Wednesday, August 3, 2011

Galactocele -- The Continuing Saga

I appreciated reading any (albeit few) first-hand accounts when I was searching for information online regarding galactoceles.  So, while our almost-15-month-old is sleeping I'll get a few things typed up.
Part of the information below is in response to one reader's comment on the original "What is a galactocele?" post. I was given the option of having the entire milk duct removed but since I'm still nursing, the surgeon recommended waiting until I had weaned first. When I was told that, I was very torn. On one hand, how in the world would I quit breastfeeding, knowing that as I cut back on milk this huge lump in my breast would get larger and more painful? On the other hand, if I kept breastfeeding, how would I ever get rid of it?

For the record, this is my fourth child and the previous 3 were nursed 13 months, 23 months, and 27 months so I wasn't ready to stop nursing unless I really had to. The lack of information on this topic is very frustrating.
Earlier this year, I cried and had a lot of stress surrounding this mass so foreign to my body. It's still in my breast but it isn't something I worry about anymore.

Our son, now 15 months, is still nursing and I figure that in itself is likely keeping it more under control. I continue to take a Lecithin supplement (thought to decrease the stickiness of milk) and Boiron makes a homeopathic remedy called Phytolacca Decandra 30C (5 pellets per day).  I was taking a Biotin supplement as well but when I ran out I never did get around to purchasing more; no difference noted once I stopped.

For about 3+ months now I've been on a gluten-free diet which has become better to manage as I get used to it. Gluten acts in an inflammatory way in your body. I'm so used to watching what I eat as far as gluten goes that I'm apprehensive to add it back into my diet in case the galactocele gets larger again. I can say that I have not had the brief shooting pain in my breast that I had before eating gluten-free. Based on my experience, I can say without a shadow of a doubt that stress played (plays) a major role in galactoceles (as with many other breast cysts).

When I was looking for the elusive answers to my questions, I often felt sick and worried about what was going on that no one seemed to be able to help me with. Other times, I just prayed it would go away on its own. Since its still there, I can only assume God has other reasons for not removing it in MY timing.

About 2 months ago, it was still about the size of a golf ball but today it is slightly smaller than a ping-pong ball.  I really do feel that since I let go of the associated worry and accepted it as non-cancerous, that has played a big part in it staying on the small-side.  It was quite large and painful at the point when I had it drained (only to refill...augh!). I've read in a few places (and the surgeon my ob-gyn spoke with where we live also said) that surgery isn't always necessary. It is thought that most galactoceles will dissolve away and be reabsorbed into your body after you are done nursing. I'm not at that point yet so I'll have to wait to see how that plays out.

Most importantly, if you are dealing with a questionable breast lump, DON'T worry your self sick-er. My thoughts often centered around "what if it's cancer". Even if it had been, worrying only creates more stress in our lives and stress wreaks havoc on our immune and every other system. Simpler said than done sometimes but I know the stress I felt only made it worse.

These days, I feel for a palpable size once in awhile but not constantly. In fact, even sitting to write up this note had me palpating the galactocele for the first time in several weeks. I look at this as a time-thing. The only reason mine shrank quickly after refilling (post-aspiration) was because I became so dehydrated from the flu . That was the perfect (well, aside from endless bathroom visits) jumping point to getting it under more manageable control again. Not that anyone wants to catch the flu, but I was never so thankful for an illness!

Looking back, it took a couple months to get to the point where I could accept that it is slow-going but still heading in a positive direction.  Three months beyond that, I feel that I'm eating better, have less stress, and the galactocele that I still have is a non-priority in my thoughts.

If you are dealing with a galactocele and want someone to bounce ideas/thoughts off of, please leave a comment below.

Most recent Update HERE

70 comments:

  1. I have a galactocele. I've had it for nearly three months and just this past week had it drained. It is red, and hard and the size of a golf ball. The pain is sharp and most severe when my milk comes in. It has filled up again as well. Not sure what to do now, it hurts so much,

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  2. My breast was painful (over a week), very bruised afterwards for a few weeks, and light red/pink that first week. If your breast is very red and possibly hot to touch, you may have an infection from the needle puncture allowing bacteria into the incision site. Have you seen your doctor after having the galactocele drained?

    I had mine drained on a Monday or Tuesday; would have to go back to check on the exact dates. However, my breast felt quite painful through Saturday. The reason my pain went away at that point was because I ended up catching a flu bug and couldn't eat/drink anything (and was...ahem... in the bathroom a lot). That dehydration was enough to "dehydrate" the galactocele from a huge ball down to a golf ball size.

    After draining, the galactocele filled up very large immediately after my milk let down. That had me questioning the benefit of draining a galactocele on a nursing mother. It seems to me that the only time a galactocele won't fill up again is if it is drained several weeks after a mother has stopped breastfeeding.

    Assuming you are still nursing, my suggestion would be to continue nursing. I know how painful that lump is and how the pain radiates outward. My doctor suggested I quit nursing cold turkey or try to wean baby out of nursing. However, either way, I knew that it was only going to make the galactocele more painful at such an inopportune time.

    Your tender breast tissue was just dealt an intrusive blow. It's not like the other tissue in our body and it has to recover after the surgery inflicted upon it.

    Are you already taking a Sunflower Lecithin supplement? (There is a more commonly found soy-based Lecithin, but I don't recommend soy -- too many estrogenic properties). I took 4 capsules a day for several months and now just take 1 or 2 a day. It will help to thin out your milk and make it less "sticky", which can help it from building up in the galactocele.

    As for the current pain, I was taking ibuprofen for the pain and swelling. Acetaminophen only helps with pain. Take warm showers and let the water just run over your breast.

    Before having mine drained, I was massaging and applying pressure to the galactocele, having been told that would help to shrink it. However, after having it drained, I stopped doing that because it didn't seem to help.

    I can't tell you how fast mine shrunk down when I caught that flu bug; but how do I tell someone to go find someone who is sick and drink out of their glass?

    It's unfortunate that there isn't a more definitive answer to this breast issue. I firmly believe that stress and worry play such a big role. Pain itself can lead to more stress; the vicious cycle.

    It isn't cancer. Remind yourself of that. The pain isn't going to stay forever even though it hurts so much now. If the redness seems excessive though, I'd suggest asking your doctor if the site is infected (which can be taken care of without stopping breastfeeding).

    How old is your child and how long do you want to nurse her/him? If you want to continue nursing, you're going to have to fight for it. You can do it. You have to be the one to make that decision though. My doctor didn't think it was possible to continue nursing without pain and an enlarging galactocele, but my son is now 16-months and we're doing well. Mine is still there but has softened over time and is ping-pong ball sized.

    There is hope. I remember that pain and all the anxiety that went with it. I remember not knowing what to do and I'm still not sure what to do... but I'm on the other side of the pain and can encourage you in that way.

    You are and will continue to be in my prayers as you go through this time. Feel free to email me if you need someone to talk to. michiganmom at gmail dot com

    ((hug))

    Heather

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  3. Thank you Heather!

    My son is 15 months old. I really want to continue to nurse him, until we are both ready to stop. I have over the past week been weaning him off that side, and after the procedure they told me to pump and dump (from that side) for three days. It has been hard on my little one. He isn't getting as much as he wants.

    I really didn't want to do the aspiration. I was going to wait and watch it while I tried to find a doctor who might be willing to do the nylon probing procedure my doctor told me about (http://www.ncbi.nlm.nih.gov/pubmed/12757066). However, as of yet I haven't found anyone. So, I ended up going in because it started getting painful and red. For two months it didn't cause pain and just felt like a lump. It only hurt when I had done heavy massage on it to drain it out (until I was told to quit doing that and then it wouldn't drain once I stopped).

    I am currently on antibiotics because they thought there might be infection do to my new symptoms. However, it is getting more red every day, even with the antibiotics. I find out tomorrow if there was infection, but really, I don't need the official results. I'm sure there is, and the antibiotics need to jump in and help out.

    I talked to some La Leche League leaders and they recommended nursing just on one side if it is too painful. I don't really want to do that, but am worried about it filling up again if I am nursing (so full that it hurts like crazy). Before the aspiration, it was the size of two golf balls, and now is down to one. I wonder if it is draining a little though. It feels like it gets bigger when my milk comes in and then comes down when I nurse. It is a good pain when I nurse.

