PLEASE SOMEONE help me!!!

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Vmopp
Vmopp Member Posts: 4
edited February 2020 in Not Diagnosed But Worried

hello so I am going to make this as short as possible.

I am 31 years old, and two years ago I started having quite a bit of bloody discharge from both nipples. I had my LEFT ductal excision then my RIGHT two weeks later both being complete (I had all ducts remover) Then I had a mass removed as well from my RIGHT breast a month after those.

Fast forward a year, I start have bloody discharge from my LEFT nipple again!! I obviously tell my surgeon and she has me go in for a mammogram as well as ultrasound and MRI all of which showed I have NO ducts and no obvious masses. So we have been keeping an eye on it and just kind of seeing what happens. It has now been a year since this has been going on and it has not stopped or slowed down.

She has no idea how or why this is happening when I have no ducts at all to transport the discharge from my breast to my nipple. I have an appt with her again in March and she stated that if it hasn’t stopped then we are going to be discussing surgery again. She has stated having my areola removed but I am worried about that as well as if this will stop the problem??

If anyone has had this happen before or even has any possibilities as to why this is happening I would be more than happy to hear them! I can also share more details if need be. Please and thank you.

Thank you also for taking the time to read this!!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2020

    I had unilateral spontaneous bloody discharge on the right side. A ductogram, then excisional biopsy were clear. Discharge persisted two more years through a second and third opinion. Second full work up and excisional biopsy showed ALH and ADH. Genetic counseling said I had a 50% lifetime risk. I decided on bilateral preventive mastectomy. Obviously that breast was busy and up to no good. Don't panic but be vigilant.

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  • Vmopp
    Vmopp Member Posts: 4
    edited February 2020

    farmerlucy thank you very much. She has mentioned preventative mastectomy prior but because of age she is hesitant. But I guess I will try to just breath and wait for my appt and see what the heck’s going on. Just still not understanding why or how this discharge is coming out when I have no ducts. So frustrating!! Again thank you so very much and I hope all is well with u now!!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2020

    K - Keep us posted! Life is not always fair and one plays the hand they’re dealt. Good for you for being so proactive. You are not alone.


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  • djmammo
    djmammo Member Posts: 2,939
    edited February 2020

    Vmopp

    Over the years I have seen one or two instances where after surgery a persistent hematoma developed and the old blood slowly leaked out through a duct (or fistula) that was connected to the hematoma.

    Your imaging would show a hematoma if one were present. Is there any mention of a fluid collection on your most recent MRI or US on the side of your current problem?

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  • Vmopp
    Vmopp Member Posts: 4
    edited February 2020

    djmammo no I didn’t hear anything about a fluid collection. My US, mammo and MRI all showed many new cysts but nothing they thought was abnormal or causing the bloody discharge. My doctor stated that she had never heard or seen this before and was going to ask a few of her professors and colleagues to see if they had. It seems no one has seen this before? And just to add I’m actually having a greater volume of discharge now than I did before I had my complete duct excision surgery. All the tests have showed no ducts left over at all. So I’m still not fully understanding why or how it would have a path to follow. Is there another way for discharge to get out of the nipple besides ducts? Sorry if that sounds like a silly question. After two years and no answers and still bleeding I’m so confused. And thank you so much for your reply!! I greatly appreciate i

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  • djmammo
    djmammo Member Posts: 2,939
    edited February 2020

    Vmopp

    Has anyone suggested a ductogram? If there is a persistent visible opening that is leaking, contrast can be injected and pictures can be taken.

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  • Vmopp
    Vmopp Member Posts: 4
    edited February 2020

    djmammo no actually no one has even offered that as an option. Could that be because on my scans and everything it showed I have no ducts (so perplexed)?? Well I am going to ask about this on my March 11th appt for sure! Thank you for the suggestion.

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  • djmammo
    djmammo Member Posts: 2,939
    edited February 2020

    Vmopp

    If there are no ducts then what is leaking may be an abnormal tract called a fistula and the exam would technically be a fistulogram but it can be performed just like a ductogram.

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