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HELP! Discharge and Flaky/Crusted Right Nipple for 1.5 Years

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heyy_dayy
heyy_dayy Member Posts: 3
edited February 2022 in Not Diagnosed But Worried

Hi, everyone!

I am new here and am in need of advice and thought this would be a great place because I have been so encouraged to see active responses.

So here is my story: I am currently 24 years old and about a year and a half ago (I was 23), I noticed one day that my right nipple stuck to my bra while I was changing. I noticed some clearish/white discharge on my bra and thought it was odd. I continued to monitor it and the discharge kept happening everyday for two weeks. I assumed it was an allergic reaction, so I decided to switch my laundry detergent and buy some new bras. I have fairly sensitive skin and don't really use any scented lotions or soaps. Still no relief. I also noticed that my nipple was starting to get flaky and the top layer of skin would peel off.

About a month after I first noticed the discharge, I went to my doctor and he suggested that it might be an infection. He gave me a shot of Rocephin antibiotics and also gave me some Septra antibiotics to take orally. I had no relief, so I went back and he gave me another shot of Rocephin and gave me two weeks worth of amoxicillan to take and also suggested that I use an antibiotic ointment. Still no relief. I went back after two weeks and he gave me another shot of Rocephin and another set of antibiotics (I honestly can't remember the third set I took). Still no relief. At this point, the scaling/crusting covered my entire nipple and areola and the discharge was a straw color and there was also blood present. I started using non-stick pads to cover the area, so I wouldn't leak onto my clothes.

It had been about three months and I got pretty frustrated and decided to see another doctor. This doctor looked at my chart and at all the antibiotics I took and thought that it might actually be eczema and not an infection. She prescribed me a steroid cream and told me to take it for a month and come back if it didn't get better. The steroid did help a bit with oozing, but it remained scaly and crusty and the discharge would come back as soon as I stopped the steroid. I went back and she prescribed a different topical steroid for me to try and told me to take it for two weeks. Still no relief, same results as the first steroid. I went back and she suggested it might be a fungal infection, so she prescribed me an anti-fungal cream. This stuff was completely useless and did nothing to relieve any crusting or discharge.

It had been about 7 months that this was going on, and I got so discouraged. I just decided to deal with it on my own out of frustration and started looking at natural remedies for eczema. I used some essential oils, kukui nut oil, and I just tried using a moisturizer to help with eczema. None of this stuff helped, but I kept trying out of denial. I did this for about 5 months (I regret waiting that long to seek out other opinions, but I was honestly just in denial and scared).

At the year mark, I decided I wanted to see a specialist. I made an appointment with a dermatologist and she went over my history and examined my breast and nipple. By this point, my entire nipple and areola were completely crusted/oozing and the whole skin on my nipple was thickened and bumpy (my left nipple was completely smooth and normal). The breast skin around my nipple area also thickened a bit and seemed almost leathery in texture? I couldn't feel any lumps in my breast, but my right armpit gets a bit sore. The first thing she said was that it looked like Paget's Disease and wanted to do a biopsy right then and there and wanted to schedule me for a mammogram right away. She took a punch biopsy of the area and also prescribed me a new antibiotic ointment to see if it would stop any of the oozing. The result of the biopsy was negative, but she still wanted me to get a mammogram. The breast imaging center called me and said that they wouldn't allow me to have a mammogram because I was so young and since my biopsy had been negative, they didn't want me to have unnecessary exposure to radiation (understandable). They suggested that I get an ultrasound instead. The ultrasound showed no irregularities and then the dermatologist said that it is probably just stubborn atopic dermatitis/eczema and prescribed me a stronger steroid cream that would supposedly "knock it out".

Well, I have been using that steroid cream for about 5 months now, (2 weeks on and 1 week off at a time). On the weeks that I am taking the steroid cream, the discharge seems to stop, but my nipple is still flaky and crusted, and the day I stop taking the steroid cream, the discharge comes back and it becomes just as oozy. I had called in July for a follow-up with the dermatologist and they didn't have any openings until the end of November, I asked to be put on their cancellation waitlist. I decided to just wait patiently and continue the on-and-off routine with the steroids and hope that there would be a cancellation.

This week, I realized that it has been a year and a half and it has only gotten worse, never a single day of normalcy. I decided to get more assertive and called the dermatologist and said that it was urgent and I needed to be seen as soon as possible. I also called to make an appointment with another dermatologist to get another opinion, and I have also made an appointment with an OB-GYN to talk about possible breast diseases. So, luckily I will be seeing a dermatologist next Tuesday and the OB-GYN on Thursday and another dermatologist in a month.

