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Breastfeeding trouble a sign of DCIS?

xtine
xtine Member Posts: 15

I wanted to bring over this discussion from the DCIS to Stage IV discussion because I think it is interesting on its own and important to me personally.

I was diagnosed with DCIS about 1 1/2 years after weaning my twins... the first troublesome mammogram (calcifications) was seen more like 6 months after weaning, but they took a wait and see approach. I stopped breastfeeding rather early on (4 months), and supplemented with formula throughout, due to not being able to extract enough milk. To me, I felt like I was making a LOT of milk, as my breasts became very large, heavy, and engorged. But my girls weren't getting enough despite lots of enthusiastic sucking (we weighed them frequently to be sure), and if I pumped I could hardly pump any milk from my right (left was fine). I found the whole situation to be frustrating and puzzling, and consulted with both a lactation consultant and a doctor. I tried a lot of things to help, including Reglan (which probably made the cancer spread more quickly, from what I've read).

To me, it's obvious that my breastfeeding was affected by DCIS. In the end I had 10 cm of DCIS, mostly solid... so I don't see how milk could have gotten through the ducts if a significant amount of that DCIS was present during breastfeeding. However, when I asked for help, nobody suggested cancer as a cause, and my oncologist hasn't heard about any links between breastfeeding trouble and DCIS.

(I also think my problems were easily dismissed as twin problems... they expected me to have trouble with two!)

In the other thread, several people mentioned similar stories. I've also done other searches where this has come up anecdotally. But I can't find any studies correlating breast feeding issues with DCIS...

Early diagnosis is so important, and I was fortunate that I got a mammogram when I did due to family history (I am in my 30s). With DCIS you often have no lump, and many women have no reason for screening (youth, no history). If this was a common symptom, I would think that doctors and lactation consultants would want to refer women to cancer screening if they were having production issues on one side, especially if they seemed engorged and stuck...

Any thoughts on this or info I haven't found?

Comments

  • mom3band1g
    mom3band1g Member Posts: 87
    edited March 2011

    Well, I was nursing when I found my lump and had been nursing for 10 yrs straight!  Whne I found my lump my dd was about 98% weaned and was only nursing from the cancer side.  Never had supply issues or any for that matter!  I was a little eeked out when I realized my dd had been drinking  milk that had been flowing through ducts filled with cancer.  Yuck.  I do wonder if my nursing and/or being pregnant for so long is why my hormones were messed up.  I do think that's what started my bc....messed up hormones.

  • CandDsMom
    CandDsMom Member Posts: 68
    edited March 2011

    Yes! I am another one (I was posting on the other thread as well).  My DCIS was only caught due to early screening as well (I turned 35 during the wait for a biopsy).  My right breast for some reason wouldn't make as much milk and my son would not latch there when I was nursing (I weaned him in November and was dx in March).  My nipple on that side was a bit upturned as well (as opposed to the left one which pointed straight at the ground) but no dimple and nothing palpable.  I also had a large area of multifocal DCIS (the actual DCIS spots were small - I think they varied from 1-7mm) but the abnormal area that contained them was 8x9x5 cm as I recall.  Thanks for taking this onto a new thread!

  • jelson
    jelson Member Posts: 622
    edited March 2011

    I heard a broadcast of Felina (Rutkowski??) Gallagher on NPR talking about her store Upper Breast Side http://www.upperbreastside.com/ located in Manhattan. In the course of the interview,Ms. Gallagher spoke about her own personal experience breast feeding - she breast fed from only one breast, because the other was non-functional. No one could diagnose the problem and she was eventually diagnosed with stage 3 breast cancer and had a mastectomy.

    I don't know if Ms. Gallagher is on these boards, but perhaps through her own experience and  her contact with 100's if not 1,000s of breast feeding women - she might have insights to share on this issue.

    Julie E

  • Kimmy3
    Kimmy3 Member Posts: 1
    edited January 2012

    Hello,  I know this is coming in years after the original post, but I have experience in the same. I became pregnant with my first child at age 34.  I was super excited about breast feeding, however my milk never came in,  I tried and tried for a month, my baby gained only a little weight and I had to formula feed.  I saw lactation consultants and they had no answers.  I wasn't shy, or afraid, and was doing everything right. When I pumped with the industrial pump at the hospital with the specialist I produced scant amouts of milk.  I had 2 more children after that, and tried initially, but the same thing happened.  I never experienced my breasts becoming full, or let down, or leaking or any of that.  Fast forward to age 44.  I was diagnosed with extensive DCIS, high grade, requiring a mastectomy.  Testing was triple negative. The oncologist and surgeon told me I was cured and could put breast cancer behind me, for which I am very thankful.  They both dismissed me when I told them that I think I may have had this DCIS for some time because of my lack of milk production.  I do think more needs to be studied in this area.

