Feeling of milk let-down with DCIS?

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  • sandra4611
    sandra4611 Member Posts: 2,913
    edited April 2014

    LAstar, it's been 7 months since the BMX and I've had three more surgeries after the BMX. It just never goes away.

  • Infobabe
    Infobabe Member Posts: 1,083
    edited April 2014

    This is an interesting thread.  

    The question is, do women who have the let down feeling not present with symptoms of bc.  It should be a survey on the on intake forms to see if it coincidental or not.

  • sandra4611
    sandra4611 Member Posts: 2,913
    edited April 2014

    It must not be very common. I've been unable to find anything on this topic and I've been searching on Google. Anyone else find anything?

  • coffeelatte
    coffeelatte Member Posts: 209
    edited April 2014

    Wow, I too had this let down feeling for over four years before being diagnosed with DCIS in 2013. The feeling was very strong and it drove me crazy at times. I was so bugged by the sensation I went to see my gynecologist to ask her about it.  She was not sure why I would have this after not breastfeeding for 30 years so she took me off of my low dose of estrogen. I took such a tiny dose after I had had a hysterectomy in 2003.  Stopping the estrogen did help, and I was able to forget about it. I only experienced this let down feeling in my left breast; which was the side that had the cancer.

    I found I did get the sensation back after having the BMX.  It comes and goes and I find it bothers me when my chest lymphedema is acting up and it goes away when I do the manual massage twice a day.  So thinking back the following things brought it on for me:

    1. Breastfeeding

    2. Estrogen replacement

    3. DCIS

    4. Lymphedema

    I am wondering if each of these situations creates some swelling which then puts pressure on nerves which then creates the let down feeling.  I know I was more swollen when I took estrogen. I am also dealing with swelling from the lymphedema. I do not see the swelling, but I have it in the area where the node was removed and it gets quite achy.  When I breastfed, I was huge and was swollen in the breasts for sure. I don't know about the DCIS but maybe that also brings on some swelling in the area of the milk ducts. These are just my observations.

    Sandra, I wonder if you are having some swelling around and/or behind the implant and it is irritating some of the sensory nerves. Maybe a visit with a qualified lymphedema PT specialist could give you some relief.  It sure does help me when I get that miserable feeling.

  • sandra4611
    sandra4611 Member Posts: 2,913
    edited April 2014

    Coffeelatte,

    Hmmm. That's the most logical idea, isn't it? Thanks for the idea. I hadn't thought that lymphedema could be playing a role.

  • HappyCat422
    HappyCat422 Member Posts: 1
    edited October 2014

    I found my way here to this thread after I googled "A feeling of milk let down in my left breast". I haven't breast fed in 20 years! I started having this sensation a few months ago, and didn't think much about it. Lately the sensation has gotten really uncomfortable and almost like a burning, and its starting to happen in the other breast. BC was the absolute furthest thing from my mind when I googled that and seeing BC in the search results gave me a wicked shock. I have given myself probably a hundred breast exams since reading this thread and found in my left breast a large lump, but not round, its long and narrow shaped and starts practically on my chest wall and gets larger as it disappears into the breast tissue. It is well defined from top to bottom and I'm just disgusted that I haven't felt it until now. There is no lump in the right breast. I have complete faith that everything happens for a reason, and I trust God to get me through this no matter what it is. Praying and hoping that its nothing.
    My questions...SOoo many, but basically I need wisdom. What to ask, what to demand, what to expect...? I talked to my doctor on Friday and she told me that I am already scheduled for a mammogram and she said maybe a cat scan depending on what she feels. I have the breast exam tomorrow. So...I feel like everything is in fast forward and I'm a little nervous, well make that a lot nervous. Thank you in advance. :)

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    Dear HappyCat422, we are sorry Dr Google got you here and has increased your fear. All you can do is follow your Doctor's advice as we are not medicos and your Doctor has you and future results to go by. We all hope it is just a benign condition.

    Please read What Mammograms Show: Calcifications, Cysts,Fibroadenomas. so that you understand terms, that may be used after your mammogram. Then try to relax and just go with the flow, as it can be a stressful time waiting.

    We wish you benign results and all the best

    The Mods

  • LizCr
    LizCr Member Posts: 13
    edited December 2014

    I have not been diagnosed, actually going to BS this afternoon, but one thing I keep talking about to friends is this totally weird feeling of milk let down that I have not felt in nearly 12 years! I keep saying it's like when my milk would fill up if my daughter made a single peep. I keep looking down expecting niagra falls! Nothing is engorged, nothing swollen, but it sure feels like it should be!

