"Mastitis" for 10 wks. - u/s scheduled for tomorrow

farmgirl24

Hi all,

 I would really love to hear some input on my situation.

I am 32, I am bf'ing my 4th child, who is almost 10 months old. About 10 weeks ago I went to bed with an extremely sore lymph node under my left arm. I woke up feeling ill, had fever, aches, and my left breast began to show classic signs of mastitis - redness, swelling, streaking. I called our family dr. who was out of town and she prescribed abx (dicloxicillin) to clear it up. I began taking it and 48 hrs. later was in the ER because I had a bad reaction to the abx. The mastitis had not responded at all during that time, only gotten worse. I was taken off that abx and prescribed another, plus received a shot of rocephin and a anti-itch med to help with the rash. I finished those 10 days of clindamycin and felt much better, Most of the swelling went away, most of the redness went away. The baby resumed bf'ing (she refused when it was so terribly swollen).

3 1/2 weeks later I woke up again feeling the symptoms of mastitis, the redness, swelling, and streaking returned, in exactly the same pattern on my breast as before. I went to see my midwife, had a fever at the time of my visit there, received another shot of rocephin and began a 10 day round of keflex. I felt better within 24 hours, finished the keflex, the baby resumed her nursing, and the redness and swelling again went MOSTLY away. But not completely.

1 week after I finished that round of abx I had another episode of mastitis. This time I did not have a fever, but the redness and swelling came back. I started a new round of keflex for 10 days. It helped the redness and swelling, but again it didn't completely go away. My midwife prescribed another 7 days of keflex, which I finished up 4 days ago. I went back to see her on Friday and she is ordering an u/s for tomorrow morning, which will become a mammogram as well if the radiologist deems it necessary.

At this point in time my breast is slightly swollen, faintly red/purplish over about 60% of the area, with ridging on the lower edge of my areola. Some of my breast feels somehow numbish? in areas, particularly just below my areola. It has a faint look of an orange peel and when touched it becomes more pronounced, as if the breast is angry and retracting through that area? The nipple is NOT inverted, but flatter than the other. Currently the baby DOES nurse on that breast and I am still producing milk, though less than the other breast. There is a constant ache and stabbing pains occasionally. The lymph node has not been painful since the first round of mastitis cleared up.

My family doctor, my mother, and my midwife have all approached me separately to discuss IBC but I'm not sure if this sounds enough like it to push for more than just the u/s and the mammogram. But those things won't necessarily tell us if there is IBC or not, right? 

Not really sure where to go from here. Another doc is pressing to just put me on another abx. I feel worried, but feel silly for being worried at the same time.  Thanks for your input.

chester2010

Hello Farmgirl24:

I'm glad to hear that you are having an ultrasound tomorrow.  You should not feel silly about being worried but you should for sure have more investigation of your symptoms, especially as you have been having recurring problems. Your body is going through many changes after having a baby and breastfeeding but you should still get this all checked out by a specialist breast cancer facility.  Good luck with everything.  Kathy

mrsnjband

Farmgirl 24,

Sorry to hear you are having problems.  I bf both of my boys, I always had one side that would get mastitus. It has been so long now I don't remember which side it was on.  With your first several round of mastitus you improved with antibiotics, that doesn't happen with IBC.  Now your symptoms aren't going away.

IBC is rare but possible.  Symptoms can vary from person to person. If they can't see anything on the US then you need to have an MRI.  It was only through an MRI that they were able to locate my IBC of 3mm, it was very close to the chest wall.   

I agree with Kathy that you should be checked out by a breast specialist.  I thank God for the one I went to, she didn't give up till she figured it out.

Please let us know what you find out.  

Sending you lots of love & support. NJ 

farmgirl24

They didn't find anything on the mammogram (2 views) or the very quickie ultrasound.

So I guess they've ruled out recurring mastitis that is caused by a cyst! And no calcifications!

My midwife, my family doc, and the radiologist that I spoke with today all seem to believe that IBC would be found through a mammogram, but from the things I'm reading online IBC is often NOT seen on a mammogram so I'm not sure what to do from here. 

