"Bruise" on breast, breastfeeding infant, ruling out IBC

PinkMotel

Hi. So, I've never joined a forum of any kind but have lurked plenty...and my current medical situation is prompting me to seek more specific support.

I am 33, just gave birth 9 weeks ago to my 4th baby. I have breastfed all of my children 'til at least two or three years of age, never dealt with mastitis or low supply issues; in fact, if anything, I dealt with "oversupply." This time around, at one week postpartum, I developed what I considered to be run of the mill mastitis: a deep red silver dollar sized painful spot on the top of my left breast, accompanied with a high fever (102-103) and chills. I took antibiotics and felt better after about 48 hours, though the red spot "healed" into a shadowy, dusky bruise that has remained for the past 7-8 weeks.

I didn't think much about the shadowy bruise, but did get mastitis another time about 2 weeks later, same breast, but underneath instead of on top. I was hit hard by fever and chills again, used cabbage leaves and poke root instead of antibiotics at the advice of some knowledgable friends, rested for a few days while nursing up a storm, and felt good as new. It should be noted: both times I had mastitis, my new baby had slept 4 or 5 hours instead of the usual 1 or 2. (She's a great night sleeper, and I have to kinda wake her up and bother her if I don't want to feel terribly engorged.) So logically, of course, I never considered cancer. Fever/missed feedings = mastitis.

Two weeks ago (about 3 weeks after the last round of mastitis) I woke up in the morning not to both breasts pretty engorged, as usual, but to one breast engorged (my right) and the left (the one previously afflicted with the mastitis) shrunken to a b cup instead of the d it had been the day before. I was shocked and confused, felt something wasn't right. I have pictures, but assume I can't post them. My milk supply literally "dried up" overnight. I can still get a bit of milk, but my breast is actually shrunken, compared to the other, and will not fill up or "let down." I have recently, over the past few days, secured an electric pump from a friend in the hopes of getting the milk supply going again in that breast.

I saw my midwife, who in 25 yrs. has never seen this. She sent me to two very experienced lactation consultants who seemed very concerned and also say they've never seen anything like it. They mentioned IBC (because of the faint bruising) and referred me to a general surgeon with experience in breast pathology. Of course, due to reading about IBC, I have been in a state of panic and shock for 2 weeks.

I saw the general surgeon promptly and he wasn't too helpful. Said sometimes bruises from mastitis are permanent, and sometimes one breast will dry up because of exhaustion. (??) He also called the bruise a "perceived bruise," as it is rather shadowy and faded and ill-defined, at the convergence of two veins. (Approximately 4cm by 3cm.) He said there is no way I have IBC, because it must present as red, infected, and enlarged. I did push for imaging, so I had an ultrasound and mammogram done. Breasts too dense for mammo, but ultrasound showed a hypo echoic mass (bi rads 3) right near the shadowy "bruise". Surgeon said to come back in 6 months for followup.

I went back a few days later and took my husband - we explained our concerns about the bruising. He said he could promise me, as someone who "does this for a living", that I do not have IBC. He admitted he does not have a lot of experience with lactating breasts, so he wouldn't be able to give me answers regarding decrease in size and milk supply, and he couldn't explain the discoloration. But he was adamant that it was not IBC. We pushed him to do a small punch biopsy of the area, anyway, and he did. (I was bummed to find he did it about 1 cm outside the perimeter of the bruise, but it was no fault of his...the borders are ill-defined, as I mentioned, and I think he was trying to stay away from the veins.)

Got the call today that the punch biopsy was negative, and he said if I liked, he could do a core biopsy of the hypo echoic thing this Friday (in two days), but that he knows that will be benign, as well.

So, I'm not insured and am nearly broke due to just having a baby (I am freelance so I don't get paid leave) and paying for all these appts and procedures during the postpartum period. In order to have the biopsy done, or to see a breast specialist (as I feel I need), we will have to borrow money from close friends, and/or wait until I can get some work lined up.

