How long did you suspect something was serioisly wrong?

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Debra_Dee
Debra_Dee Member Posts: 7
edited April 2015 in IBC (Inflammatory Breast Cancer)

Hello I have a question or 2 for anyone diagnosed with IBC...

What was the first symptom you noticed?

For 5 months i have been fighting a breast infection. My nipple became inverted with some discharge. I was called back to redo the mamo to rule out some dark area. after 2nd mamo test.. was negative for bc.

I was put on antibiotic which cleared up most of it...leaving a small harded area around my nipple. my nipple softed and returned to normal.

in jan another infection...this one was worse....my breast became red..engorged..skin thickening...hot to touch...bruised...dry skin...no fever. i was given antibiotics again and sent to a specialist. by the time the specialist came around the antibiotic shrunk everything down again leaving the odd lump.

the specialist sent me away and said if it flares up again to call.

less than 3 weeks this time the so called infection is back. each time it comes it seems worse. this time i can see dimpling and my nipple is really inverted and appears to lost all its colour.

i am wondering....has anyone diagnosed experienced this come and go pattern whith intervals becoming shorter prior to diagnosis?

i am not saying i have ibc but i know my body well enough to know something is wrong. 3 rounds of anitbiotics should have resloved this infection yet it seem to keep reappearing. i have an appointment on monday...this time i am going to demand a biopsy. I do not want to take any chances as i now have every sysmpton and IBC sounds.....like a cancer fight to death and remisions sound rare.


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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited March 2015

    It was about 4 days that I thought something was really wrong, and it was IBC. Actually, the fact that your symptoms respond to antibiotics and come and go do NOT sound like IBC to me. That doesn't mean I'm right, but just wanted to put your mind at ease.

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  • Debra_Dee
    Debra_Dee Member Posts: 7
    edited March 2015

    thank you for replying.

    it does put my mind at ease some. At this point i want to get to the bottom of the issue that i think only a biopsy call tell.... but i if it comes to antibiotics vs chemo i should be very pleased and suck up whatever they throw at me.

    you are a champion fighter!! God speed


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  • Debra_Dee
    Debra_Dee Member Posts: 7
    edited March 2015

    thank you so very much for the information!

    pagets...yes dr ruled it out.

    i am 45 and have not breast fed in 23 years. what i also find odd is...back then mastitis put me in the hospital for 3 days. When the iv anibiotics was done my nipple went flat and no longer had feeling in the nipple. Until 5 months ago when it started to invert.

    you mention stress....over the last 3 years i took care of my mother who passed from a glyoblastoma(brain tumour) on xmas eve. last year i cared for my mother inlaw who passed from small cell lung cancer.

    Also that same month with the first infection came i walked away from a high paying job because i could no longer handle the daily pressure.

    i am desperatly trying to be positive...but i know regardless of what my gp says...wearing a sports bra doesnt make my boob so painful i cant standit.doesmt make it ...red...hot...and dimply... what is so weird is that the odd lump moves around. one day i wake up and it and the swelling is on the underside of my breast but the next day it is on the side.

    regardless...my losses the last few years makes me certain of one thing. it is time for a biopsy and pray it is a weird stubborn absess. i wish i could show you a photo but that is against the rules. Usually i dont play by rules lol...but i have a great respect for these web sites and forums.

    i feel humbled speaking with you ladies as i am only paranoid for a fight at this time and each of you live it daily.

    thank you...i will come back and post my results. i see the Dr. Boob guru on Monday

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  • Kicks
    Kicks Member Posts: 4,131
    edited March 2015

    For me - a week. I had had my annual mammo less that 2 mths before and it was that same as had been for yrs - no issues. One night I found an enlarged node (size of an almond) under arm that had not been there the night before. My PA was on vacation and I didn't want to see anyone else so it took me a week to see her. That afternoon she had me in for a new mammo which turned into an US and biopsies that afternoon. Had the path report the next morning at 8 - IBC. 17 days later I started neoadjuvant A/C.

    IBC is aggressive and rapid but is does not present the same in all of us. The VAST majority of rashes/redness on breast are not IBC but other issues. It is rare but if all who decide they are IBC based on the Quack Dr Google actually were - it would be very common, not just between 1% - 5% of all DXd types of BC.

