both breasts... also above breasts

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j3brown3
j3brown3 Member Posts: 22
edited June 2014 in IBC (Inflammatory Breast Cancer)

Is there anyone that has had symptoms before diagnosis in/on both of their breasts?  my neck and chest above my breasts have also been very flushed but no temperature.  both breasts have portions of pink skin, some dimpling and feel sore/itchy inconsistantly.~ seeing the b surg again tomorrow because additional symptoms are occuring after she did an ultrasound 12/16 and found no evidence of a problem (referred for an open sore that didn't respond to antibiotics)... I've done more reading and discovered that I should ask for a biopsy and maybe some sort of scan to rule ibc out.  She was very confident last time that I did not have ibc... thought maybe staph?  I want to be respectful but want to be absolutely sure that she does everything necessary one way or the other.  Has anyone known someone to have ibc in both breasts?  What else could this be?

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  • bak94
    bak94 Member Posts: 1,846
    edited January 2012

    I hope you get some answers. I would definitaly push for a biopsy to be 100% sure. .

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  • j3brown3
    j3brown3 Member Posts: 22
    edited January 2012

    what i got was another ultrasound... an explaination that she did not see the pink i was seeing... and a round of antibiotics for possible mrsa (she consulted an infectious disease dr)....  she did not see anything to biopsy but made an appointment for another mamo since my last one was done in july (perfectly clear)  she is also requesting an mri but doesn't expect my insurance to approve it

    i have an appointment to go back and see her after 10 days on the antibiotic... and after all is said and  done, she is absolutely sure i do not have ibc... i don't think she hears me saying my breasts and underarms are sore... occassionally a burning feeling.... and i am not imagining pink skin on the side of the breast

    i am very frustrated... very

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2012

    j3, I don't have IBC, but since no one else has responded to your update, I thought I would offer you my take on your situation...

    Is the "b surg" you referred to in your OP actually a fully dedicated breast surgeon -- in other words, one who does only breast diagnosing and surgery?  Or is she possibly a surgeon who does breast surgery along with a lot of other types of surgeries?  I'm asking because, if she's the former (one who only sees breast patients), then she's probably seen enough IBC to recognize symptoms that call for a biopsy.  If she's not a full time breast only surgeon/expert, then you may want to get a 2nd opinion from a surgeon who is.  IBC is rare, and most general surgeons, even those who may have a sub-specialty in bc, probably don't actually see cases of it very often.

    What seems a bit unusual about your situation is that you have the all the symptoms in both breasts, which is usually not the case with breast cancer.  But the possible MRSA dx seems (at least to me) every bit as concerning as IBC would be, so if you're not happy with your doctor's listening skills or judgment, maybe you should look for a different doctor ASAP.  I'm not a doctor, but if someone suggested I might have MRSA, I'm not sure I'd be content sticking with a doctor I didn't like or trust.

    Good luck, and please keep us posted ...  Deanna

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited January 2012

    Hi j3brown3.

    I sent you a private message---look at the top and on the right you will see a block that says "private messages."  I don't think that a breast surgeon will necessarily get the diagnosis right---it took my sister visits to three major cancer centers before she got the correct IBC diagnosis---and only one cancer center out of three got it right.  The chances are that you do not have IBC. But at least get a second opinion. 

    Hugs

    Mandy

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited January 2012

    From the sounds of your second appointment I would find a different doctor.  A breast specialist would hopefully be the best.  Deanna & Brandi both gave a great advise.  We know our breats better than anyone else so I would keep pursuing until you get the answers you deserve.  NJ

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  • j3brown3
    j3brown3 Member Posts: 22
    edited January 2012

    I think I have a lead on a second opinion.... another cancer treatment center in Grand Rapids MI, where at least the scheduler sounded confident that their specialist would exhaust all of their resources to rule out ibc... including necessary biopsy and scans!  Not sure how quick it will be to get an appt. but faxed my signed release of records to 1st doc before I left work tonight.  If I have any doubts after the second opinion... I will travel out of state to one of the leading specialists... hopefully I won't need to do that.  Thanks to everyone for caring and encouragement... makes me feel 'not so crazy'.    Jody

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited January 2012

    Jody: Do you have a copy of your records?   You are entitled to them...fax a second release for a copy of the records to go to you. That way you will be able to read them and it will help you to ask better questions.  As well, you also will have them any time you need an opinion.  I have copies of all of my records and of my mammos as well.  I ask for them as I leave the doctor's office.

    Cheers.

    Mandy

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  • itsok
    itsok Member Posts: 8
    edited January 2012

    I am in treatment for IBC. When I first suspected I got a mam and breast ultrsound - NEITHER diagnostically confirmed IBC. But I dd pusue a biopsy, b surg did 6 punch biopsies that confirmed IBC. BUT went for second opinio, next breast center did a breast MRI which also dianostically comfirmed IBC but also found 2.5 cm invasive tumor. The tumor did not show uo on mam or ultrsound. This is COMMON with IBC, mams and ultrasounds are not the best tools. Breast MRIs and biopsies should be requested, both expedited and confirmed my diagnosis.



    Good luck and be your own advocate!

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  • ma111
    ma111 Member Posts: 1,376
    edited January 2012

    I have IBC. It was dx with a skin punch bx. Both breast are involved. I do have redness on my neck with swollen nodes on both sides. I also have nodes on the originally unaffeced side in the arm pit. No pain in the neck or armpit area at all. IBC usually doesn't hurt. I also have a pulling sensation in the front which I was told was from the cancer. It feels like my chin is being pulled down to my neck.