I'm not sleeping, and because of the internet, am convinced I have IBC. The dusky bruise combined with the drastic shrinking overnight and loss of milk supply is freaking me out. Do I trust this doctor (and punch biopsy) and move along with life, or keep pushing? I have no idea if I can trust my gut because I do have a history of health anxiety AND postpartum depression/anxiety. This is a really hard, emotional time for me and feels like a nightmare, even if, right now, it's only in my own head. I'm crying often, not eating, not sleeping, shaking, trying to keep it together.

My husband is very supportive but really doesn't think the bruising is anything, because it is faint and isn't large, and hasn't really changed in almost 2 months. I think the hair follicles are more enlarged and defined on that breast, like little pinpricks, but my husband thinks I'm crazy when I point that out and says he sees those on the other breast as well. I'm also feeling burning under the armpit and enlarged lymph nodes on my shoulder and lower neck on that side, but once again, I have history of health anxiety and my husband (and the doctor) say they can't feel the lymph nodes.

I'm just sick with fear and don't know who to trust or how to move forward. I want to be here for my 4 kids and this whole thing just feels like an absolute nightmare...I can't help but imagine the worst. I'm up all night with worry and diarrhea and trembling, just straight-up panic and morbid, dark thoughts. I am looking into zoloft or lexipro; I've never taken meds for anxiety but know I can't go on like this.

Thanks for reading, if anyone made it this far. I would appreciate advice or insight so, so much. Feel like I'm flailing here, and that the doctor (and maybe my husband) think I'm a bit paranoid and crazy.

Much love and respect to all of those battling this.

Scwilly

PinkMotel: I am sorry you feel so anxious, and understand why. I would say that IBC is not known to get better and subside, it usually becomes progressively worse and sometimes this is quite rapid. For your 'red spot' to heal to a bruise indicates to me that the antibiotics had some effect. IBC would not do that. I cannot tell you with 100% confidence that you do not have IBC, but it appears very highly unlikely. Try to stay off the internet and seek advise from this site and from your doctors/midwife. Also - do not fear time passing. I took a couple of weeks form diagnosis to treatment - and my surgeon reassured me that this was ok and that thesis along game. So you don't need to panic. In fact you symptoms are probably hightened because of your fear and anxiety.

I would advise that you need to address your anxiety - and then whatever your heath is you will be able to cope better. Please seek help from your doctor and perhaps consider the antianxiety medications.

I may have had a reoccurrence (though I feel this is independent form my original dx of IBC) but I am here and not racked with anxiety and feeling confident in my treatment options.

Wish you well and please let us know how you get on.

Sarah

Kicks

It does not sound like you are dealing with IBC. of course, I am not a Dr who has actually seen you (nor is anyone else here) but I am IBC.

There are many possibilities/probabilities to account for your ongoing issues that have nothing to do with IBC (or DCIS/IDC/ILC). IBC is rare - only between 1% - 4% of all DXd types of BC. It is rapid in presentation and aggressive in progression. It usually appears literally overnight (within hours) and progresses quickly. It does not 'come and go', it does not always present the same in all of us that are actually IBC. It has no 'set in stone rules' it has to (or does) follow exactly the same in all of us.

I can only say how it presented in me. I never had a 'rash/redness'. One night there was an enlarged lymph node under my arm that had not been enlarged the night before. I saw my PA a week later, had a mammo, an US and FNB biopsies that afternoon, had path. report the next morning - IBC. During the next 17 days, saw Surgeon, Chemo Dr, Rads Dr, Bone, CT & MRI with contrast, PET Scans, port implanted and started neoadjuvant (pre surgery) chemo. During those 24 days from first presentation to starting TX, the node continued to enlarge, breast enlarged, nipple inverted, and peau d'orange developed. I did not have any pain, 'itchiness' or rash/redness in that time.

I do not know anything about possible issues with breast feeding as I did not bf either of my sons.

Find out what is going on BUT do NOT jump to totally unfounded conclusions based on what 'Dr. Quack Google' has told you.

PinkMotel

Scwilly and Kicks, thank you so, so much for your replies. I saw a GP yesterday afternoon and was prescribed 25mg of Zoloft; took my first dose last night. I'm a bit scared about side effects, having never taken anything before, but know I need help and that it isn't logical to ruminate on worst-case scenarios all day and all night, even if I am dealing with something shitty.

