very concerned about IBC 22 years old

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NASM123
NASM123 Member Posts: 33

3 days ago i noticed my left breast was swollen, red, the inflamed skin literally looks similar to an orange peel, it is warm to the touch, my nipple is flattened a bit and only partially erects. when i put my fingers on the swollen-red area, you can see the indention of my fingers just like memory foam. Also the skin is peeling really bad. It has peeled to the point of bleeding.

I went to a GP today and they looked quite concerned. They said it has all of the characteristics of IBC and they prescribed me Augmentin 875mg to rule out an infection. They want me back the 31st to see if there is any change, and if not they are going to refer me to the Women's Imaging here in town to go further.

I am very worried. I would appreciate any advice, thoughts, stories, prayers, best wishes, doesn't matter to me.

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Comments

  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Hi nasm123,

    I am sorry you are feeling this way,but at 22 its unheard of to have this,i was diagnosed at 83 yrs old, last year,i have never heard of peeling in IBC,some symptoms of IBC resemble an infection..

    Best of luck and get back to us ..

  • mandymoo
    mandymoo Member Posts: 815
    edited March 2014

    hi nasm123, IBC is more common in younger women. I would get referred to a breast specialist as soon as possible and dont wait to see if the antibiotics work. Time is of the essence. You will probably need a core biopsy done of your breast. There have also been even some teenagers who were unfortunately diagnosed with this disease. I truly hope that you just have mastitis or something along that line that can be cured. Good luck and God bless. Let us know how you get on. 

  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Hi Mandymoo,i am surprised it can happen to young people this IBC,

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2014

    jessozzie - I have never heard that it is "more common" in young women  but more common in us 'oldster' (I was 63 when DX, 67 now).

    From all I've been told/learned, peau d'orange (French for 'orange peel') skin is part of the 'signs' of IBC.  I developed it.  It is not the skin peeling but looks like the skin of an orange.

  • purplemom1982
    purplemom1982 Member Posts: 7
    edited March 2014

    Definitely get it checked out as soon as possible.  My regular dr. originally thought I was just having pains from caffeine use... then she thought mastitis. The antibiotics didn't help.  I had a mammogram that just showed dense breasts and ultrasound that said I had thickening of the skin.  Finally got them to refer me to a surgeon who tried a couple of things and then did a breast biopsy and skin biopsy which came back as IBC.  BTW.. I was diagnosed at the age of 31.

  • mandymoo
    mandymoo Member Posts: 815
    edited March 2014

    Jessozzie, I used to belong to a different website, which I have just learned has now been shut down due to spammers, but you can access it through googling "ibchelp". Its just the support thread that you cannot access. 

    Patti Bradfield was one of the founders and she then set up "eraseibc" website due to her daughter passing. Her daughter was in her late teens or early twenties when she passed. I have bean a member of that website since 2006 when I was first diagnosed and I found the support fantastic. There were some younger ones there in their twenties and thirties and some with families. 

    I think that the average age is about 45 for IBC, but that is still young compared to other cancers which have an older average (if that makes sense).

    Warm hugs

    Mandy xx

  • Wynne50
    Wynne50 Member Posts: 67
    edited March 2014

    I'm so sorry this is happening to you and pray it turns out to be an infection.  You are way to young to be dealing with this.  My heart goes out to everyone dealing with this. The support you will find here is amazing.  Hugs to you

  • Nel138281
    Nel138281 Member Posts: 2,124
    edited March 2014

    This may sound crazy - but when they were ruling out an infection, antibiotics over the course of a weekend, the surgeon used a black sharpie to draw a circle on my breast around where it was swollen.  This then helped confirm his suspicions of IBC, as he had clear indication the swelling was not going down.  Not real high tech - but helped him and me from believing things were improving maybe even minimally, when they weren't. You can do this yourself, your doc may think you are crazy.  And like others have said, do not wait until the 31st.  Sooner rather than later is better. 