    Whatever IS found, as I KNOW something is different with my breast, I have absolutely NO DOUBT that this feeling is part of it. I have not had it at all in so long. Even the last few months, when I was weaning, or in the near 5 years after breastfeeding when I was still leaking regularly, did I feel this. If I wasn't 100% sure I couldn't be pregnant I would have been in a mad panic about THAT! It's very different from regular feelings during my cycle.

  • LAstar
    LAstar Member Posts: 1,574
    edited December 2014

    LizCr, check back when you find out what is going on. I hope it's not DCIS!

  • First_Wild_Signs
    First_Wild_Signs Member Posts: 23
    edited December 2014

    I have ILC in my left breast and I'm so glad to have found this thread because I had the same feeling of let-down in my "healthy" right breast along with colostrum and I haven't breastfed since 2000. I mentioned it when I got my MRI but was just told not to squeeze it. I've been on the fence about whether to have a bilat or uni but the more you ladies share the more I am inclined to have a bilat.


  • muzakmom1
    muzakmom1 Member Posts: 41
    edited December 2014

    You are he first person I heard say that. I woke up from a nap in April and that the smell feeling I had. Actually had excretion from one duct. Called the doctor and started down this road. My DCIS didn't show up until I had an excision and then a lumpectomy. Due to MRI I still had other 6-8 centimeters left after lumpectomy so I had double mastectomy 9/26!

  • HopefulonBay
    HopefulonBay Member Posts: 22
    edited December 2014


    Really interesting to find this. I was having a ductogram and told the doctor about this feeling and she said she had heard of this before. She was an older woman doctor. I did not feel like she discounted this information and when I told her I had a stinging sensation sometimes she also made note of that. She was not able to complete the ductogram and has scheduled me for a MRI with is scheduled for Tues morning. I really appreciate the sharing of information on the board. I was kind of being a bit lazy about following up with all this as I had been told that that discharge is not usually a sign of cancer and when she told me to please follow up I took it to heart. Thanks for sharing everyone.

  • R12345
    R12345 Member Posts: 5
    edited January 2015

    Hi I found this link after posting in the not diagnosed but worried section.  Basically every thing has happened rather quickly for me I started getting bloody discharge from right breast around 9 weeks ago at first I put it downto the fact tthat id had my daughter 7 months ago but I too experienced that milk letting down feeling.  Anyway so discharge continued so went to gp he referred me to breast clinic where I had an ultrasound a week later - the following week I saw the consutant and he said us was normal,  examined me and on seeing the discharge himself booked me in for a total duct excision (that was 22/1/15) for 10 days time (the 2/2/15)  so now im having surgery in five days and have no idea what the cause is reading all of your experiences im a little w

  • lusciousleaves
    lusciousleaves Member Posts: 11
    edited May 2015

    This has been a fascinating thread to read. I've had this same feeling for years and have tied it to episodes of MS flareups. All this time, I thought it was related to the MS flareups somehow. Just recently, I was dx with DCIS with BMX last week, and I see others are experiencing the same thing with a DCIS dx. What could the connection between the two be? An increase in antibody or inflammatory activity in the breast region?

  • LAstar
    LAstar Member Posts: 1,574
    edited May 2015

    I thought it was just the sensation of something in the duct. Maybe there's more to it?

  • lusciousleaves
    lusciousleaves Member Posts: 11
    edited May 2015

    Maybe? Or nothing at all? I'm also wondering how many women without either health issue have this sensation. Maybe it's a remnant of having had active mammary glands at one point? Or maybe there's a hormonal fluctuation causing it?

    But for so many to have it happening within months of a DCIS dx is interesting. I have to say that even after the BMX, I'm still having this sensation.

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited May 2015

    I had it for several months before diagnosis and just in area of breast with tumor so location of tumor was no surprise. It got worse over time. Before surgery it ached all the time and I could have sworn I was overdue to nurse except that I was 61! The other side tingled and it has atypical cells, but didn't have let down sensation. Also had itching in the side with the BC in the skin over the tumor

  • mariabhidalgo
    mariabhidalgo Member Posts: 2
    edited February 2016

    hi, i am new here. i have not gotten tested yet. but i was browsing to find out about symptonms while i wait for my appt with my ob. I ran into this topic and i found it really interesting. i have had the feeling of milk let down on and off for maybe a year. (my youngest son is 8). last week i started feeling a sharp knife stabbing pain in my left breast on the bottom part, this pain is only when i touch the area, it is like im pressing on very tender tissue. i think i feel a very small lump but im not sure, also i have had neck pain for the last month (dont know if that is related) just waiting for know. but i am a little worried that since i am 38 and i dont have an apparent lump that my dr is going to dismiss me. i im very intrigued about that milk letdown feeling i had no idea it could be associated with bc

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    mariabhidalgo, this could be any number of things, naturally, but it is good that you are following up with your physician. Just follow your gut, and insist on having it checked out for peace of mind.

