My Galactocele Experience
Sharing the story of my galactocele (milk cyst) that was brought on by breastfeeding, twice. I explain how I was diagnosed, the prognosis, and more.
I get emails and messages about my galactocele (milk cyst) from time to time, so I decided it was best for me to dedicate a post to direct to people toward instead of emailing them a novel. So if you don’t care at all about this topic, I don’t blame you for skipping this post. Carry on, and have a great day!
I’ll start out with the blanket statement that I’m not a doctor, this is just my experience and what I’ve been told by my healthcare providers. If you find a lump in your breast, whether nursing or not, please see your doctor.
A Galactocele is Born
My galactocele, which I typically call a milk cyst, developed in my right breast when my milk came in with our first son, Owen, back in August, 2014. I noticed it when I felt my breast. (You get rather familiar with your body during pregnancy, birth, postpartum, and nursing.) This sucker was large, at least the size of two ping pong balls. It wasn’t painful when I was just sitting there minding my own business. It really only hurt when pressure was applied to my breast, like when people hugged me.
A Pea? A Marble?
After noticing the mass and being kinda freaked out, I called up my OBGYN, and was like “Yo, I gotta see you about this.” When I saw her she was all, “How big would you say it is? A pea? A marble?” I laughed and said, “Feel for yourself.” She examined my breast and said, “Wow.” She then sent me to the lactation consultant at the hospital right away. There was hope it was just a clogged milk duct that needed some help. The LC couldn’t get it to budge by using warm compress and the hospital grade breast pump. She instructed me to go home, do warm compress (take a diaper, fill it with some water, throw it in the microwave for a little bit), massage, nurse, pump, yada yada yada. I tried that for a few days, but it didn’t work. So I called my OBGYN and she told me to schedule an ultrasound at the women’s center in the hospital.
“We Won’t Know What It is Until We Empty It”
I was 3 weeks postpartum when I had the ultrasound. It was in the middle of a weekday, and my husband, Brad, didn’t have any more days left so he couldn’t take off work to stay with Owen. So I ended up leaving Owen with the nice ladies at the front desk of the women’s center. I mean, they worked at a hospital– they clearly could be trusted. I went back for the ultrasound, and what I saw on the screen was a giant black oval. They kept calling it a mass. The radiologist didn’t know what it was filled with, so they suggested that I have it aspirated with a syringe. And let me say that this was a very traumatizing experience for me. I was 3 weeks postpartum, after a 24 hour failed induction and c-section, a week earlier I had to have a separate postpartum-related procedure done in the ER, and I was at the appointment by myself. So I did what any new mom would do– I started crying.
They were really nice and had a nurse come in, talk me down, and hold my hand. I decided to let them aspirate the mass. They numbed the area of my breast the syringe would need to travel through. Then, they inserted a giant needle into my breast, guided by ultrasound, and withdrew 50 mL of breast milk from the mass. (I couldn’t take the milk home with me. It was tainted by the numbing meds they injected into my breast and the galactocele.) There was hope it wouldn’t fill back up. But within 24 hours, it was a raging galactocele once more.
To give you an idea of the size, this bottle holds 60mL (~2 oz) of fluid.
Questionable Tissue
I had a follow up ultrasound 5 weeks later. This time they spotted some “questionable tissue” inside the filled cyst, so they suggested another aspiration and a needle biopsy to check for cancer. The needle biopsy was not the most pleasurable procedure– it’s a large gauge needle that goes in and suctions out the tissue. They aspirated 45 mL of breast milk that time. When they did the biopsy it caused a hematoma inside the galactocele. So every time I expressed breast milk, for the next week, blood would also come out– some call it ‘strawberry milk’. While this wasn’t painful, it was slightly unsettling. Mentally, I had a hard time nursing Owen and allowing him to drink my blood so I would pump and dump. But my supply started to dip so I said, “Screw it, I made this kid inside my body” and started nursing him again on that breast. Him drinking a little of my blood was totally harmless, according to his pediatrician. And I could tell when the bleeding had stopped because his stools became lighter in color. I KNOW this sounds so weird and creepy, but I’m sharing this in case someone else is going through this and is freaked out about feeding their baby breast milk with a dash of blood.
Thankfully, the biopsy came back as benign. But so did the galactocele.