My nipple and areola and currently still flaky and crusty and there is still blood and straw-colored discharge. The breast skin around my nipple is still leathery and thick and is a little discolored and looks stretched. There are now also little scabs(?) on the skin of that breast. My left side still looks completely normal.

If anyone has any advice or knows what kind of questions I should ask my doctors, PLEASE HELP!! I apologize for the length of this post, it's been a pretty long process. And if you have read all of this, I appreciate you so much! :) Hope everyone has a great weekend!

-Christine


p.s. I forgot to mention, but it is itchy LIKE CRAZY (although I try my best not to scratch it at all) and the nipple area is uncomfortable and burns. Also, I've never breastfed/had any kids and my grandmother died from breast cancer, but I don't think she got it until after she was 50.


Comments

  • jcpriest0469n
    jcpriest0469n Member Posts: 63
    edited September 2016
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    The OB-GBN should have some answer . The itching is a symptom of inflammatory breast cancer. You might want to Google it.




  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited September 2016
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    Perhaps, but the itching is not necessarily a sign that you have IBC for sure. Good for you for being assertive. You need to know what is going on. Heyy deyy, here is my advice. First, the doctor to see is a breast surgical oncologist. This is the expert in evaluating breast problems to rule out cancer. Second, the place to go is an NCCN cancer center. This is the place where they have seen it all, including young women, and are very good at what they do. The nearest one to you is UC San Diego Moores Cancer Center. There are others including USC and City of Hope. Call and make an appointment. If the receptionist tries to put you off, make sure they know how long you have had a problem. Maybe your PCP or OB-Gyn can help you get a timely appointment. Stand tall, take a deep breath, and march forward. Please let us know how it turns out.

    https://www.nccn.org/Members/Profiles/Default.aspx...


  • marie5890
    marie5890 Member Posts: 111
    edited September 2016
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    IBC comes on rapidly. Hours, days. If this is something that has gradually gotten worse over a year and a half, it doesn't sounds like IBC to me.

  • heyy_dayy
    heyy_dayy Member Posts: 3
    edited September 2016
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    Hi, jcpriest0469n,

    Yes, I am hoping and praying that I can at least get some answers from the OBGYN this week. This will be the first time I am seeing an obgyn about this issue, so I hope I can get an answer whether it is the best of news or the worst. Thank you for your response.

    -christine

  • heyy_dayy
    heyy_dayy Member Posts: 3
    edited September 2016
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    Hi, ShetlandPony,

    THANK YOU!! That is super helpful information, and I will definitely look into that and ask my doctors about it.

    blessings,

    Christine

  • marie5890
    marie5890 Member Posts: 111
    edited September 2016
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    Don't expect too much from your OBGYN as they are not breast specialists. But they can at least get you into see one. Pony's is great advice. :)

    Good luck. A year and a half is a long time to not have answers for an problem. Hope you get some soon. :)


    Edit to add. I see you have already had a punch biopsy, which ruled out IBC, so that is good. Hopefully you will find out what is going on very soon.

  • Via3232
    Via3232 Member Posts: 1
    edited November 2017
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    WHAT HAS WORKED FOR YOU SINCE THIS POST. I hope you’re available and I hope u have an answer. I have been dealing with the same thing since February :’

  • Georgia1
    Georgia1 Member Posts: 188
    edited November 2017
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    Hi there. Just offering that it could be an intraductal papilloma. Just something to ask your doctor about and I agree with others here that you should keep pushing for answers; find an expert who can look at your prior images and reports and perhaps another ultrasound would be helpful. Here is some info:

    "Intraductal papillomas are benign (non-cancerous), wart-like tumors that grow within the milk ducts of the breast. They are made up of gland tissue along with fibrous tissue and blood vessels (called fibrovascular tissue).

    Solitary papillomas (solitary intraductal papillomas) are single tumors that often grow in the large milk ducts near the nipple. They are a common cause of clear or bloody nipple discharge, especially when it comes from only one breast. They may be felt as a small lump behind or next to the nipple. Sometimes they cause pain."


