does this look like ibc?

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amyleigh1981
amyleigh1981 Member Posts: 12
edited June 2014 in IBC (Inflammatory Breast Cancer)

 I am reposting this from another board to see if I can have more input. I called my surgeon this morning and am getting in this afternoon. I had a malignant dermatofibrosarcoma removed under my collor bone 3 years ago so she said to get this cheked out! Thank goodness!

Hello ladies! Long story short I woke up Sunday morning to rash on my right breast. With in hours it was burning and had shooting pains. I went to urgent care and had 2 doctors look at it. They incouraged me to get an ultrasound to rule out inflamatory breast cancer. They gave me antibiotics in case it is an infection. I got an appointment the next day (yesterday) and the ultrasound did not show anything in breast but the lymph node in my armpit was swollen. Doctor said it is mastitis and said to follow up after I'm done with antibiotics(10 days) to make sure lymph node has gone down.  I have drove myself crazy researching both mastitis and IBC. I have read a lot of mis-diagnosing with these! I am 32 years old and have 2 children 11 and 7 years old. Obviosly I am not breast-feeding,but the doctor said you can still get mastitis?! 3 days now on antibiotics and its not looking any better and very painful. Any input would be so much appreciated! Picture was taken today.  Thanks! 5/14/13

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  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    You can get mastitis at any time......and antibiotics will take a bit longer to make a difference.......good luck

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    It looks like what mine looked like. I think you should have seen a reduction in redness after 3 days of antibiotics. I would suggest seeking out a Breast specialist or Breast Surgeon ( a surgeon who specializes in breast issues ). A skin biopsy only takes a few minutes and will tell for sure.

    IBC grows in 'sheets' and will not always present on mammograms/ultrasounds. You need a skin biopsy.

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  • bluepearl
    bluepearl Member Posts: 961
    edited May 2013

    Yes it does and I wouldn't wait around for any antibiotic to take hold....get the biopsy done! IBC spreads FAST. I am hoping with all my heart it's an infection but one cannot be too careful these days with such happenings going on with our breasts.

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  • amyleigh1981
    amyleigh1981 Member Posts: 12
    edited May 2013

    Thanks ladies for responding. Still praying its an infection! My surgeon is doing a biopsy Monday to rule out IBC. She says she has never seen an IBC rash peel and flake like my rash is doing so she gave me stronger antibiotics in case and hopefully Monday I will not need a biopsy:) I'm still getting one regardless! She is a breast surgeon so I hope she knows what she's doing! I know my gut feeling is its not mastitis, I had it when I was nursing and remember how it felt. Still hoping for a better outcome, but I know the earlier diagnosed the better! Thanks again, especially thanks for reassuring me I'm not crazy!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    Even if it is IBC, don't despair. I am a 9 year survivor of triple neg IBC. I think the earlier it is caught and treated the better the survival chances. I'm glad they are doing a biopsy. I'm hoping its an infection and the stronger antibiotics kick its butt. Please let us know.

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  • amyleigh1981
    amyleigh1981 Member Posts: 12
    edited May 2013

    Thanks for the well wishes! My rash has lightened up a little and not as bright red. The parts that has peeled/flake off actually looks like a new rash with red spots?! If that makes sense? Still quite tender and have the stabbing pains, but the swelling has gone down a bit. My anxiety has been back and forth and I know it doesn't do me any good to worry,but easier said than done. I will be back regardless to share the hopefully good results:)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    If you are seeing improvement with the antibiotics then you don't have IBC. IBC would not improve. :)

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  • amyleigh1981
    amyleigh1981 Member Posts: 12
    edited May 2013

    That makes me feel better! I have read that antibiotics could improve symptoms temporarily but come back when antibiotics are done. I'm just going to go on what you have said, thanks:)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    I'm not a doctor or medical professional. Any advice you get from this board should be taken as non professional advice or suggestions.

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  • amyleigh1981
    amyleigh1981 Member Posts: 12
    edited May 2013

    I'm still following up with my surgeon Monday. The rash is still very much there and still painful. I'm a very optimistic person and definitely thankful for your comments:)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    Even if its not IBC and an infection, I would still want to know what caused it. A biopsy would still be a good idea just to get that assurance and peace of mind.

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  • Claudia413
    Claudia413 Member Posts: 114
    edited May 2013

    I was diagnosed with IBC in 2007. After having chemo (which comes first), a right MRM and 33 rads, I have been NED (no evidence of disease or no expiration date) since the summer of 2008. My doctor made me take three 10-day rounds of antibiotics to try to get rid of my "mastitis". I kept asking for a biopsy to prove whether I had IBC or not. Finally, after talking my doctor into getting a "diagnostic" mammo and "diagnostic" ultrasound, those reports stated I may have IBC and should have a biopsy. A "diagnostic" mammo or ultrasound specifically looks for the sheeting or nesting of the IBC tumors, not a solid lump. My surgeon wanted to prove to me that I did not have IBC, so he did 3 biopsies. These biopsies proved that I did have IBC. I started chemo soon after that...chemo is done first, prior to any surgery. 

    I think one of the most important things is to see an IBC specialist. They know that IBC is highly aggressive and can be deadly if not treated promptly and correctly. There are IBC clinics in different US cities (Houston, Philadelphia, Boston and others).

