IBC? Left breast lump/ w/ burning pain under nipple

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Wonderingwanderer
Wonderingwanderer Member Posts: 25
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello all,

New to this forum, not dx either. This past friday I was sent to get a mammogram/ultrasound done, which revealed no tumors or masses. However, there was mention of calcifications and dense breast tissue. Also, the Radiologist told me that I had ductal inflammation. I am in my early 30's no history of familial breast cancer. I nursed my two children until 18 months (each). I stopped nursing my youngest about 5 months ago. Originally I thought what I was experiencing was Mastitis (which I have read can have similar symptoms to IBC). Then again, I stopped nursing 5 months ago, so that doesn't make sense. I noticed this pain about a month ago, with crusty nipples and a hot feeling in my left breast. The breast appearance seems 'normal' but then again, my breasts are very deflated and saggy so who knows. The breasts were both very itchy. I also thought I had a candida infection so I cut out sugars lowered yeast intake. My left side is the affected side as far as I can tell. Also, my axillary lymph nodes are swollen and have been for some time. The breast pain seems to come and go, but today it has been intense, and I don't understand why. Currently, under the nipple inside the swollen lump of 'ductal tissue' it feels hot. After speaking with the Radiologist/techs yesterday, I didn't feel that they were certain on their diagnosis. My gut is telling me something is going on with this. I don't think it is normal for breasts to feel like they are burning. I received a call from my pcp informing me that the 'results were ok' (but then again, mammo/ultra don't show IBC) and she said if I had more symptoms or problems to contact her and make an appt. I plan on doing so almost immediately. Also, I have a question about what types of tests WILL show IBC. I was reading surgical biopsy or thermography testing.

Is this true? What do you think of my symptoms? Family and friends seem to think I have some type of infection. But if it were nursing related why would it take 5 months to appear?

Thanks for any help. 

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2014

    Hi wondering,

    I don't know much about what You're asking and will defer to someone who does. It tends to be a little slow around here on weekends but I'm sure someone will be along.

    I just wanted to tell you that thermograms are not an acceptable test or screening for breast cancer. Do not let anyone talk you into wasting your money on one.

    http://www.fda.gov/NewsEvents/Newsroom/PressAnnoun...

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    Thank you Melissa,

    I was curious about the thermography, because I read somewhere that it can show IBC, whereas Mammography/Ultrasonography can not. I suppose the most definitive choice would be a surgical biopsy.

    I am just wondering how my symptoms present themselves on a more objective level.

    To me, it has been a month of "mastitis-like' symptoms. My left breast has been in pain on/off this whole month and I have been under a lot of stress too.

    I thought/think I had/have thrush, but am not sure. But at the same time, I have not nursed in over 5 months, and this pain is just not going away. 

    So far I have not noticed many visual changes in my breast (upon examination yesterday, they looked normal) but there is a lump under the left nipple and it feels like it is on fire. The radiologist said the duct was inflammed. I really don't know what to make of what I am feeling. I really don't want to 'wait it out' as I know it is very dangerous to do so with this type of bc.

    I plan on making an appointment this week with the pcp and explore this issue further.

    Curious to know if my symptoms present like IBC. 

    Thanks for your help. :)

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    HI ,

    I have IBC and i am 83,check those symptons asap as i had similar symptoms, i dont want to scare you, but u must get biopsy to rule out anything suspicious,,,

    best of luck

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Are you in USA?? i am in Autsralia, but MD anderson is the best place in USA

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    Thanks jessozzie.

    Yes, I'm in the US.

    That is very far from where I live.

    I'm looking to get treatment from one of the larger metropolitan hospitals (closer to where I live).

    Thanks for the info. :)

    Also, that DOES scare me. But I appreciate your experience. I am going to make an appt this week. Thank You.

    What other symptoms did you experience leading to your dx?

    Thank you, and take care. :)

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Hi,i had a burning feeling in the breast and it got hard,the nipple was hot but then again yours may be nothing even if the symptons are similar,i have had all my treatments and despite my age, i have come out NED...

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    What is NED?

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    At MD Anderson, look up Dr Crisofanilli, he is a friend of my oncolgist...

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    NED,,,is No Evidence of desease

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    Oh thank goodness!

    :)

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    If you don't mind me asking, 

    you have NED because your IBC is in remission?

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    What state are you in??...

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    PA

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Tell me, is your breast hard, and warm,any orange color? are you small breasted?

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    My IBC has been treated and after surgery the cancer was cut out, now i am having radiotherapy to kill all the cancer remaining

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    My breast is soft (mostly) except the lump (under the nipple). It feels warm overall but not hot. The burning feeling is where the lump is. Like it is radiating from there. It feels like it is on fire (just there). I am very small breasted (now). Small and saggy. There is also connecting pain to the my armpit lymph nodes. 

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    The lump is about the size of a walnut (but the radiologist said it was the ducts?) I thought it was odd that they did not explore or explain this any further to me. My breast size is a small b or large a.

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    I am glad that you are doing well. :)

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    its common for the lympnodes to swell up, it does not mean anything,i am sure you have not got IBC, the breast goes very hard and big,,,so darling dont worry

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    I hope you are right.

    I have been terrified for the last 2 weeks worrying about this.

    I have very little ones and want to be here for them.

    Some of the symptoms I am having don't seem like IBC, but some do.

    Some symptoms almost seem ductal?? Like the lump under my nipple with pain? The radiologist even said that I have ductal inflammation. She contributed it to my extended nursing. Honestly, even though they told me 'everything was ok' I did not feel confident that they knew for sure. 

    I suppose the best thing I can do is see the pcp again and get the biopsy done.

    That would tell me more then just guessing!

    I'm glad you are doing well. :) Thanks for your encouraging words.

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    when you finish ur examination, you will see that their is nothing wrong, worry is just evil thing in our heads...

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    Hoping it's just my worrying, nature :)

    Thank you so much for your support.

    I wish you well.

    I will be back when I find out more information.

    Take care. :)

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  • pp729
    pp729 Member Posts: 135
    edited March 2014

    Wonderingwanderer, I see that you are in the US.  If there is a thought from your local oncologist or breast surgeon that this is IBC, then consider going one of two places for a second opinion:

    MD Anderson in Texas

    Fox Chase in Philadelphia - my mom went there to see Dr. Cristofanalli who is world renown in this field (he was a MD Anderson as well).

    In her case, Dr C ruled out IBC and consulted with her breast surgeon and oncologist at home before she had surgery. 

    IBC is such a rare form of BC that if you do have it, you really need to see a dr who is experienced in it. 

    Hope this helps you!!

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2014

    Wonderingwanderer has two threads going on this topic.  She has provided an update in the other thread, in which she said "I'm really starting to think that I do indeed have an infection in that breast causing these issues."  She is pursuing this with her doctor.

    No dx with concerns...Burning pain under left nipple w/ lump

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    See your Dr before diagnosing yourself,we can all give you positive thinking but we cant give you the correct diagonis..

    Best of luck

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  • Wonderingwanderer
    Wonderingwanderer Member Posts: 25
    edited March 2014

    Thanks all for your support. :)

    Going to see my PCP today.

    Hoping to find out more.

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