mamogram / ultrasound - basically told Cancer

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nancyWorld
nancyWorld Member Posts: 7
edited November 2016 in IBC (Inflammatory Breast Cancer)

I am 56 years old - have had itchy breasts in recent weeks, right side is large and hot and have some pain.  My husband felt a lump so yesterday - I went for a mammogram (with no worries because I have fibrocystic lumpy breasts and I thought the other was just changes due to weather).  In any case the final word was "let's hope that it has been caught in time" by both the tech and the Radiologist after they went into great detail showing me all of the highly suspicious places, the lump, the suspicious lymph gland, the fact that these places have blood sources (explaining that that was an additionally bad sign), pointing out spots of calcification and at least 1 place in the other breast and - they also commented on how calm I was.  They were patting my legs and the tech asked for a hug.  They called my gyn and his staff was so sweet and all of them talking of what a horrible day I had  and telling me that they are there for me any time at all - just call.  Everybody was bending over backwards with kindness toward me.    They tried to get me in with a surgeon yesterday also but none was available and they are working with another group to get me worked in before the end of the week for some biopsies (both breast).  Sooooo, I came home from work (I went back to work after the mammogram and sonogram) and began to Google a bit on my symptoms and came up with IBC which seems to most closely fit my symptoms (also - it had been 1 year 6 months since my last mammogram).   My question is to those who have IBC - does my story sound similar to others ???  I have no doubt that I have breast cancer - they basically told me yesterday but I do not know which type I have.  Of course I realize that nothing is certain until test results are in but I am looking for people who can simply tell me if my story is similar.  I have been down this road back in 2001 when my 1st husband of 25+ years was dx'd with brain cancer and passed 14 months later so sadly, this is not my first experience in what to expect and how to deal with this type news.   This is my very first inquiry and attempt to connect with other people with breast cancer.  Thank you in advance.... Nancy

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  • Lindseyc
    Lindseyc Member Posts: 137
    edited February 2015

    Nancy,

    Hopefully others will chime in. My mother has IBC diagnosed stage IV - march 13. She had a very enlarged boob- rash with orange look to it and inverted nipple. She also had a swollen arm. Of course her stupid GP thought it was a breast infection two months prior so time was wasted. The mammo that she had showed webs and it looked suspicious. The punch biopsy and exam by general surgeon was where we got official IBC diagnosis.

    Hope you get some definitive answers real soon.

    Hugs,

    Lindsey

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  • nancyWorld
    nancyWorld Member Posts: 7
    edited February 2015

    Thank you for you comment Lindsey, I hope your Mom does well...So sorry that she had the delay in treatment due to the GP error - that is horrible....


     

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2015

    Dear NancyWorld, sorry you need to be here but welcome to this active and knowledgeable group.

    You have a fantastic diagnostic group, from your description. They make all the difference to a bad scan result. We're glad you had them. When you have a diagnosis of what your condition is, you'll find people here only too willing to help with suggestions and feedback. IBC is often diagnosed by Dr Google for most things, so understand that you need to talk with your doctor/surgeon to find out your problem and then start to determine the best course of action for you.

    Sorry about you first husband, but Breast Cancer is very treatable and you may have another condition anyway! Take it one step at a time and stay away from Dr Google please as much of the info is outdated and sometimes just wrong.

    Keep us informed as you know more. We hope your biopsies turn out to be benign.

    The Mods

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  • Scwilly
    Scwilly Member Posts: 489
    edited February 2015
    Nancy

    My IBC was diagnosed when I was recalled at the end of Oct 2013 from a mamogram I had in June 2013. I had in fact been given the all clear, then they received the scan from my previous provider(I had moved to Kaiser in the May) and compared them and found a small difference. I was so glad I got the callb ack as I had been noticing symptioms for a few weeks, and had been meaning to call. Would have probably left it for a while knowing me. My symptoms were enlareged left breast (not particularly red), with some itching and thickening on bottom inner side. I couldnt feel a lump (though later during chemo one did seem to develop and then shrink). I had thought it was my periods making a last effort (my last one was the end of June) My recall mamogram didnt seem to bring much up and the Dr did a ultrasound - I had one lymph sligly enlarged, but sge said it was not it was not necessarily a problem. Because of my symptoms, enlargement, itchy spot (it wasnt red but just scratchy and seemed a bit stripy) I was sent to the surgeon for a biopsy. He did some of my skin, and then a needle biopsy of a suspicious area. The rest is history as they say.

    I asked my surgeon how IBC is diagnod and he said clinically - ie by a Dr and not a physical test. I think of it as normal breast cancer deciding to grow a little differently.

    I really hope you get a good result from the biopsy, as this is the definative test. I will be thinking of you - let us know how you get on.

    Sarah
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  • nancyWorld
    nancyWorld Member Posts: 7
    edited February 2015


    Thanks to the moderator for comments and scwilly, the symptoms you describe sound almost identical to me except I do also have a lump.  I too tend to make plans to check into things but get so busy I find myself putting off my own health checks, just never been one to worry much "about myself".    thanks again - I am supposed to have 3 biopsies in the morning however we are in the middle of another snow storm and not sure if we  will be able to make it to the hospital.

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  • Scwilly
    Scwilly Member Posts: 489
    edited February 2015

    I'm crossing fingers the weather is good for you. Whilst I'm sure you are not looking forward to the biopsies, better than waiting any more time. I have an appointment tomorrow with my surgeon to discuss my reconstruction (planned for soon) and recent mammogram. Here in Southern California there's not much chance of snow. Keep safe on the roads.

