Feel like I am Crazy!!!!

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bizbeth
bizbeth Member Posts: 11
edited June 2014 in IBC (Inflammatory Breast Cancer)

I finished with Radiation for IDC left breast in March 2012.  In end of May 2012 I developed a rash that started in the middle of my chest that has spread across my left breast, but does not cross the radiation field.  The rash started like a bite, very itchy and blistering.  And the blisters break open and crust over.  There is a thickening under the left side of my breast.  My left breast is twice the size of my non cancer right breast. And is an orange color.  The rash has made my skin like red leather that feels like a crusty orange peel.  I went to my radiation oncology nurse in July and they had me put a anti fungal cream on for a few weeks.  It didnt help. I went to my oncologist, who is also my husbands oncologist as he has Non Hodgkins Lyphoma he is being treated for.  He right away said I needed a punch biopsy.  I went to an dermatologist and she did a punch in the middle of my chest, not on my breast tissue.  It came back as a cyst.  My husband immediatley said, so she had 150 cyst on her breast?  the dermotologist got very nervous and went and called the lab.  Then she came back in and said she needed to do another biopsy, and this time took it closer towards my breast tissue.  It also came back negative, showing as a cyst. Saw a different dermotologist, who put me on a two weeks of antibiotics and some kind of cream to put on only at night.  It has not changed anything and I see him this Thursday 8/16/12.  Any body else out there experience this?  And has anyone had further biopsies to take more or larger sample of the breast as a biopsy.  The last dermotologist said if it is not cleared up by my follow up he will get together with my oncologist.  I do have a follow up with my oncologist on 9/5/12.  He said just to make sure the "rash" clears up.  I feel like none of these doctors listen to my symtoms and they all look at me like I am crazy.......

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  • chester2010
    chester2010 Member Posts: 101
    edited August 2012

    Hi Bizbeth:  For your peace of mind I think you should try to see a Dr. who is familiar with IBC.  There are many reasons for rashes but you need an expert to make sure.  Sometimes the needle biopsy does miss the area involved.  I think you should be persistent. Good luck and keep in touch, we will try to help when we can.'

    Kathy

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  • bizbeth
    bizbeth Member Posts: 11
    edited August 2012

    Thanks for your post Chester2010...I went to my follow up with the dermotologist, a different doctor. And she said I have inflammation of my hair follicles all over my breast. Which is completely different from what the last dermotologist said I had Cysts.  This other dermotologist  wants one more week of the antibiotics and she gave me a different cream used for impantago (sic). If it is not better by next week 8/23/12, she want to give me cortizone shots is each "lesion" . Uhhhh,  NOOOO!!  Way!!!   The longer I have this, and I have had it since May, with no real changes, and with the thickening and swelling of the breast, and my arm pit area is very tender to the point I cannot reach over my head.....I will have to contact my breast surgeon.   But I dont want to overstep my oncologist, who I will see on 9/5/12.  I am so frustrated as my husband is taking all my time with his cancer right now.  so I feel very conflicted.  Or maybe I am just paranoid.  I just dont have a good gut feeling about the dermotologist and their diagnosis.  They completely ignore my other symptoms.  But once again, I thank you so much to hear from someone.  I just dont know how to find someone in my area that is familier with IBC, but will start with my breast surgeon.  Thanks again!!!

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  • bizbeth
    bizbeth Member Posts: 11
    edited August 2012

    I went today to see my BS, and she looked concerned but order diagnostic untrasound nad dianostic mamo, I will be going tomorrow morning at 9:30....She said the next step would be an MRI, she actually took the time to have me lay down and really examined my breast.  She did tell the she doesnt think its IBC, but want to do these tests to rule it completely out. She was concerned that I have had this same rash since May 2012.  And it started 3 mos after my radiation ended in Feb 2012.  I feel a little better that someone is actually taking me serious and just not fluffing me off as crazy.  At lease she it taking an interest.  She said there are different biopies that can be done outside of the punch biopsies.  She agreed, diagnosis can be difficult.  She even asked has anyone ordered a mamo or u/s.....?????....I said no, I asked and I was ignored when I asked.  Will keep you all posted with my results.  Take care everyone, and thank you for your reply.  They really help.

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  • chester2010
    chester2010 Member Posts: 101
    edited August 2012

    KathyBizbeth:  I'm glad to hear that someone is listening to you and you are to get more testing done.  Good luck with the tests and let us know how you get on.

    Kathy

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  • bizbeth
    bizbeth Member Posts: 11
    edited August 2012

    Thank you Chester2010....when you called me KathyBizbeth, it really threw me for a loop.  My sister who died of breast cancer nicknamed me Bizbeth, and her name was Kathy.....very strange.  Anyway, I went for diagnositc mamo and u/s.....Radiologist said I have him scratching his head for the 1st time in 30 years.  He said he has no idea what is going on with my breast.  He said there is significant thickening of the skin.  He is reporting back to my b/s today he said.  He thinks I need to really push for a more significant biopsy that the  skin punch. and I should  insist upon an MRI.  He said IBS is very difficult to diagnose and he is seems very concerned and perplexed about what my breast looks like and for so long, I have had this rash since May 2012. Then he really scared me and said you know new cancers are popping up all the time, and I may be  a first.  These are his words.  I have been sort of freaked out today...My poor dear husband who is going thru chemo right now is being so supportive saying we will get to the bottom of this together.  I so appeciate your reply....Take care, and I will let you all know what b/s wants to do next.   Bizbeth

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  • ridergirl
    ridergirl Member Posts: 443
    edited August 2012

    Bizbeth so glad someone is taking you seriously and wants to find you some answers. As far as being a first its probably not the best thing to hear, but i guess one positive is that you will for sure keep getting the attention you need until they can get you sorted out. Best wishes and much luck as you go forward. We are always here to listen, to talk, and to hug you if you need it

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  • chester2010
    chester2010 Member Posts: 101
    edited August 2012

    Hi Bizbeth:  I noticed after I had sent 'submit' that I had my name at the beginning and the end.  Sorry to throw you for a loop and so sad to hear that you lost your sister to breast cancer.  It is a bummer.  I am glad to hear that the doctors are finally listening to you and taking your symptoms seriously.  You should make sure you get an MRI and further biopsies.

     I'm sorry to hear that your husband is battling cancer also but it's great that he is being supportive and strong for you too.

     Best of luck. Thinking of you and keep in touch, we will  help when we can.

     Kathy, Toronto

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