You Should See a Breast Surgeon
A week later my 6 week postpartum visit, my OBGYN recommended that I see a breast surgeon about the galactocele. I saw my breast surgeon a couple times throughout the 11 months I nursed Owen. During my initial visit, she explained the galactocele like this: when your milk comes in, it’s like blowing air into a surgical glove, but one of the fingers kinks, and the galactocele is the kinked off end of a finger.
She didn’t see an issue with the galactocele. There’s no increased chance of cancer or anything like that with a galactocele. She did not recommend surgically removing it, because she doesn’t like to operate on lactating women. My surgeon explained that scarring is terrible after operating on a lactating breast, which is understandable. Her prognosis was that the milk cyst would dry up when I stopped nursing.
Nursing with a Galactocele
I was able to nurse our son for 11 months with the 50 mL galactocele with no issues. I was just uncomfortable when someone hugged me. When I stopped nursing him in July, 2015, my galactocele dried up for the most part. However, I had to go back to my breast surgeon in the summer of 2016 because there was still some milk in the galactocele. She aspirated what she could. And within 6 months or so, the galactocele had softened so much that I could barely tell it was there. I continued to see my surgeon every 6 months for ultrasounds, and I even got a mammogram once.
When I asked if it would come back with a second baby, she said it could or it couldn’t– there really wasn’t anyway of knowing. She didn’t recommend surgically removing it once I was done nursing because there would be scarring. I agreed because I still have a small scar from the needle biopsy, and I didn’t want a Frankenboob if it wasn’t absolutely necessary.
It’s Baaaaaaack
Our second son, Emmett, was born around 8AM on February 21, 2018 and by that evening, I felt the galactocele filling back up. I had kind of mentally prepared myself for it. But it came back in a slightly different location. It’s closer to the surface of my breast, and closer to my nipple, which has caused some latching issues for Emmett, but we’re working with it.
Back to the Breast Surgeon
After I got home from the hospital, I waited a couple days and decided to call my breast surgeon. When I called to make the appointment and the scheduler said, “Have you tried warm compress? Massage?” Hahahahahahaaaaa. I was all, “Thank you, but this isn’t my first rodeo.”
Since Emmett was only 2 weeks old and hadn’t taken a bottle yet, I had to take him with me because these appointments take at least 2 hours. I had the ultrasound first. And then I went back to consult with my surgeon. She recommended aspirating the galactocele (she had never aspirated while it was at maximum capacity), in an attempt to get it to collapse and go away. If she couldn’t get it to go away, she hoped she could make it smaller by collapsing a section of it. I agreed to try it, even after a woman from the front desk came back and said it’d cost $2300 out-of-pocket. Cue the postpartum-hormonal-holy-crap-that’s-a-lot-of-money tears.
Back and Bigger Than Ever
So while a nurse held Emmett, my surgeon numbed my breast, and then aspirated 60 mL of breast milk from the galactocele. Back and bigger than ever, folks!
My surgeon instructed me not to nurse or pump on my right breast for 24-48 hours. She also said we may have to do this a few times in order for it to work. I set my goal to 48 hours because I didn’t want to do this again.
I have to say that the engorgement was painful AF. Seriously– not enough frozen peas in the world. And at around the 30 hour mark, I reached down and felt the galactocele was back. I defeatedly told Brad I’d be upstairs pumping.
Going Forward
After the aspiration, I talked (well, it was mostly an emotional talk while crying kind of thing) to Brad about how I see things going from here on out. I said I think I’ll have to wean Emmett sooner rather than later– my goal with both boys has always been one year. The goal would be to wean him in November (when he’s roughly 9 months old), let my milk dry up, and have the rest of the galactocele aspirated in December before our deductible rolls over in January. Because is nursing our son for an extra 3-4 months (into 2019) worth $2,300+ to have the galactocele aspirated again? It’s sad contemplating this decision based off of money but it’s our reality. So there’s that.
Update
This post was originally published in early May, 2018. We ended up switching our son to formula in mid-May due to his cow’s milk protein allergy diagnosis and other factors. I gave it about a month for my breast milk to dry up, but I ended up going back to see my breast surgeon to have her aspirate the rest of the breast milk from my galactocele. Since then, I haven’t had any issues.
