IBC or fibrocystic

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Janet2007
Janet2007 Member Posts: 22
edited June 2014 in IBC (Inflammatory Breast Cancer)

I am 35,surgical menopause 1996 due to cervical cancer- ovaries removed 1999 due to endometriosis, I quit taking hormones in 2003. About 1 1/2 years ago I had a sudden pain in my right breast (carrying an empty coffee pot- put me on the floor), I went to the dr and they did a mam/us- everything normal. The pain continued as I reduced my caffeine, fat, sodium- I tried no bra, different bra, anti-inflammatory, heat, ice- nothing worked. They thought I had a pulled muscle, I took muscle relaxers- no help. At the time I was without insurance, so I did not force the issues. About six months ago I started having more pain, I went to the dr- mam/us showed fibrocystic had began but everything was normal. I followed up with my dr and they put me on ester-test, said hormone related ( I questioned that), no relief in sight! Two months after that I went back to the dr because I thought I felt something by my nipple, they put me on Danazol and said see a neurologist (the pain was in my head), when I called to make an appt. they laughed and said they do not see patients for breast pain. The morning after I started Danazol my whole right breast hurt so bad I woke up crying, the dr said that was not a side effect. At this time I found a new dr last month, she said was not related to hormones stop the meds (they should have never given me based on my history- I agreed). She also told me the something I felt was my duct glands enlarged, sent me for a ductogram based on ridge-like glands enlarged- the hospital refused the procedure because I had no discharge. Instead they did an us- said I showed fibrocystic which again is normal for my age? I asked then why me duct glands would be enlarged and they said it is a normal change for someone my age? I disagreed because my body is not at my age, they would not listen- never asked about my history. My follow-up is on the 24th of this month. About two weeks ago my breast started hurting worst and yesterday the pain seems to have spread to more of the breast. Over the past year my nipple has itched like crazy at one point it was so red and sore- but that went away. I do not have swelling or redness, but I do believe my breast has became a little bigger over the past few months. A few days ago I had purple veins pop up and the breast as a whole is itchy. My pain started before I felt the duct glands, most of the pain is in the area of the duct glands close to my nipple- as of yesterday it has spread from the normal area up to the collarbone. Sometimes I get shooting pains into my armpit area. I have done some research and it left me confused- everything I find says fibrocystic normally goes away after menopause, I have been there for several years- so why now do I have the pain? I admit I am a worrier, but I wonder if the drs know what they are doing and if not will they find out in time. I do not have the swollen red breast like I see on the Internet, had anyone else with IBC had these issues?

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  • Caseysmom
    Caseysmom Member Posts: 507
    edited July 2008

    Janet:

    I had none of your symptoms and my breast did not look like the pictures that I have seen with IBC.  My lump was on the outside of my breast it looked like dermatitis.

    You have a right to worry this is your body and no one knows it better than you.  Keep pushing the doctors for an answer.  You may even want to see a breast surgeon.

    Good luck with your appointment on the 24th and keep us posted.

    Hugs

    Laura 

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  • Janet2007
    Janet2007 Member Posts: 22
    edited July 2008

    My dr called late last night and said she wanted to see me this morning- I am keeping my fingers and toes crossed. Thanks for the response!!!

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited July 2008

    Janet, how did your appointment go?  I know I had a lot of itching that came and went along with stabbing pains.  Of course, I don't know for sure that this was definately related to the IBC that developed.  Please let us know how you are doing!

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  • Janet2007
    Janet2007 Member Posts: 22
    edited July 2008

    my dr said my pain was not good, although she did not think it was cancer- she is sending me to a breast surgeon. Apparently on top of my duct glands being enlarged I have a deep ridge in my breast, close to the enlarged duct glands. I asked her about fibrocystic breast and she said they can happen at any age ( although all the research on the internet said it was rare to happen in post- menopause).

    As the weekend went on my breast hurt even worst, I now have pain/tenderness all the way up to my collarbone and I have a touch of a red rash above my nipple, my armpit feels swollen but I can not tell by looking at it and I itch like crazy again.

    I am so scared, I know I should not worry- I just can't help it. I am a mother of two, with my youngest (12) having autism. I worry about his future and just want to be around forever. I told my husband I should be grounded from the Internet because I spend Sat. morning crying while I was doing more research and reading personal stories. He said at least you will be up to speed (ha-ha)

    I do not want the drs to ignore my issues until it is too late. There has to be an earlier way for them to detect IBC, waiting until the breast is swollen and red in so unacceptable!!!!

    What should I ask or expect from the surgeon?