    So, it is really hopefully to me to hear that you are still nursing without pain on the affected side. Maybe I won't have to wean on that side.

    I think that I got the galactacele from wearing a speedo that cut over my breast. I got a clog there nearly every time I swam this summer and it didn't click until it was too late and the clog turned into a galactocele.

    I haven't been too worried about it until this last week when it started turning red and hurting so bad. I totally would be fine having a big lump (rather than do surgery) and still nursing. I'm just worried about it getting big and painful over and over and having to go in to the doctor again and again with no real "cure". I really want to do the nylon probing, if there were a doctor willing to do it, or experiment on me. :-) Heck, I might even have my hubby do it.

    I just want to get rid of the clog without surgery so that I can nurse my baby and future children on that side without it reoccurring over over and over.

    I am going to buy some more lecithin tomorrow. I have been taking the soy kind. Also going to buy an herbal tincture called "happy ducts". Hopefully they will help out more now that all the nasty green milky fluid has been pulled off.

    Thanks for the hugs and prayers. It has been on my mind constantly, and if I didn't believe so strongly in breastfeeding, it might not be such a big deal to me, but I do. :-)

    Thanks for sharing!

    Alyse

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  4. Alyse ~

    It's interesting to find out our babies are so close in age. :)

    A few comments here before I head to bed...

    I can see how part of a swimsuit could do it, given that it is something compressing on a certain area of that breast.

    I had read that nylon probing info several months ago and looked around but couldn't find anyone who knew what I was talking about. Considering how much our insurance didn't cover of the drainage procedure, I'm thinking I should have flown to Asia or into another such culture where it's common practice on women. Our after-insurance bill was almost $1,400 - yikes!

    I'd considered weaning on that one side until things started settling down. I had decreased his feeding on the galactocele side but after the pain decreased, I ended up unintentionally going back to that side to nurse. I was offering the unaffected breast first but before long I realized that I would sit down and just offer whichever breast felt fuller; just like "usual" and so it has continued...

    So, here's where our story differs -- When my milk was drained it was thick & sticky like glue but totally white so there was no infection. To me, that means it is completely sealed off so there was no way for bacteria to be introduced to the galactocele. For you, there was an infection because it drained green. If your galactocele fills up as your milk lets down and then somewhat drains out as your baby nurses, that's good! However, I'm thinking that maybe bacteria is getting in the same way and possibly keeping that infection going. That's just a thought though since you also mentioned that it's been getting redder and the first drain was green/infected.

    Had your LLL heard of galactoceles before? I talked to a few doctors (one who is the LLL go-to woman here) and 3 different LLL leaders. While they had heard of them before, none of them could give me any advice besides trying the drainage and even at that, there was no other advice they could offer. We're near Milwaukee, so even with the big-city resources, this is still something relatively unknown.

    If you ever find out more about someone who does the nylon probing, please let me know! I'd be willing to be a guinea pig for that too.

    I'm with you on the breastfeeding. I'm just so grateful we've been able to continue nursing. The "what if's" of a future pregnancy have played on my mind, wondering if it would recur with another baby but those are thoughts I just don't want to think about.

    Something else that occurred to me.... Pumping is a different type of suction than what your baby can provide. Now that you are back to nursing, hopefully that will help the pain after let down even more. The pumping after aspiration may have been more traumatic on your breast tissue than breastfeeding would have been. That could possibly be playing into the soreness? Just thoughts...

    Hopefully even by tomorrow those antibiotics will kick in. If you've been on them a few days and continue to get more sore/red, you may need a different antibiotic so mention your symptoms to your doctor when they call with the results from the biopsy.

    I hope you sleep well knowing this can be resolved even though it's so consuming right now.

    Blessings,
    Heather

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  5. Heather,

    The most helpful advice my LLL Leaders were able to offer was that I could nurse on one side. That the affected side would dry up, but I could continue nursing on the other side. Everything else they said (via email) was what any google search said. They had never met someone who had a galactocele before. Tomorrow I will go to the meeting and talk about it then.

    Good new for today. The redness and pain is starting to decrease. I think the antibiotics are finally starting to work (after 4 days).

    I started nursing my son more on the affected side. I figure, he can help to drain it and maybe work the clog out (for the past 2 months it wasn't changing in size). Or his nursing will fill it up full and painful again. I feel like it's a 50/50 chance, and we don't know what will happen, but with it so likely to fill up again anyways I might as well give it a try and keep him happy too.

    I am going to continue my search for Doctors. I will let you know if I find one. I would certainly drive/fly to another state if I could find a doctor who would do it. It seems like such an obvious and simple solution to this breast problem. I am surprised that it isn't common practice already!

    I went to the health food store today to buy Sunflower Lecithin, and they don't carry it. Did you have to order it off the internet?

    I will call a few more stores as well.

    Thanks for your thoughts and comments. It's so nice to know that someone else has felt the way I do now, and that things are getting better without surgery (I know it's not gone, but it is livable).

    I will continue to comment I think just so that as I learn anything new, it can bless other women having the same problem. I'm so glad you wrote the post you did so we could connect.


    Wishing you all the best,

    Alyse

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  6. Oh, Alyse ~ I'm so glad to hear that the redness/pain are decreasing today! :)

    Keeping this comment thread available will hopefully encourage other moms who are searching for answers and support.

    The LLL leaders in this area had never known someone in person with a galactocele either. My doctor said she had seen small ones before but never one as large as mine; not sure of the bragging rights on that one! lol

    I found the Sunflower Lecithin on Amazon (http://www.amazon.com/gp/product/B003BHZ71G/ref=as_li_ss_tl?ie=UTF8&tag=thup5-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=B003BHZ71G) but when I have purchased it in the past, it has shipped free with Amazon Prime. Currently, it looks like it is only available from outside companies where shipping is extra.

    I hesitate to encourage anyone to buy the soy-based lecithin. Poly-cystic breasts are linked to excess estrogen and soy acts like estrogen in the body. I figure, our breasts need all the help they can get by simply avoiding soy products.

    I look forward to the day you can post that the pain is gone. :)

    Heather

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  7. Hi Heather,

    Thanks so much for posting this. I recently discovered a lump in my breast that I thought was a plugged duct, but after a week of hot compresses, shower pressure, herbal soaks and pumping there was no change. When I got it checked out my OB said it was not a plugged duct, but a cyst. This was confirmed by ultrasound, and she offered to drain it right away. I agreed (I am not sure why I didn't really think it over, I think mostly because I already had child care and didn't want to try to come out to another appointment...). When she aspirated it, I was surprised to notice that what came out in the syringe was not clear liquid as she had described, but a thick white gluey substance. I commented on it, and she too was surprised, and said it must have been a plugged duct after all.

    After some research, I am pretty certain this is a galactocele. Just a few days after the aspiration the lump is back, except now I am sore from the aspiration, where before it was only uncomfortable with pressure. I have also started lecithin, and of course got the soy kind (again in a rush and not really thinking!), but will be switching to sunflower, especially as I have suffered from hormonal imbalances in the past.

    I am also frustrated at the lack of information on this topic. I'm currently seeing an acupuncturist (and taking chinese herbs) for some pretty wicked PMS symptoms that surfaced a few cycles after my period returned. It has been helping, so I plan to ask if acupuncture might help, it seems it can sometimes help with mastitis, so maybe it will for this too...

    And I feel you on the stress. Lately I feel like I reach boiling point most days, several times in fact. My son is 17 months (similar age!) and I feel that between caring for him and working on my grad school studies, there is less than zero time for me. Sigh! Working on that.

    Anyways, just wanted to join the conversation, and pool any info we all find! Many things for starting this! :)

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  8. Hi Monica ~

    So glad that you found our micro-support group here.

    Anything we can learn from each other can only help. :)

    A 17-month-old is a lot of work. I've often considered going back to school for a graduate degree but then think I'd go crazy trying to work that into a schedule. lol

    Your little one will be in grade 4 (our oldest) before you know it so savor those baby moments while you can. I admire you for your determination to work on your grad studies. I remember my husband was doing that while our first son was a baby and it was a lot of work. You can do it, but make sure you do something to relax in the midst of everything! :)

    We have 4 children, with the older 3 being homeschooled. The stress I allowed to build up in my life last fall (moving to a new area & trying to sell our house) is what I believe played a big part in my breast cyst/galactocele forming. These days, trying to keep our toddler content and our other children focused on school are the things I continue to give back to the Lord. He has to be my strength because there is no way I could do this on my own.