I'm in San Antonio, TX, and saw a renowned breast specialist yesterday morning, also a breast cancer survivor -- founder of Aurora Breast Center. (I can't afford to go to MD Anderson, or I would.) Said she has seen IBC throughout the course of her long career. Brought over my images, etc. She spent maybe 5 minutes with me, hugged me, and told me to enjoy my baby. After just a quick glance, she said, you do not have IBC, please move on. My husband and I pushed for an MRI, but she said no way. It'd be a waste of time and money.

I'm inclined to believe her, and I did for a few hours, yet everything you read online (I swore off of stories on the internet a few days ago) mentions people getting turned down for tests and brushed off by doctors routinely, and then it's too late for treatment. And that the symptoms are so subtle and sneaky, etc.

But anyhow, I tried to go to bed last night repeating the mantra "enjoy your baby"...worked okay. But this morning I got an email from the founder of IBC Research Foundation -- I'd reached out to her after being warned about IBC from lactation consultants -- and she said the only way to rule it out is to push for an MRI. Of course, that freaked me out, because I'd recently resolved NOT to push for any more tests for the time being, and see how things go. I just feel like I can't use a lot more energy (financial or emotional) trying to find other doctors to give me the tests I want (an MRI), and I'm having a difficult time discerning if I'm being cautious and wise or paranoid and grim.

Can I ask if either of your peau d'orange symptoms were somewhat subtle? (Not like the very, very obvious pictures on the internet.) The hair follicles on my left breast are more obvious than on my right, kind of like a strawberry, those tiny little pits. But in certain lights this isn't very noticeable. My husband will finally agree that they are more pronounced, but says it's too subtle and has always been like that. The one without the obvious hair follicles is a bit saggier, thinner skin, and has some scarring from having a large mole excised from it years ago. There's a picture on this site of someone's hair follicles, asking if it was the orange peel symptom. I don't know if you all have seen that group of pictures; they're fairly old and I don't think the OP ever came back to say what was up, but mine look like that in one breast, yet are not very visible on the other. I don't think it's always been this way -- I think it happened just a week ago -- but of course I've not looked closely 'til now.

Kicks, thanks so much for sharing your symptoms, and Scwilly, thanks for the advice about not fearing time passing. I know if it is IBC it will get worse, that something else will happen that would probably be a bit more obvious.

Not sure if I should put this away for awhile, or continue to try to get an MRI. What do you all think? How does one even go about getting an MRI if doctors don't deem them necessary? I will have a core biopsy of the hypo echoic thing this afternoon...and I will continue to update to let you all know how things go.

Thank you greatly for the support and replies.

PinkMotel

Also, Scwilly, Sarah (just saw your real name at the bottom), I really hope you are not dealing with a reoccurrence, and I send all of my hopeful thoughts and prayers your way.

Amy

MTwoman

PinkMotel,

You have now had a " renowned breast specialist, also a breast cancer survivor -- founder of Aurora Breast Center" view your images and examine your breast. If you can't believe her expertise, then I'm not sure what else will actually convince you. " How does one even go about getting an MRI if doctors don't deem them necessary?" I believe in this case you don't. Even if you were made of money and could afford to pay for whatever tests YOU want, continuing to pursue this diagnosis seems more like anxiety than prudence. Given your stated history of both health anxiety and postpartum anxiety/depression, I think the best thing you can do is NOT focus on this, but on relaxation techniques. Listening to soothing music, taking a warm bath, going for a walk, doing yoga, relaxation exercises, guided meditation - all of these things could be very beneficial for you right now. Please consider taking a break from the internet (even this site, while extraordinarily helpful, is populated by women who actually have/had cancer and is not representative of MOST women).

"I will have a core biopsy of the hypo echoic thing this afternoon...and I will continue to update to let you all know how things go." Good luck, and maybe the pathology report will let you put all of this anxiety about bc to rest.

PinkMotel

MTwoman, thank you for your reply. You're right, I do need to address the anxiety. My husband suggested driving to the ocean for the day tomorrow, just to get out of town with the kids and fish/walk/maybe swim, etc.

