Encouraging Galactocele Update

I look around each day, wondering how time can go by so quickly.  The baby who was nursing during the time of experiencing an enlarged galactocele is now on the verge of turning 5-years-old.

Since the galactocele was basically a non-issue these last couple years, even though I could feel something there still, I hadn't given it much thought.  Becoming pregnant with our newest member of the family, I thought the galactocele was beginning to grow again. Looking back, I believe it was just naturally occurring breast tenderness; changes due to pregnancy and hormones.  This baby was born at the end of last summer and 6 months later is nursing great!  And...I can't feel anything in that area anymore!

I am truly thankful and feel immensely blessed. We had two miscarriages between our 5-year-old and our now 6-month-old. Knowing our wee babies are in the loving arms of our Lord and Saviour, Jesus Christ, has helped ease the pain of their passing into their eternal home. We know we will see them again! There were days of incredible sorrow but we look ahead to snuggling their cuddly selves.

There were days I questioned how I would nurse through the same galactocele issues with these last three pregnancies, but thanks be to God; no more galactocele!  I'm learning to let go of stressful situations before they develop.  God's Word and prayer have been constant reminders of God's faithfulness no matter what the situation.

Obviously, there is no guarantee for any woman that she won't develop a galactocele or have one develop again.  That brings me to preventative measures. Nothing listed here is obsessive in nature, rather based on knowledge of what has helped in the past and reading more about the importance of nutrition. Think of these as "simple solutions". Many I implemented while dealing with the original galactocele and have kept them up. Can I say for a fact that any one or multiples of these got rid of the large galactocele I had?  No.  However, I know that certain supplements did reduce the pain and swelling.

I'm sure there are many of these that you are trying/have tried already, but here is my list:

Supplements:
~ Wobenzym N - reduces inflammation (and more) - made noticeable reduction in swelling/pain; I still take this daily. My husband also takes this (and probiotics) due to years of hockey abuse his knees have taken; works great!
~ Garden of Life Primal Defense - probiotic/HSO's
~ Dr. Mercola Probiotic (usually take 1 of these with 1 of Primal Defense in morning)
~ Garden of Life Prenatal Vitamins - have been using for years.
~ Garden of Life Organic Prenatal Vitamins - haven't tried these yet but just switching to this new product this month to see how they compare. Amazon had a coupon. :)
~ Garden of Life Raw D3 5000IU - we live up north and I can only dream of more sunlight; lab draws have shown me deficient in vitamin D.
~ Green Pastures Fermented Cod Liver Oil/Butter Oil - for now, I've switched to their Skate Liver Oil due to a baby with dairy issues but our children continue to take this.
~ Radiant Life Dessicated Liver - for me and kids, although I love liver & onions so if grassfed liver is available I love to just eat it. Yum! :)
~ Iodine
(Amazon links are affiliate links only because they're products I use and recommend)
~ Pao D'Arco - used this as an anti-inflammatory. I would steep it as a loose-leaf tea once in awhile when I was really engorged.  It can also be purchased in capsule form. This helped quite a bit but I had to monitor my milk supply as too much will reduce milk. Think of it working like a decongestant.
~ Sunflower Lecithin (NOT soy-based lecithin) ~ reduces "stickiness" of milk. When I did have an aspiration, the milk was like a sticky mass of Elmer's white glue. Ick! I no longer take this, but did while dealing with the galactocele once I realized it could help in that area.
~ Phytolacca Decandra 30C - was taking 5 pellets per day while dealing with galactocele.

Activity/Clothing:
~ go bra-less as often as possible (My only option for this is while at home but some women are able to go modestly without anywhere)
~ when you do wear a bra, NO underwire
~ get as much natural sunlight as possible for optimal vitamin D
~ try not to sleep on your stomach
~ avoid tight-fitting swimsuit, bra, etc. - anything that isn't allowing your breasts to "breathe"/lymphatic system to drain
~ avoid stress (easier said than done at times...I get it)

Food:
~ do your best to remove (preferably eliminate) processed foods
~ lots of vegetables
~ avoid soy (acts like estrogen)
~ limit sugar and grains (which I haven't done so well with ever since Christmas...)
~ organic when possible/avoid chemical pesticides & herbicides
~ learn to make fermented/probiotic rich foods -- I am still learning but I'm here to tell you that making your own sauerkraut, milk kefir, buttermilk, and water kefir are very easy! I'll try to write a post about those. In the meantime, you can make a one-time purchase of the last three starter cultures from www.culturesforhealth.com.  The cultures multiply and/or are activated initially so that you can continue to use them indefinitely.  You could also get a starter culture for veggies there if interested. I've made sauerkraut with that and also with a starter of whey and salt.

More Common Sense:
~ nurse galactocele side first
~ don't assume draining will be a cure-all. For most, this only works when baby has weaned. Otherwise, duct is still plugged and will refill. I felt like a clinical experiment during this process. None of the doctors I saw had seen such a large galactocele...nor did they know what to do about it.
~ it was a struggle and often painful but I was able to continue nursing even when told that stopping might be the only resolution.
~ if you do switch to formula, don't lay a guilt-trip on yourself (just don't choose soy, please!)
~ massage/warm showers/warm compress
~ sleep (definitely easier said than done say I, the mother of a baby who still frequently wakes up at night!)

I'd love to hear your stories and thoughts in the comments section.  If you're dealing with a galacocele right now, be sure to read my older galactocele posts and the comments sections too.  There are many women looking for answers but there is seemingly little information available. Hopefully our stories can help each other out as we look for solutions. God bless!