    Hopefully others with galactoceles will find their way here since information on treatment is so hard to come by. Sometimes it is just reassuring to know that there are others dealing with similar situations who can understand each other.

    My period still hasn't returned which isn't "normal" for me. It returned around 9 months after each previous pregnancy and breastfeeding has been about the same with each child so I'm not sure what's going on there. I did a saliva hormone test but haven't received the results back yet. I don't know if the two are associated or not. It will be interesting to see if they could be though.

    Must run -- supper to start and geography to finish for the day. So nice meet you! :)

    Heather

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  9. Hi ladies! So glad I found you as you know there isn't much out there on this topic. I'm on my 3rd week of dealing with this, first mastitis, antibiotics, draining and I just drained again with only milk coming out so they are calling it a galactocele. It's already filled back up mostly and it covers about half of my left boob. Luckily it doesn't hurt.
    I'm just curious what you all are doing with yours? Has surgery come up? Have you just accepted it as part of your body for now?
    I'm only 10 weeks in with my baby girl and have years left of breastfeeding!
    I did do 4 sessions of acupuncture which did seem to help me get more milk flowing around the mass and it seems softer, but never the less still there. Now that we have a better diagnosis im going to as my acupuncturist if anything can be done and im also going to talk to an herbalist...
    I'll let you know what I find soon!

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  10. Hi Morgan ~

    Congratulations on your new baby!!

    Just nursing baby here before heading to bed, so I can type till he is sleeping. :)

    Mine is in my left breast and for size-sake, I'm a 34D/36C. At present, the galactocele I have is ping-pong ball sized. However, in the spring, it was a significant part of my breast. It got to the point where it was distorting the areola and very obvious externally....painfully so.

    Monica (above) said she also sees an acupuncturist. I might look into that. What does your acupuncturist do and what is it intended to accomplish? I look forward to hearing more about your experiences with that.

    I tried to get into a naturopath in our area but she is booked several months out. Since I don't have the pain anymore, I've been less inclined to book an appointment with her, but maybe I should make an appointment anyway. The traditional doctors didn't have much to add to what I had already learned online and the draining was a flop.

    It would be interesting to hear what your herbalist suggests.

    I've just accepted it as part of my body. It did take several months to get to that point though; a foreign invader. Surgery was an option but the surgeon told my doctor it would be best to do so after breastfeeding was finished... meaning stop BF now to do the surgery. I'm very much in favor of protecting breast tissue from unnecessary physical damage so I prefer not to do the surgery.

    My thought is that when I am done breastfeeding and the milk stops being produced, I may have it drained one "last" time so it won't fill up again. In doing so, I would hope that the duct would collapse on itself and would hopefully not function again for a future baby (or would start working properly again). That's a lot of "hoping" and best-case scenario thinking but without any case studies to read, it's just a guess at what could be done.

    Glad to have you sharing you situation with us.

    Will talk to you later... Good night!
    Heather

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  11. Hi again, Just wanted to give my update... I went to see a breast surgeon today as a last effort to find out what to do/not to do about my galactocele. The doc was great and even though or because my mass is so big she said she wouldn't consider surgery as an option since I'd probably have to deal with a milk fistula, which would be lame especially since I'm not anywhere close to being down breast feeding. She didn't recommend that I do anything but just let it be and if it becomes infected again (get's red and painful, not necessary flu like symptoms) then I'd have to treat with antibiotics and possibly drain again to get the pus out from the infection.
    I'm ok with this prognosis, it does suck, but the galacatocele doesn't hurt me and I'm producing just as much milk as I was before- which isn't more than 2 oz. Thank goodness my other boob is a big producer!
    My acupuncturist is still hopeful that we can get it to drain so I'm still going that route as I'm still hopeful too, but if it just becomes a part of me then I guess that's fine with me.
    The doc did say this is more common with 1st babies and usually boy babies (although I have a girl). and that the chances are great that it wouldn't reoccur with my 2nd baby... which seems to contradict what I read online.
    Anyways, hope this is helpful to someone and if I can clear it up with acupuncture I'll definitely let you ladies know!

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  12. I have a 2 & 1/2 year-old galactocele. It's hard and dried solid. I mentioned it to my old obgyn when my son was about 6 months old, but she said it didn't sound like an infection so there was nothing she could do about it. I kept expecting it to drain on its own but it never did. Cut to last summer: by then I had pretty much accepted the lump as a breastfeeding side effect and didn't think much about it, until my exam with a new obgyn. He sent me to have it x rayed. I gradually weaned my son over 4 months, ending mid may but the lump was still the size of an egg. I went to have it aspirated last week, but there was almost no fluid left to drain. Yesterday I had a biopsy where they went in with a larger needle and stronger vacuum. They were able to get about half of it. Now it looks like a giant comma on the top inside section of my breast. I want to breastfeed in the future but the milk production node is completely blocked. She said she was able to break it up a little bit but not remove it all. I wish there was some sort of fluid that could be injected to soften/dissolve the lump so it could be drained more easily. Sorta like dish soap for your ducts. Maybe something like saline--hey, I think I may have just had a scientific breakthrough! Anyway, it looks like I will have to have another one to try to get the rest. Going to check with my obgyn for a surgeon referral, ask about alternatives to possibly damaging the duct walls (like my cleanser idea!).

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  13. Our 2-year-old is now officially weaned so I have to figure out what to do next. Reading mynameismandab's post was the push I need to make a decision soon.

    My galactocele is 1 year and 7 months old. The only time I had it drained was in the spring of 2011 so over a year ago. Since it filled up so quickly after aspirating it (what an ordeal that was), I made the choice to continue breastfeeding and wait until I was done breastfeeding to decide what to do. Now that I'm there, it's that looming decision to figure it all out.

    I'm far from trusting what many doctors have said but I've heard it said many times that my tissue/body would likely reabsorb the milk after my breasts stopped producing milk. Since it has remained a solid hard mass this entire time, I don't see how that could possibly happen. After reading this (above) post, I really don't believe it. I don't know how much liquid is left in mine but assume there must be at least some.

    What I don't know is whether to leave it or not. I'd like to know what the future problems could be if I didn't do anything vs trying to have it drained again (and if that would be more detrimental to just leaving it. I don't like the idea of having my breast prodded so much with needles. Breast tissue is a whole different story than other parts of your body. Damage it enough and what happens then?

    Mynameismandab, what was your reason to have it drained now? Is your reason out of concern for future breastfeeding or do you feel the need to have it removed for other reasons? Did you wean because you wanted to at that time, or were you feeling like you needed to wean your baby to take care of the galactocele.

    I'm thinking that if you were able to successfully breastfeed this baby, you would be able to successfully breastfeed a future baby as well, regardless of one clogged duct. Just my thought though...

    Hope to hear more about your experience as I try to figure this whole thing out too. Thanks for sharing with us.

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    1. Re-reading my post, I just want to clarify ~ When I said, "I don't believe it", I was referring to what the doctors have told me. I do believe the poster's story!

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  14. Hi to all my galactocelish sisters.. My name is Shira, and my daughter is 6 weeks old. I just came across this blog, I figured I'll share my story too, to help anyone else with the same issue.

    I found out about my galactocele a few days ago. The past 3 weeks was terrible! It started with a small lump, that became large and soar overnight. Based on the information I found online, and also based on an LC who saw me, I figures it was a plugged duct, and basically tried all the methods - the easy ones, and the very painful ones, but nothing helped - the lump would drain, and then would fill up again. How frustrating! After about a week the lump became red and hot, so I went to a doctor who put me on antibiotics. It helped reduce the inflammation, but the lump remained. Then I went to see our LLC-Guru here in Israel, she is also a doctor, who sent me to do an Ultrasound test. The results just came in with the galactocele diagnosis. And here I am..

    I will get a second opinion on the ultrasound, although from what I read here, your descriptions match my situation perfectly. So no real hope there..

