Diagnosed mastitis, worried it’s ibc

Duckmomma

I'm 37 post menopause (due to complete hysterectomy 2 years ago, thanks to severe endometriosis). 2 weeks ago I developed a small red rash near my nipple that was very itchy, thought maybe it was an ant bite. Over the last two weeks the rash went from red to almost looking like a bruise, and my breast swelled up, not engorged swollen but definitely bigger. It is still itchy but has also become sore on that side of my breast and near my armpit. I googled it which was probably a terrible idea and freaked out until my appointment for my yearly physical which had already been scheduled for today. I brought up the breast issue and the doctor examined it. She diagnosed me with mastitis, prescribed antibiotics and steroids and said if it's not better in two weeks she would send me for a mammogram and breast ultrasound. I'm pretty concerned thanks to google and the fact I have no fever and haven't breastfed in 6 years. If it is ibc will another two weeks make a huge difference?

TIA for your responses

Duckmomma

no one responded but I will update anyway. I am on day 4 of antibiotics and no change for better or worse. I don’t think it is ibc. I am gonna finish the course of antibiotics and go from there. Curiously I kinda remember having an issue (I think it was a lump that hurt) in the same spot on this breast a couple of years ago before my hysterectomy, mentioned it to the gyn and they felt it and attributed it to hormones, I think they thought it was fibrous or something, so I never thought about it again until now (I had bigger issues to worry about like ovarian cysts and endometriosis on my kidneys and diaghrahm). I haven't been on the estrogen replacement in 9 months, so I’m pretty sure im hormone free, nothing to do but wait and see what’s happens when I finish the medicine

mustlovepoodles

Sorry you didn't get responses, Duckmamma. With the Memorial Day weekend, the boards get kinda slow.

As you probably already know, IBC is one of the rarest of breast cancers. Any Googling of "breast" is going to bring you straight to "breast cancer", and IBC, in particular. IBC is unique among breast cancers for the rapidity with which symptoms present. It worsens over hours and days. The fact that yours is not worsening is favorable. Finish taking the antibiotic and see where you are after that. If it's still not better by then you can proceed with imaging, and maybe also see a dermatologist.

Duckmomma

thank you, mustlovepoodles for your response. After I posted, I perused the forums and realized my mistake in looking for reassurance from people who truly are fighting this disease everyday. I updated hoping another worry wort would read my post and put their mind at ease. I am still concerned about what is going on, and still doubting it’s mastitis, but I do realize the chances of it being cancer are slim, google got me this Time.

LoriCA

Duckmomma you are right to be worried and don't need to apologize. IBC is often misdiagnosed as mastitis, but as mustlovepoodles said, IBC is very rare and the chances of it are slim. If your symptoms continue to get noticeably worse while you are taking the antibiotics or if the lymph nodes under your arm or above your collar bone swell, don't wait the full two weeks before seeing your doctor and getting the ultrasound (IBC often doesn't show on a mammogram). If your symptoms stay the same or improve while taking the antiobiotics, take a deep breath and know that even if it's not mastitis, it is probably something else that has nothing to do with cancer.

Egads007

I had mastitis twice (16 years after I stopped breastfeeding) and the meds always took at least a week to kick in. I know how worried you are and it’s understandable, but you have to let the meds do their thing. Keep us updated, we care

Duckmomma

thank you for your replies. I normally don’t entirely freak out, I initially thought the rash was a bug bite from working in the garden, when it didn’t go away after a few days I googled insect bites on breast and up comes ibc. After that it had started to swell but I wasn’t worried enough to make an appt (don’t want to be a nervous nelly) so I waited until my physical. After being diagnosed with mastitis, I was dumbfounded, so I googled non lactational mastitis and bam there was ibc again. I freaked out a little because odds are almost never in my favor, I ended up with the rare complications from endometriosis, it’s extrememly rare for it to grow outside of the reproductive system, and I have read studies that endometriosis increases your risk of cancers like breast cancer, but they can’t explain why.

I wish google would blast endometriosis like it does ibc, so women wouldn’t spend years with unexplained pain while their fertility is destroyed. Although I suppose if it helps even one woman who has ibc go get her issue checked out early enough, it can’t be all bad.