  • Meredith26
    Meredith26 Member Posts: 6
    edited February 2012

    Have any of you seen any studies on the impact of children's exposure to milk from cancerous ducts? I breastfed for 15 months from both breasts, then was diagnosed with extensive DCIS on the left side at the 17 month mark.



    I am very worried that my daughter will have some ill effect, and wonder if the fact that she has has persistent acidic poop and diaper rash since turning one year is related.

  • AshlandMom
    AshlandMom Member Posts: 1
    edited May 2012

    I had a similar experience to those posted above. From the very beginning, I had trouble breast-feeding from my right breast, but I could easily produce milk from my left breast. For the first six months that I nursed, I had horrible pain in my right breast (a shooting pain through my ducts every time I nursed), but I kept nursing through the pain. Two lactation consultants confirmed that my latch was correct; one finally suggested that I must have an anatomical problem (a bent duct or something?) that would cause the pain. She suggested that I take calcium, which I did. After six months of nursing, I began the calcium supplements, and the pain eased, but I never produced as much milk on the right side. At ten months of nursing, I suddenly (literally overnight) developed a large (6 inches across) mass in my right breast. I saw my OB/GYN, who was confident that it must be mastitis. She advised me to take the usual steps for mastitis (massage, heat, etc.), but there was no change. I had two inconclusive ultrasounds a month apart. The radiologist said to come back in 3 months after stopping breast-feeding, as ultrasounds do not present reliable information for dense breasts (and nursing breasts are especially dense). However, the technician caught me alone and told me that she'd seen a similar ultrasound that had turned out to be cancer, and she suggested that I get a biopsy. Within a few weeks of finding the lump, I had a FNA and then a core needle biopsy that confirmed DCIS with some amount of high grade invasive cancer (I haven't had surgery yet, so I don't yet know the extent of the invasive cancer, but the response that I've had to neo-adjuvant chemotherapy suggests that it is likely DCIS with microinvasion). I have just finished 6 rounds of chemotherapy (Taxotere, Carboplatin, and Herceptin) and will have surgery in a month, followed by radiation. 

    I believe that the trouble (and pain!) that I had breast-feeding from my right (affected) side was caused by DCIS. I am curious about what triggered the dramatic inflammation that occurred overnight (was that the point at which the DCIS shifted from DCIS only to DCIS with microinvasion?). I had recently taken a topical hydrocortisone cream for an unexplained rash on my back (directly "through" from the affected breast). I had a persistent itch there from just prior to the emergence of my lump/inflammation until after the first round of chemotherapy. Possibly unrelated, but certainly curious!

    The best words that I've ever heard were when my breast surgeon told me that my daughter would not be affected by having drunk 12 months of breast milk filtered through cancer-laden ducts. I have sought but not found any studies to confirm this (doctors explain the absence of studies by saying that no one would choose to subject their children to breast-feeding on a cancerous breast, but that does not reassure me).

    I would be very interested to hear from other women who have had similar experiences with breast-feeding and cancer! 

  • 25weeks
    25weeks Member Posts: 7
    edited May 2012

    I'm curious about this as well.  I was just diagnosed today with DCIS (haven't even met with surgeon yet for full report - that's tomorrow morning), but I had a lot of trouble breastfeeding my now 5 1/2 and 3 year olds.  I couldn't seem to produce enough milk and had to supplement both of them.  My milk spoiled very quickly (couldn't even freeze for more than a few days), and my daughter had frothy poop that severely irritated her skin, to which we chalked up to the dairy & soy in my diet.  My daughter was also treated for acid reflux and slept on a wedge for five months!  Looking back, maybe DCIS was in play.

    I also wonder if the DCIS was present, then 1) did it have any affect on the milk I produced, and 2) could there possibly have been ill effects on my childr?

  • Meredith26
    Meredith26 Member Posts: 6
    edited May 2012

    Here are some of the explanations I heard:

    (1) Non-metastatic cancer from the mother cannot become metastatic in the child.  Even if the baby is ingesting breast cancer cells, the baby has not gone through puberty and doesn't have the hormones which create breasts, and therefore could never contract breast cancer in this way.

    (2) The stomach acid kills the BC cells that pass through.

    (3) If it were possible to transmit BC in this way, it would be an observable trend and one of the first questions young women are asked upon diagnosis.

     I would have preferred to find an article, but there don't seem to be any studies on this topic.  Although it is the least scientific, I found (3) the most comforting, since it does seem logical that if breastfeeding could transmit breast cancer we would have heard about it by now in the media and it would be a widespread problem. 

  • leggo
    leggo Member Posts: 379
    edited May 2012

    Add me to the list of women who had trouble breastfeeding (second child) which resulted in a BC diagnosis. Couldn't get the doctor to listen to me either. I was also livid that I was passing cancer cells onto my child. Screamed my Dr. stupid!