My Advice
Speaking from experience, my completely non-medical advice, is to see a breast specialist/surgeon if you have a galactocele or suspected galactocele. A breast surgeon will have the most experience because, from what I’ve learned, galactoceles aren’t that common. I got the most answers when I went to see my breast surgeon. And if your surgeon is saying they should operate on a lactating breast or you should stop nursing because of the galactocele, and you don’t feel comfortable with that, get a second opinion from a different breast surgeon. I know it’s annoying and exhausting going to doctor appointments, especially with a newborn. But if breastfeeding is important to you, I suggest seeking out all your options before weaning and/or surgery. Because you can’t really go back once those things are done.
Feel Free to Reach Out
Feel free to reach out to me via email if you have any questions you don’t feel comfortable posting in the comments. And also feel free to share your story in the comments!
I am so sorry, I developed one of these after a clogged duct with my first. Scary, gross, expensive, time consuming and weirdly not known widely (or talked about) by lactation consultants, OBs, etc. The warm compress crap is so annoying. I always tell other moms- don’t mess with stupid compresses. Clear any clogs (my milk with my first was abundant and thick) by any means possible. I was very mean to my boobs after that to avoid any more!
Sorry this happened to you. I have one on the left side, at first it was roughly the size of a chicken nugget (that’s what I called it). Now with my second child who just turned 8 months, it’s grown to the size of my fist! And it’s PAINFUL! I’m sleeping probably 3 hours at night. Dr told me to stop breastfeeding, however I know ill be in so much more pain from the enforcement, nevermind the pain from the cyst itself. I can’t bring myself to do it, but by the looks of things, it’s my only option. No one wants to aspirate it or even remove it since I’m still lactating. Wish me luck….
So sorry you are dealing with this. Nursing is stressful enough. I don’t have any experience with one but it sounds scary, annoying and uncomfortable. I just wanted to chime in that I totally understand having to plan your life around insurance deductibles. Ours is $3K with then an $6K OOP max, which you hit quickly with a baby. I’m pregnant with #2 and it was fully planned around insurance deductibles. Hope this isn’t taking away from your enjoyment of those sweet early newborn days.
I’m 61 and just had a breast biopsy so I totally relate to the no-fun part of that, though thankfully everything was benign. But when I was breastfeeding our second child I would get horrible pain on one side that kicked in about 15 minutes after he fed and lasted two hours. Given the nursing frequency of a newborn, you know this meant it was almost constant.
Now this pain, compared to childbirth? 10X worse. My doctor couldn’t find anything wrong, and I consulted with LaLeche folk, since there was no such thing as a lactation nurse around back then. They just said tough it out. When I developed mastitis I was glad because I hoped the antibiotics would clear it up. They didn’t.
Six weeks after our lad was born, I was a hot mess. I couldn’t get any sleep from the constant pain and was barely functional. My great hubby was taking care of the house and our daughter as well as his full time job. We were all pushed beyond our max.
So I weened. I felt like a total failure, but the combination of pain and no sleep was not sustainable. Our son thrived on bottles and today he’s a healthy and happy 31 year old.
The cost of formula shocked me, and put a serious dent in our budget. There weren’t any milk banks back then, but that might be a possibility for you. Our niece adopted a baby and was able to get donated milk for almost a year. Since he was a preemie with some health issues it was a real blessing.
You have to make the best decision for you, and for your family. Your little guy will be fine either way. Best wishes to you.
I had mastitis 3 times and finally developed an abscess that had to be surgically removed. I can attest that the scarring is pretty bad. But because it has to heal from the inside out, there are no stitches. My husband had to unpack and repack the wound twice a day. The whole thing was a terribly painful experience. But there was a lot of relief after the surgery. I continued to nurse and pump until my daughter was 13 months. I just didn’t produce as much milk on that side.
I had reoccurring mastitis with my last baby and abscessed one month postpartum with this one. I had an I & D, recovered nicely but with a thick scar. We also found the galactocele during the scans of the abscess. We’d been living in harmony up until 2 weeks ago when it decided to flare to the size of a kiwi/small apple. Now I’m trying to decide what to do with it.
I had it with my second son two years ago. It went away after I stop nursing. Now I just had my third 7 weeks ago and it is back.
I wouldn’t stop nursing unless it is causing pain. It is completely benign, and it will disolve after you are done.
