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99sonny99
99sonny99 Member Posts: 2
edited June 2014 in IBC (Inflammatory Breast Cancer)

I'm at my wits end- I KNOW something is wrong, but I can't get anyone to tell me what.  Over the past month I have developed suspicious breast symtpoms that include-  MILD, almost faint redness/purpleness discoloration to the left breast, and has now spread to the right.  It also looks as though I have an extensive network of tiny, hair thin blood vessels (reddish purple colored as well) on the outer side of the left breast, and underneath and reaching over to the outer side of the right breast.  I have had a significant and noticable to ALL increase in breast size, of first the left only, but a few wks later, the right started enlarging as well.  I would guess a good cup size or more bigger- my bras and bikini tops do not fit.  The left is still bigger currently. I have what appears to be tiny little pinholes over each breast (again, all symtpoms described started with the left only, but eventually spread/appeared on the right), as well as very small "dimples" of sorts diffusely throughout the breast, with areas more predominant than others.  There is a puckering- I guess that is how I would describe it, like when you pukcer your lips, they become all "crinkly"- of various areas of the areola of each breast.  At times they feel hotter than than the rest of my skin, and my left nipple has inverted slightly- or, its as though there is a crease in the middle of the nipple.  I have had an U/S of the left breast for a palpable lump (turned out to be a cyst), and mammo, which I have not seen the report of, but was simply told it was normal, although showed dense breast tissue. I have seen 2 breast specialists/surgeons, and they have both said various, non-descript things- I've been told possibly hormone imbalance, simple aging? (at 32?), or some strange, undefinable, virus.  I also have enlarged/a cluster of hard, small lymph nodes above my collarbone on the left side, a node in my neck on the left that I would guess is about a half inch wide and is irregulary shaped, and the mammo also picked up nodes in the auxillary areas of both breasts, with the right almost twice as big as the left.   Now, I share all of this because I have been told very little, given no explanation, have heard "I don't know how to explain your symptoms, Ms. &*^%", yet no one has ordered any follow-up tests or another mammo to compare differences between the mammo done on 6/11 and now, nothing.  I can't deal with "I don't know" as an explanation, and I feel very frustrated over no follow up testing.  Both specialists I have seen (from different medical providers) have said right from the beginning of each exam before examining me at all, how INCREDIBLY rare IBC is first off, how my young age makes that even rarer, and how presentation of symptoms in both breasts would be almost impossible. Almost as if the possiblity of me growing a penis would be more likely!  I TOTALLY understand all of this, how this is so rare, and I know that I am not "presenting" in a way that is typical or common for it, but I am still scared and can't find anything that can explain what is going on with me.  All of these things are sooooo different from what my breasts are normally like, and they came on suddenly and continue to worsen.  I just don't understand why no one seems to take me seriuosly, why no further testing or even follow up with other medical depts is ordered (in case its something else? the 2nd specialist also had an MD in the exam with me and he said it may be a blood clotting disorder??), and how with both the exams and appts and tests I've had, and all the research I've done on my own- nothing can TELL me what is going on???  I just want to know, and am dumbfounded what to do.  Do I just wait?  Am I just crazy?  Could this really be just NORMAL, as the 2nd specialist said?  Is this from aging?  Hormones? If so, why did no one order tests for that? Has anyone out there "presented' diffently and not with the typical "SPOT of redness" in one breast?  I am so confused.  All I know is that SOMETHING is abnormal, and no one will tell me what it is. Everything, when taken together, seems to suggest IBC, but the specialists don't see it that way. How do I know when to "stop" being my own self advocate and just "let go" and put my faith in them??