    Keep us posted

    Nel

  • Jules_NY
    Jules_NY Member Posts: 276
    edited March 2014

    so sorry to hear you are going through this. I don't mean to scare you but all that you are describing is exactly how my IBC presented. Do you have a fever? If not than it is most likely not mastitis. I would not wait until the 31st. 

    Good luck!!!

  • Akevia
    Akevia Member Posts: 209
    edited March 2014

    hello NASM123

    I agree with mandymoo, go get check ASAP and don't wait. I was diagnosis with IBC last year at 32. I have heard the youngest case was a 12 year old. Cancer has no age on it, and nothing is unheard of. If I could send you a pic of my breast I would. The changes are so fast and the cancer is so aggressive. It took 4 month for my tumor to grow about 6 cm and for it to get into my lymph nodes. I had warm/ hot to the touch, breast  twice as big as the other, my breast look like an orange and sharp pain. The tumor grew into my arm pit in the matter of weeks. I'm African American and cancer is more aggressive in us, so that's maybe way everything happened so fast. I also had a tumor, most people with IBC don't but I already had a large fibroid in that breast since I was 15, so I didn't know it was going to develop into cancer. The earlier you know the better because you wouldn't want it to spread into your lymph nodes. I hope this is not the case and it is a infection. Good luck!!

  • mommy13
    mommy13 Member Posts: 127
    edited March 2014

    I would get checked ASAP!! I am 27 with BC and I am contacts with a 21 year old who also has BC  Unfortunately cancer knows no age!

    And even if it's not cancer it could be a nasty infection. Hope that's all it turns out to be! Good luck

  • NASM123
    NASM123 Member Posts: 33
    edited March 2014

    update: Docs are refusing to give me a biopsy because I'm "Too young to worry about it" I'm going to be calling the IBC helpline about this tomorrow. Day 6 on antibiotics, it is purplish pink , inflamed, and very itchy. I also have some shooting pains and some dull pains

  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Dont listen to these Docs,just get it checked as IBC is aggresive and no time to waste honey,if you are able call MD Anderson in Texas or someone in your state,,please get back to us..                                                                                                                                      love and hope.. Jess

  • NASM123
    NASM123 Member Posts: 33
    edited March 2014

    Seriously, every doctor I have tried wants to just "wait and see" due to my age... the stress about this is unbearable..It just keeps getting worse.

  • mandymoo
    mandymoo Member Posts: 815
    edited March 2014

    NASM123 (((hugs))). Have you tried phoning MD Anderson? I live in Australia, but I know that they are fantastic. I just hope that it is an infection, for your sake. Have you tried telling these doctors that they are accountable if it turns out to be IBC and that they will be hearing from you if that is the case? This has certainly been a long week for you. ((hugs))

  • NASM123
    NASM123 Member Posts: 33
    edited March 2014

    So now I have been to quite a few doctors. They all keep saying that I'm too young for breast cancer. It is getting worse and nobody is listening due to my age. These antibiotics are NOT working and they said "Maybe a few more weeks on antibiotics will do the trick" I have heard of MD Anderson but there are none in my area. The closest is about 2 hours away.This  is so upsetting that I'm being ignored due t my age

  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Nasm123,Mandymoo has told you and i have told you, its getting way too long now for someone to see you,2 hours is not too far away, people go from other states to go to Md Anderson..so please see someone ASAP..

  • lekker
    lekker Member Posts: 594
    edited March 2014

    Maybe it is an infection, but the antibiotics you're on currently certainly don't seem to be working.  Have they done a culture?  They need to stop focusing on your age and figure out what's going on with your breast.  If it's an infection, they should be able to tell you what organism is causing it so you can take the appropriate antibiotics.  Ask them what kind of infection takes weeks to respond to antibiotic therapy - and causes peau d'orange and nipple inversion???  My understanding is that antibiotics are almost always given first (as infections are way more common than IBC), but if the rash doesn't start to get better within a few days, a full workup for IBC should be done.  I was 30 when I had a colonoscopy for a single episode of rectal bleeding.  They found a villous adenoma with severe dysplasia and carcinoma in situ  - well on its way to becoming invasive colon cancer.  I was my gastroenterologist's second youngest patient ever - the youngest was already stage 4 by the time they scoped him.  I'm not trying to scare you, but these doctors need to look at all of your symptoms, not just your age.