    The LC-Guru said that usually women with galactocele choose to breastfeed from one side only, and then the lump gets absorbed and disappears. From what you wrote, I can see that this is not always the case, which sucks.. :( For now I'm nursing on both boobs (my galactocele is on the left side), it hurts a bit, but I can live with it for now. I hope it doesn't get bigger.

    I'll keep you updated if anything new turns up.

    And thanks for sharing! Hearing the stories of other women really helps to deal with this.



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    1. Hi Shira ~ Congrats on your newborn daughter! :)

      I considered the one-side option too but wanted to nurse for an extended time and didn't feel I'd have enough milk to only nurse from one breast. Maybe it would have been okay but that's just not the route I chose.

      For what it's worth, I was told it would reabsorb after nursing as well. I stopped nursing last June (2012) and I still have it. *sigh*

      I've just learned to live with it but am always open to learning something new. We would like to have another child; not sure how lactating again would affect the ping-pong ball sized lump I still have though.

      It has been awhile since I looked into it, but there is an herb you can take (carefully) that aids in drying up milk supply. If you did want to nurse one-sided, you could take that sparingly to keep the left side galactocele from potentially increasing in size while you continue to nurse on the right side. You have to be careful not to use too much though because you DO want to keep your milk supply on the right. There is no guarantee the galactocele will reabsorb either though so it's a choice you will have to make.

      One thing I do know is that when mine was drained (while nursing), it just filled right back up again with the next "let down" because it still had no where to drain. Makes perfect sense but the doctor and ultrasound tech convinced me it was worth a try...an expensive experiment that didn't work for me.

      Would love to hear how you are doing/what works/doesn't work for you through this journey.

      God bless you and your baby! :)

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  15. so here i am waiting for my 2nd USG report for the lump i have (apparently galactocele) and i came across to ur post. the lady who did my USG both the times, keeps insisting me for an FNAC though she tells me again and again that the lump is not looking like a malignant one. But my OBGYN didn't prescribe me any FNAC after my 1st USG. Yesterday I had my 2nd USG done (report due today) and the lump is looking exactly same like it did 2 weeks ago.

    I am confused, if my OBGYN asks me to do an FNAC i will do it, but what if she doesn't?

    why there's so less information about galactocele?

    It seems like as if medical science has yet to explore this thing :P

    anyways, i am really eager to know about you, what happened later, what did you do, how are you doing now?

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  16. what happened after this? please share your experience, as i am likely to have one.

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  17. Hello, Ladies. My LLL Leader guided me in this direction now that it has been confirmed that I too have a galactocele.

    I discovered a lump in my left breast about the second week of January 2014. Thinking it was a clogged duct, I did all of the usual tricks to try to get rid of it. When it didn't go away, I called my OB for an appointment. She saw me last week for my yearly exam and checked it then. She referred me to the cancer center to get a sonogram. My sonogram was today, and my diagnosis was the galactocele. It is about the size of a golf ball and right above my areola. At the moment, it does not hurt. Sometime I get sudden small sparks of pain, but never anything lasting. The doctor offered to drain it (but I had remembered my husband saying that while reading on a possible diagnosis for my lump during my month wait to see the doctor that draining it wouldn't work and would just make it hurt) so I declined. I was told to contact my doctor if it got bigger or started to hurt, because then they could drain it if I wanted.

    I was happy that my diagnosis wasn't cancer, but I didn't realize what it truly was until reading your story. It is disheartening to realize what I have and that there isn't any promising leads to getting rid of it. I am in no way ready to wean, as my son is only 5 1/2 months old. He is my first and I would like to have another child some day. I am thankful that what I have isn't cancerous, but I am now sad to know that it won't go away... as the doctor today lead me to believe. All my husband has to say about it is "hey, at least you don't have cancer."

    Anyhoo, pity party over. I will look into the sunflower lecithin. My Grandmother owns an all natural and herbal store. I will also look into removing gluten from my diet. I actually removed all gluten from my diet for 6 months in 2012 before I got pregnant, and felt great after doing so. Why I went back to consuming it, I have no clue.

    I wish there were some way the solid parts of the milk in the galactocele could be dissolved so it could drain, or that the plug could be removed like a plug in a bath tub, and everything could just drain out. All of the breastfeeding books I have read said that with clogged ducts, you can add the heat, nurse or pump often, and the stringy milk will come out... why not the same for this? I don't mean to sound negative... I just found out my diagnosis today and I suppose I have not come to the point of acceptance yet =(

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    1. Read my post below - 3-1/2 years later mine isn't noticeable or bothersome so there is hope! I'm also expecting another baby so I'll post about how that goes at a later date. Hoping and praying it doesn't start up again but we are excited about our little bundle of cutie-pie regardless! :)

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    2. Update on my story. I got pregnant with my daughter when my son was 11 months old. We nurses through the pregnancy, despite my milk drying up at 16 weeks. My galactocele seemed to also dry up with my milk. It never came back when my milk came in with my daughter, who is now 6 months old. I am nursing her just fine and I do t have any pain and can't feel where the galactocele was.

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  18. Hi! I was wondering if you still have your galactocele now? I thought I had a plugged duct and then it just stayed a fairly non painful lump for a month. I got concerned so I went to my PCP and she recommended a breast ultrasound and so I got that done and they said that on screen it looked like a fibroadenoma or a lactating adenoma and that I should get a core needle biopsy done. So I had that done and now they are saying they don't really know what it is, but that its not breast cancer and not a fibroadenoma or lactating adenoma. So I asked them about it being a galactocele and they said they didn't have any experience with breastfeeding breasts and it seems that no one really does around here and I'm in the Seattle area, so you would think that someone would have some experience with this. I really do think its a galactocele, but I don't know for sure. Anyway, just wondering if yours ever dried up. Thanks!

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  19. Just wondering if your galactocele ever dried up?

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  20. Sorry for the delay in responding, ladies! I haven't posted for some time and didn't think to check for pending message requests...

    I have to "feel" for where the used-to-be-huge galactocele is these days. I forget about it unless it comes up somehow. For no apparent reason, I will sometimes have completely manageable twinges of pain in that area of the breast (but infrequent and I can't remember the last time it hurt). I'd say it's more sensitive in that area than anywhere else but nothing that is bothersome. I'm not sure if it is partially calcified or if all milk was reabsorbed. Perhaps there is just scar tissue left in that area? I still rarely hear of anyone knowing anything more than I originally knew about galactoceles, sad to say.

    We are expecting our fifth baby soon so once the "milk factory" begins again, I'll know more about lasting effects on a subsequent pregnancy/breast feeding.

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  21. Hi there. I've been visiting this page once in a while hoping to get some updates, and I can so relate with everyone's stories here about galactocele. Mine is already 2 years and 7 months and sad to say, it is still there.

    The first time I had it checked was when my first daughter was 4 months old (by the way, I started noticing this lump after I gave birth so I assume that it only appeared when my baby was born).

    My surgeon had it aspirated and got only pure white fluid, which confirms our diagnosis of galactocele. Unfortunately, since we all know that we’re dealing with a blocked duct, apparently, it filled up again at the next letdown. And so, I ignored it for a while and thought it would be best to wait until I have weaned before having it aspirated again. I’ve waited for a year, but at that time, it is already hard solid. My surgeon tried to aspirate it but the needle can hardly get through the solid mass anymore. Just to be certain, the samples collected from aspiration were sent to the lab for biopsy. I even doubted whether it is indeed a galactocele or something else at that time. I even doubted whether we hit the right lump during the first aspiration. Though nerve-wracking as it was, I’ve waited for the biopsy result. It turned out to be negative, so I’m quite relieved (thank God!).

    Anyway, I still don’t know what to do with it right now. I failed to mention earlier that I was about a month or so pregnant during my first daughter’s birthday, so doing the math, you’ll know that I already have two at this time. My youngest daughter just turned one last month and she was exclusively breastfed.  I still have no plans of weaning until she turns 2 I think so I guess I’d still be dealing with this lump for a year or so.

    Later on, I plan to consult a breast surgeon, hoping to get some more useful advice on what to do with this lump. I was also hoping to avoid surgery if someone could advice that it is not necessary at all.

    There goes my story. Hopefully I could give more updates when the time comes that I have completed weaned and decided on what to do next.