    Of course - anything is possible and you do need to find out what is going on but do not jump to the most negative you can think of. I'm 5 1/2 yrs post DX and still NED and loving and LIVING every day to the utmost. No one has any guarantees what tomorrow may bring - there might be a mountain lion outside and when I walk out to the truck it attacks me (or a multitude of other things that could happen). Find out what is going on as something is - be ready to fight IF you have to WHEN you might have to instead of wasting energy now.


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  • nbeck
    nbeck Member Posts: 39
    edited March 2015

    Just wanted to to tell you my mom's story.... she first went for a mammo when she noticed, well, she didn't know just what to call it, a lump?? Ridge?? Thickened area of tissue?? After mammo was told all was well, they could see a cyst that she could have aspirated if she wanted but probably wasn't necessary. She told us a few times over the next few months that this "lump" would bother her, she had pain, her breast would swell and be red "sometimes". She had another mammo in that time and was once again told that the only thing there was a cyst. She would complain of some of the symptoms coming and going, which I know people tend to think is not a characteristic of IBC, but seemed to be the case for her. When her PCP finally sent her to a large hospital to see a breast surgeon I remember being in absolute SHOCK when she removed her bra. By that time her breast was huge, red, the color on her nipple had completely blanched out so that you couldn't see any color difference, it was inverted with a discharge. She had seen doctors, radiologists, had mammograms, and somehow everyone told her everything was normal for over a year by this time. One glance at her breast and the breast surgeon said "you have inflammatory breast cancer". I know that normally the symptoms don't come and go, I know that IBC is aggressive and usually comes on almost overnight, but I want to get out there that it can be different. My mom's sure was. None of us had any idea IBC even existed, and sometimes I REALLY wish that one of us had googled her symptoms in that year. If we had and had pushed harder at our small town hospital it might have been caught earlier and she might still be here. I'm not out to scare anyone!! Just want to use my mom's story to help raise awareness, because I sure wish that we would have been more aware... It could be a million other things, but if you feel that something is wrong please push for answers! It's your body and you know it better than anyone else!!

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  • nbeck
    nbeck Member Posts: 39
    edited March 2015

    Copied and pasted Bon. Thank you. Every time I read "don't consult Google" it kind of makes me cringe. Yes maybe it DOES lead a whole lot of people here that don't have IBC.... but I would give anything for us to have had a clue what was or COULD BE going on....

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  • Debra_Dee
    Debra_Dee Member Posts: 7
    edited March 2015

    Google has educated me on Glyoblastoma (rare aggressive brain tumour....not so rare now with cell phones being on the market now for a long time. My mother was a cell phone addict from the very first brick type model. So much so... it was when she went to hospice when she would physically let go of her blackberry). She was told she would live 2 - 6 months. She fought for 12.

    Google helped educate me on Small Cell Lung cancer that took my mother in law in less than a year.

    Google educated me on how to provide support and palitive care to those being treated for cancer.

    Google helped me find the hospice that both my mothers passed away in.

    I currently have every symptom of IBC and it is not going away with anitbiotic treatment.

    I would rather look foolish when the doctor tells me it is NOT IBC rather then stick me head in the sand and not be educated if the small chance it is.

    Google helped me find this web sight that is giving me strength through this waiting period.

    After all I am not a paranoid person, but I am a realist and watched 2 women I respect the most take their last breath. Google even helped me to know what to expect when that happend.

    At the end of the day, my boob is red,purple, hot, very painful larger than the other. My nipple no longer look like a nipple and the orange peeling and dry discoloured skin is making it impossible for me to focus on anything else.

    So regardless of my outcome. Google was where I first heard about IBC and I plan on having a conversation about it with every women I know. Because like my mothers cancer that was once so rare...is now becoming more common. Until we know what the causes of cancer are we all need to be aware of our lifestyle, technology, food ect...GOOGLE can help with all of it.

    Thank you for sharing your mothers story. May I ask the outcome, and do you also have a form of BC?

    God Bless knowledge!