  • NASM123
    NASM123 Member Posts: 33
    edited March 2014

    There is no pus or anything. It has all of a sudden gotten a lot brighter in color. I have another doctor appointment for a second opinion tomorrow... 

  • mandymoo
    mandymoo Member Posts: 815
    edited March 2014

    nasm123 good luck with your appointment. X . I drive 2 hours to see my oncologist every 3 weeks. Even when I had radiotherapy every day for 5 weeks. I don't think twice about it. 

  • NASM123
    NASM123 Member Posts: 33
    edited March 2014

    I have no vehicle.. It's just coming up with the money to get me there (greyhound is 40 round trip) + city bus in Phoenix to get to the cancer center from the greyhound station

  • mandymoo
    mandymoo Member Posts: 815
    edited March 2014

    Dang, that sucks. I really hope that the doc today will be more helpful. xx

  • amarantha
    amarantha Member Posts: 457
    edited March 2014

    You have me worried too - those symptoms sound so classic IBC. I thought I had mastitis, but I had no fever, and it was IBC. Is there a cancer league where you are ? Some organisation that knows about IBC (it seems so many doctors are still not up to speed with this) and can go to bat for you ?  Perhaps take a print-out of some official information on IBC and harangue a doctor until someone takes the biopsies for you -  I'm waiting on pins and needles now to hear what happens.

  • NASM123
    NASM123 Member Posts: 33
    edited March 2014

    I never once thought it would be this hard. This doc literally laughed at me when I said it showed up overnight. She said "It's impossible for a young women like you to get breast cancer. And... sweety...there is no cancer that just shows up one morning." she said she hasnt even heard of that type of cancer... Gosh, they made me feel like I was just insane the whole time I was there. I am so mad.. and I know that time is of the essence.

  • lekker
    lekker Member Posts: 594
    edited March 2014

    So there's no cancer that shows up overnight?  What infection causes peau d'orange and nipple inversion?  I ask the doctors, not you.  I pray that you are wrong and foolish and the doctors are right.  I pray that you might feel a bit silly while they cure your infection.  I pray that they are right and you can't possibly have IBC.  I know my prayers are strong, but would they bet their medical licenses on my prayers?  Make them tell you what exactly it is that is causing your symptoms if they're so sure it's not cancer.  How dare they leave you to figure this out.

  • NASM123
    NASM123 Member Posts: 33
    edited March 2014

    They are completely REFUSING to do a biopsy because "It's not medically necessary" She said "Well, you can undergo a few more weeks of antibiotics. OR you can leave and find another doctor." 

    When I asked for a biopsy to rule out IBC, the DOCTOR said "Well, lets say you came into my office one day with a little tickle in your foot. You tell me you want me to chop it off. Same with a biopsy, not going to do it unless it is necessary"

  • aunt_paula
    aunt_paula Member Posts: 271
    edited March 2014

    That is infuriating! I hope you can find some way to get this done.

  • NASM123
    NASM123 Member Posts: 33
    edited March 2014

    I have an appointment at the UofA cancer center. It is s not until April 8. I know that's a long way away... but I'm sure they will listen

  • lekker
    lekker Member Posts: 594
    edited March 2014

    You asked for a biopsy, not a mastectomy!  Why would your doctor compare it to chopping off your foot?  The standard of care is that if symptoms don't improve after a week of antibiotics, a biopsy should be performed.  Again, it could be that you're just on the wrong antibiotic, but a biopsy is the only way to know for sure.  

  • amarantha
    amarantha Member Posts: 457
    edited March 2014

    Right - a biopsie not a mastectomy, plus what you have is a bunch of symptoms that are much more worrisome than a tickle !! Why are some doctors soooo dense ? I'm sooooo glad you have an appointment at the U of A cancer center. And 8 days is an okay wait. I think that's a reasonable wait, even though obviously it would be more reassuring to have it yesterday. Please keep up posted !

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