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  22. Hi ladies! I am so appreciative to have found this. I have been SO STRESSED for six months over my galactocele. I had an apiration at the beginning of this month. I feel as though it has tripled in size since. There's also pain associated with it. So I went to a breast cancer screening and prevention clinic. They want to drain them both (apparently I have two right next to each other) on tuesday. I am so torn on whether or not to go through with it. No one seems to be able to give me comforting info regarding the draining either. They did say I would have to not breastfeed for 48 hours on that side. I feel like that may cause an infection or mastitis. This breast has always been the lumpier one. I have been nursing for 24 months now. Six months ago I noticed the lump. My right one has always been the more sensitive breast between the two of them as far as getting mastitis and engorgement. Anyway, I don't want to go through with the draining if it is just going to refill immediately or fill up even more. What would you recommend doing?

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  23. Hey heather. Any updates now that your are breastfeeding again? I had a huge galactocele with my first that didn't go away until I weaned on the affected side. I'm now pregnant again and can already feel a mass growing again.

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  24. I found out today that the very firm large marble-sized lump I have is a galactocele. The doctor acted as though this thing is going to go away on its own, so while of course I'm relieved I don't have cancer, I'm none too excited to find out that I may be stuck with this thing. My baby (third) is 6 months old and we have no more planned.

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  25. Hi Heather, so glad you started this thread. Congrats on your new baby! Any updates from there?

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  26. Yes! I just posted an update yesterday. :)
    http://www.ourstoryhour.net/2015/03/encouraging-galactocele-update.html

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  27. How long exactly did your galactocele take to go away? My daughter just turned 1 and mine is still the size of a golf ball. I had it drained once but like you, mine filled right back up within a day or two. I'm going to have a checkup this week but no one really understands these. It's very frustrating! My daughters pediatrician kept guilt tripping me about trying to massage it out when she was little. I was so depressed about it.

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  28. Here is my latest update: http://www.ourstoryhour.net/2015/03/encouraging-galactocele-update.html?showComment=1447918436540#c838289488025466295

    Believe me, I tried to massage mine "away" but all it seemed to do was make it more sore and inflamed. Don't feel guilty about that; it's the nature of what a galactocele is. In the above update, I wrote down different supplements that I've used that have helped me. I used (and still use) Wobenzym and Pau D'Arco for helping with inflammation. Keep us posted if you'd like to update. (hug)

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    1. Here is the correct link:
      http://www.ourstoryhour.net/2015/03/encouraging-galactocele-update.html

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  29. Hi ladies, I've been visiting this site frequently the past 6 months. I have an almost 10 month old, my first, and noticed my galactocele at 4 months. It's 2.5 cm and is at "2 o'clock" on my right side. I'm in NYC and was referred to a breast surgeon who is knowledgeable about the lactating breast specifically. I had a sonogram which was read incorrectly (by another doctor) and was initially diagnosed with a lactating adenoma. I had already been to this site though and felt strongly that it was a galactocele. A week later they had me back for a fine-needle aspiration. They took three samples and on the third one the pathologist in the room said "it's milk!" and I practically shouted "I told you it was a galactocele!" Yesterday I saw Dr Debra Axelrod, the specialist. She said it will have to come out. I have to wean my daughter, give it a few months to see if it goes away, and then if not, have surgery. I negotiated the weaning til May, with surgery in July if needed. And i can't try to get pregnant before it's gone/out. Sad to have the weaning date set for me instead of letting it happen organically. Also of course I don't want to have surgery! May seek a second opinion, though I doubt there's another lactating breast specialist, even in NYC.

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  30. Hi Megan! I really hope they haven't done surgery on you!! Mine disappeared after weaning the affected side and I still was able to breastfeed for several months after. Baby choose to wean off that side because the supply and let down was crap so I think some people can continue both sides. Now I'm nursing my second baby. The galactocele never really returned but neither did a decent supply so again I'm a lopsided breastfeeding mama.

    Send a note to Jack Newman if you need some assurance. He is the breastfeeding guru dr and assured me it was no big deal to continue nursing. I assume yours is like mine and painless.

    If the lump is still there after weaning.. then I would consider surgery. If you need any more support, you can post on this babycenter post since this blog comment form doesn't get approved very quickly by the original author.

    http://community.babycenter.com/post/a28509967

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  31. Hello everyone, I'm back to update after receiving an email update about this post.
    So.. It's been 3 years I wrote here for the first time. I'll recap all I remember, in case the info will be useful / encouraging to you. I know your stories were extremely helpful for me, so this is my way of "passing it forward".

    If I recall correctly, after discovering the galactocele, I kept breastfeeding from both sides for a few months, and then, as I returned to work, and started pumping regularly, I continued breastfeeding from the right side (mine was on the left), but kept pumping from both sides. I eventually stooped pumping at work when my daughter was 1.5 years old. (I actually like to pump at work , it was a 30 minute break where I can run all my errands and have some quite time to myself ;)).
    I didn't stop breastfeeding though, I kept it on , just from my right boob, up until the age of 3. (I loved it! Best qaulity time ever).
    During that time I was in constant tracking of a doctor, who monitored my state. The galactocele kept shrinking in size, until it became unnoticeable.
    I recently did an MIR and Ultrasound scan (I had pain in my breasts, and I;m not taking changes anymore, so I took every possible test). It appears that it is still there, but very small (5 mm is what I was told).

    So, long story short - the galctocele shrunk on its own, no surgery or nothing. And I wasn't told at any point that it would be a problem to get pregnant because of it.

    Hope this helps!
    Shira.





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  32. I know this is many months after the last post- I certainly hope someone is still here as I would love to find some mamas with experience. Just went to the breast specialist today after having a lump the size of a TENNIS ball for over 4 months. I was told it's a galactocele. He suggested waiting until I am done nursing and then aspirating it, but from everything I have read that seems like a process that would have to be repeated many times. In all honesty, I would rather the option of surgery be available to me as the lump has made my breast over twice the size. I know that sounds like a shallow concern, but it's there nonetheless. I plan for my breastfeeding journey to last at least a few months longer, but feel anxiety about comes after it ends.

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    1. Alyssa what happened with you? Mine is also the size of tennis ball - had it aspirated a few times but that stopped working (did get slightly smaller, very slightly). I also want surgery but am mostly hearing it's not an option, esp before weaning? I am so uncomfortable...can't hold baby, run, find a bra that fits. :(

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    2. I am going for a follow up breast ultrasound within the next couple of weeks and will find out what options are available to me then. I have now had thr galactocele for over a year. My son has been weaned for 6 months now, and it down to about the size of a ping pong ball, maybe a little larger...? Hard as a rock though, and showing no signs of being reabsorbed. Still feel the same about having it drained- far too many women have said that is ineffective. I hope things are better for you!

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  33. I weaned baby a few months ago and my galactocele can now be seen with the naked eye rather than felt only. It's like one of the large marbles in size. I'm still hoping it will go away on its own. I think the body takes time to clear things out.

    Anyway... yes there are people still following this!

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  34. Hello everyone,I am new to this group and I would like to ask some questions. We have 6weeks old baby girl. I found a lump in my breast about a week ago. I thought it's clogged duct, so I was doing everything to get rid of it(hot shower, massage, feeding from that breast etc. ) It didn't go away. I went to my doctor, she send me to ultrasound and they drained the breast. Unfortunately the same day after that, the lump was back again. I think I have galactocele. It's not painful, I don't have fever. Only my concern is that the skin around the lump is red. Is that normal? Thanks for reply. Veronika

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  35. I figured I'd share my story here for anyone still following :)

    I was 3 weeks pp when i started developing a lump, thought it was a blocked duct and long-story-short did all the usual treatment with the addition of ultrasound therapy and acupuncture. When this didn't work i went for an ultrasound which showed a 4*4*3cm galactocele (that was at its smallest), so I stopped treating it like a blockage. It grew and became red and even more tender and so I ended up on antibiotics, but while the redness decreased the pain didn't. I spoke with a breast surgeon who aspirated it for me today, he got 100ml of green then bloody fluid out, but made the comment that parts of mine have solidified (it's only 3 weeks old at this point!). He's sent the aspirate for testing but is pretty sure it's a galactocele. 12 hrs after aspiration my galactocele is back to about half the size it was at time of aspiration. I've been told by the surgeon that i should have it aspirated another few times and then if that doesn't work i should have surgery, but given my son is 6 weeks old I'm not keen to do that! I fed my daughter until 2.5yo, I'm determined I'll do the same for my son, even if only from one breast (that's what the majority of my feeding journey with my daughter looked like anyway as one breast gave up). I'll update whenever I learn more if I remember, I'm hoping the adoratiorepeated aspiration might clear mine up or at least reduce its size and the associated pain! Fingers crossed :)

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  36. HI all - wondering if ANYONE had the surgery? it sounds like no? Mine is in a very large breast that was already much larger than the other, and I cannot continue like this for years - no way no how. Mostly just because of the size and how much it limits my activity - I could never run again, and it strains my back so much - it feels like a giant cement tennis ball weighing me forward. It also barely fits in any bras and literally looks deformed. I just can't go through life like this.