I found your story while googling galactocele in preparation for a lactation exam! I just wanted to let you know that you can completely breastfeed a baby off of only one side! So, that would be an option for you. You can let the horrid galactocele side dry up and continue breastfeeding on the other side as long as you desire. Way to persevere through so many challenges!
This is the info I’ve been looking for! I have had mastitis, yeast in my ducts, an abscess and a galactocele so far, all within 3 months, all on the same side. I was wondering if I weaned from that side of it would all go away or if it would continue to produce some because I was still nursing.
With my first baby I had zero complications from lactating/nursing. I just had my second baby and developed a larege galactocele (if not multiple) in one breast. It took up over half my breast. I was first diagnosed with with mastitis. Long story short, after multiple trips to OB (2) urgent care (2), ER (2), breast center (2), and lactation consultant (1), I still couldn’t “clear” the “plugged duct” and ended up in the hospital for a 4th round of antibiotics (since they still thought it was mastitis) and to monitor my extremely enormous breast (3 needle aspirations withdrew 100-130 cc each time). Under the watch of hospital staff the pressure was too much and the galactocele broke through the skin. I’m currently leaking/draining through open wounds on the side of my breast as I desperately try to dry up that breast. The breast surgeon said it’s the only way it will heal.
I don’t think this is a common outcome as the doctors seemed shocked, and I can’t find anything online, but if you have this, and it’s not getting better be sure you or your partner advocate for your care.
HOLY HEEEEEEEELLLL minus the surface rupture this is me EXACTLY. I nursed for 18 months perfectly – I mean normal engorgement and some latching problems in the beginning but we figured it out and I loved it. With my second baby born Feb 16th I was diagnosed with mastitis given meds… no change… I ended up in and out of the ER 2x and had multiple Ultrasounds done with two separate aspirations… the first was the DEVIL. A general surgeon who ‘has drained many “things” tried to drain it with a 14 gauge needle well, 45 minutes and 5 puncture wounds in my breast later she collected all she could – a teeny tiny syringe worth of whitish fluid and a bunch of blood.
I was back in the ER a day later in severe pain with chills, fever the whole 9. I don’t know how I got lucky enough but a breast specialist happened to be on call – he drained 90cc from my right side! It took him all of 2 minutes. I can’t tell you enough how sorry I am you had to go through this. I get it. And you’re totally right there is ZERO information online or in person with professionals. It leaves us ppl suffering and frustrated.
I’m supposed to have it drained again on Tuesday but am wondering if I just leave it alone but continue to empty the rest of my breast through nursing if it will resolve/reabsorb without needing to be drained repeatedly. I am willing to forgo breastfeeding but am sad. My second son is only 7 weeks old.
I have already been given 3 different antibiotics :< I'm not taking anymore as they do no good for galactoceles. Why do no doctors know this?
Up Did yours heal? Mine has ruptured from the skin as well and it looks so awful. I’ve been trying to dry up my milk but it’s taking longer than I thought. I’m going on week 7 with this thing and have been trying to dry up my milk for almost 3 weeks now. Please tell me it’ll go away soon. My breast surgeon doesn’t want to operate or cut it but I’ve lready had it aspirated three times.
Holy smokes mama! I came across your post because of researching different masses of the breast since I have one currently and I exclusively pump for my son and currently 2 months pregnant. I noticed a little bead mass where I thought my milk duct was 3 months ago when I was previously pregnant and miscarried. I’m seeing my doctor about it tomorrow as I am pregnant again, like I said. My son has been having my breast milk for 14 months so I am HOPING that I have a small galactocele.. fingers crossed! Your post was really relieving to read to keep my mind at ease momentarily.
What was it?
Hello!
I wanted to share my galactocele experience here.
I traveled from Canada to Taiwan to give birth and to stay at the postnatal center there (husband’s family is in Taiwan).
About 3 weeks ago, I just gave birth by c section. Since baby was on the incubator for 2 days and I was unable to do skin-to-skin with her, she was bottle fed from birth. This led to some latching issues, which I believe contributed to the development of my galactoceles.
Shortly after, I noticed a small lump in my right breast. The nurses at the postnatal care center I’m staying at all told me to try to nurse the baby on that side and it would go away. It got worse FAST and turned into mastitis. Around a round of antibiotics, the mastitis was resolved but the lump was bigger than ever, about the size of the lemon. The lactation consultant at the center told me it was breast tissue swelling.
