Very Scared

yuyueno
yuyueno Member Posts: 75
edited June 2014 in IBC (Inflammatory Breast Cancer)

I wish I found this place and information about IBC much sooner.  I just had a biopsy done today, it was extremely painful, and I was just surfing the internet to see others' experiences with biopsy.  Then, I found this place and about IBC. I am now worried that I may have IBC. 

I greatly appreciate if anyone can give me any feedbacks.  About two months ago, I found a large mass/lump on my right breast. It appeared out of nowhere, and it was pretty large (about 4-5cm on right side of my right breast).  My breast was swelled, warm to touch, and nipple was itching. So, I went to OBGYN and was sent to do mamogram and ultrasound while waiting for an appointment with a surgeon a few weeks later.  First momogram was inconclusive, so they sent me to do another one and ultrasound.  My OBGYN also gave me an antibiotics to see if swelling and pain will go away.

A few weeks l later, I saw a surgeon.  At this time, my breast was still painful, warm, and itching.  The lump was still there and large.  The surgeon told me that my mass/lump seems to be just an infection/mastitius since there was no abnormality found in mamograms and ultrasound.  He gave me antibotics and said my breast will always be "lumpy" anyway so not to worry if the lump does not go away.  But, he told me that small calcifications were found in other area completely separate from the lump in my right breast.  He said he will send me to do biopsy for these small calcifications, but saiid it is less likely that they are cancerous since I am young (34).  That was about three weeks ago.  My breast is still swelled and large, and antibiotics helped very little or nothing.  My right breast is clearly bigger and plumpier than the left. 

So, I just completed my biopsy (done by a different doctor from my surgeon) today. From what the radiologist told me, it seems that they just took tissues from these small calcifications found in my right breast, not my large lump.  I guess here is my question: Would my doctor be that ignorant not to biopsy my large lump I originally went in for?  From what I read on the internet, it is a possiblity I may have IBC.  I wish I knew about IBC sooner so that I could insisit on biopsy on my lump....Now I am worried about my calcifications as well as possiblity of having IBC...

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Comments

  • suzyq18
    suzyq18 Member Posts: 33
    edited August 2008

    hi yuyueno, i hope it is not ibc i was diagnosed august 07 the symptoms you have were a lot like mine swelling itching, but i also felt very tired. i had a core biopsy, they also scanned into the armpit that is where they found the enlarged nodes, i returned within 2 days of the biopsy time is very important for ibc, you must insist on a biopsy iibc is often mistaken for an infecton . keep us posted sue 

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited August 2008

    yuyueno:

    To answer your question about your doctor be ignorant yes they can be.  This is because they have never heard of IBC.  I was told that some doctors may or may not see this type of bc in their career.  I would demand and biopsy from your surgeon if he/she will not do this please seek another surgeon for a second opinion. 

    Keeping my fingers cross for b9 report on the calcification's.  Keep us posted.

    Hugs

    Laura

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  • lexi4
    lexi4 Member Posts: 1,074
    edited August 2008

    Hi yuyueno,

    I know it's scary right now. IBC is really serious and it should be dealt with by a breast cancer specialist if possible. The remark about you only being 34 years old just baffles me. Sometimes these docs seem so out of touch.

    I am hopeful that it isn't IBC. Please keep in touch and keep on top of your care. This is your LIFE.

    Hugs and Prayers,

    Lexi

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  • yuyueno
    yuyueno Member Posts: 75
    edited August 2008

    Thank you everyone for feedbacks.  I really appreciate your support.

    Just an update, my biopsy results are not yet in, but my right breast has become swollen and bigger than ever after a biopsy.  My right armpit has become swollen too.  I don't know if I am having an infection from biopsy or something else is going on.  I am just very scared not knowing what is going on with my breast.  It is not a good feeling to look at in the mirror and see my breast and armpit swelling like a baloon. 

     I know tomorrow is saturday, but I am planning to go to an urgent care to see if they are able to do something.  I am now angry with a surgeon who told me not to worry about my lump/mass in my breast.  How can this be normal?  My breast looks horrible and I'm in pain.

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  • DebinChicago
    DebinChicago Member Posts: 24
    edited August 2008

    I'm so sorry you are going through this.  Glad you are being insistent on getting good care.  Remember, IBC is rare and you need the biopsy to diagnose the disease.  Many other things can cause your symptoms so, even though it seems impossible, you might be worrying over an infection of something.  My sis has calcifications show up routinely on her mammo and such.  She and her docs have been watching them for over 2 years with no changes.  Just stay on top of things, be insistent, remember that most things turn out to be benign (working on taking my own advice right now, so you are not alone) and, if it will make you feel better and I know that it will, call you doc today and insist on a biopsy of the lump and a breast specialist.  If he won't do it ask why and ask for it in writing.  Peace of mind is priceless.

    Deb

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited August 2008

    Yuyueno?  What did you find out?  ANything?

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  • yuyueno
    yuyueno Member Posts: 75
    edited August 2008

    Doctor called me and said I have breast cancer, IDC, though he said it is possible it may be IBC.  He could not tell me what stage/grade or anything like that.  He said he can't tell until i do lumpectomy.  I am devastated.  But, thank you for all your support.

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited August 2008

    yuyu,

    I am so sorry that you got the diagnosis of breast cancer.  It is indeed very devestating, but trust me, it gets better.  As you learn and study, and start treatment, it becomes just part of your life.  The first part with all of the decisions about surgery, treatment etc etc are very stressful.  Feel free to ask as many questions, this site is great for support.  