    "The stomach acid kills the BC cells that pass through" - I highly doubt it works that way...if only....I wouldn't be in this position.

    And....

    "we would have heard about it by now in the media" - doubt that too. Can you imagine the frenzy if they released information like that?

    Sorry to be pissy.

  • BanR
    BanR Member Posts: 238
    edited June 2017

    read this post years after it was posted. Well i was not a BC patient then.

    I asked the same question to my dr. He said cancer can't be transmitted from mother to child. Her body will consit as a foreign object and discard.

  • Diagnosisbreastcancer
    Diagnosisbreastcancer Member Posts: 2
    edited June 2017

    I also suspect that my breast-feeding twins (while also pumping milk) is linked to my breast cancer. Apparently the pump doesn't empty all the milk from the breast and I had mastitis 2X in that 9 month period. I wonder if it is related too...

  • Diagnosisbreastcancer
    Diagnosisbreastcancer Member Posts: 2
    edited June 2017

    I also suspect that my breast-feeding twins (while also pumping milk) is linked to my breast cancer. Apparently the pump doesn't empty all the milk from the breast and I had mastitis 2X in that 9 month period. I wonder if it is related too...

  • BanR
    BanR Member Posts: 238
    edited June 2017

    same here! I had my tumor on the same spot where i had the painful bacterial accumulation twice. There can be some link which my dr mentioned too. There is something called pregnancy associated breast cancer.

  • minustwo
    minustwo Member Posts: 13,065
    edited June 2017

    Below is a link to the NCI - National Cancer Inst about pregnancy associated breast cancer,. Sound to me like it just means diagnosed during pregnancy or the first years postpartum. It doesn't appear to mean that nursing or pregnancy cause breast cancer. I don't see a causitive link.

    PABC) is defined as breast cancer diagnosed during pregnancy or in the first postpartum years

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC34105...


  • lastar
    lastar Member Posts: 551
    edited June 2017

    My recollection is that breastfeeding decreases the risk of breast cancer. I had clogged ducts on my left side when I was breastfeeding and was diagnosed with DCIS 5 years later. Maybe a coincidence but I wonder.

  • gb2115
    gb2115 Member Posts: 553
    edited June 2017

    This is very interesting. I pumped exclusively for my daughter, and getting milk out of the right side (where the cancer eventually was) was not as easy as the left side. Like it made about half the milk that the left side did. I wonder, I mean, they say that cancer grows for years before it can be spotted...maybe the breast was compromised already.

  • minustwo
    minustwo Member Posts: 13,065
    edited June 2017

    LAStar - you are right. Breast feeding decreases the risk of getting breast cancer.

    Otherwise there are no definitive answers as to what causes BC. Although genetic tests so showing some inherited concerns.

  • BanR
    BanR Member Posts: 238
    edited June 2017

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46531...


    Says pregnancy associated bc ( tnbc being a subtype)can occur upto 10 years from pregnancy.

  • minustwo
    minustwo Member Posts: 13,065
    edited June 2017

    Thanks for the link BanR

  • calidancer
    calidancer Member Posts: 17
    edited July 2017

    I had DCIS in the breast with better supply. I did have more clogged ducts while breastfeeding though, in similar area to the ducts with DCIS.

    Cancer is not transmitted from person to person. https://www.cancer.org/cancer/cancer-basics/is-cancer-contagious.html

  • Belle86
    Belle86 Member Posts: 2
    edited May 2018

    Also posting years later. I had difficulty during breastfeeding with both my children (2012) and (2015)

    On both occasions I initially became engorged and had mastitis on the left only. Even though the second time I knew what to expect and had a pump ready to relieve the engorgement - nothing would come out!

    I saw a lactation consultant as my second son had nappy problems. Green, frothy and foul. Also had (and still has) a distended belly. She told me I was “underdeveloped” and this is why I would not produce.

    I ignored her because I don’t think a person’s size has anything to do with it - especially considering the right was fine! I continued to produce less than an ounce on the left, he showed preference for the right also.

    Ultimately I couldn’t feed from the left side. So I went around with one boob about 4 times the size of the other!

    Now. I just can’t help but wonder, was it the calcifications in the ducts? Is that what stopped the milk from coming out? Because the engorgement tells me it was produced. It just couldn’t come out so the whole supply/demand thing couldn’t work.

    Then... how could I NOT have caused some harm to him from what he did get. If only I gave up sooner. If only I hadn’t tried so hard!

  • lastar
    lastar Member Posts: 551
    edited November 2019

    Having a baseline MRI to detect changes over time might be helpful, and if nothing concerning is found you can ease your mind and work on getting pregnant. Best wishes on both fronts!