    I was aspirating for a while and thought I'd just continue to do that regularly, but not the fluid isn't coming out anymore. :( My baby is 10 weeks and I'm not ready to stop breastfeeding (and now APPALLED to hear it might not go away when I wean anyway??!?!?!?). I am totally open to surgery if someone will do it for me (calling the surgeon tmw).

    I'm hoping they can go in, take out the tennis ball, and I can continue feeding? I don't care about a giant scar! But it sounds like no one did this?

    Aggghhhh this post and comments have me the most depressed yet about this issue! It's been 4-6 weeks now I've had it...

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  37. JK, I'm sorry to hear you are dealing with this so intensely with a newborn. Everything is more overwhelming when there is a new baby to care for while dealing with medical/health issues.
    I know it isn't necessarily a cure-all, but I was diligent about taking Sunflower Lecithin (NOT soy lecithin), Phytolacca Decandra and eventually Wobenzyme N. There is further information in this blog post: https://ourstoryhour.blogspot.com/2015/03/encouraging-galactocele-update.html

    The sunflower lecithin is supposed to make the milk more fluid (even if it does take on the consistency of glue). The Wobenzym N decreased my pain (as it deals with inflammation). I don't remember offhand the "why's" of Phytolacca Decandra, but I had read about it being helpful for galactoceles in a couple (rare) places, so I stocked up. I don't know for sure that taking these diligently kept my galactocele from solidifying, but I had it for a very long time and it eventually went away after I stopped nursing (2+ years). I just weaned the "next" baby and never had it come back (another 2+ years of nursing).
    Pau D'arco can also help with "dehydrating" the inflamed galactocele, but you have to keep an eye on your milk supply to make sure you aren't decreasing too much.

    If I understand the surgery correctly, they remove the lump and the entire duct. I don't believe you can continue breastfeeding on that side after surgery, but you would have to ask your surgeon. I know these are difficult decisions to be dealing with right now. My heart goes out to you. You're in my prayers are you. I know its painful, uncomfortable, frustrating, and answers are difficult to find. Please let us know how we can support/encourage you. ((hug))

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  38. Im sorry for any women who have to go through this terrible experience. I went through this for almost 3 months when my baby was a new born before mine turned into the size of a baseball and then I became very sick with flu feeling symptoms. It was then finally I went to the ER and told them they're is no way this is a galactocele cyst anymore. Sure enough it turned into a breast abcess and I wrote admitted for surgery the next day. They put me under and drained it and also put a drain tube in fit me to keep in for another 2 weeks. I am happy to say im back to my normal self and can take care of my baby without pain and worry. I did stop breastfeeding because my personal issue didn't allow me to continue but my baby girl is healthy and happy and so is her mama. I pray for anyone suffering. We know our bodies so please don't hesitate to tell the Dr something is more wrong. For a while I was my own Dr. Good luck and God bless you all.

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    1. Thank you for sharing your story, Amanda. Yours is a reminder of several important things. There are many cases where you truly need to be your own advocate; you were and you followed up on your gut instinct. Secondly, moms need to realize that as wonderful as breastmilk is, there are certain times when health issues arise and breastfeeding cannot continue. Your situation is one of them. Mothers cannot beat themselves up over discontinuing breastfeeding. Like you said, you are healthy and your baby daughter is healthy. :)
      Ironically, I thought I had the flu twice over the 2+ years of dealing with my galactocele. No one else in my family got sick though. Both times I got sick were times when the galactocele was at it's largest and both times, getting that sick "dehydrated" the galactocele back to a much smaller size that didn't cause excessive pain/discomfort. I assumed at the time it was the flu, but now I am more inclined to think it was my body's reaction to dealing with the inflammatory intruder.

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  39. Thanks for the updates/new comments. Just to update you on mine...the surgeon told.me to wean on that side and then have it drained, so that hopefully it wouldn't fill up again. Well I did as told and had it aspirated today - a month since I last got milk from it. They took out 435 CCs!!!!! That's 14.7 ounces. Well now it is 8 hours later and it is definitely filling up again.

    So depressing. I honestly live breastfeeding despite these months of torture and I really don't want to stop (on my good side). Baby is almost 5.5 months now and I'm so sad as it doesn't seem I have many options now.
    Alas there are many things to be thankful for, like my healthy happy baby boy. Here's hoping no one else's gets as big as mine!!

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    1. Continue to be thankful for what you do have in that precious baby boy! So sorry to hear that it's filling up again. That happened with me as well. Frustrating that the doctors push aspiration like it will be the perfect solution when, in most cases, it fills back up again. Perhaps if you continue not nursing on the galactocele side, it will progressively produce less milk. Even if it comes to draining it again, maybe it will fill up more slowly as time goes on...or eventually stop filling up (ideally) since your nursing is discontinued on that side. (hug)

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    2. Oh jk, this is awful :( How regularly has your galactocele been aspirated and have you had the surgeon rinse it out with saline at all? I honestly think this was the thing that helped mine resolve and stop refilling. Additionally, you can continue to breastfeed even if you have surgery on that breast, particularly if you've weaned on that side anyway! I really hope you can find something that works for you, what an ordeal you've been through. Hugs!

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  40. An update as I just got a notification that jk had posted here :)

    So I ended up having my galactocele aspirated a total of 5 times, the first time was 100ml of milk/green fluid, the next was 45ml of bloody pus, then 25ml of bloody pus and milk, then 10ml of milk and then, finally, just under 5ml of milk and a bit of blood. Throughout that time I was on antibiotics as my galactocele became infected. I highly recommend seeing a breast surgeon or at least a specialist, that made all the difference for me! He was so fantastic and continued to support me in breastfeeding, but also suggested other alternative options if the repeated aspiration didn't work (including inserting a drain so that I could drain myself and surgery). He commented that mine was one of the worst he'd seen and that he sees around 10 a year (so I felt a lot more in safe hands than the multiple GPs I saw that had never seen it!).
    I think the thing that needs to occur to stop the galactocele refilling is for the 'plug' to be removed...there are some research articles that talk about nylon probing whereby the plug is removed and this is supposed to fully resolve the galactocele, but it's not a commonly used method in Australia (https://www.ncbi.nlm.nih.gov/m/pubmed/12757066/). Instead, I asked my surgeon to 'wash out' the galactocele at my last appointment which is actually his standard treatment (and he has a lot of success with this). So, on top of the repeated aspirations 2 days apart, which the surgeon said is imperative for its resolution, you can also get the surgeon to 'wash out' the galactocele with saline solution. This felt really quite odd, but it dislodged all of the hard lumpy bits that were in my breast and I think amongst all that it must have also removed the 'plug', because mine didn't fill up again after that at all!
    I really wish anyone going through this all the best. My galactocele was finally resolved around 2 months post partum and hasn't returned in the last 5 months, thank goodness! Repeated aspiration with the wash out at the last appointment worked for me, I hope that's the case for anyone else reading this thread.
    Much love and light on your breastfeeding journey, even if that involves feeding from one breast, continuing to feed during surgery (which IS possible provided you find a supportive breast surgeon) or weaning. Hugs!