    Sarah

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  • Ariom
    Ariom Member Posts: 6,197
    edited February 2015

    Hey Bonnie, I can see what an emotive issue this is for you and am not saying you weren't helped with symptoms and finding the right Specialist, by using Google. There's absolutely no doubt that IBC is a terrifying form of BC, albeit a rare one, but I think the advice given by the Mods, was advice which is given all the time, by many of us on this site, always . and with the very best of intentions.

    If you have a bruise, a rash, even a red dot, on your breast and you Google it, it will immediately tell you that it is IBC. I can't even count the number of women who have stumbled in here, terrified after spending time Googling a symptom and they are then absolutely convinced, they have IBC. Some are so convinced by what they have read, that they refuse to believe they have a benign breast issue, even when they have had 2 or 3 different Doctors opinions after examining them and they have had relevant tests. They continue to post here siting the information given by Google.

    There is up to date information here, on this site, and on some of the quality Medical sites, but Google, "in general", does have a lot of outdated and some downright wrong information, which many of the women here on this site, who like you, have been Dx with IBC, try to steer these new members away from. in favor of more respected, reliable, sources.

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  • Noor46
    Noor46 Member Posts: 68
    edited February 2015

    Hi NancyWorld

    My symptoms were: enlarged right breast which was painful to touch (so having a mammo was quite a painful thing), but I myself did not notice redness or heat.

    On the mammo they found a 2,3cm lump and 4 enlarged lymph nodes. Because there was a suspicion of IBC I had 3 biopsies: lump, lymph node and skin.

    What confused me after the biopsies was that they found IDC in the lump and a lymph node, but no cancercells in the skinbiopsy. So a I thought no IBC!

    Then I had IRM and they found 2 lumps and cancerlesions in all of my breast with IBC caracteristics, so I saw my onc and she said she could feel heat and she saw peau d'orange.

    I hope for You the biopsies will not show IBC!

    Noor

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  • nancyWorld
    nancyWorld Member Posts: 7
    edited March 2015


    Thanks again, I got the preliminary results back Friday that just confirmed the cancer in my breast and lymph nodes - 2 nodes showed up on the mammogram but only one was biopsied.  I had a total of 3 biopsies, all showed cancer.  The only other thing I know is that I am not a candidate for anti-estrogen drugs as they will not work on whatever type of cancer that I do have and I don't know what that means - but doctor said it is not good but there are other drug choices. I go see a surgical oncologist tomorrow but not sure he can tell me much at this point since the full path report will not likely be back.  My breast is literally swollen double and very hot - I cannot wear my bras and had to go buy some large sport bras.  I have been using ice packs and taking Tylenol occasionally as it is painful but not unbearable.  Also I did check to make sure I am not running a fever and I am not...  This time last week, life was normal, amazing how life can change in a moment...  thank you all.

     

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited March 2015

    Dea,r Nancy--I'm sorry that the verdict is in but I want you to know that there are therapies that work. I've had bc twice, the second IBC and ER- (like yours). I did chemo first (important with IBC) and had the cancer almost completely gone in 3 cycles. I had to stop for non-chemo related problems and was off chemo for a year and had cancer show up in the inframammary lymph nodes. Went back on Taxol and was completely cancer free after 3 cycles again.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited March 2015

    Nancy,

    Sorry for your diagnosis. I was diagnosed stage IV from the start with ibc, idc & bone mets. Just wanted you to know that you may be able to get on Femera & Pablociclib as first line treatment. Palbociclib is new & is supposed to lengthen the time you can stay on hormonals. Of course, chemo is always first treatment with ibc.

    Hugs,

    Terri

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  • Scwilly
    Scwilly Member Posts: 489
    edited March 2015

    Nancy - so sorry your diagnosis was not as we all hoped. I know exactly how that feels, and how hard it is in the first hours and days before treatment is organised. As WinningSoFar has said there is a lot that can be done. When you get your full pathology your treatment can be planned. I'm so sorry you had to join us but know that we can help you through your journey. ((Hugs)) Sarah

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  • bride
    bride Member Posts: 382
    edited March 2015

    Hi Nancy,

    I'm saddened that you've joined the ranks of those with IBC. Please know that all questions, rants, fears, and quests for information are welcome -- we've all been there.

    IBC is a cunning cancer. I was DXed 94 days after a clean MAMMO. My only symptons were and inverted nipple and a squishy mass that could be palpated only because it was under an old thin scar that had nothing to do with BC. My symptons appeared overnight.

    Some advice I was given when I found BCO. Save all your paperwork. Write down your questions. If it's possible, take a friend with you to help document what your doc says. The American Cancer Society has a plastic file with various dividers for different paperwork. They'll send you one for free. I found it useful as I got up to speed emotionally and in terms of knowledge. This site has massive amounts of good information and Bon is a veritable fount of knowledge.

    I remember my first weeks of having IBC as being a classic case of hurry up and wait. I had scads of scans and tests and then the nasty waiting for results. In the beginning I felt as though I was slightly drunk and being tossed about in a blanket. In time you'll find a rhythm.

    The other thing I hope you'll understand is that when you post -- even if you think you're ranting -- adds strength to all of us.

    Wishing you the best,

    bride

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