I am beginning my 5th round of abx today (bactrim) and we'll see where this goes over the next week. I am not sure if anyone will order a biopsy for me, is it worth pursuing if the abx doesn't do the trick?

leisaparis

farmgirl - print out some of the info @ IBC and take it with you. I sure hope it's not that, but you want to rule it out that's for sure. I'll see if I can find the link.

leisaparis

The IBC Project video has some really good visuals.   You can view it via facebook and share with friends, https://www.facebook.com/?ref=home#!/event.php?eid=147402326727
or watch it at http://www.cancerschmancer.org/articles/diagnosis-and-treatment/video-ibc-project-take-two

Here is a really good video with the top dr for IBC.

farmgirl24

thank you Leisa!  I watched the video, very informative!

I have gone 60 hours now on the Bactrim and still no change. DH thinks it looks a little less red, I'm not sure if it really is or it's wishful thinking. 

There is still redness around the side and down below the areola and some darkening above. The skin still looks kind of like I have goosebumps all the time, and the small ridge is still there just below the areola.

Got a message from my midwife that she discussed the results of mammogram and u/s with the radiologist and everything looks fine. I feel like it was so quick (the u/s especially) that he couldn't possibly say it's definitely not ibc. Maybe I'm just being paranoid, but I'm still worried.

 I've been trying to research on whether ibc can CAUSE mastitis in lactating women. There's no doubt in my mind that I had mastitis. But with 4 children, 46 total months of breastfeeding so far, and only having problems in the last 11 weeks is strange to me, especially with it not going away.  So many of the things I read about recurring mastitis suggests that it is caused by poor hygeine, or incorrect feeding habits, such as improper positioning and bad latch. I KNOW this isn't caused by any of those. When it comes to breastfeeding, I think I have enough experience by now to know what I'm doing.

If it were something like MRSA, wouldn't there be an open sore somewhere? Can MRSA be completely internal and cause symptoms like this?

I can't think of anything else this could be. I know I'm mostly just talking to myself and rambling on, but it's helpful to me to be able to write this all out and somehow keep track of what I'm thinking. I have a feeling that if I pursue this further it will be on my own and I'm not sure how to go forward with that if this 5th round of abx doesn't work. 

farmgirl24

My dr. referred me to a breast surgeon. I haven't made the appt. yet but that will have to wait until after the holiday weekend.

ktym

farmgirl24, I'm relieved to hear that, can you keep us posted?  We'll be worrying about how you are doing

farmgirl24

I have an appointment with the surgeon on the 27th, but I also pushed my midwife for a referral to the breast health center about 40 min. from here. I got a call from their coordinator today and they reviewed my mammogram and want me in to do a repeat mammogram plus one on the other breast to compare and will also do another ultrasound.  I will go in for that on Tuesday, so 6 more days. I'm relieved that someone is taking me seriously, but I still don't know what all they will be able to see with a mammogram.

 My symtoms are still present. Not overwhelming me or my life, just there. Not going away. 

Thank you so much for your thoughts and your concern!

farmgirl24

Had the second mammogram and ultrasound today. They were much more thorough and helpful than the first mammogram at the closer hospital. First thing the dr. said was that he wanted to apologize for the first radiologist not being more proactive and doing all that he should have and he wanted to explain that I got the call back not because there was specific cause for concern but because they wanted to do all the testing they felt the first guy should have.

 Okay, so they did another mamm and one on the other breast, then did the ultrasound. They didn't see any lumps, no cysts, no reason for further testing unless this continued to not go away.

I asked how much longer I needed to let this go without resolving it before I had a biopsy and he said that was an issue I need to address with my dr. Well, gee, that was so helpful!!! I've been on 5 rounds of abx and this has been going on for more than 3 months!

I was able to see the mammograms which was very helpful for me on a personal level to just be able to visualize what they look like and have something for reference in my own mind. 

I still have the appt with the surgeon next week and I need to decide if I will see that through or cancel it. All I could think about was a report that I read saying that at times the IBC was found on mammograms but only after the radiologist examined it with a magnifying glass to see the very slight thickening of the skin.

He couldn't give me an explanation for the warmth, the redness that won't go away, or the thicker, more fibrous feel of the left breast. He said he just reads films and couldn't offer any other explanation for the symptoms, just say whether or not he saw reason to test further for cancer and he did not.

thanks for listening, thanks for your thoughts on this topic! I wish you all the best in your journeys!

chester2010

It's good that there was nothing suspicious in your mammogram and ultrasound -- but still you have the redness and swelling of the breast.  I hope you will keep your appointment with the breast surgeon next week and ask him to do a punch biopsy and/or MRI  Sometimes IBC does not show up with a mammogram and ultrasound and you need to set your mind to rest that you have done everything possible.