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited July 2008

    janet

     I agree that waiting until breast is swollen and red is unacceptable.  Cam had pain and firmness in left breast for two and half years.  She had Breast MRI's averageing every 6 Mo. US every 9 Mo, and Mamms also every 9 Mo.   They told her were all normal results, what they saw was very dense breast tissue, diffussed enhancement, some granulation, and skin thickening.  They also saw axilary nodes enlargement (said benign, now know better) and a hypoecletic (sp) lession 1cm. This all fairly stable over the last 2 years.  Finally in Oct of 07, without telling us, someone suggested IBC as suspected, and ordered punch bx.  That was mis-read as fibrosis.  The redness, extreme swelling and rash all apeared in two week time in Jan.  First had treatment of  cortizone and antibo.  Had surgical core bx on Feb 6 08 and got dx of IBC.  Reread of Oct 07 bx got possitive for IBC and an appology from head of pathology.  By Feb 12, other breast turned red and swolle. Now has bilateral IBC.

    I remember Dr C's at MD Anderson's first comment when we went to him in mid-Feb. and he had reviewed her records.  "Your reports said one thing, your MRI's said something else.  

    I guess what I am saying is that IBC can be seen early, Just have someone who knows look at it.  Skin thickness and breast density compared to other breast were (or should have been) early indicators.  A punch biopsy is fairly simple outpatient procedure with only a local.   

    The good news with what happened with Cam. It gave detailed imaging like they had not had before of IBC developement to the IBC research clinic at MD Anderson.  Hope it will help.  

    Cam is going back for eighth treatment (every 3 wks). Weds.  This will be first time to go with skin mets gone, and breast back to normal size and almost normal color.  If storm Dolly says away from Houston.  

    Good luck Jane, We hope none of this ever applies to you. 

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  • Janet2007
    Janet2007 Member Posts: 22
    edited July 2008

    My breast surgeon appt. has been made for the 6th of Aug. I guess I have some time to collect my thoughts!! Still a little unsure of what to ask or tell?

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  • Margerie
    Margerie Member Posts: 526
    edited July 2008

    Forgive me, but that sounds way too long to wait for an appointment!!!!

    Try to be seen earlier- you are in pain and could have an infection or maybe IBC and waiting over 2 weeks in either circumstance is no good.Yell

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  • Janet2007
    Janet2007 Member Posts: 22
    edited July 2008

    Thanks, I called the dr and they said maybe next week, said there was no mass- so I didn't have to worry? They suggested I lay off the caffeine, I explained I had already done those things and nothing helped. So as I explained- At first they thought it was a muscle, then they thought it was because of caffeine,fat and sodium (which I never add salt to my diet- just what the food comes with already), then they said it was related to hormones (which I quit taking in 2002ish)and put me on Estertest for 3 months then on Danazol which made my breast hurt really bad the next morning, lastly the dr just said not hormone related- if I still have pain that can't be good- go see the surgeon. Now as the days go by I have a slight increase in breast size ( barely in my cup size) and a flat spot on the bottom of my breast. In a way it looks like it did when I was 20 but bigger (haha). So I will call Monday and see if they have time next week? Wish me luck

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  • Margerie
    Margerie Member Posts: 526
    edited July 2008

    Janet,

    How are you?  Did you see the breast surgeon yet??

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  • Janet2007
    Janet2007 Member Posts: 22
    edited July 2008

    Actually, I go in just a few hours- @3:30.

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited July 2008

    Wishing you the best of luck, Janet -- and hope we have the Board to ourselves when you come back...

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  • Janet2007
    Janet2007 Member Posts: 22
    edited July 2008

    Still pretty lost- the Dr. pushed until my ribcage was sore, now I need to have a chest x-ray? and go back in a month. They are not very concerned, I guess that is a good thing? It does not cure or fix my problem (does anyone even know what my problem is!)

    Sometimes I feel stupid for even worrying. I do not know if I should fight with Drs or trust they know what they are talking about. My Aunt has just been giving 3 months to live (breast cancer), it just makes me sad because she suspected she had it and did not go to the Dr until it was too late. A year later she is where she feared she would be, I do not want to be like her.I feel in my little gut that there is something wrong, or is there??? 

    You all here, have been good to me - not too many good people left in this world. Thanks, I will keep you updated if any news.

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  • lexi4
    lexi4 Member Posts: 1,074
    edited July 2008

    Hi Janet,

    I hope that you get some CLEAR answers very soon. I am sure that you are scared because your aunt is suffering from this beast. Please be persistent in you medical care.

    Gentle Hugs,

    Lexi

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited July 2008

    Janet-

    I remember having those same feelings- feeling stupid for making a big deal out of something that several doctors kept telling me was nothing.  I was told to stop drinking caffeine also.  I am so sorry that you haven't received answers.  I am grateful that I continued to push, even though my concerns were not taken seriously.  I wish you luck on your x-ray.  

    Have you asked for a biopsy?  Or maybe a breast MRI?  