Please, have any of you courageous, strong women been thru anything like this prior to diagnosis?  Non-typical presenation?  No explanation from drs?  The run-around from "your hysterical to aging to hormone imblance?"  Can hormones or aging cause such an increase in breast size and other symptoms?  Lastly, I have no insurance- my employer can't offer it due to the economy and etc., and I have to pay for all these appts and tests on my own ( I RARELY go to the doctor- unless its bleeding profusley or protruding out of my body, I'm not going to a dr!!) but, I've started to consider whether this might be a contributing factor to a lack of concern and follow up?  Could drs be doing that or pressured by this aspect?  In every appt I've ahd, tis been asked my the dr if I had insurance.  As soon as it wsa disclosed I didn't, I have to say that i sensed a difference in their approach-ALTHOUGH, I could certain;y be reading into this, and it may not be true, but with so little to go on, I'm grasping for some sort of explanation. I would not have even gone to the doctor for this had I not had enough concern to do so, or continue to pursue answers by seeing 2 different specialists. I have very little resources, and every appt is costing me precious dollars I don't have.  I just wish someone would DEFINITIVELY rule out IBC or other kinds of cancer so I can get on with my life.  I don't care what it is- I can live with whatever and don't care WHAT is it, as long as its not cancer- I just need to know its not that.  I thought I was doing the right thing by going to drs for help, but I am more concerned and confused since the first day I noticed things.

Please, can someone offer some help??  I AM SO SORRY this is soooooo long, but I feel I have no other outlet.  I need help for this.  What else could explain my symptoms?  I am in the Madison, WI area- does anyone know of anyone knowledgable and compassionate and takes a "won't stop till I know what it is" approach??

 You are all so brave and helpful...a silent, e-army of women battling not only a monsterous cancer, but also at times the medical system, yet still finding the strength and time to help others.  Can you please help me get some ammo???

99sonny99  

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited July 2009

    99sonny99,

    I think you're right to press on for answers.  Inflammatory breast cancer may be rare, and it may be unlikely that you have it, but it is not something you can afford to "wait and see" with, so you deserve to have it ruled out, ASAP.

    I lived in Madison 30 years ago -- so no up-to-date referrals, unfortunately...  I found this web page from 2006, about "breast cancer screening resources in the Madison area":

    http://www.associatedcontent.com/article/34278/breast_cancer_screenings_and_awareness.html?cat=5

    I also found this "algorithm" page from a university in California-San Diego:

    http://qap.sdsu.edu/screening/breastcancer/bda/flowcharts/skin_nipple_algo5.html

    I think it summarizes very well the importance of being thorough when there's any suspicion of IBC (the bold emphasis is mine):

    "Skin changes that may signify carcinoma include skin erythema, nipple retraction, dimpling, nipple excoriation or crustiness. Asymmetry of the breasts that indicate a recent change should be noted along with other findings, particularly any masses. Inflammatory breast cancer (IBC) symptoms include diffuse erythema, edema involving more than two-thirds of the breast, peau d'orange, tenderness, induration, warmth, enlargement of the breast, and diffuseness (or absence) of a tumor on palpation (Cristofamilli, 2004).

    "Signs of inflammation can be treated with a 10-day course of antibiotics that cover aerobic and anerobic skin bacteria (typical of those in the mouth and vagina), but if not completely (100%) resolved, inflammatory carcinoma must be suspected and diagnostic imaging is required. A possible treatment regimen could be cephalexin plus metronidazole. Nipple retraction can be managed in the case of suspected periductal mastitis or deep tissue infections. A lack of a complete (100%) response requires further diagnostic imaging work-up."

    The only thing I would add to that is that "diagnostic imaging" is often inconclusive and a punch biopsy that includes the affected skin is really the way to rule out IBC.

    Any other Wisconsin area women with recommendations?

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  • lovemyfriend
    lovemyfriend Member Posts: 35
    edited July 2009

    Sadly, your lack of insurance is probably the reason for your VERY POOR treatment.  You need a "punch biopsy" for rule out IBC.  I pray you get the help you need quickly.  God bless.

     Check out the below web site for information on possible places to get help.  http://www.komenmadison.org/whatWeDo/currentGrants.php     

    The below was some of the information on this site.

    Breast Cancer Prevention Services for Low-income Women in Dane County
    The goal of the Breast Cancer Prevention Services for Low-Income Women in Dane County project is to help ACHC increase the number of low-income women in Dane County who are receiving recommended mammogram screening through the use of a quality improvement processes and increased case management and outreach services. ACHC serves an at-risk, low-income and racially and ethnically diverse patient population. In 2008, ACHC service 1,891 women age 40 and over. One-half of ACHC's female medical patients over the age of 40 were uninsured and 64% were racial and ethnic minorities.

