If not IBC then what could it be?

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CrawMomma4
CrawMomma4 Member Posts: 16
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi everyone,

I am a 28 y/o stay at home Mom to a set of 4 y/o twins and a special needs 3 year old, and we have an angel in Heaven that watched over us; Shannon would be 6 and died after developing 2 rare birth defects in utero.

When I was pregnant with my son, I had placenta previa and increta (his placenta covered my cervix and grew outside of the womb and attached to my bladder). I ended up needing an emergency cesarean with a partial hysterectomy. Long story short, my body started in to pre-menopause and after many surgeries, I was placed on estrogen to try and control ovarian cysts that started forming. I have been in estrogen for 2 years.

In August, a close friend was diagnosed with BC. Since I was seeing a specialist and not a regular OB, I did a self breast exam and felt a large "mass" in my right breast. I let it go until December because my son is special needs and is in 6 therapies or clinics a week. I noticed that my breast had become very sensitive and was looking very abnormal compared to my left breast. The mass had gotten larger and was now starting to hurt. I made an appointment at the beginning of the month with my OB. I assumed I had a clogged duct because my milk never came in with my son. My OB disagreed saying I would have showed symptoms earlier. He referred to my breast as being "thickened" and sent me to have an ultrasound.

The Radiologist that performed the ultrasound kept telling me how abnormal the tissue was and sent me for an emergency mammogram. I am not sure exactly what he and the other doctors saw on my mammogram, but he kept saying it was not good and that the tissue had thickened. He took me back to have another ultrasound and checked my lymph nodes and found a nodule in my axillary lymph nodes very close to the mass in my breast. He did not say it was cancer, but when I suggested what else it could be, clogged duct, swollen glands, he quickly disagreed. Het set me up for a biopsy for this up upcoming Tuesday. I am scared beyond belief. I just don't know what else this could be besides IBC, especially now showing a nodule in my lymphs. He is going to biopsy both sites.

I am scared beyond belief. I just don't know what else this could possibly be? Any advice is greatly appreciated!!



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  • liv-
    liv- Member Posts: 521
    edited January 2013

    crawmomma4- ditto what bon said.

    best wishes

    xx

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited January 2013

    CrawMomma,

    Could not give you any better advice than what's already been given.  Glad this has been taken seriously and you'll soon know what's up.  Let us know how you are doing.

    Terri

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  • CrawMomma4
    CrawMomma4 Member Posts: 16
    edited January 2013

    Thank you ladies so much for replying!! and yes, the three keep me very much on my toes :) The only thing keeping me sane is their laughter :)



    I feel so relived knowing that there is someone I can ask questions to. I almost feel as if I am drowning; the unknown and uncertainty is what is eating at me. I think I may ask about some anti anxiety meds at my appointment on Tuesday. I have been having anxiety attacks the past couple days. thanks Bon :)



    As soon as I read up on the connection between estrogen and BC I stopped taking the estrogen.



    I got the call in Friday from the nurse to do the post check up before the biopsy on Tuesday morning, she said I should Harvey results on Friday or Monday at the latest.



    I did read about Fox Chase and will definitely be trying to get an appointment :) I live on the other side of the state, but, if that is the best place to be, I want to be there.



    Bon, when I had my u/s, the blackness on the screen (where the tissue was thickened) almost looked like a triangle that took up the screen, with the "peak" at the top and spread down and out- is that what you mean about your spikes and peaks on you u/s?



    I almost feel as if I have this gut feeling that I do have IBC. Did you ladies have the same intuition or were you completely caught off guard by the results?



    I cannot tell you how much I appreciate your feedback.

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  • itsjustme10
    itsjustme10 Member Posts: 796
    edited January 2013

    US News and World Report ranks UPMC very highly for cancer treatment.

    http://health.usnews.com/best-hospitals/area/pa/upmc-university-of-pittsburgh-medical-center-6230029

    And from where you are, isn't Cleveland closer than Philadelphia?  The Cleveland Clinic is highly ranked.