    I hope you get some answers, and that it isn't cancer.  But you have to trust your feelings.  

    Good luck!!!!! 

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  • Janet2007
    Janet2007 Member Posts: 22
    edited July 2008

    Now that I have slept, I am so mad at myself. Tuesday night I was trying to show my husband a trick I had taught one of our cats, Bonkers= almost 20 pounds, we saved the young scared one from a fox a yr ago, still adjusting to house cat!... anyway the trick was to stretch out on me, he takes up my whole body- he stepped next to my breast as he was getting off. Ouch it hurt. Yesterday at the Dr, he is pushing around on the area- ouch it hurt- he pressed harder! I tell him, that the pain I feel in my breast is not that area- My cat stepped on me - he said well if a cat stepped on you there last night it should not still be sore- I said but he is a BIG cat- the Dr laughed!

    Now I have to get a chest xray? That was not even my original pain, he did find the area of the "enlarged duct" he said a lump- probably a cyst. Told me to take Vitamin E. The size of the breast he noted was larger- said many people have different sized/shaped breast- I told him this change has happened over a matter of weeks - He did not feel very concerned. I had told him my history with shingles (2000 and a few months ago), he suggested shingles causing breast pain, I disagreed- pain started long before last outbreak and on left side both times. I asked him about a spot that has came up in the last week or two, it is the size of a quarter and it is dry looking skin on the side of my breast. When you look at it- the color is a little off and to feel it, leather-like, not like soft skin- once again he was not that concerned. I Should have gone to school to be a DR.

    I will go have xray Friday- Yesterday ended Jason Autism/ social skills class. I do not have to leave the house!!!  Will let you know when I here something- I have prayers out for all of you.

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  • Janet2007
    Janet2007 Member Posts: 22
    edited September 2008

    Well still waiting, I now have an appt. with the Mayo Clinic. When I went for my follow-up, the chest xray came back ok. The rib pain was mostly gone- I reminded the Dr. that my cat had stepped on me. He said see you back in 4 months? I asked about the pain/lumps and slightly enlarged breast, he said take OTC pain meds if needed.

     I feel the Dr. just blew me off, and need I remind everyone they CHARGE for this type of care...

    I try to do research everyday, I learned Danazol should not be given to women who may have breast cancer( causes pain and growth), maybe that is why my breast hurt so bad when I took the meds??? I also learned it is unlikely to have fibrocystic occur well after menopause if not taking HRT???

    The Drs. think I have fibrocystic breast, but on the same hand they say I am in menopause- the pain/lumps I feel is not related to hormones.

    Since I last posted I feel pain in more of my breast, my nipple is getting more red and my breast size slowly gets bigger and I feel more changes in my breast too. I am so lost and feel if it is something bad they will not find it in time.

    BTW: My aunt died days after my last post, my thoughts be with her family!!!!

    Does anyone have input on fibrocystic breast after menopause?

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  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 541
    edited September 2008

    Your symptoms are definitely concerning.  I was only 28 when I was diganosed, so I don't have any answers about breast changes after menopause.  How are you doing?  Anymore follow-up with the Dr?  Any answers yet?  Just wanted to know I was thinking of you!!!

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  • Janet2007
    Janet2007 Member Posts: 22
    edited October 2008

    I have new symptoms, should I worry now? My under arm is sore (like having flu-skin), swollen a tad-bit and more of my breast hurts. The breast is getting fuller and I think a new lump in the thickening part. Over the past four days I have not been able to sleep on my tummy, due to pain.

    Also my hot flashes have become VERY intense, they last for mins and I literally become wet. I have sweat drip from my head and face and change my shirts often. In the morning my sheets are wet not damp. I have had hot flashes before, but never to this extreme.

    My Mayo appt is next Monday, I am taking my films and reports tomorrow.

    During the day I have been using a heating pad, it doesn't help with the pain, but it feels good!!! I have no energy to do anything, I get dizzy and light-headed.

    My kids think I am lazy, I say- no just tired!

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  • jessie2010
    jessie2010 Member Posts: 1
    edited December 2009

    Janet--it's been over a year since your post--how are you doing?

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  • Janet2007
    Janet2007 Member Posts: 22
    edited December 2009

    Well not alot has changed. I still have the lumps/bumps(they have grown) right around my nipple area- they are very sore. Test after test never shows what we feel? They have come to the conclusion that my pain is not related to my breast.

    Although I was told at the beginning of the year I had 2 cases of lyme disease. Once treatment started some of the pain went away. I still get this sensation in my arm and armpit, the areas swell, get red and puffy and feel like I have flu skin. We have tried different meds. but nothing ever works. I have learned to live with the problems. I always keep in the back of my mind, later in life they WILL find the problem.

    It brings me down to know I am 36 and I will always have this pain.Cry

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