My Story (Chapter 1)

I have realized, that for whatever reason, I did not post much in the first month after I was diagnosed.  I think I was in shock.  I think I was also a bit timid about blogging.  Sometimes I’d like to just forget those early days of diagnosis, and then other times I think….well, maybe I should write down what I remember before I totally forget.  Then someday when my kids really want to know the details I can refer to my written account.

I’m going to write in segments because if I write it all tonight this post will be WAY too long.  I’ll just write a little bit everyday until I feel like I’ve gotten it all covered.

I vaguely remember the first time I thought I had a plugged duct.  I remember walking around in a Baby GAP, it must have been around Thanksgiving, and we were Christmas shopping.   As a breastfeeding mom I would quite often push on my breast to feel which side I needed to nurse on.  I sometimes would forget I was in public and do this.  I remember pushing on my left breast and thinking….”boy, this plugged duct is annoying.”  I remember thinking I was leaking too because it felt hot and moist on that side….which isn’t all that uncommon for a breastfeeding mom except that Elijah was about 10 months and I really wasn’t leaking very much at that point.  I had had many plugged ducts and usually I would just nurse extra on that side and it would resolve itself.  I had actually had a mole removed off my left side a month or so previously so I thought I had somehow overcompensated and not fed enough on the right side.  I figured it would resolve ina few days.

Around Thanksgiving I mentioned to my cousin who is a physicians assistant that I had a plugged duct that was not resolving and it was making me frustrated.  By this time the breast was warm, had some reddish patches and had a weird lumpiness to it.  Very much like a plugged duct but not yet mastitis because the rest of my body did not have a fever. 

I called to my midwife’s office to see if I could get in.  I wanted to go to a woman.  I didn’t realize there was actually a female doctor I could see at this office since I had only gone to the midwives.  The receptionist told me there was nothing before Christmas.  So I decided to go to my family doctor.  I figured if I was going to show a man my breast I would at least go to someone I knew and felt comfortable with.  We agreed it looked like a plugged duct.  I knew all the tricks to getting a plugged duct out…..warm compress, warm showers, massage.  I left more determined to get the plug out. 

Over Christmas break I traveled to Atlanta to visit my sister, who is a La Leche League Leader and lactation consultant by the way.  She mentioned trying ibuprofin to reduce swelling.  Over break I would scan web sites reading about mastitis and plugged ducts.  I couldn’t figure out why my breast had a fever and nothing else did if it was mastitis.  By now my breast was hot, red and the whole breast was swollen.  I could see the pores in my breast were making this pitted texture.  I also had some of the classic streaking symptoms of mastitis. 

On one web site it mentioned a trick to getting out a plugged duct.  If you took boiling water and put a little in the bottom of a glass, then put your breast in the glass, as it cooled it would cause a suction and this would pull the plug out.  I tried this several times, but no plug came out.  Not only that but it is painful.  I don’t recommend it!  I also searched my nipple for blisters as described on some sites, but found nothing. 

When I returned home I once again called my midwife.  They still couldn’t get me in for several weeks.   I thought….”well by then it will be gone”.  I’d never had a plugged duct last very long so instead I asked for some suggestions from the nurse.  (You’d think after six weeks it might occur to me that it was not going to resolve on its own!)  She called back and said the midwife recommended lecithin and echenacia.  So I headed off to the local health food store and started taking both of them. 

During that time I was also with some friends and one of them mentioned that she had struggled with some plugged ducts and recommended some homeopathics.  So I went back to the local health food store and got them.

After taking these things for a week or so I thought it was looking a bit better.  I took one of my children to see our family doctor and he asked how the plugged duct was doing and I told him it was still there but I thought it was improving.  I think if  I had said it still was there he would have taken a look, but since I thought it had signs of improving he didn’t press the issue.

To be continued…..


4 thoughts on “My Story (Chapter 1)

  1. Amy says:

    I thought I would clarify a bit for readers regarding my recommendations during her visit. Since Jen was visiting me in Atlanta when she showed me the inflammation (which meant that it was likely more than a plugged duct), I recommended NSAIDS, ibuprofen, to relieve inflammation and discomfort. I believed, due to the redness and inflammation, that it was more likely to have progressed to a breast infection (mastitis) and, as such, needed to be seen by a primary care physician soon to prevent abscess. I distinctly remember sharing how bad an abscess can be (it can be gory), which is the reason for treatment for mastitis. I was unaware of the continued problem for several weeks after that because we don’t live near each other. While I wish that I had known what was going on immediately, there was no orange peel (peau d’orange) appearance and she had not been given a round of antibiotic to rule out infection.

    Hope this clarifies– I didn’t simply assume that ibuprofen would be the solution! I just wanted others to know that Lactation Consultants do not diagnose and cure disease, but are trained to refer patients to their doctor for mastitis.

  2. clergygirl says:

    I hope it doesn’t sound like I’m blaming anyone for this. I certainly feel like there were many factors including my own lack of understanding. I think if anything I just want to get my story out there so people know the possiblity of IBC….even though it is extremely rare. My sister and I both discussed our frustration with receptionists who try to diagnose over the phone and who keep you from seeing a doctor even when they are not trained in medicine….this was my only frustration and I hope through education they don’t make the same mistake again. Life is life and all we can do is learn and move on and be thankful I did get the help I needed in time.

  3. Amy says:

    Yes, the important thing is that primary care physicians are trained (and supposed to remember, etc.) that a breast infection that doesn’t clear up should be biopsied. The receptionists or other HCPs who keep one away from the doctor are making a big mistake. They are semi-diagnosing when they turn patients away for things that they deem less serious.

    I noticed that our FP’s office lately has changed what they say when they answer calls. They no longer ask why you want a visit and they do not question how serious it is, etc. They simply give you an appt. This is a change from the past when I had to hassle them to get me in for potential ear infection immediately because my sons are at a slightly higher risk of meningitis due to their cochlear implants. This is something no receptionist would know… it is new info. and specialized. My doctor understands and even an ER doctor that I saw on Friday was very aware and careful, checking blood work before dismissing the possibility (it was pneumonia). The end result is that I can get in to see the doctor for things I am concerned about– and that makes a happy consumer.

    Perhaps the biggest impact of your story would be made in 1)letting women know to get in to see their doctor if anything suspicious occurs or they have mastitis for longer than a week (or prescription antibiotics don’t cure it) and 2) making sure that their primary care doctors are remembering that not all “mastitis” is mastitis. Prolonging care for mastitis without biopsy seems to be a mistake. I am not sure how this could be addressed… perhaps by getting the word to the educational institutions? The doctor you and I both know from college knew that this was what needs to happen (the biopsy, quickly). But apparently this is either forgotten or doubted in some cases, for long enough to risk the ability to treat this kind of cancer successfully. When I talk to others, these are the main points which I try to give them. They won’t necessarily remember every other detail but hopefully they will remember to see the doctor for suspicious breast issues quickly, and remember that it could be serious.

    My point above was that I would never treat mastitis with ibuprofen, and I wanted to make sure others knew this. It’s useful for symptomatic relief of inflammation.

  4. Renee says:

    Great article! Thank you for putting it together. Potential patients will be better served going with a service like The Patients Advantage ( It’s a great way to find the best surgeons and it does not cost anything. I found them when searching for breast reconstruction surgeons. Check them out.

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