    Here's the list...

    http://health.usnews.com/best-hospitals/search?hospital_name=Hospital+name&specialty_id=IHQCANC

    Since you have a nationally ranked cancer center in your backyard, why not start by finding a team there, to re-read your fillms, and then after the pathology is done, to check that, too? 


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  • CrawMomma4
    CrawMomma4 Member Posts: 16
    edited January 2013

    I actually had no clue that UPMC was so highly ranked for cancer treatment, thank you itsjustme10!! And yes, Cleveland is a heck of a lot closer than Philly. I think that you are right, starting more locally is better. My mind is definitely going a thousand miles an hour thinking of what to do, what needs done, ect...

    This next week is really just going to suck. I think I'll be more anxious to get the results than I have been waiting to have the biopsy.

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  • itsjustme10
    itsjustme10 Member Posts: 796
    edited January 2013

    Well, considering you're still in that waiting mode, I can definitely understand that your mind is reeling from everything.

    Hopefully whatever it is will be something benign, and you can forget everything you've researched.  But, in the off chance that it's bad, just remember that treatment is a marathon, not a sprint...you don't have to decide everything right away, but once you get a treatment plan in place, the anxiety goes away - it's more fear of the unknown than fear of what you're going through - at least that's what I found.   So, take a deep breath, and take it one step at a time. 

    What I can tell you is that my chemo was a total of 8 treatments - 4 of one combo, 4 of another, given 2 weeks apart.  That's why I suggested looking close to home - I can't imagine running every 2nd week all that distance for the same exact regimen you can get nearby.  Especially with you having little ones at home, it would be a logistic nightmare. But hopefully that is information you will never need to use.  But, I'm glad I found that list, and that it was helpful to you!! :)

    So, please keep us updated, and hang in there!!!

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  • busywithfive
    busywithfive Member Posts: 17
    edited January 2013

    Did you have your biopsy today? I've been thinking about you all day. I live in pittsburgh also and have been worried about having IBC. Of course I was told I most likely just have an infection. I'm not completely convinced though, since its been 6+ years since I stopped breast feeding. I've been on an antibiotic for nearly 2 weeks. My symptoms have improved but are not completely gone. I'm getting ready to go in for a second mammogram and ultrasound.



    I talked to a friend who just finished BC treatment at Magee. She loves her Oncologist and highly recommended him, just in case. I also have another friend who had BC and received her treatment at Magee. she lives in Texas now, and still travels back here for appointments. UPMC is among the best if the best.



    I have 5 kids (one who is special needs as well) who are finally all in school! So i understand where you coming from; you don't have time for BC! I really want to know what happens. If you want the name if my friends oncologist, let me know and I'll get it for you. I'd be happy to help you in any way I can, so please keep me posted.

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  • busywithfive
    busywithfive Member Posts: 17
    edited February 2013

    Thanks Bonnie. Anyone heard how Crawmamma's biopsy went? I keep checking to see if she has posted. I went in for my 2nd mammo and US, as well as having some nipple discharge tested by my pcp.  The discharge did not have any bacteria in it. So, since my symptoms still remain and are getting worse, I'm thinking its not an infection. Am I right in assuming that an infection would contain puss in the discharge? The Radiologist is still convinced that that is what it is. He noted that I do have debris in my ducts. He's thinking if not an infection, then a papilloma. I feel like my symptoms don't fit with anything completely! I am more confused than ever...

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  • PatinMN
    PatinMN Member Posts: 920
    edited February 2013

    Busywithfive, if you click on crawmamma's name and scroll down you will find her latest posts. She has posted elsewhere that her biopsy was positive for IDC, unfortunately.

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  • busywithfive
    busywithfive Member Posts: 17
    edited February 2013

    Thanks, I did see that after I left my post :(:(

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