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited August 2008

    Please make sure your Dr knows what he is doing.  "may be IBC" don't cut it.  A bx shoud have included skin, to see if tumor eboli in lymphatic chanels causing the adema or swelling.(what IBC is)  The treatment for IBC is totally different.  Lumpectomy would not be done normally because the IBC is in sheets and while lumps may be present, until clear margins can be gotten, with neo-adj therapy He would be going back 20 years in the standard of treatment for IBC

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  • spar2
    spar2 Member Posts: 6,827
    edited August 2008

    yuyueno, so very sorry you are going through this, Mrs X is right though, the test and waiting is the hardest part.  You will find strength you never knew you had and you have a right to have a pity party anytime you want and we will be right there holding your hand.  gentle hugs to you

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  • yuyueno
    yuyueno Member Posts: 75
    edited August 2008

    Hi, everyone, thank you for your support.

    ibcspouse, this is exactly what my doctor is saying and doing.  He said it may be IBS yet he is not willing to do any other tests.  He just wants to decide either Double Masectomy or Lumpectomy.  He strongly is pushing me to have double, he said it will increase my survivial rate.  No mentioning of conserving my own breast even though my right brest is healthy. 

    I am going to go see an oncologist tomorrow.  Do you think the oncologist can tell me more about my cancer and condition of it (I don''t even know the size of tumor)?  Maybe he can send me to MRI?

    I have a strong gut feeling from the very start that this is IBC.  I am really hoping my gut is wrong, but even in last few days, my breast is changing.  The mass is getting harder and bigger.  My breast is more painful and swelling.  I know that IBC is very aggressive and it can take a very short period to further develop.  I am really scared.  I arranged a 2nd opinion with a good doctor at Cedars-Sinai, but it is not until the end of next week. 

    Thank you for listening.

    Yuyu

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  • Kerry1000
    Kerry1000 Member Posts: 103
    edited August 2008

    Hi yuyu,

    I am glad that you have another doctor's appointment at a good place.  And I'm glad that you're here, because this board is a great source of information and support.  You're absolutely doing the right thing in following up and being proactive, you sound very intelligent, resourceful and well-informed.  I wanted to let you know also that M.D. Anderson in Houston (I believe) has a center dedicated to IBC; you might consider calling or looking at their site for info. or even to have a consult there.  I know that doing things like that can cost money but this is about your life; in my opinion this is a good reason to use those credit cards if you need to!  Please keep us posted.  I'll be thinking of you and praying for a good (non-IBC) outcome.

    Kerry 

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  • yuyueno
    yuyueno Member Posts: 75
    edited August 2008

    Kerry.

    I went to see an oncologist, and I feel so much better!  She was great and answered all my questions and explained the treatment recommendation.  She thinks it is better for me to go on Chemo first and shrink the tumor before a surgery. She understood my wish for breast conservation.  I think I am going with this doctor and start my chemo.  She wants me to start in two weeks.  I am scared of how I and other will react to hair loss, but I gotta to do what I gotta do to fight this!

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  • Bookworm
    Bookworm Member Posts: 13
    edited August 2008

    IBCSpouse is correct. If you have IBC you'll need your breast removed totally. IBC is a sheet/web/threads of cancer. It is not just a contained 'lump'.

    Please ask for another opinion, for your sake. 

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  • Bookworm
    Bookworm Member Posts: 13
    edited August 2008

    hey yuyueno

    Did you find out if it was IBC? I hope not.

    Be proactive. Learn all you can-sounds like you are:) 

    I cut my hair short a few days after I started chemo, which was a week after diagnosis. The hair started falling out on day ten in clumps. My two teens, with my nurse sister's help, shaved me bald. We all cried, but it was a moment I'll always treasure. (I know that sounds odd, but I did not feel alone, I felt loved.) It prepared me for the next loss-my left breast. You get used to it.

    I will be one year soon since my dx. It was the longest year of my life-I'm glad I am still hear to complain about it! 

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited August 2008

    yuyu,

    It sounds like the oncologist has a good plan.  The standard of care for IBC is chemo, surgery, rads, and then sometimes some more.  The loosing of the hair is one of the hardest things, I think.  I just finally have a full head of curls, and then I started chemo again this week, so buh-bye hair.  Oh well.  Life is easier without it.  At least that is what I will tell myself to help myself feel better.  

    Good luck sweetie!!!!  Let us know how you are doing! 

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  • yuyueno
    yuyueno Member Posts: 75
    edited August 2008

    Yes, I was finally diagnosed with IBC.  I will be doing chemo, surgery, and chemo again.  I just did CT Scan today.  Hopefully, I don't have cancer spread anywhere else.  I'll start my chemo in two weeks!

    Thank you for your inputs, support, anf encouragement!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Yuyu,

    I was diagnosed with IBC last Wednesday, and start chemo on 8/27. I am scared, but prepared to give this a fight. I am going to meditate as I get my chemo, visualizing the chemo attacking the cancer cells in my breast and gobbling them up like Pac-man in the old video game. I have a wig ready for the day I lose my hair, and am going to a "Look good, Feel Better" workshop this week to learn to manage the rest. I am going to make it to the 5-year mark, one day at a time. I am a woman of FAITH, and I will be praying for us as we begin treatment. this is hard, and we are going to do it.

    Next year this time we can both be on the discussion boards encouraging the women who have a new IBC dx.

    Bette 

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  • yuyueno
    yuyueno Member Posts: 75
    edited August 2008

    Bette,

    I admire your proactive and positive attitude.  I like the visualization idea, I definitely will try that. I am also looking into having a wig beforehand to be ready.  Please keep in touch, let's update ourselves with progress with tx.

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