Good luck.  Kathy 

Leah_S

farmgirl, I agree that you should see the surgeon next week. At that appt keep asking for a biopsy. I hope this is resolved soon.

Best of luck.

Leah

HollyinMich

Farmgirl, absolutely see the surgeon next week for a biopsy and I would have the MRI as well.  Mammos and US is not the way to go to get a definitive yes or no on IBC.  It's a sneaky b@*!%ard and you want to be as thorough as possible!

farmgirl24

Thank you for the encouragement. I have not cancelled my appt. with the surgeon yet, but to be honest, I don't know what to say to him!!

My midwife thinks I'm "fine", despite my symptoms, my mamms came back "fine", the u/s was "fine". So what do I say to the surgeon when he asks me why I'm here? 

"Well, everyone in the medical profession thinks I'm fine but I still want you to take me seriously?"

Ugh. I'm not good at being my own advocate AT. ALL.

So, really, though. IBC moves very quickly and is very aggressive, right? But this has been going on for nearly 4 months now without severely increasing symptoms. What am I missing? What else could be causing this that I'm not educating myself on? 

The surgeon is not a breast surgeon specifically, just a general surgeon, not a breast expert at all. I don't know how to approach the topic of proving to him that there is a palpable difference in temperature, coloration, and mass between my breasts without flashing him and I don't know if he will be educated enough in breast health to understand what that means when all the other testing he's reading about me is "normal". 

I feel ridiculous.

farmgirl24

Wanted to add: I can't afford an MRI. I have no insurance and I don't believe the chapter 15 state aid will cover it, unfortunately.

mom3band1g

I would not bother with a general surgeon....you need a breast specialist/surgeon.

chester2010

Do not feel ridiculous about pursuing this and being your own advocate.  It is not easy I know to fight for yourself but you still need to know why your breast is still red and swollen.  Dont allow the Dr. to dismiss your worries and ask him to do a biopsy and/or refer you to a breast specialist.

farmgirl24

mom3band1g, I know, I know. I could not get my midwife to refer me to a breast specialist. This was the only referral I could get. Hopefully I will be able to talk to this surgeon reasonably about talking to someone who is an expert in this area rather than just a general surgeon.

chester2010, thank you for your encouragement.

mrsnjband

farmgirl,

With the amount of time & the problems you are still having you really need to be referred to a Breast Specialist.  As I stated before that it took a MRI to locate my IBC tumor.  My skin punch biopsy was negative, but the MRI located the 3mm with a positive biopsy.  I wish I could reach through the computer & shake these people!  Please keep after them until they listen.

Sending love & support. NJ 

HollyinMich

I echo NJ!  I wish the medical community would wake up!  Just goes to show how much each and every act of awareness and education provided about IBC is so darn important!  Wishing you all the best, Farmgirl.  Keep pushing!

farmgirl24

 My name is Lisa, btw. Nice to talk to you all, you've been so helpful and supportive.

Well, guys, it was just as I feared - it was a total waste of my time. The general surgeon was an older gentleman with old school ways. His wife didn't breastfeed and his first question was, well, how much longer are you going to breastfeed!? As if I were counting down the days until I finally reached 12 months so I could STOP.

He said it didn't "look" like IBC (no peau d'orange) and since the mammogram and u/s were both negative, it MUST be mastitis and some clogged ducts. He wanted to know if I've always had one breast larger than the other (um, NO!!! That's why I'm HERE) and that my redness "isn't all that red". He said some women's breasts change during breastfeeding and that the larger size of the one "could be my new normal"  He didn't comment at all about the warmth except to say that it was likely inflammation/infection from mastitis. "for FOUR months?" I said, "yes." and then he explained how clogged ducts happen and blah blah blah. I didn't bother to explain that I've been on lecithin for the past 3 months because I highly doubted he'd even know what the application of that would be. 

 He told me that I should go home and "cross my fingers" that I don't get another bout of mastitis. I asked him what I should do if I DID get mastitis again. "Go see your PCP and get back on antibiotics", he replied. "what if I stop bf'ing and it doesn't go away?", I asked. "Go back to see your PCP".

