pregnant with IBC? how to do I move things on?

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Square282
Square282 Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)

Dear Girls

This site has the most informative website I found. Thank you so much. Please can I ask advice or look for reassurance?

I m very happily 18 weeks pregnant at 34 after two years of fertility treatment and miscarriages. I had very large heavy breasts anyway and they have got bigger. Two/Three weeks ago I noticed a red hot patch (slightly inflamed) on my right breast and some on my left breast, I put it down to ill fitting bra. Changed bras.. left it off .....as much as possible and stopped using body wash. At night time it would be worse with ridges and marks on my breast left from the bra. Also I have large pores where the breasts meet and am now convinced that it s peau d orange. How do I know if it s really peau d orange. It does feel think but the thickness goes away after I leave my bra off for awhile.

I use the internet constantly and could not find anything on this on the pregnancy sites. Then all of a sudden I came across IBC and could not believe it! I had never heard of it and I consider myself quite informed (stupidly now, it seems). My mum is in her fourth year after being diagnosed with another 'rare' form of breast cancer, invasive lobular breast cancer. She is doing really well thank god but I cannot share my anxiety at the moment for fear of scaring her too much.

I went straight to the doctor who did nt know anything either. He spent 15 min looking up stuff on it, examined me twice(had to undress twice!) and then gave me antibiotics telling me to see my local GP. I saw her and she has referred me and I ll see a breast specalist within two weeks. She said it s not orange skin but I dont know.... she did nt really talk about IBC and concentrated on the lump issue even though I said you dont have to have one.

It s been 4 days on antibitoics and I THINK the redness is fading and especially one one breast. My breasts are not swollen but the pores and the ridges left after my bra wearing make it feel kinda thick. Is this peau d 'orange? I m  terrified and my poor husband has finally broken down and cried in front of me after being so strong for me throughout everything.

Girls/women please help and god bless to all you brave women out there.

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Comments

  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited April 2011

    square-  I am so sorry for your anxiety.  Perhaps you can get an appointment sooner than two weeks to see a BS?  Did they do an ultrasound?  I am so happy for you finally getting pregnant. I went through years of infertility treatment and repeat miscarriages.  I finally gave birth to our fabulous son just shy of my 43rd birthday.  You should know that there are lots of women who are diagnosed with BC during pregnancy and undergo cancer treatment and continue a normal, healthy pregnancy.  Just last week NBC evening news did a followup story of a woman who actually underwent chemo during pregnancy (doesn't get to the baby). She had since given birth and was finishing up with her treatments.  I am hoping you will get only good news when you see your other doctors.  Now that I have completed nearly a year of treatment, I will say that those first few weeks of waiting were the worst part.  Waiting is torture.  Your imagination can think up the absolutely worst scenarios.  Try to get your doctor appointments moved up.  Plead with them and don't hesitate to use the pregnancy card!

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  • Faith316
    Faith316 Member Posts: 2,431
    edited April 2011

    But ...... also remember that pregnancy causes lots of changes in the breasts, too.  Definitely check things out but don't assume it is IBC.  It may be pregnancy-related.

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  • Square282
    Square282 Member Posts: 5
    edited April 2011

    Thanks so much ladies. Designermon , it s still so good to hear happy ending to fertility issues. Nothing can take that away from anyone. Faith, you re right and I really hope it s pregnancy related but I am getting it checked out and they will start with an ultrasound, I m just afraid of losing time waiting another week but I cant get the appts moved up as I m away at the moment. I really hope it s an infection and that the symptons recede. I think they have started too. It s just that everywhere I look on the internet there is no other explanation for dimpled/peau d orange breasts except IBC. I think the pores are getting smaller as the redness fades but am not sure. would the symptons recede and react to antibiotics? would symptons get worse or stabilise? I will let you all know but whatever happens I m so grateful to you for taking time out to comment and advice and I m going to make sure my very large circle of girlfirends know about  IBC and what to look for.

    take care everyone. X  

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  • Gingerbrew
    Gingerbrew Member Posts: 2,859
    edited April 2011

    Square282,

    I would move my plans to get to a breast specialist as soon as possible. If it is IBC, those patients need treatment very quickly. The rest of us wait for biopsy, scans, surgery etc. IBC patients go to the head of the line because time is critical.  You don't say what state you are from but MD Anderson in Texas is the foremost treatment center for IBC in the country. IBC patients need the very best, as soon as possible. 

    I hope  things go well for you.

    Ginger

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  • anonymice
    anonymice Member Posts: 532
    edited April 2011

    Hi Square,

    Congratulations on your pregnancy, first of all!  I am so sorry to hear that you are going through this scare.  

    I first noticed my IBC symptoms in the way you are - with ridges on my breast from my bra.  However, I *wasn't* pregnant at the time.  So, although your symptoms are suspicious, do remember that IBC is very rare and there are many reasons you could be experiencing what you are.

    Having said that, insist on biopsy, which hopefully will not be a problem as you are seeing a specialist.  It doesn't matter who the practitioner is, mastitis and IBC cannot be differentiated without biopsy.   If you encounter any resistance absolutely insist, because now women ARE living after a diagnosis of IBC and one of the primary reasons is because they are actually being *treated* for it in time, in better ways.  