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  41. Hi all,
    It is heartening to find a source of information here. I've had a rough start to my post birth experience, beginning with a breast abscess on my right breast at 11 week post birth. It was a very painful and horrific experience having two holes drilled and tubes hanging out for a week to drain the pus. I was diagnosed with MRSA infection and was on strong antibiotics for three weeks. I had to stop breastfeeding because it was just too much trauma than I can handle plus with medication and all, I was literally in so much pain that i was in pain killers 3 times per day. I had to overload on Vit C, garlic pills (to build up my immune system, probiotics to counter the antibiotics, silica 60 and a homeopathy medication - Myristica debuggers C30 to counter the strong infection. Daily pus management was 1-1.5 hrs of squeezing the boobs, cleaning and disinfecting. It took all of 8 weeks before all the pus drained and completely healed. The wound and scar tissue will take a much longer time to heal, sadly.
    Then, just last week (10 weeks after I first had breast abscess) I felt sporadic sharp pains on my left breast. Feeling uneasy because of what I had gone through, I went to the breast specialist again to have an ultrasound done. She found a 7 by 4.5 cm of 'lump' in the area that was painful and aspirated a small amount of semi fluid milky substance for lab test. I don't know what it is but I'm thinking it sounds like a galatocele. What is bizarre is that I've stopped breast feeding for 2.5 months, so I never expected my boobs to suddenly show signs of pain and more lactating issues. Perhaps I didn't empty my breast fully after I stopped bf? But if it's like a reservoir with no connecting ducts (as my doc puts it) then how is it supposed to be drained through the nipple? I can imagine it drying up on its own but given the large size, it will take ages wouldnt it?
    It's a relief to be able to share our experiences and find comfort in what some of you have gone through. I'll update this site once I've got the lab test back. For now, to prevent an infection, I'm taking Loads of Vit C and the whole works plus reducing stress in my current state. I'm v certain stress adds to hormonal imbalance which in turn plays a huge part in both my experiences this far.
    So to all lactating n recently post lactating mums, stay cool n take things easy!

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  42. I just spent forever reading through all of this - so thankful you shared your story, Heather! There's so little out there about it which is hard for me. Mine is huge and painful :/ but if I don't have to do anything about it I would rather keep nursing and cope with the pain. Does anyone know - do they tend to keep getting bigger and worse if they aren't drained or not necessarily??

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    1. Jen, please see the comment from Shira below, which sounds really promising for leaving it be! In my own situation, my galactocele became infected, so it had to be drained or else I would have been on antibiotics for the remainder of my breastfeeding journey (so far, 6 months but I plan on continuing for a few years!). When seeing the breast surgeon he commented that in decades past, before the use of antibiotics and draining, your body would drain itself of infections by basically enlarging to the point the skin would open and puss could drain. However, a galactocele isn't a breast abscess, so it's possible it would stop growing and maintain that size for the remainder of feeding, but in my case that really wasn't the case.

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  43. When I finally left it alone after weeks of useless manual draining, it kept its original size (large, like an egg) and did not hurt. I kept on breastfeeding for 3 years, and once I got used to it, it didn't bother me at all.

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  44. When my daughter was 8 weeks old I got mastitis and a large lump that wouldn't go away after the mastitis was gone. Got it drained (I was also dealing with doctors/midwives who had no clue what to do) and it was 200 ccs of brownish milk. The mastitis came back (I was told because of the pressure the galactocele was putting on the ducts?) and I ended up in the hospital on IV antibiotics. They drained the cyst again and it was 300 ccs (this was only 5 days after the first aspiration). Two days later, a little red pimple appeared on the side of my breast, and in the shower it burst and milk came pouring out of it. Yep, my boob literally exploded. I guess the pressure was so great that the milk found its own way to the surface. At this point the breast surgeon said I needed to stop breastfeeding, and I was so distressed by the recurrent mastitis and hospitalization (I had a pretty traumatic birth, and was having flashbacks) that I listened. We've been on formula for 7 weeks, and we are doing great! I emailed Dr. Jack Newman, as one woman here did, and he seemed to think I should have just let it be, but I don't know how that would have been possible--it was the size of my whole breast.

    All in all, I was extremely frustrated by the lack of medical knowledge about galactoceles (I was told by both radiologists who drained it and the breast surgeon that they had never seen one so large).

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  45. My galactocele is still the size it always has been and I weaned my baby a year ago. I'm sure there's nothing to drain at this point. It's probably hard as a pearl in there. I'm not sure what to do. :-( I'm grateful mine isn't as big as some others. It's like the big marbles as opposed to the small ones.

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  46. I’m still not sure mine is a Galactocele. I had a ultra sound and thy said it was a Galactocele. But to come back in a month to check it again. I went this week and it grew. I googled a ton on this lump. With fears of it being cancer. Everything i have read says only way to positively identify it is by biopsy. They should have just done the biopsy from the start i feel instead of making me wait a month. I’m still waiting on a call for my appointment for biopsy. And praying it isn’t cancer. As a mother of three having this lump has more then stressed me out. I have been trying to read people’s stories to see if thy sound like mine. My lump came out of no where. I feel like overnight. Since I️ breast feed i always feel my breast to see what side feels full. And there it was, i first treated it as a clogged duct but i felt like that made it worse. It became tender. I didn’t put off going to dr i went right away because it didn’t feel like a clogged duct. My baby girl is 8 months. And seemed weird to get one so far into routine. After first ultra sound thy said it was galactocele. I did have some relief but after more research i read it’s not for sure that until a biopsy. And Now that thy said it grew l googled and this post came up. Thy said my lymph nodes look good. And don’t think it’s cancer. Which is defiantly positive. And reading that thy can get bigger or shrink is positive for me to read. Cause there are times i feel it more then other times. It does feel Hard, i did have a burning pain in my boob too ? I didn’t read any posts on that here tho ☹️. I don’t always have that pain just sometimes. If anyone has had that burning pain and does have a galact. Please reply to my post. And any prayers 😔 that it’s not cancer.

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  47. To ease your mind, Sabrina, if it was cancer, it wouldn't fluctuate in size or appear so quickly to begin with. Knowing you are breastfeeding, how your appeared seemingly out of nowhere, and how my galactocele "acted", it sounds like the same story. As mine grew, it became more painful. I'd say that "burning pain" is fairly accurate to how I remember it. I know you feel anxious about it being cancerous, but it sounds like a galactocele. If you read through the original 3 galactocele posts and the subsequent comments from other women dealing with (or having dealt with) the same thing, I hope you will find both encouragement and helpful suggestions. If you feel you want the biopsy in a month, go for it. However, you should know it won't (generally speaking) solve the problem of actually having the galactocele. They typically fill up again. You can read more about that in my other posts (and others' comments) and suggestions for helping ease the pain/dehydrate the galactocele/manage the galactocele so you can continue breastfeeding your sweet 8-month-old daughter. (hug)

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    1. Thank you So much for your reply! I’ve felt alone on this , talking everyones ear off about my lump. Seriously thank you so much for your reply.

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  48. Sabrina, while the ultrasound doesn't conclusively diagnose a galactocele, it's pretty likely given your situation that that's what it is. Like Heather said, it's (highly) unlikely that a lump that grows overnight, in a breastfeeding mother, that causes pain is breast cancer, and a breast cancer definitely does not grow/shrink in size. If you've noticed fluctuations in the size of the lump, it's almost certainly a galactocele. My best suggestion is to find a good breast surgeon, have them take an ultrasound guided fine needle aspirate, and send it for cytology. That's much less invasive than a core biopsy, and while it's not always conclusive, it's a really good indicator. My galactocele fully resolved after repeated fine needle aspiration (FNA), then it recurred a year later, and again it was resolved by FNA. Each time I have panicked that it was cancerous, and each time it turned out not to be. The breast surgeon reassured me that it is very rare for a breastfeeding mother to end up with cancer, though it is the first thing that comes to mind. Sending you lots of strength and love <3

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  49. I’m confused by my diagnosis of galactocele because when they did my ultrasound they said I didn’t have any clogged ducts. I saw the ob that didn’t know what was going on and sent me to the general surgeon after my ultrasound showed nothing. I’ve spent so much time crying over this and worrying if something is seriously wrong with me. The radiologist said they didn’t see anything in the area I was complaining about. But the area will get extremely big and hard when my breast fills up. I keep worrying that the ultra sound missed something. They did pick up on a benign cyst in a different area of the breast that the general surgeon is going to check again in 3 months. But for now the surgeon told me to continue breastfeeding and emptying the breast. I thought I was already doing that so it’s frustrating. It’s been tender for a bit over a week all starting when I started getting all my breast exams.

