fine needle.  A core biopsy goes deeper.  Several samples are taken.  I didn't actually have a lump, just an area of thickening which showed up on the ultra sound and the mammography.  For some IBCers, this doesn't appear on either test.  Yes, this is a rare disease, something like 1-5% of all women with brreast cancer have IBC.  But, it does happen and many doctors don't have a clue about the symptoms.  I'll be thinking of you.  Please let us know what happens.

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited October 2008

    Shrink,

    Thanks so much for the information.  It is very interesting.  I am trying to figure out how my breast doctor could say she ruled out IBC just by taking a skin biopsy.  She did not do any type of needle or core biopsy...she just said we would wait to see how things looked on the mam in March.

    I am very greatful for the nudging I've received from this web page...otherwise I probably would have waited until March.

    If you have any suggestions for questions I should ask tomorrow feel free to post them...otherwise, I will keep you all posted.  Thanks again!

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited October 2008

    Well...back from the gyn...he is referring to a radiologist that specializes in breast cancer dx.  He, of course, said he thinks it will be all fine but just to be safe.  Apparently it has taken the hospital 3 years to get this radiologist so I'm hoping he is as good as they say.  Of course, the last thing that was said is "you know...worse case...it could be cancer".  I'm guessing he is just trying to make sure I don't blow it off...like at this point I would.  Waiting until this afternoon to hear from them...waiting, waiting, waiting...seems to be the name of the game.  I'll keep you posted.

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited November 2008

    The radiologist said the mammogram looked fine...don't really know what that means.  He said you can see density of the skin tissue if it were IBC when I mentioned an MRI or such.  I still have tenderness, a little swelling and the rash is a tad bit better...I will be following up with my gyn in December and the breast doctor in March, other than that i guess my hands are tied and I'm at their discretion.  Keep me in your prayers...you all are in mine.

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  • younggrandmaof2
    younggrandmaof2 Member Posts: 55
    edited November 2008

    Thank you for the prayers.  I am still concerned but am trying despirately to leave it in the Lord's hands.  If it persists or gets worse I will try the U of O.  Right now I am going to try to enjoy a week of vacation in Disney with my grand babies over Thanksgiving and pick up the worry again when I get back.  I know time is of the essence with IBC but I don't know what else to do.  I'm going to talk to my gyn on 12/10 and see what he says then.  Until then I will live each day to the fullest.

    I'm glad you had a good visit and a time of feeling normal for a while.  You remain in my prayers. 

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