    If your IBC was as involved as much as the area you are saying, they/you would be able to feel nodes. It travels through the lymph system and where there are nodes, they enlarge. These nodes do not hurt. I have itching where I have involvement in the neck, under arm and breast, but pain is elsewhere from it traveling.

    Your family docotor or a dermotologist can do a skin punch bx to put your mind at ease. I would go that route if the BS doesn't want to do a skin punch. Did they include a ultrasound with the mammogram? IBC doesn't show up on mammos, but the nodes will show up on ultrasound.

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  • j3brown3
    j3brown3 Member Posts: 22
    edited January 2012

    I have released my records to another center in town and am waiting to see when they can get me in.  I am a little confused by the pain issue... I have had pain in the breast.... it isn't bad but I definately am aware.  I have also felt the kinds of sensations I had 25 yrs ago breast feeding... fullness, tingling/itching in armpits.  My understanding was that some people have pain and others do not... that some may have one symptom and others have more or all.  I also thought that some people have reported having ultrasounds with negative results... does it have to show on a ultrasound in nodes?  It is all very confusing... especially since the breast surgeon was so absolutely sure I do not have ibc... and besides the uncomfortable breast I had a sore, I have pink skin and what I would describe as dimpling.  I just need to keep my mind on something else until I get in for the second opinion. I hope it is soon.

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited January 2012

    J, Glad you found another place to go.  You have several symptoms so you are justified in your pursuit. Hang in there. NJ  

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited January 2012

    j3

    I had both an utrasound and chest x-ray when they were trying to rule things in or out.  Nothing showed up on the utrasound and my understanding is you need a biopsy. I eventually had an mri, biopsy and punc biopsy.  I was fortunate that the MD i was seeing at the time was fairly sure it was IBC, so I din't have to fight or advocate for anyof the testing.   I did have pain and that was the first symptom that led meto callmy primary care.  It was painful when I wouldlay on that side while sleeping and soemtime a burining or shooting pain thru my breast.  So pain can be one of the symptoms, but we are alldiferent. 

    Sounds like you are on the right track.  Hopefully an appointment and answers soon.

    Gentle    hugs

    Nel

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  • j3brown3
    j3brown3 Member Posts: 22
    edited January 2012

    THANK EVERYONE FOR THE POSITIVE ENCOURAGEMENT... BRINGS TEARS TO MY EYES THAT STRANGERS ARE SO KIND AND SUPPORTIVE .... THANKS FOR ALL OF THE HUGS!  i WILL IMAGINE THEM WHEN  I'M STARTING TO WORRY:)  ~ JODY

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  • ma111
    ma111 Member Posts: 1,376
    edited January 2012

    You do not have to have a positive ultrasound. I am glad you found another place to go to. I hope they do a punch bx. If you had a negative ultrasound I am happy for you, because that would be an earlier stage then mine!

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  • j3brown3
    j3brown3 Member Posts: 22
    edited January 2012

    I have an appointment for second opinion... Tuesday afternoon... 1/10.  I was told they will do diagnostic mamo, and all else necessary when I go in for this appt.  I am trying not to obsess about the coming and going of symptoms... but as I type these words my right breast is burning a bit like it's being twisted.  :(  Trying not to get ahead of myself but also worried about the fact I have just about 16 sick days accumulated.  Maybe I should make plans to to to the movies... think about something else. hugs all ~ Jody

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  • ma111
    ma111 Member Posts: 1,376
    edited January 2012

    Good!

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  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited January 2012

    Jody, how did the appointment go? 

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  • j3brown3
    j3brown3 Member Posts: 22
    edited January 2012

    ok - i guess... thanks for asking... the people in the center were very kind... i had a breast exam and the nurse noted that my breasts 'did' have a different appearance... today i was blotchy, still have healing sores... then i had a mamo of just my right breast because that was the one which first appeared red and had a sore ( and that was the order by the first dr.)  then i met with the breast specialist who did another exam... although she acknowledged the pink splotchy appearance , she did not feel that the appearance indicated ibc (which she has treated before)  she said pretty much the same as my first breast person but it just seemed more respectful... she did not want to do a biopsy... could not justify it but did say she would go to bat with the ins. company for an mri... so they'll schedule an mri if the ins okays it.... and  i'm going to try to quit obsessing until/unless i have new or more intense symptoms   ~  presumably the mri won't show anything if both drs concered that it isn't ibc ....

    thanks again for your kindness and concern... it has made the anxiety much easier to dealwith!

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  • ma111
    ma111 Member Posts: 1,376
    edited January 2012

    Glad to hear the news and thanks for updating us.

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  • j3brown3
    j3brown3 Member Posts: 22
    edited January 2012

    mri is expected to be denied  by ins... 1st doc had requested it, so 2nd doc has to wait for the official denial before they can make their request... so i'm waiting and wondering:(  and HATE being in limbo!

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  • j3brown3
    j3brown3 Member Posts: 22
    edited January 2012

    1st and 2nd opinionos still not concerned... but appealed denial by ins. and i am scheduled for mri next thur.   still having soreness, fullness, growing area of light pink skin and now some very small pink bumps that look like minibites!  now going to try to forget about it best i can for a week... oh yes 2nd opinion recommended 800 ibuprofin x3 day and wearing sports bras>>> for inflammation?pain   waiting>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

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