  • MTwoman
    MTwoman Member Posts: 228
    edited November 2017
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    Via, have you been through the series of dermatology led treatments that HeyyDayy did? She has not returned since her Sept. 24, 2016 post, which tells me that her problem was solved and it was not bc (or she would have returned to the BC forum). Where are you in your diagnostic process? (has any imaging been done? have steroid creams/antibiotic creams etc been used? etc)

  • ishhlish
    ishhlish Member Posts: 3
    edited November 2017
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    Hi Via3232, I dealt with the EXACT same thing 8 years ago when I was 19! It happened just on my right nipple. Never went to the doctor, self medicated for 1 1/2 years (used coconut oil, olive oil, aveno lotions etcs) nothing worked. It continued to crust, weep and has that same straw colored discharge. It was also itchy and stuck to my bra to the point that some of the skin on my areola ripped and bled because it got stuck. I honestly thought I was dying. I then used hydrocortisone gel which temporary healed my symptoms but came back the moment I stopped using, so I used it for a month every other day.. but again it was a bandaid rather than a cure because it always came back a week after I stop putting. I noticed it was bad for the skin too because my skin looked like it was thinning.. so I stopped.

    The magic happened when I used "Elocon"- a topical OTC steroid - every day for a week. It was recommended by someone in an eczema forum. It worked and my eczema (as I self diagnosed it) never came back since! I had also recommended it to other people in that forum and it seem to have worked for them too. Do try it out!

    My nipple and areola however never went back to its normal color. It has been darker and has a slightly rough texture (well not really rough but it's just not as smooth as my left one) for the past 7 years. I read someone in this forum with the exact symptoms and resolution as mine and the doctor suggested that it may never return to its original state. I do hope Heyydayy comes back and gives an update because I always want to see how the others have resolved their problem.

  • ishhlish
    ishhlish Member Posts: 3
    edited November 2017
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    Just to add, I've also read that you're more prone to nipple eczema if you have a history of eczema. So maybe if you've experienced itching, scaling and oozing in some other part of the body then it's safer to say that it's just eczema and not pagets or any other form of BC. I don't really have history of eczema but my ear does experience weeping and itchiness (similar to the one in my right boob) every time I wore dirty jewelry. I do use Eucerin anti itch cream for that and it also works for my weeping ear.

    Hope that works for you too. Keep us posted

  • Cmmarier
    Cmmarier Member Posts: 1
    edited September 2018
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    I am experiencing the same issues. Has been going on since last December 2017 when my eczema kicked in. Hasnt gone away. I have talked with my OBGYN multiple times and she has put me on antibiotics and given me eczema cream and anti-fungal creams. None have worked. I started just lotioning and using natural oils and that doesnt work either. I am so frustrated. My left nipple oozes, gets dry and cracks, bleeds, and then just repeats. And the itchiness is terrible. I have used anti-itch cream but that doesnt help. Ice doesnt help. I believe it is eczema but I havent been able to visit a dermatologist yet but wondering if it is even worth it. I dress my nipple with bandaids throughout the day so that my clothing and bras do not irritate my nipple more.

    Also, I have sensitive skin and have been using the same detergent for over two years. No change in diet, soaps, or routines. I am 23 and have no children.

  • moderators
    moderators Posts: 7,903
    edited September 2018
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    Hi Cmmarier, 

    Welcome to the community forums.

    Just a heads up to let you know that this thread has been inactive for almost a year so members here may not respond or see your post. 

    If you like, you can create your own topic in this forum where other members may be more likely to respond. 

    Check out the help section below for more information:

    Commuinty Help section.

    We hope this helps!

    The Mods.


  • enginesimple
    enginesimple Member Posts: 1
    edited February 2022
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    Can anyone recommend a good wicking sports bra? I have tried many different brands, but they do not wick or dry as quickly as my other dry/tech type clothing. I usually take it off at night along with my day clothes and only sleep and relax in my night clothes. In the cool early mornings, the sports bra is still damp. Burrrr

  • minustwo
    minustwo Member Posts: 13,077
    edited February 2022
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    Engines - this thread has been inactive for 3 years. And really not relevant to bras. There is a 'Bras 101' thread.

    If you could go to my Profile and enter your diagnosis & treatment to date, that would be helpful for those forming answers. Where are you located? Dry or humid climate? I'd start by hanging my 'day bra' on a clothes hanger over the shower rod where it has the best chance to dry.

  • moderators
    moderators Posts: 7,903
    edited February 2022
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    enginesimple, welcome to Breastcancer.org! We are so glad that you reached out to join us. Here is the thread that MinusTwo mentions in her post, you can try posting your question there too: Bras 101: The Great Post-Exchange Debate

    Good luck! Please let us know if we can help in any other way.
    Best, The Mods