I think I have IBC, Please Help

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suzy2618
suzy2618 Member Posts: 49

Please someone help me. I am so anxious, I can't eat or sleep. 3 weeks ago I woke up with a swollen breast and redness that covered almost half of my right breast. I had horrible pain and it felt extremely warm. I went to the ER right away and they did an u/s and blood work and just diagnosed me with mastitis. WBC was high. They sent me home on two antibiotics and an antibiotic cream. I am 31 years old, my daughters are 9 and 5 year old so I am Not breastfeeding. Symptoms didn't get better so 3 days later I go see my OB and he sent me for another ultrasound at a diagnostic center because the one at the ER was basic. I go for the u/s and everything normal, the radiologist laughed at me and said you don't have IBC I am 100%. I begged him for an MRI or a Biopsy and he said no. So The next day I go to the hospital and requested to get admitted. They admitted me and had me 24 hrs there with IV antibiotics. At this point WBC was normal but CRP high, the next day CRP was re checked and went to normal.Redness went away. I go back to my OB because it was still swollen, he sent me to a breast specialist. I went to the specialist and she squeezed my nipple and a bit of water blood came out (very small amount) she sent if for cytology and said maybe they won't be able to see anything because it was such a small amount. She sends me for a mammogram and MRI she said her suspicion of IBC was very low but the def something was going on with my breast. SO a week after i go to my appt and the appt was cancelled without letting me know because the Radiologist thought it wasn't a good idea to do an MRI when I still have inflammation which can lead to a false positive and uneccessary biopsy. I cried my eyes out to the dr, i begged her to please do the mri and she completely refused. She said the citology came back negative. SHe agreen on the mammogram so I had it done but results were normal. SHe said she would do an mri in 4-6 weeks! TO call the first day of my period! So now i have to wait and i am desperate. The redness is gone, breast isnt as swollen but I get this random sharp/stabbing pain. Also my areola puckers like if I Was cold when i raise my right arm and the nipple flattens a bit. WHen my arm is down it goes away and my nipple goes back to normal. I honestly think I have inflammatory breast cancer. I don't know what else to do for the doctor to do an mri. WHEn I asked her to do a biopsy she said a biopsy of what there is nothing to do a biopsy from. DId anyone have similar symptoms as me? please help me . I do have a small tiny bruise looking spot it has not gotten darker or bigger.

Comments

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    It must be scary to be dealing with this and not getting firm answers. From what I know IBC, your breast would not get less red from antibiotics (is it did). And it would be progressing rapidly if it were IBC. I think it must be something else and I hope you get to the bottom of it soon.

  • suzy2618
    suzy2618 Member Posts: 49
    edited March 2019

    I have lost 8 lbs already, I can't eat, I can't sleep. If it is IBC I would want to know to start treatment right away. I am so scared that I will die and leave my girls. I cry every single day, I can't concentrate at work. I am a nurse and I had never heard of IBC before. I just want a doctor to listen to my concerns, it's like not even doctors know much about IBC. I am in Miami, Florida so it's a big city

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    It is very very unlikely to be IBC.. try not to get beyond the situation you are in. You are not hearing me so I will repeat. With IBC the redness does not back off. It gets horribly rapidly worse. This is not happening. You certainly have something but it is VERY UNLIKELY to be IBC, based on your description.

    It sounds no fun, and it sounds upsetting and uncomfortable, so obv you ant to figure it out. To put your mind to rest you can get a punch biopsy at dermatologist -- which is how IBC is diagnosed.

    Meanwhile, to me it sounds more likely to be an infection of some kind because antibiotics made it back off and get less inflamed.

    Again, IBC does not behave as you are describing. It gets worse like a runaway train.

  • suzy2618
    suzy2618 Member Posts: 49
    edited March 2019

    I found some posts here where the redness did get better and they ended up having IBC, also a girl wrote on Instagram that the redness for her did go away. I am so afraid, I truly hope you are right and that this isn't IBC. I Will make an appt with a dermatologist and see if they can do a biopsy. Can it be done just like a shaved skin biopsy or has to be a punch biopsy

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    I believe it has to be a punch biopsy. That's a good idea, to rule it out.

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    suzy2618, we hope you can get to a dermatologist, or someone who can help to evaluate. Try, in the mean time, to breath, and not get too worked up. One step at a time.


    The Mods

  • suzy2618
    suzy2618 Member Posts: 49
    edited March 2019

    Will call tomorrow AM a dermatologist. Hoping they will agree to do a punch biopsy. My breast specialist completely refused a biopsy and the mri she is making me wait 4-6 weeks. This has me so anxious I can't even enjoy my girls or cook or clean. I can't concentrate at work. I cry and cry because I feel helpless. I just want answers, I know my body and i know something is not right with my breast. Thank you for the reply.

  • JanWeb
    JanWeb Member Posts: 11
    edited May 2019

    hey, did you ever get your biopsy? Was it good news

  • LoriCA
    LoriCA Member Posts: 923
    edited May 2019

    I'm not sure she'll be back to answer you JanWeb. She had multiple biopsies, first skin punch then MRI-guided core, and all came back benign.

  • suzy2618
    suzy2618 Member Posts: 49
    edited May 2019

    Hi JanWeb. The biopsy was benign, apparently it was a bad case of mastitis. This forum helped me so much, I will continue to log in and hopefully will be able to help anyone who is going through a tough time.

  • Ninagflo
    Ninagflo Member Posts: 3
    edited May 2019

    I’m so glad it was benign. I’m like you right now worried sick I can’t eat. I have had a slightly red spot on breast no change in 2 weeks. However lots of pain. I can’t stop crying because I’m so scared. I see a breast specialist on Tuesday.

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