I met with the radiologist today and we decided to take a wait-and-see approach for the nodule, as I'm still breastfeeding and he believes there is very little risk of it being cancerous.

Not sure about where to go from here, if anywhere. Maybe just take a wait-and-see approach with the breast...I'm just having a hard time getting the stories out of my head wherein women had a bruise for months, or a red spot, with few other symptoms, only to find out that they did indeed have IBC. Or all of the stories where punch biopsies came back negative, and on and on. It's just doing a number on my anxiety.

Will definitely continue addressing my mental state. Thanks, everybody, again, for such thoughtful replies. I will continue to check in, and I'll update, if need be.

MelissaDallas

I have not seen one person here in 5+ years present with IBC with a bruise for months or a red spot. They presented with rapidly progressing and alarming symptoms andknew there was something very seriously wrong in days, if not hours.

Scwilly

Pinkmotel: When I had finished my original treatment, Chemo, Surgery and Radiation I was feeling quite anxious as now I had no treatment to follow, and felt like a 'sitting duck''. My radiation doctor gave me some fantastic advice. He said I had done everything I had been asked to do and I should gain comfort from that and to try go through life without worry. I did and often think back to his words. As you saw, I have had a recurrence, first DCIS and now in my liver, but I don't feel regret and feel I could have done something more beforehand.

I say this because I feel you have similar feelings of - should I be dong something?!?! We can never know what is in our future a there are many dangers outside of breast cancer let alone from it. How can we prevent them all?

As MTWoman says, you have seen a top Doctor who has reviewed your case and concluded you do not have IBC. This top doctor also concludes you need no further investigation. Take comfort from the fact you have done all you can at the current time. Spend you energy and thoughts (and money!!) on enjoying your baby. The greatest gift you can give him/her is for you to loose your anxiety. Whether that is something you can do alone or whether you have help with counseling or meds, it doesn't matter.

Keep vigilant but don't stay obsessed. Give yourself a few weeks break of thinking and reading about breast cancer. I wish you well. Make this quote your new mantra "You can't change the past, but you can ruin the present by worrying about the future'. It's so true!

Sarah

PS : thanks for your thoughts for me. I am coping well both mentally and physically at the moment. I don't know how either will be in my future but I am determined not to live life worrying about tomorrow.

Edited for typos

PinkMotel

Sarah, thank you so much for your kind reply. At the risk of sounding cheesy, you are very brave and very inspiring. I wish you well in your continued treatment.

I'm working on my postpartum anxiety, but I'll admit, it is really, really difficult. There are so many stories of women being misdiagnosed on the internet, and I just can't tell when enough is enough, you know? I do notice changes in my breast, but to the two doctors I've seen, they are not concerning. It's hard to rest in that, especially when the changes seem associated with such an aggressive cancer, but I am trying.

Again, Sarah, thank you for your encouraging words, and for taking the time to respond so compassionately.

Amy

Scwilly

Thank you Amy. It's so good to know my words make a difference. I have had a lot of encouragement from some wonderful people on this site, both directly and from the many threads I read.

Keep well and stay reassured. Hug your sweet baby and family

Sarah

Ayerogers

I know this is years later, however I came across this thread after browsing through Dr. Google lol. I am currently breastfeeding and my left breast suddenly shrunk, still producing a small amount, but I’d describe it as deflated. For about two weeks, maybe three now, I’ve had a bruise the size of a nickel towards the bottom of my breast. It has gotten darker and darker. Your symptoms sound so similar to mine and I was just wondering if maybe you ever found exactly what was going on with you? I truly do hope everything did turn out just fine for you and that the anxiety subsided, trust me I completely understand it

AliceBastable

Ayerogers

You need to start your own thread. Most people who click on this one will see the old date and close it.

Moderators

Dear Ayerogers,

As AliceBastable has said this is an older thread and so the member who started it may not still be active here. You can try sending a private message or you can start a new topic if you are interested in restarting this discussion. Let us know if we can be of help.

The Mods

Beesie

Ayerogers,

PinkMotel never posted again after her January 17th 2017 post here. I'd say it's pretty safe to guess that she was not diagnosed with IBC or anything of concern.