    Hugs,

    Pam 

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  • pp729
    pp729 Member Posts: 135
    edited April 2011

    Hi Square282.  First, congrats on the pregnancy -- what a magical time for you and your family. 

    I agree with the other ladies -- be insistent when you speak with the doctors that a biopsy is scheduled quickly and that, if it is diagnosed as IBC, you see someone who is very knowledgeable in this particular type of BC.  Also, not sure where you live but Fox Chase in Philadelphia has a phenomenal doctor named Masimo Cristofanilli.  Another great location is MD Anderson in Texas.  Even if treatment there is not an option, these are certainly places to consider for a diagnosis or second opinion.  We are all hoping for you that this is pregnancy-related, but you will not find a better group of women than on this forum for info.  They've all lived and breathed it!!!  I am so thankful to have found this as a resource for my mom.

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited April 2011

    Square282, sorry you have to deal with all this stress at a time that would otherwise be a miraculous moment!

    I have no experience with IBC but I DO have incision healing issues and I take digital photos of my incision every day to monitor my progress. Taking photos like this helps help you to see what is actually going on from day to day and allows you to see progression. In our minds we think things are getting better or worse, but images never lie!

    Tip: Be sure to use your "macro" setting (most digital cameras have one) when taking images of your skin close up. It provides fantastic clarity.

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  • nash
    nash Member Posts: 2,600
    edited April 2011

    Square282, I don't have IBC (I have ILC like your mom), and I obviously haven't seen your breasts, but I did want to say that when I was pregnant (twice), my breasts changed a lot in the second trimester. I think the odds are in your favor that you're dealing with some sort of hormonal changes from the pregnancy. That being said, it's very good that you're being checked out, and like the other girls said, insist on a biopsy if the symptoms persist/worsen.

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  • Gingerbrew
    Gingerbrew Member Posts: 2,859
    edited April 2011

    bump

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  • Claudia413
    Claudia413 Member Posts: 114
    edited April 2011

    Square282, I was diagnosed with IBC in 2007. I did not have peau d'orange (which is a dimpling of the skin, looking a lot like the skin of an orange, but not orange in color), but had a discoloration on my right breast. There's usually no solid lump with IBC and usually doesn't show on a routine mammo...it takes a diagnostic mammo which specifically looks for the "nesting" or "sheeting" of the tumors, not a solid lump. You can check out the signs and symptoms at www.EraseIBC.com. You really need to ask them to rule it out with a biopsy if they will.  You have to be insistent and stand up for yourself. My doctor was not aware of IBC and kept giving me antibiotics for mastitis. Mastitis is an infection in the milk ducts. Remember that an infection may give you a temperature, and IBC will not. However, your breast may feel warm to the touch and you can have pain. Good luck in getting a proper diagnosis.

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  • Square282
    Square282 Member Posts: 5
    edited April 2011

    Dear All

    thanks for all the advice, I took it. Had mammograms, ultrasounds, a 'mini' biopsy. all came back ok except for some cells were graded as suspicsious but probably bengin. I will have a full core biospy. Feel less terrified but still a huge worry. Still taking antibiotics but only a slow improvement which sets me worrying again. going to try and put it out of my mind for the moment.

    Thanks again for all the advice and support.

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  • Square282
    Square282 Member Posts: 5
    edited May 2011

    hi all

    so many of these threads end abruptly but I wanted to finish this for anyone like me who had been desparately browsing for answers. I got the biospy results and thank god all the tissue was benign. It s been an agonizing 6 weeks waiting to see specialists, having tests, dealing with inconclusive results and having to have more and waiting again for results. The anguish for me and my family were at times too much to take but thankfully I can say all the professionals I dealt with took my case seriously and seemed to know about IBC. They really wanted to rule it out. I still have some peau d orange in both breasts but they say from all the tests its pregnancy related.

    I wanted to say thank you to this forum and the others you recommended on this site because the amount of information support and advice was very useful, life saving and positive but very very terrifying. As some of your contributors have pointed out this is a cancer site so you deal in cancer mostly so I thought it important to add my litttle story to help others like me who were searching for information on breast issues.

    Thank you again ladies who answered my query, I cannot tell you the lifeline you threw me while I was waiting for to see specialists and the hard times in between. Some of the specilaists asked me was I a nurse as I was so well informed!

    I wish all those searching and those gripped by terror the best outcomes and a healthy recovery. My Mom is testament to that, she too just got her 4th annual all clear after invasive lobular breast cancer that had spread to lymph nodes.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited May 2011

    Square282:  So happy that the results were not ibc.  Wishing you blessings with your pregnancy and glad the stress is over.   Sending blessing for your upcoming birth.

    Terri

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  • tlarnold
    tlarnold Member Posts: 24
    edited May 2011

    love happy endings!

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  • Square282
    Square282 Member Posts: 5
    edited May 2011

    thank you ladies. How generous you all are with your sentiments and genuine feelings and wishes. You are all still on my mind. I am determined to spread the word about IBC.

    Wishing you all health and happiness. XXX

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