    When I returned calls that came in to the Inflammatory Breast Cancer Foundation (2009-2013), I always told the women calling "when in doubt, rule it out" (meaning rule out IBC first because it's so aggressive).

    Another imortant thing is to remember that you do not have to have all the symptoms to have IBC. Many of the women in the support groups I'm in, both online and in Facebook, have had only one or two symptoms; some have had almost all of them. In my case, I only had a red blotchiness (rash) on one breast. You can see a lot of information on IBC on the Inflammatory Breast Cancer Foundation website, www.eraseIBC.com.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    That is so ridiculous what you had to go through. That doctor should have a complaint filed on him. It only takes such a short time to do a biopsy to rule it in or out. What an arrogant arse.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    No matter what make sure you get that biopsy!

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  • amyleigh1981
    amyleigh1981 Member Posts: 12
    edited May 2013

    Well my appointment was at 10am yesterday and I didn't leave the medical center until 4! My doc said she felt "thickening" she didn't feel last week and also a lump. She ordered a mammogram. The radiologist saw something on edge of mammo so I had to do it again to get more of an image. As a result of the mammo they wanted to do another ultrasound. They said that they saw what they believe is a benign mass?! Follow up in 6 months to make sure it hasn't grown. My surgeon did a punch biopsy on the rash to 100% rule out ibc. I should have results by Friday. Very stressful day, but feeling a little relieved at the same time. I love how my surgeon is doing everything to figure out what's going on!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    So glad they did the punch biopsy. I truly don't understand the reluctance of some doctors to do this one thing to rule out IBC.

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  • amyleigh1981
    amyleigh1981 Member Posts: 12
    edited May 2013

    My biopsy came back benign! Thank all you so much for all your kind words and comfort! I'm still following up with my obgyn soon. I will continue to keep all you ladies in my prayers!

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  • SarahRoss
    SarahRoss Member Posts: 19
    edited September 2013

    Did your red blotchiness come and go? I've been getting round slightly red spots on my breast but then they go away after a few days. Them another will show up. By the time I went to see my doctor there was nothing to show her.

    It's driving me crazy, I'm waiting to get in to see a breast specialist. I feel like I'm overreacting since they come and go but with a disease so deadly, I can't push it out of my mind.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited September 2013

    Sarah, I think you need a dermatologist rather than a breast specialist.

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2013

    Sarah, I appreciate that you are, as you said in another post, "obsessed with getting cancer and dying", because of your parents' history of cancer.  But please don't be so blinded by that that you don't pursue other possibilities that may solve what is likely a very simple and non-threatening health issue.  

    In the past 2 weeks you've posted about a number of different breast symptoms; none seem to be particularly indicative of IBC and each symptom has lessened or gone away on it's own - which would most certainly not happen with IBC.

    With all your symptoms, it does sound like something is going on.  If you want this resolved, rather than fixating on IBC and waiting to get in to see a breast specialist, you should start with the most obvious and likely possibilities - from what you've described, it appears most likely that you have an infection and/or rash. So why not start with a dermatologist, as MelissaDallas suggested? 

    I don't mean to be harsh, but in reading your posts it's clear that you need a bit of a push to get headed into a different direction.  You can obsess about this being IBC, or you can be open-minded to other things this might be and try to get this resolved.

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  • lekker
    lekker Member Posts: 594
    edited September 2013

    Sarah - I suggested in another thread that you speak to a genetic counselor about getting tested for your mom's BRCA2 mutation. The test isn't expensive when you're just looking for one known mutation and it should be covered by insurance anyway. If it's not covered, Myriad (and maybe other companies since Myriad's patent was invalidated by the Supreme Court) might have financial assistance available. I'm not trying to push you into testing, and I understand your fears about testing positive, but I feel like you already feel like breast cancer is inevitable - maybe if you tested negative, it would bring you some peace? And if you tested positive, at least the doctors would take your concerns more seriously in spite of your age. If you tested positive, you would most likely qualify for more intensive screening if you declined prophylactic surgery, which I think might also make you feel better. To be blunt, you either have your mom's mutation or you don't - testing doesn't change it either way. Knowledge is power and BRCA is one of the few well-understood genetic factors in cancer. I know this is an extremely personal issue and I'm very biased (I chose to test for every possible genetic cause of my two cancers) and I know that you may feel differently and that is your right. I also know that you're worried enough about it to keep posting on this board. If you were to test positive, there is a thread here for BRCA+ women where you could get lots of support as you make your surveillance/surgical decisions going forward. There's also the FORCE website that has lots of great information. I wish you the best as you make your decisions and I'm sorry that you even have to think about all of this at such a young age.

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  • SarahRoss
    SarahRoss Member Posts: 19
    edited September 2013

    Thank you all for your support and advice, many of these things I know but sometimes you have to hear it. As I've said in a previous post, in my current mental state I'm not ready for genetic testing. As for seeing a dermatologist, my insurance is awful and I figured my money is best spent on the specialist and then I can go from that. I need to be followed by one due to my family history anyway. It's so odd, as a social worker I should be able to utilize the skills I teach my clients when it comes to obsessions. Maybe that's why I'm going back to school to be a pharmacist :) Thank you all again. I really appreciate your continued support and I will try my best in the meantime not to look for things that are not there (easier said than done when you're me!). You are all warriors and I need to adopt your strong, logical, positive attitudes. I'll keep you updated when I see the specialist and hopefully nothing weird pops up in the meantime. 

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