    Dr. Ken Loving, Medical Director
    Tammy Quall, (608) 443-5517
    tammy.quall@uwmf.wisc.edu
    3434 East Washington Ave., Madison, WI 53704
    http://www.accesscommunityhealthcenters.org/

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited July 2009

    99sonny99:

    I agree with lovemyfriend that you need to get a biopsy this will either rule out or confirm IBC.  The sooner you know the faster you can start treatment.   My surgeon also told me that I was to young to have bc however the only way he would know was to do a biopsy.  I was 36 yrs old when I received my dx of IBC.  I had none of the symptoms that they list for IBC.

    Praying that this is just an infection and not IBC.

    Hugs

    Laura

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  • 99sonny99
    99sonny99 Member Posts: 2
    edited July 2009

    AnnNYC,

    I apologize for my extremely late response to YOUR response a month ago.  I can't tahnk you enough for your time and research efforts.  It means so very much.  Your information helped a lot and I was able to receive funding through the Susan G. Koman Breat Cancer Foundation for diagnostic screening and testing.  I am STILL in the process of it.  I have now also had full bloodwork done to check for hormonal causes or the presence of an infection, but that too all came back with normal levels.  I had a bilateral breast MRI, and it was written like a poor weather forecast- "These findings may be normal or may represent mastitis.  Inflammatory breast cancer may not be descretely detectable on MRI."  It also stated "prominent assymmetrical background enhancement, more prominantly on the right than the left."  However, the Family Practice doctor who ordered this called me to simply say the MRI was normal and ordered nothing for follow up, even tho I am still symptomatic and continue to worsen.  The most prominant feature is the peau d'orange.  I am wondering if because the redness is not prominent at all that dr's are instantly dismissing it? My doc wouldn't order a biopsy for me, and wrote in a memo she had her nurse read to me over the phone that my "sx are not consistant with IBC."  I was almost in shock.  What else can explain rapid breast size increase, peau d'orange, dimpling and ridging, and nipple inversion?  No one will give me any explanation as to WHAT it is?  What else can cause this combo of symtpoms?  I have no absess or detectable mass or tumor on imaging...waht else can cause this??  I jsut wish someone could give me SOME kind of plausible explanation so I can put this to bed or try to continue to fight the entire medical system in my area.

    I am at a loss again and don't know what to do.  I guess I need to ask this...it's been 8 weeks and 1 day since I first noticed sx's...is this too long to have gone now without it being almost to the point of me being on my deathbed if it were IBC?  I've started to have strange rib cage pain, and some pain in the middle of my upper spine.  Is this just referred pain from the breast issues maybe?  They itch like crazy lately, to the point where I have drawn blood on the skin and it has woken me up in the middle of the night to itch it. 

     If I could please hear from some of you again about your symtpoms, and especially if others of you have had "diagnosis nightmares" and how you dealt with them, how you finally got a biopsy, etc.  It would mean the world to me if you would be kind enough to share.

    You are all so inspiring and courageous, and incredibly selfless to be "out here" in the e-world and helping, praying for, and reponding to worry warts like me! :o)

    God Bless you AnnNYC.  I want sincerely thank Caseysmom and lovemyfriend as well.  All three of you took the time to respond to me and I appreciate your gesture, hugs, and well wishes.  Thank you.

    Much appreciation,

    99sonny99

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  • Faith316
    Faith316 Member Posts: 2,431
    edited August 2009

    99sonny99

    I was also one of those people who was told that they didn't think I had IBC even though I had some of the symptoms.  I just posted a few minutes in the thread called "I called MD Anderson" with a summary of my diagnosis journey.  I won't repost with the same story, but just refer you to go and read it on that thread.

    INSIST that somebody do a biopsy.  Even a dermatologist can do a punch biopsy.  If you think something is wrong, trust your gut.  You do appear to have some of the symptoms of IBC.  It is your body and your life.  Find somebody who will do it.  Good luck.  Go read my other post.  Hope this helps you.

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