black discharge from nipple/need advice in general

1MindyydniM1
1MindyydniM1 Member Posts: 104


About 2 years ago I found a small lump in my left breast and reported it to my doctor. I have had a mammogram and two ultrasounds. The ultrasound picked up the little lump but they said it was too small to do anything so they are continuing to watch it. I was doing a routine breast exam about 2 weeks ago and noticed black/ blackish brown discharge from my right nipple unilaterally and in one duct. I have no pain at all. went to my dr and they gave me a breast exam and looked at the discharge and referred me to a breast diagnostic center to have a mammogram and ultrasound. nothing new noted on ultrasound or mammogram except 2 previous calcifications No fibrocystic breast change, ectasia or any infection what so ever, no papilloma but mammogram detected small benign calcification. I had blood work drawn all hormone levels and labs are perfect. I have a very high risk in my family. My dr wants a breast mri. She said I shouldn't be having this discharge. and is suspicious because papillomas aren't being picked up on ultrasound and even then these present with mostly clear or sometimes blood tinged discharge. So I was told to get the mri of my breast because she suspects a possible tiny papilloma but said it was highly unlikely and mostly DCIS at a microscopic stage. I also am being referred to a breast surgeon and every doctor I have seen wants me to have the BRCA test done. Has anyone ever had a case like this with black discharge in one nipple duct of one breast with DCIS? I have a bad instinctual feeling and I am tired of having the constant fear of waiting for it to grow bigger and wait to see why I have black discharge. With my history and my rights I feel my best choice is to have a double mastectomy with reconstruction. My family history is so high and even my father has cancer under his breast. Please give me some insight and direct me on how to handle the doctors and the insurance company if possible. I am so scared. Thanks again in advance!

Comments

  • mdg
    mdg Member Posts: 3,571
    edited November 2013


    I would meet with the genetic counselor and have the BRCA test done first. It could not hurt to get a second opinion if you feel that would help too.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2013


    My thought is that the breast specialist will want to order a galactogram on the duct with the discharge to rule out a little benign papilloma that isn't showing on the imaging. That is the most common cause of nipple discharge that isn't just hormonal.


    What is your family history that has them encouraging BRCA testing?

  • 1MindyydniM1
    1MindyydniM1 Member Posts: 104
    edited November 2013


    On my mom's side: grandmother and all her sisters (6) had breast cancer around age 35, and one brother had it also. My aunt had the same black nipple discharge at age 30 and they ended up removing her breast by 31 and I believe it was dcis. My mother has a lump but cannot undergo tests due to a terminal illness. (she has Huntington's She is nearing death at this time). My grandfather died from two types of cancer...I am not sure which because I was small...I am unable to ask my mother because she is unable to comprehend or talk. On my fathers side: my great grandmother and her sister died from BC. They both had invasive cancer that moved to lungs and bones. My father's mother has a lump that's growing and her health is declining fast, she wont go get a mammogram because she is scared. My fathers dad died from colon and lung cancer. My father has a tumor under his breast and wont get a biopsy because he too is scared. his doctors say it looks cancerous so he is undergoing radiation treatments. My sister is having the same symptoms as I am...she is 29, I am 31. I have also hd cousins on both sides that have had dcis around age 30-35. They are living and doing well. I know that anything is possible but I have a bad feeling about this. I am honestly tired of waiting around. I know that something isn't right in my body. I can feel it. I have dreams of my deceased grandmothers standin beside me holding my hands while I look at my breast in the mirror. I have seen two doctors at the same diagnostic clinic. But in all total, 4 doctors so far suggest the brca testing and breast mri. But depending on the mri results, I will have to have a duct excision regardless. I don't see the point of surgery to see if it comes back cancerous.....why not just bypass the wait and added stress and just give me a prophylactic mastectomy w reconstruction? The women in my family always said to listen to your body and heart....I am. I thank you for all the input. its very nice