I decided to do my own research and had my suspicions that it was a galactocele.
Finally , my OB did an ultrasound and aspiration for me, and indeed it was a galactocele. He told me that there was no good treatment, and I would just have to try to nurse the baby on the affected side and hope it would go away. He advised against repeat aspirations because the galactocele would refill and comeback.
I wasn’t happy with this solution, and asked my husband to find a breast specialist for me. The lump was increasing on size daily. He did and we went to see the consultant for the specialist right away.
The consultant told me their doctor has done many successful surgeries on galactoceles. Basically, instead of just aspirating, the doctor uses his own special technique to collapse the galactocele so it doesn’t come back.
Just today I went to have the procedure done. The ultrasound revealed I had one large galactocele, surrounded by multiple smaller ones. It was bad!
He made a small incision (about 3-5mm I believe) and aspirated the “strawberry milk”. There was about 100ml in total!
Then he collapsed the encapsulated cavities so the galactoceles would not easily refill. I’m not sure what device he used, but he was really poking around throughout my breast. He then squeeZed the remaining milk out, which was mixed with blood.
The incision has to stay open for at least a week and I have to return daily for the nurse to do a special massage to promote drainage and prevent the galactoceles from refilling . She did one right after the procedure for me and she used a long thin metal rod and poked it around inside then massaged my breast to drain the milk. It was a bit painful to say the least . Afterwards I had IV antibiotics and pain med.
She told me that this is the ONLY doctor that treats galactoceles in this manner in Taiwan, and that women from Korea and Japan even come to have the procedure done.
She asked me if doctors did a similar procedure in Canada but I told her I had no idea.
Anyways, I hope this was helpful for anyone struggling with galactoceles.
Remember, it cannot be massaged or nursed out!!! The galactocele is it’s own encapsulated cavity, that is outside the milk glands.
If anyone is interested , I will also be happy to share the breast specialist’s info. He speaks English quite well!
I’m a Lactation consultant and would like the contact information for your doctor in Taiwan.
Hello.
I have the same problem as you had .
Please,could you give me some informations about that doctor ??
His phone number ect thank you !
Thanks for sharing your story! I’m about to have my fifth baby and I can feel my galactocele filling back up. I nursed my first babe without any problems. The lump popped up when my second was only a few weeks old (2013). Going for an ultrasound at the cancer center was terrifying! The doctor there was pretty positive it was milk-filled and left it at that.
I’ve had a baby every other year and I’ve been able to observe the galactocele growing and shrinking through all the different stages of pregnancy, nursing, and weaning, so logically, I know it’s filled with milk.
I decided to get it checked again last year. Again, the doctor was “pretty sure” it was filled with milk and told me not to worry. She told me to come back in 6 months if it wasn’t gone (I knew it wouldn’t be!) and she would try to aspirate/collapse it. Well, at that point I’m halfway through pregnancy and know it’s growing again. Everything I’ve read says aspiration won’t work, so I don’t see the point. We want one more kid, at least, so I guess I’ll just wait until I’m 100% done with babies to try and do anything. But maybe nothing, because when I wean it shrinks to almost nothing…
Anyway, thanks for sharing! I’m always scared it will somehow turn into cancer, even though that’s completely irrational.
How long did yours take to shrink after weaning?
I weaned two months ago but my Galactocele is still there about the size of a lemon
How’s your galactocele now?
Thank you so much for this! I am currently in a similar rodeo. I’ve always battled mastitis. With this baby I got the clogged duct, while lovingly developed into an abscess. I was put under to have that thing drained (just under 1 month postpartum). After the inflammation went down I noticed a walnut sized lump that turned in to a golf ball. Back to my surgeon I went and he was confident it was a galactocele. After living in harmony with my golf ball for two months, it blew up into a kiwi/small apple. It’s a third of my boob! And back to my surgeon again. He offered to drain it for me but I’m very concerned about it refillingand if it’s even worth the time and money. I went back to my lactation consultant and discussed with her and generally concluded there’s just too little I formation on these things. Do I ride it out and see what happens? Have it drained? Name it and start referring to it like an old friend?
I’m from Macedonia, my second son was 4 months old when I found a lump on my right breast. With my first son I had mastitis on that breast, but this time it felt different. It is small and hard, and not painful. I thought it was cancer and I freak out.
