pain/symptoms are worse,waiting for mri to rule out IBC

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Grtchibl
Grtchibl Member Posts: 10
edited November 2015 in Waiting for Test Results

Hello all,

I would like to first off thank anyone who can and will take the time to respond to my concerns and need for advice. I would also like to say that in my process of the last few weeks of trying to figure out what is going on with my breast I was one of the unknowns who had never heard of IBC and am shocked by the lack of information and knowledge out there for this diseases. I pray that I do not have IBC and that the answer i get is much more benign in nature, but the stories of you women have affected and touched my heart. I will now be an advocate of knowledge of this for all of you and the ones who do have it and don't know.

So my story as short and quickly as possible. 15 days ago it all started like this

day one) sharp shooting pain in my right breast very intense and severe but went away day 2) same pain went away then 2 hours later my entire breast just began to hurt, felt like mastitis and all I can describe it as is effing pain. this pain has been constant since the

#3-5) pain continues go to minor emergency convinced its mastitis, they say it is give me abx and I start immediately. day 8) see obgyn he says its not mastitis and refers me to a breast specialist ( he does not say what he thinks it is. the pain continues.

*** back story i have been having bilateral nipple discharge for 1 year that none of my drs have found an answer to, but i do have a thyroid goiter w multiple cysts and nodules, also hysterectomy 2 years ago and rectocele repair and mammo and US in may for nipple dc and both were normal ***

day 9) see BS she says its not mastitis either, she notices the size difference in the two and the density difference in the two as well. and doesn't think the abx will help but to finish, she orders a US and MRI of my right breast.

day 11) have breast US, they find nothing but abnormal appearing lymph node ( personally i can feel swollen or maybe what many would consider shotty lypmnodes in multiple parts of my body but this has been going on for months and i feel its because my body is not very regular these days) Dr calls and says do the MRI. breast center emails and says that although my US was normal to follow up with BS for clinical evaluation and further testing.

Now i have scheduled my MRI for tuesday, in the mean time in the last week my right breast is a full cup size larger than my left ( really noticeable day after us and has stayed that way), i have had pink mark on right half of the breast that comes and goes, my nipple flattens/smooshes when in a bra ( my left does not) and now it itches and i have noticed hair sticking out on almost my entire breast. its odd to describe but its like little short hairs sticking straign out and each hair looks like it has a bulb at the bottom. So I don't really know what this is.

i guess I'm just rambling a little bit but Im wondering if the MRI will be able to definitively lead towards a diagnosis whether ibc maybe and abcess celluslits or some other random thing ?

has anyone else ever had symptoms like this and it lead to a diagnosis that was not one of the above ( the usual) ?

any experience on the hair ? and and one found anything to help with breast pain that was undiagnosed ( all the usual are not helping. )

thank you for your time in reading this and replying, I am praying for you ladies and hoping that i can get help from the experts and others who have dealt w similar issues.

Love and Peace,

confused and nervous mom in florida

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  • Mamiya
    Mamiya Member Posts: 432
    edited November 2015

    Grtchibl, an MRI will definitely give your doctor more information and is a very good tool for evaluating IBC possibility. I would think at some point a biopsy would also be something they would want to do. The rule with IBC is that if there is any suspicion you have to assume it is until you can prove it isn't, so I am glad they are doing that and not just sending you away as often happens (especially to very young women). I don't know what to tell you on the hair question, that isn't anything I've heard of or experienced. The other symptoms you describe are definitely suspicious and you absolutely need to get that MRI and see what the breast surgeon thinks. Hopefully that will rule out IBC and you can get on with your life, but until you do that (rule it OUT) keep pressing for answers. There are plenty of people here who will be happy to share information with you, this is a good place to talk, vent and ask questions. Please let us know what the doctor says on Tuesday. Wishing you all the best.

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  • Grtchibl
    Grtchibl Member Posts: 10
    edited November 2015

    notdoneyet,

    thank you SO MUCH for taking the time to read my post and respond. I am sorry that you are one of the ones in the "know" I will place you in my prayers. you guidance has helped to reassure me that the MRI will help to find an answer, I have seen so much information regarding biopsy vein the only way to go. I personally have not felt like i have IBC and have not been google diagnosing myself, but I would be remiss to say that as the time goes by and the symptoms not only don't improve but continue to mount I am more concerned. But right now my main focus is an answer because the pain in quite intense and and have not found anything to provide significant pain reduction other than hot baths, but i can't spend all day in there.