  • DianeKS
    DianeKS Member Posts: 241
    edited November 2013


    Mindy, I can understand your fears with what you have told us. Do YOU want genetic testing? Because even if they offer it, you still have to say yes...that is if you want to go ahead. I am Braca2. I believe that if your father does have breast cancer, that is a big red flag for the Braca genes, a male breast cancer in your family. If you are considering a prophylactic mastectomy , please seek out a genetic counsellor. With everything going on in your family,( and in your health )I would imagine it is hard to concentrate, and keep all the information straight. These are not easy decisions and having an expert answer your questions, validate your concerns/ fears is extremely helpful. I choose to have bilateral mastectomies at the time of diagnosis, due to my age of dx and the fact my sister was already Braca2. Every family is unique, don't try to sort this out on your own.


    Unfortunately I don't have any experience with insurance comp, or US health care as I am in Canada. I'm sure someone else may have some info there. Try checking out the Braca thread, there may be something there that is helpful.


    Good luck with your decisions,


    Be gentle with yourself,


    Diane

  • fstop
    fstop Member Posts: 14
    edited November 2013


    Mindy,



    (hugs)


    I had discharge for years before they found my DCIS, I never worried because my mother said it was normal. I have no history and genetics came back fine but they found a large DCIS at 39. I now tell my friends and my daughters to not worry, most of the time it truly is nothing, but never mess around with breast health.



    As for insurance the biggest thing I learned is get everything approved before hand and have it in writing. I still had to fight things here and there but the insurance companies had to give in s they gave me approval. It sucks but we have to be our own advicates between the doctors and insurance.

  • Delilahbear
    Delilahbear Member Posts: 466
    edited November 2013

    Mindy,

    I am sorry you are going through all of this stress. I would advise the BRAC testing and MIR. I had nipple discharge in both breasts 1 year apart. Unusual to have in both. The 2nd time around, I had 2 ultrasounds and MRI followed by ductal excision and 3 other biopsies. Due to previous  biopsies followed by these 4. I said "enough". Pathologists suggested dx of papillomatosis and BS agreed. Following several counseling sessions with BS and my husband present decided on bi-lat mastectomy. It has had its ups and downs, but like you, I had this strong feeling in my heart that something wasn't right and if I waited, I would have needed chemo and rad.  I think with your situation the BRAC test and MRI need done first.

    Hope everything works out for you.


  • 1MindyydniM1
    1MindyydniM1 Member Posts: 104
    edited November 2013


    Thank you all. It is very hard to concentrate on everything. I graduate nursing school in dec and I am so excited. Something strange is happening to my sister as well. She is presenting with similar symptoms of discharge that are sudden ( i stated this somewhere above incase youre new to my story)and dreams of our grandmothers. She told me about her dream this afternoon. I just find this too wierd. But anyways I will have the breast MRI done for sure, but several doctors have said that it may not pick up on mri if its at a microscopic state. If for some reason it doesn't, then I fear I will sit and wait to be eaten up with cancer. Yeah its negative, but its the truth. The doctors want me to go to a breast surgeon and the genetic counselor. I just know something is wrong, I can feel it. I gave them in depth documentation I was able to obtain from my grandmother. She is the oldest one living. I have mixed emotions (personal reasons )and fear of results about the genetic testing for BRCA.I will probably get the BRCA testing done, but I know I will not have anything biopsied because once that area is penetrated, the risk of mutated cells escaping is increased and then the cells travel in the blood stream and settling elsewhere. All it takes is one mutated cell. Therefore cancer is spread. I have seen almost all the women in both sides of my family struggle with this and I refuse to. Thanks again for your input.

  • 1MindyydniM1
    1MindyydniM1 Member Posts: 104
    edited November 2013


    I was wondering what color your nipple discharge was.....just curious.

  • Delilahbear
    Delilahbear Member Posts: 466
    edited November 2013


    If you are asking about mine, fortunately it was not black but rather a greenish yellow. Usually it was noticeable dripping down the front of my nightgown which stained the same color.

  • 1MindyydniM1
    1MindyydniM1 Member Posts: 104
    edited November 2013


    Thank you so much for sharing that with me. Ill keep you informed on my journey, and I appreciate all pf the posts!

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