SO. Once again I'm told that I'm "fine". I'm not normally one who goes to the doctor at all unless something is broken, bleeding, or I'm pregnant! lol. When I broke my foot, I didn't go to the dr. until the next day... AFTER I'd driven myself to work with a stick shift but the swelling kept getting worse! I know I'm not totally overreacting here. Something is up. I just wish I could get some answers instead of being shuffled back and forth between middlemen who are not experts on breast health. I'm sick of being felt up by random male doctors!!! ha ha ha. 

So this is the end of the line for me. I've exhausted my referrals and don't know what to do next. Except, of course, to "cross my fingers" and hope this eventually goes away.

TooManyCocktails

Go to the emergency room or urgent care.  They should have you see a ob/gyn who may consult an oncologist.

Don't give up until you get an answer that you're satisfied with.  I did *not* have peau d orange skin either. I had a breast twice the size of the other that was red and rock hard.  I was hospitalized because I had a high fever.  I was given IV antibiotics.  The redness slowly went away and the swelling started to go down; but my lymph nodes started to grow.  I had no palpable lump in my breast; but did have one under my arm.  It took me about 8 months to get them to do a biopsy.

I hope that you don't have IBC; but don't give up until you know for sure.

HollyinMich

(((((Farmgirl)))))  That is so disheartening!  I am so sorry to hear that you are getting the same run around.  Is there no way around a referral?  Can you try a completely different doctor, maybe primary physican to start over with?  I'm sorry but I'm not up to speed on your healthcare options is why I ask.  

thegoodfight

I agree with everyone that you need to pursue this further, but what I can add is that I am now on my third bout of mastitis and the last two times it was cleared with taking the antibiotoc cipro.  I only started the cipro again yesterday, so I do not know yet if I am responding this time.  This my third bout with mastitis in a year, getting it every 6 months (which I find strange) July '10, Jan. '11 and now July '11.   What I do know is CANCER DOES NOT GO AWAY WITH ANTIBIOTICS!   That is why I am not over reacting yet, till I see if I respond to this dose of antibiotics.  But then I will start my search as to why I seem to be on a 6 month repeat.  I am 66 so this is non-lactating mastitis.  I did have a bout when I was bfding my third baby but that was over 30 years ago.  In my case the surgeon doesn't have an answer............yet.   He thinks it might be a recurring mrsa infection.  Talked about removing the nipple and sewing me up to prevent an opening for the bacteria to enter.  I need a second opinion before I would do that.   The oncologists say my immune system is compromised from treatment, especially the radiation.  That doesn't answer why I am in a 6 month pattern.  First I need to clear up this bout and then I am looking for answers.   I have brought up the IBC fear but they all say no.   If I don't get answers I will pursue further and I hope you do too.   I don't know the answer about the insurance obstacles, but have you considered contacting the American Cancer Society and Susan G. Komen?   They have funds available for people who need testing and treatment and have no other means.  It might be worth a call.

If anyone out there has had a similar experience to mine please share and enlighten me if you can. 

I wish you all the best................Caren

TooManyCocktails

The doctors told me that my "mastitis" was going away because the redness and swelling were going down.  Not!  The stuff was going into my lymph nodes.  They thought the antibiotics were working.  They could see swelling and skin thickening on the mammography and ultrasound and they still refused to do a biopsy.

TooManyCocktails

Inflammatory Breast Cancer Research FoundationCommitted To Finding The Cause!Focusing on Research and Awareness

If You Have Undiagnosed Symptoms

If you have  any of the symptoms of IBC and have not been diagnosed with inflammatory breast cancer ...

See your doctor immediately. Remember inflammatory breast cancer is often mistaken for an infection and antibiotics are prescribed. Ask for a mammogram and then request a copy of the radiologist's report. If there is any skin discoloration, ask for a skin biopsy and request a copy of the pathologist's report. If the mammogram and the skin biopsy are each negative, ask for an ultrasound.

If symptoms persist without a diagnosis of their cause, seek a second opinion or a third opinion, continue until a doctor has determined the cause of your symptoms.

Use of Antibiotics: An Infection or IBC?

Some symptoms of IBC are often thought to be those of mastitis, an infection, resulting in treatment with antibiotics, and sometimes, but not always, the antibiotic treatment changes the appearance of clinical symptoms.  The reason for an apparent response to antibiotics when IBC is present is not known and may delay the diagnosis of IBC.

One lady eventually diagnosed with IBC has written the following about her own experience with antibiotics.