~ Heather


**(4/24/20) For some reason, I’m unable to respond to comments now. I thought my replies were going through, but many spaces are blank... To the last posted comment by “Unknown”, here is the reply I wrote twice and am unable to post except here. I hope you see it. 😊
“ I just wrote a long reply and it was deleted after I selected publish....of course! How old is your baby? Most recommendations I’d have are listed in the blog post, although, I haven’t checked links to see if they work anymore.
I know this can be frustrating, discouraging and many questions just don’t get answered.
As far as knowing if your baby is getting enough milk, there are a few questions that can indicate how much he is getting... Is he content or fussy soon after nursing? Is he gaining weight? Is he nursing longer on one side? The design of breasts of produce milk is based on supply and demand. The more you breastfeed or the more baby suckles, the more milk your body will produce. You can nurse him more frequently to work up that supply/demand feature. Mother’s nutrition, water intake, and medications can play into reducing milk (or increasing). Be sure you’re drinking enough water and eating nutrient-dense foods. There are lactation-promoting herbal teas you could look into. If your son does end up supplementing with formula, it will be okay too. Making milk isn’t a “super power” (as some shirts I’ve seen say); it’s part of feeding and holding your child. Loving your children, comforting them, holding them, teaching them to know right from wrong, and praying for them is nurturing and nourishing to their bodies and souls. Praying you are able to continue to heal from the galactocele on one side while nursing your son on the other.”

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.

What is a Galactocele?

Five months ago, I discovered a breast lump but chalked it up to something that would go away as I continued to nurse our then 7-month-old.  A few weeks after first noticing it, my milk backed up to almost my armpit.  I did all the recommended blocked-milk-duct treatments -- nurse frequently, massage, warm showers, etc.  Three days later, things were back to normal...except that lump was still there.

Two months after noticing it, I made a doctor's appointment to have it looked at since it was noticeably bigger.  It wasn't particularly painful but by the time I saw the doctor, it was the size of a kiwi.  Having scoured the internet for information on what I was dealing with, I felt prepared to meet with the doctor.  I explained to her that because it would slowly change in size (sometimes a tad smaller and sometimes bigger) that I didn't feel I needed to have a mammogram.

As functional nursing breasts, mammograms often show skewed results.  I wanted an ultrasound but was told that as per "procedure", I *had* to have a mammogram first before I would be allowed to have an ultrasound.  I didn't take to that very well so went looking for another option.

In the meantime, I went to see a massage therapist who specializes in breast issues.  She showed me a few techniques that I had pretty much already been doing on my own.

Following the advice of www.kellymom.com regarding mastitis issues (even though I never had mastitis), I was taking Hepar Sulphur and Phytolacca which seemed to help for a time to make the lump softer and more palpable.

Then, I caught a bad cold and it seems that my breast caught the sniffles too.  That was the point where the lump ballooned and it was totally obvious from the outside that something the size of an apple was pushing against the back of my areola.  It was very painful at this point...a constant pain.

I went to see a new doctor, an ob-gyn, who agreed that an ultrasound would be the best option.  It was scheduled for a couple days later.

A galactocele is something I had considered from my reading online and the ob-gyn I went to see thought that was likely what it was although she was concerned that it felt harder than she thought it should.  On an ultrasound, a galactocele resembles breast cancer but due to my age, the fact I was nursing, that the lump had gotten large fast and would sometimes be smaller, the radiologist was confident that I had a galactocele.  Many women have breast cysts; some dangerous and others insignificant.  A galactocele is a breast cyst that is filled with (you guessed it) milk.

The radiologist and my ob-gyn said that this was the largest galactocele they have ever come across.  They are rare in general and usually only happen once a mother ends breastfeeding.  I was (and am) still breastfeeding.

At the ultrasound, I did agree to let the radiologist drain it even though I had read that they can refill.  Indeed, 2 hours later, it was completely full again (and painful).  At that point, I was ready to give up breastfeeding and just cry out of frustration.  In case you are wondering about the draining, the radiologist uses a small needle to freeze the area (in my case at the beginning and half way through) and then uses a larger needle to aspirate the liquid (milk) from the galactocele.  Since it had been accumulating for almost 5 months, it looked like sticky white glue.  Pure white though so no infection.

Fast forward 2 weeks after the aspiration... I had been working on reducing breastfeeding on the affected side but that was creating its own problems since milk would start backing up again.  Then... I caught a flu-bug.  Who would ever be thankful to be that sick?  I was!!  I noticed immediately that the galactocele was shrinking.  What else could it do when I couldn't drink and ended up losing 4lbs over the course of 12 hours in the bathroom.

I had been talking to our children about thanking God in every situation because He is always in control.  He was using my dehydration to get this galactocele back under control.  (And, unbelievably, no one else got sick!  I don't even know where I picked it up since it's usually one of the kids who brings home an illness).

Yes, it is still there, but it is now the size of a ping-pong ball and not painful.  Sometimes there will be a brief shot of pain but it's usually over as quickly as it started.  I'm continuing with the Phytolacca and Hepar Sulphur, and I'm working on going 100% gluten-free.  I stopped drinking coffee and caffeinated teas about 3 months ago.  I am continuing to take Sunflower Lecithin as it helps keep milk 'thinner'.  Stress is what I believe created the galactocele to begin with so continually giving my concerns over to the Lord before they become worries is what I work at daily.

I'm very thankful that this is a galactocele and not breast cancer.  There is apparently no correlation between the two.

As I'm still breastfeeding and still have the galactocele, I will update about anything significant that changes or anything new I learn that could help someone else out in a similar situation.  If you are reading this and have any questions due to your own circumstances or have experienced this in the past and have suggestions, I'd love to hear from you.

March 2015 Update - HERE

August 2011 Update - HERE