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  50. Thank you each and everyone of you for leaving your comments. I have an 8x8x5cm galactocele in my left breast, from reading all these comments it seems like it’s predominantly left breast!!
    I feel so alone and scared my baby boy is 11 weeks old is my third and last child and I was hoping to breastfeed him until he was two.
    At one week post partum I had a clogged duct which I tried to work out it kept refilling again. Then I stopped being able to express anything from it all I just kept getting bigger. I had an ultrasound at eight weeks postpartum and since then it has grown another 3 cm. Yesterday it became read and it protrudes out of my skin. I have never needed antibiotics have never had a temperature. I saw a surgeon at the emergency department yesterday who said I need to follow up with my GP and be referred to a breast surgeon. (Australia) it’s never been painful but every so often I’ll get like a pinging feeling. I have emailed a lactation consultant as I’m not sure whether I should just try and dry up that side and feed from the other I’ve always had an oversupply issue.
    Not sure whether or not to have surgery either but it looks like no one here took that option. It’s so uncomfortable even to hold my baby I really feel for every woman has to go through this!!!

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  51. Hi everyone. I haven't checked this in a while, and I"m not excited to give this update but also feel obligated too. I went to have another aspiration in late September. The radiologist saw some weird "cauliflower like" tissue on the edge of it and wanted to do a core biopsy. I said sure, completely unworried. It had already been biopsied.

    It turns out I had a phyllodes tumor. No, I had never heard of that either. It's an extremely rare type of tumor that is not a breast cancer but actually classified as a sarcoma (spreads through soft tissue). Anyway it ended up being aggressive cancer, I had 2 lumpectomies and then a mastectomy (few weeks ago) and now I live in fear and get scans every 3 months to check if it has spread. Unlike breast cancer, phyllodes tumors can grow huge and fast (like some of our galactoceles did), and they can recur even after mastectomy.

    I thought it had been biopsied 2-3 times, but it turns out they had only done CYTOLOGY - testing the fluid, not the tissue. (I think because they didn't really see tissue to test in previous ultrasounds)? But I hadn't realized this.

    This is so so extremely rare and I really don't want to scare anyone, but I also REALLY wish I had been more proactive (even though I saw 5+ doctors) and pushed for surgery, pushed for a core biopsy, pushed for something. No one seems to be clear on if it was misdiagnosed the whole time, or the tumor developed later, or was underneath the galactocele, or wtf is going on cause doctors honestly don't seem that awesome.

    Anyway, baby is 13 months and perfect and I'm still doing a morning feed on my healthy breast. I knew my situation was not normal - do what feels right for your bodies ladies! Keep well.

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    1. I'm so sorry to hear all that you've been going through. Thankful to know you found out what else was going on even if you still don't have all the answers. I've never heard of a phyllodes tumor before! I'm going to have to look it up/read about it. One of the most frustrating things about "healthcare" is pushing/asking for particular testing to be done (usually based on our own research!) and have doctors choose to do something else that would follow standard procedure. If I'm paying for my healthcare, I should have a choice in deciding what testing I want done; I'm paying for it! Thank you for making us aware of the fluid testing vs testing fluid AND tissue; both should be options. And, thank you especially for coming back here to share your update. I hope that the more we share with each other, the more information will be out there for other moms who are dealing with these same issues. May you find peace in the storm, seeing all that you have already been brought through, jk.

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    2. JK I am so sorry you have gone through this. How are you doing now? I too have a galactocele diagnosed by ultrasound and my baby is 11 weeks. It is as big as a tennis ball as well. I’m very worried it could be some type of cancer but of course everyone keeps telling me I’m crazy. Do they think the galactocele and all of the trauma it put on your breast tissue caused the cancer? Or are they thinking the cancer was there already and caused the galactocele? Because it seems crazy that they wouldn’t have seen it on any of your other ultrasounds when you were having it drained

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  52. Hi everyone. I’m so thankful to all those who have shared their experience… My story is still on-going but I would like to share it in hopes that whenever my galactocele is finally resolved, someone might relate and possibly find and end to theirs as well.
    My LO was born in Oct 2017 and is now 7mo. My issues started 2wks PP when I first got mastitis in my left breast. I was treated and then, two weeks later, diagnosed with mastitis for a second time, after getting all of the same symptoms back. I was put on a different 7-day antibiotic. I noticed firmness and tenderness in the months following and so my OBGYN recommended I try Therapeutic Ultrasound for the “clogged duct”. No improvement after the treatment, but she recommended I try it one more time and if it did not resolve, I should go get an Ultrasound done. It did not work and the massaging they did along with it just made things way more painful and gave me body aches in the days following.
    In Feb. 2018, I went in for my first Ultrasound. They did a fine-needle aspiration and removed 26 CC’s of fluid. I had a 5.7mm abscess. I was put on antibiotics for a THIRD time and referred to a breast specialist. Two weeks later, it was back and they removed 50 CC’s of fluid and it measured 6.7mm. Everyone was shocked that it came back even larger. I was put on antibiotics a fourth time, this time a 10-day. I was hoping they would run their course and that this would go away… I was told there was nothing they could do to stop it and I was just “unlucky”. The ARNP said that the only cure would be to stop breastfeeding. I decided if it got infected one more time, I would consider weaning.
    By March, the “lump” was back but was not painful, just annoying. (At that point, I didn’t even know what to call it) I made an appointment again with the ARNP in the breast specialist dept. because I just couldn’t believe that there was nothing anyone could do. I could tell it was slowly getting larger. I got the same advice – no treatment available and until I weaned, I would just have to leave it alone since it was not showing signs of an infection. I felt silly for going in and just accepted that I would have to deal with it.
    Flash forward to April… it began to grow and grow and grow… I became VERY lopsided. A couple of weeks ago, I began to get body aches again and it became tender. I realized that this thing was getting HUGE. I mean 3x the size of my right breast and literally looked like it was about to pop. There was NO telling where the galactocele was anymore because literally my entire breast was firm and just plain ENORMOUS.
    I got in for an Ultrasound again after realizing how serious it had gotten. That was today, 5/4/18. Here is the CRAZY part -- THEY DRAINED 550 CC’S. That is 18.5 oz!  Everyone (including myself) was in shock at how it had grown so large. I couldn’t believe it had gotten so big, but I was just so used to it that I guess I didn’t notice until it was out of hand. SO PLEASE DO NOT WAIT THIS LONG LIKE I DID!
    As of right now, I’m waiting to see if the fluid tests positive for an infection. I’m hoping not. I was told that we will just more closely “manage” this galactocele, i.e. drain it again if it gets big. Naturally, that was not comforting to hear again. The ARNP said that when I stop breastfeeding it may go away, or could become a hard mass and we would deal with it then. Honestly, I’m at a loss. Every time it is drained, it comes back larger. I am taking Sunflower Lecithin daily.
    Does anyone have advice on how to wean slowly while managing a galactocele? I assume more fine-needle aspirations would be needed because, at this point, I don’t know any other way that I would “tame it” during that process. I’d love to continue breastfeeding, but that possibility seems to be dwindling. :/
    I will try to post updates on here as I go along… I am SO SORRY to all of you who are dealing with a galactocele. I understand how very, very frustrating they can be.
    ---- Eileen

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  53. Oh my goodness! That sounds very traumatic. I'm glad you are ok now. I ended up having to wean my breast with the galactocele and then I was able to continue BFing for 6 more months with my first. When I had my 2nd I didn't really produce out of that breast, so only breastfed from one. I was lopsided, but it wasn'.t terrible and I got a little padding to help fill in the small boob in my bra's and bathing suits. I did 13 months with him. It sounds like you've had lots of antibiotics so I think you'll be ok re:infection. What colour was the liquid they aspirated? Was it pretty milky?

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  54. JK oh my goodness I’m so incredibly sorry you have had to go through this. I too have a galactocele the size of a tennis ball. Baby is 11 weeks old. Do they think the cancer was caused by the galactocele being so large and causing trauma to your breast for so long. Or do they think you had the cancer and the cancer caused the galactocele? It doesn’t make sense that they wouldn’t have seen the cauliflower like mass on all of the other ultrasounds you had in the past for drainage. I’m so frustrated for you and terrified that mine is actually some type of cancer as well. However everyone makes me feel like I’m crazy including my husband who thinks I’m being a hyperchondriac

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