A partial response to antibiotics is "what delayed the diagnosis of my IBC.  First my GP thought my breast was hard and sore because of my period so wanted me to wait one month.  When I went back, he put me on antibiotics because my breast was very red, hot to the touch, rock hard and painful.  After 3 weeks of the antibiotics, my breast was no longer hot to the touch and not as painful.  He kept me on antibiotics for 2 months, constantly trying different ones until the diagnostic radiologist requested a biopsy after my yearly mammogram.  The surgeon almost didn't do the biopsy because he couldn't find a lump to biopsy but the diagnostic radiologist insisted.  The surgeon finally just made a small incision and did several punch biopsies.  I don't know how much longer it would have been if the diagnostic radiologist had not been alert and made that request or if it had been longer before I was due for my yearly mammogram.  We all learned something that day."

farmgirl24

you guys are scaring me!!!  Thank you for the thoughts and for the information. I am not sure what my next step is, but I am very grateful for the information you all have given me.

HollyinMich

So sorry this is all scaring you, unfortunately with IBC it is scary because it is so often misdiagnosed.  Please keep pursuing it especially if you are still having symptoms.  Be vigilant!  Sending you lots of hugs and prayers and I truly hope it's all worry for naught!

abatellik

I don't want to scare you either Lisa, but I have had some information that I think you need to know so that you won't give up searching for answers....  I breastfed both my kids for over a year. I did not have mastitis while I was breastfeeding, but after I stopped breastfeeding my daughter a year ago, one breast went down in size and the other did not. It never really changed in appearance or the way it felt, and my husband and I both thought there was still milk in there. About 4 months after stopping breastfeeding, when it still had not returned to the normal size, I went to my doctor, who felt it was probably hormonal and ordered a blood work-up. When that didn't show anything, I went to my nurse practioner who felt it was probably a deep set infection caused by breastfeeding but sent me for a mammogram and u/s anyway, and she saved my life! The mammogram only showed very dense breast tissue but the ultrasound showed an area of concern. The radiologist prescribed me a strong antibiotic, and this is the part I want to emphasize: It got MUCH better! The whole breast got softer and a bit smaller. I was convinced it could not be cancer because it had responded so well to the antibiotics. I went to see the breast surgeon about a week later, and she sent me in that day for a biopsy anyway. I was totally shocked when it came back positive for cancer! I am only 30 years old and no cancer in my family. Plus we eat healthy and I breastfed each child for 15 months! But these things happen anyway. The next day, we met with the surgon who said I had a very treatable form of ductal carcinoma. The next morning, she called us on her cell phone and said she couldn't sleep all night because she was thinking about me and thought I could possibly have IBC.  Again, all I had was a slightly swollen brest, no warmth or real skin changes.  A second mammogram did show some skin thickening (I received a second opinion at U of M in Ann Arbor, MI. They decided to diagnose me with IBC although the doctor said he was leaning toward it being IDC. But better to treat it more agressively!)

I do not tell you this story to scare you. I tell you it for 2 reasons:

1. So you know that antibiotics really can make IBC appear better, at least for a time (I think mine was better for a week or 2).

2. So you know that it can happen to someone who is young and breastfeeding (prolonged breastfeeding, while so beneficial for most kinds of cancers, is actually a slight RISK factor, for IBC).

 Please don't stop bugging your doctors: it is YOUR body and you know when something is wrong! I know that if 1 doc had told me it was nothing, I would have listened because it is what I want to hear. So good for you for following up on this. It has to be so difficult for you without health insurance and to be kept in limbo about this for so long! I will add you to my prayer list of people I have met on here who are scared they have IBC. It really is rare, and the only reason we are scaring you is because we all have it, so to us, it doesn't seem rare at all!!!! The odds are definitely in your favor :-)

farmgirl24

Thank you all. These last several posts have pushed me to keep trying to find out what's going on. I called the coordinator at the place where I had the second mammogram done and explained to her what was still going on. She is a certified breast specialist and she urged me to get a second opinion. She gave me some more resources that I can pursue on my own if I am willing to drive 4 hours OR I can call my midwife and ask for a referral to an actual breast surgeon about 40 min. from here. Either way she said a second opinion is in order since this has been going on so long and because the surgeon I saw is not someone who is up on all things breast!

I hope it is nothing and I know the odds are definitely in my favor here, but it would be so very nice to have some definite answers and be able to just know one way or the other.

Thanks again for your support and encouragement!