    We're all here for you.


  • Bellefleur
    Bellefleur Member Posts: 58
    edited March 2016

    I stopped nursing a year ago when my daughter was 18months due to pain in my left breast that felt like sand rubbing in my ducts. Then 4 moths ago I was helping my friend with her new born my left breast kept having the let down sensation. I thought it was due to just helping her care for her new born but has happened off and on since. I have pain in my left breast and armpit not lumps but 3 indentations my GP referred to as tethering. Had and ultrasound the radiologist ordered a mammogram and I'm now wait results. It's not until I saw this that it clues in that hey maybe they could be connected and that I should be listening to my body a little better when it talks to me
  • sunflower215
    sunflower215 Member Posts: 3
    edited April 2016

    I was just diagnosis with DCIS 4/28and Yes had the same feeling. Nursing all 4 of my children the youngest is 14. Everyone I told thought I was crazy. Glad to hear other people felt it too


  • Sue67
    Sue67 Member Posts: 1
    edited May 2016

    I too felt the same feeling! I was diagnosed in Aug 2015 with DCIS stage 0. My youngest child was 11! I hadn't nursed for years but I kept telling my husband something was wrong with that breast. I never felt a lump either and Doctors told me there is no way I could felt it. It was found during my routine mammogram.

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited May 2016

    Ihad that feeling with ILC. Thpight i was crazy. Hadnt nursed for 29 years!

  • jennielaine
    jennielaine Member Posts: 6
    edited June 2016

    I am a 53 year old, went through natural menopause at age 39. My mother was dx with breast cancer at age 48 and died from it at age 51. I have had breast biopsies in both breasts at 38 due to abnormal appearing microcalcifications on my very first mammogram. The result was benign, (fibrocystic breast changes) though they put a marker in my left breast. I have had a couple of category 3 mammograms since then.........both due to the left breast.

    Now, my left breast has started spontaneously discharging clear fluid and I have the full feeling and that milk let-down feeling right before the discharge occurs..................I haven't been pregnant in 26 years. Needless to say, I'm calling my OB/GYN for an appointment

  • Carmendunn80
    Carmendunn80 Member Posts: 1
    edited July 2016

    I recently been feeling as if my boobs are filling up with milk. I have not had any discharge BUT for years my breasts have repeatedly swelled and become painful with lumps that come and go..... I very scared as I have already had cervical cancer.... Can anyone tell me what could possibly be wrong with me?

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2016

    Carmen-

    We understand how scary it can be when you experience unexplained health changes. You should make an appointment with your doctor and talk to them about what's going on, we hope it turns out to be nothing serious!

    The Mods

  • kaeyreed
    kaeyreed Member Posts: 31
    edited August 2016

    I did have problems like that! For years! Doctors said it was galactorrhea! I said to them but my baby was born in 1986! It was 2009! I think there is definitive relationship between the two

  • Catherinequinn
    Catherinequinn Member Posts: 1
    edited September 2016

    Hi, this looks like an older post but maybe it's still kind of active? I am 42, have two kids, 5 and 8. Haven't breastfed in 4 years..The last few years I have gotten that let down feeling in my breasts .The last time I asked my ob/gyn she thought it could be hormones, or could just be that my nipples were irritated from my clothes and stimulating that reflex. I have "lumpy" breasts, and we did a mammogram and ultrasound about 16 months ago. I had another mammogram this past June. My question is, this seems to be getting worse, the let down feeling. I am going to call the doctor, but are there tests I should ask about besides a mammogram? Is it maybe peri-menopause? Would blood tests be able to tell me? It's not painful, just annoying..and it's happening several times a day. It's also scaring me that something is wrong. Just wondering if anyone has any advice as far as what I should ask the doctor, what tests I should ask for. thank you!

  • Dizzybee
    Dizzybee Member Posts: 142
    edited September 2016

    I am 56 and haven't breastfed for 25 years, but I have had that prickly let down feeling for the last at least 5 years. My DCIS was 5 cm, wonder how long it's been there.

    My DCIS is in the breast that I had problems with blocked ducts and mastitis, though that could be just coincidence.

  • LAstar
    LAstar Member Posts: 1,574
    edited September 2016

    I had blocked ducts in my DCIS breast too, also lower flow as compared to the unaffected breast.

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