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  • nbeck
    nbeck Member Posts: 39
    edited March 2015

    My mom was NED after her treatment and mastectomy for IBC, she was on arimidex and remained NED for 5 years... within a year after being off of arimidex she started having headaches on and off, some vision problems, and not feeling well. She was diagnosed by our same small-town doctors that hadn't heard of IBC with having hyperthyroidism (another time I wish I would have googled).... one day she had a seizure and fell down, was shipped out to the large hospital where her breast cancer was treated to find out that she had a HUGE tumor in her brain (tennis ball sized). The brain surgeon thought it was glyoblastoma, he was able to remove it all but was shocked to find it was the breast cancer. She had about another year after that of NED, she started to have trouble walking, pain, feeling just terrible in general. Diagnosed by our small-town doctors with depression.... by now we knew that this diagnosis was probably a crock. After a pet scan (at the large hospital again) found that the cancer was all through her spine. She was then given 3 months and lived almost 3 months to the day, at home, surrounded by everyone that loved her, with my dad and I taking care of her.

    After a year of breastfeeding my 4th baby I started having a lot of breast changes (indentation, bloody discharge, and a 2cmx2.5cm mass). I have been for ultrasound/mammo twice (small town hospital, then breast center where my mom was treated). Seen a breast surgeon, been declared high risk, and am being seen at the high risk clinic next Thursday, the plan from there is to do an MRI (easier to get MRI insurance approval AFTER I have been seen high risk) the MRI will determine if they will biopsy. After that I will be on a mammogram/MRI screening regimen every year.

    Please push for an answer for your symptoms. Either see someone who KNOWS IBC, or a biopsy. Those are the only two ways of properly diagnosing it. My mom got diagnosed waaaay too far along due to many many health care professionals that had never seen IBC telling her that she was ok. Best of luck to you!!! The statistics ARE on everyone's side, but cancer doesn't discriminate, and it takes people to make up that 1-5ish %... never would have dreamed my mom would be one.

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  • nbeck
    nbeck Member Posts: 39
    edited March 2015

    What you said about your nipple losing its color is what made me finally tell my mom's story.... It flashed me back to that day that I saw her breast for the first time... between her nipple inverting and the color disappearing it was almost like her nipple had disappeared. I have read several posts about IBC without chiming in... kinda felt like I didn't have the right to post since it's not my own personal experience. Something with your post though just rang home to me. I hope it's nothing Debra, but please do be an advocate for yourself!!

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  • Debra_Dee
    Debra_Dee Member Posts: 7
    edited March 2015

    Hello Ladies

    Update: Saw breast specialist today. Ultrasound scheduled for tomorrow to rule in or out a breast cyst. That will determine next step.

    She mentioned a "stubborn bacteria" i should have gotten the name..sorry. Anyway this bacteria does not work well with antibiotics and generally needs to be removed and area cleaned. This is all great news and explains why antibiotics not working. :)

    I will update at final diagnosis.

    Thank you all...the fact you took time to talk to me and share stories is ...a blessing...sending you both ...best wishes.

    debra

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  • nbeck
    nbeck Member Posts: 39
    edited March 2015

    Very glad that the breast specialist isn't worried Debra!! Please do come back and let us know what the final diagnosis is, been thinking about you a lot, god bless!

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  • bride
    bride Member Posts: 382
    edited March 2015

    Happy to hear your good news.

    To answer your original question, my IBC appeared overnight. Hadn't been under any stress, gone through any lifestyle changes, or anything remotely unusual. After 15 months from DX, I'm NED.

    Wishing you the best,

    bride

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  • Debra_Dee
    Debra_Dee Member Posts: 7
    edited April 2015

    Hello Ladies

    I hope all is well with you all. I just wanted to provide you an update. I still do not yet have a full diagnosis.

    I have surgury scheduled for May 7. at this time the lumps (another smaller one was found) will be removed and the area cleaned to remove any possible infection. Tissue samples are going to be sent to the lab for testing. There is a concern with the nipple as the lump is primarily located right behind it which could complicate things. A good result...I will wake up with a few stiches....If complications arise the wound will be left open and packed with gauze....and "we go from there".

    I am not worried like i was 4 months ago but i will be relieved to finally have tissue samples to give me peace of mind.

    I often think about the women on this site and pray for many battles to be won.

    debra

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