I want to a doctor, she first said it might be abcces and gave my antibiotics. After 4 days she said come again to see what happens. I want back and there was no change. So she said is not to wary is not cancer but I recommend you to go to the best radiologist in Macedonia, and see what she would say.
I went there most for mammography, but all she did was an ultrasound and said that it was a galactocel (8mm), only by looking at it, without any test.
She said that it would go away on its on after I stop nursing my baby.
It has been a week since I have been there, and I am still worried. Could she known that only by looking at it?
I’m currently nursing my third son and noticed a lump 2 months ago on my left breast. I went to my OB and she thought it might be a clogged duct and said let’s give it a few days and try to work it out and if it didn’t got away I could get an ultrasound. Well since didn’t seem concerned I just put it out of my mind and here I am 2 months later and the lump in there and possibly bigger. I went for an ultrasound and the radiologist said he thought it was most likely a Galactoceles but hat my doctor would most likely refer me to a breast surgeon to have a biopsy done to know for sure. When I met with my doctor she did decide to refer me and said she thought he would most likely suggest doing a aspiration and when I asked if I could keep nursing she said yes. Well I met with the surgeon today and the two options he gave me were come back in 6 weeks to see if it’s gotten bigger or I could get a biopsy but I would have to stop nursing and have my milk dry up first because he wouldn’t do a biopsy while I’m lactating because I could leak out of the hole. I chose the 6 week route but I’m confused why it seems majority of the commentators are getting aspirations and when I asked the surgeon he said if he went to do one and no fluid came out he would then have to do a biopsy. I’m wondering if I should contact my OB and get a second opinion or go ahead a wean and make sure I don’t have cancer. My baby is only 4 months old. 🙁
Oh my goodness. Do not wean if you want to keep nursing your baby. I’d 100% get a second opinion. It’s weird that the initial radiologist didn’t aspirate it. The radiologist (not my breast surgeon) actually did my needle biopsy to test for cancer while I was nursing, with no issues other than having “strawberry milk” for about a week. So I wouldn’t trust anything the breast surgeon said. Are you in any local Facebook mom or breastfeeding groups? I’d ask there for breast surgeon suggestions. Or could you call the lactation consultant at the hospital where you delivered and ask for a breast surgeon rec? And when you call to make an appointment, say that you want an aspiration to confirm that the mass is in fact a galactocele.
Question to Chelsea. Did the galactocele ever finally go away in the end?
Mine formed when I was 3 months postpartum and I nursed for 1 year in hopes of getting it out. After breastfeeding it remained, got smaller but never went away. The doctor and radiologist did ultrasounds and it is a galotocele and not cancer.
Second baby 2 years later I felt some pain in it while pregnant, I find when I nurse more frequently it gets smaller but once I go to work it fills back up, even though I pump. I do ultrasounds and they rather not aspirate when lactating. And no, heat or massage does not work. I hate when ppl say heat it out.
I ultimately had it aspirated once I stopped nursing my second child. Most of the time you just have to live with it because it’s just how your ducts are formed. My breast surgeon said they won’t operate unless it’s dire because operating on a lactating breast is difficult and with all the liquid, there’s a greater chance for scarring and a misshapen breast post-op.
Thank you ladies for sharing your experiences! There is hardly any information available about this condition so it’s comforting to hear some real life’s experiences. I developed a galactocele around 1 month ago. I’ve since taken 3 rounds of antibiotics with the original thought that I had mastitis. I was only diagnosed 1 week ago and have had 2 aspiration since. The lump continues to return even with regular breastfeeding and pumping extra milk off. I’m unsure exactly where to go from here..whether to wean and hope the lump goes down or to continue feeding through and possibly need more aspirations. The answers I have received from health professionals are all so conflicting!
Thankyou for sharing this to us. I am first time mom and may son is now 8 months old. Its already 1 month since I had Galactocele. I already dis 1x needle aspiration. For me it is not painful. (Well i am not afraid in needle) And then in evening after the aspiration, I noticed again the oval shape and i have another appointment this Thursday again to my OB to check it out. Well it is not painful. However it is just bot easy to think that maybe i already need to do needle aspiration everymonth until I do breastfeeding huhuhu😭…