    (ps i am a 36 year old married mother of 4 so not super young but not typical bc age)

    Yes I am very fortunate on the doctor front,but it does concern me a little about my gyn referring me to a specialist so quick. i have been with him for 10 years and twice prior i had situations ( serious but to life threatening) in which he immediately sent me to another specialist, both other times he would not tell me anything, only to say dr so and so will evaluate. the first was a subchorionic hematoma during pregnancy w referral and all he said was it could be a lot of things ( i already highly suspected what it was) and the other time was a rectocele and cystocele and all he would say was it looks like you need to see a surgeon who will evaluate you further and explain your options ( this time he back handedly confirmed the diagnosis but would not elaborate) so tihs time when he said its not mastitis see a BS for evaluation i didn't really think twice about it until my DH pointed out that this was what he had done in the past when he knew i had issue. and then it did dawn on me that he was so adamant during the appointment that i never have hormone therapy every due to risk factors for blood clots, i also didn't think twice about that but am now wondering hmmmm did that mean something more So it has brought a little anxiety about what if. the BS has been very nice and proactive but i unfortunately do not know how much actual experience she has w IBC, time will tell. I am not going to try to stress to much because I know that it is not worth it right now wondering about what ifs. I am just praying for an answer and will take that what ever it is, when it comes.

    i will post an update when i get more answers. hoping that someone else maybe has ideas about pains mgmt or the chicken feather hair. :)

    I dont really know the best way to say this or if there is a genuine way, but how are you feeling an how are you doing with your treatment ?

    thanks,

    confused fl mom

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  • Mamiya
    Mamiya Member Posts: 432
    edited November 2015

    Depending on where you live there may be a larger hospital that does have doctors who specialize in breast issues and, if needed, would be familiar with IBC. Again, we don't want to google diagnose you, only the doctor can diagnose, so let's not jump to conclusions. IBC is pretty rare, 1-4% of all diagnosed breast cancers, and lots of things can mimic it and be nothing.

    I am on my second type of chemo (FEC) and I am doing ok. The first chemo was much easier than this one and I had quite a good response to that so things are looking good for me as of now. The thing about this is you just have to go through with it and you kind of don't know how effective anything is until after it's done, which can be frustrating. The thing I like about neoadjuvant chemotherapy is that you can measure your response to the various treatments (I had another MRI when I finished the first one and will have another before surgery).

    Honestly, I have my good days and my bad days, but don't we all? I took xanax at first because I was having actual panic attacks, but I don't need that anymore. The chemo causes basically menopause (which may or may not be permanent) so I was having a lot of hot flashes so now I am taking effexor, which addresses some of the anxiety as well as really almost eliminated hot flashes.

    -Julie


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  • Grtchibl
    Grtchibl Member Posts: 10
    edited November 2015

    julie,

    im glad to hear that you had good response to the first cycle. hopefully if this cycle is making you feel worse can that mean its doing more work ? how long till surgery ? i did look at some of your other posts and saw that you have a 15 y/0 daughter, one of mines is exactly the same as well. how are the two of you doing during this time ? these teen years can be tough without trying times added to them. I hope that she see what a strong person her mama is and how much she loves her :)

    again i really appreciate you taking your time during a time in your life when you are entitled to be completely selfish to answer my questions.

    just one more out of curiosity how much area does the MRI cover ? ( will is just get breasts or up to neck or armpits etc ??)

    Bri


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  • Mamiya
    Mamiya Member Posts: 432
    edited November 2015

    Bri,

    I really don't think the side effects indicate effectiveness, oh how I wish that would be true though!

    My daughter and I are good, one of my main concerns is keeping her life as normal as possible. For example, I haven't been attending her swim meets (a hot humid closed in space with too many people with germs close together - not a great place to be with a depressed immune system) but have made sure that her dad and maybe grandma if possible do go, and they keep me up to date with text messages and I can text her "good job" or whatever so it's almost like I am there.

    The MRIs I have had were both breasts. To look at the lymph nodes in the area they might use ultra sound.

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  • Grtchibl
    Grtchibl Member Posts: 10
    edited November 2015

    Oh mine is a swimmer also I can totally understand what would be dangerous about the meets. but that is great that you can get videos and texts to keep up with them. Glad to hear that all is good with you and her, they are wonderful pains in our butts.

    little disappointed to here that maybe they wont's see they axillary lymph nodes because i was hoping that they would pick up the ones that i have felt since the us was done on tuesday. what ever is going on with my body is whacky. I'm very surprised that things just continue to pop up. so weird.

    so did our mri show your ibc ? if you don't mind me asking.

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  • Mamiya
    Mamiya Member Posts: 432
    edited November 2015

    Yes, MRI clearly shows what is going on.

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  • Grtchibl
    Grtchibl Member Posts: 10
    edited November 2015

    awesome !!!!!

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  • rnyoung85
    rnyoung85 Member Posts: 17
    edited November 2015

    Grtchibl, did you ever get your results back? I, too, have weird little blonde hairs all over my breasts as you were describing as well as accompanying symptoms... I

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