Still no change for me, it seems like it is pinker, and that is covering more area. IT is still swollen, it doesn’t look engorged it just looks perky, while the uneffected breast is its normal gravity driven self. It’s like an 18 yr old breast and almost 40 year old nursed two kids breast mounted on the same chest. (Sorry for the visual). I’m going to finish the medicine, which will be Done on Sunday, but if there is no change by wednesday, I’m going going call the doctor back about the tests. I’m going out of town next week to see my family and would feel better ruling out cancer before I leave.

ONCe again thank you for the responses and I hope you had a wonderful Memorial Day weekend feeling your best and enjoying your days. I’m sending positive healing thoughts your way.

mustlovepoodles

Google--scaring women since its inception.

Duckmomma

right! Google should maybe adjust their search algorithm so that maybe more likely things come up first when you search. At least webmd and medhealth lists out more likely benign scenarios. I just wanted to see pictures of what different insect bites looked like on the breast to see what could have gotten me. Google was like oh no that’s no insect bite! Oh you have mastitis, wrong!

Egads007

Search Google for ‘lumpy gravy’ and I bet there’s a breast cancer reference. I have a love hate relationship ship with it

Duckmomma

for poops and giggles, I googled lumpy gravy. Surprisingly it's an album by frank zappa. I can't imagine if I was actually trying to fix some lumpy gravy. Yeah same here with the love hate. I hate paying copays so I usually google to see if it warrants going to the dr and paying a copay. Most of the time I ignore it. I've got enough issues with my body to be looking for more.

MelissaDallas

What you CAN search is this board for all the women with mastitis who suspected they had IBC and DID NOT. A frequent post is women, especially with non-lactational mastitis, who disbelieve their diagnosis, that is nevertheless correct.

Duckmomma

I did that search after I posted initially. I am sure I don’t have IBC. I am also sure I don’t have mastitis, I have had no fever, and my routine blood work from my physical the day the doctor diagnosed the mastitis showed no signs of infection. i posted initially just curious because google directed me to IBC being misdiagnosed as mastitis so I just wanted to know how fast it spread So I could know what to look out for. I know the women on here are diagnosed and probably get sick of seeing these posts. Once this has passed I will donate to the site to support it for the women who need it. I will also continue to update as i figure out what is wrong so that if someone with similar symptoms searches she will find it and rest assured that hers too is probably something else

Egads007

Duckmomma - LOL@zappa! The album title is so him, surprised he didn't name one of his kids lumpy gravy. He did however name 2 Moon Unit & Dweezil...think he mixed them up with his dogs!

As a PS my mastitis didn’t come with fever or funky blood work. Sore, achy & red spot ...I probably got it from listening to Zappa ))

Duckmomma

Egads007- lmao, and people think my kids names are unique. They don’t top moon unit and dweezil, although They were lucky I forgot about my original name ideas by the time they were in utero.

Thursday will be a week on antibiotics, so a few more days to go. I got clogged ducts while breastfeeding, but never mastitis. Every time a duct got clogged I did warm cabbage compresses and pumping and it fixed it. I Have been doing the warm compresses now (not cabbage) but definitely not pumping.

LoriCA

Duckmomma, nah we don't get sick of seeing the posts - only when people continue to insist that it is IBC after no worsening of symptoms for several months and a negaive biopsy lol. We know how scary it is to think that you could possibly have IBC and we're happy to reassure anyone when their symptoms don't sound like IBC to those of us who have been diagnosed with it, or share our thoughts when something sounds concerning. Although mine spread much faster than usual even for IBC and got worse by the hour (there was no mistaking it for mastitis haha!), symptoms typically worsen daily, often dramatically. Any time symptoms stay stable or improve with antibiotics or creams, it's a very strong indication that it is not IBC. If all of a sudden your breast swells to twice it's size and is radiating intense heat, you have a massive purple bruise from your collarbone to your waist, the rash starts oozing and your lymph nodes are the size of golfballs, get thee back to the doctor ASAP whether or not you've finished the antibiotics.

Best of luck to you Duckmomma, hope it turns out to be something minor and clears up quickly!

MelissaDallas

Sorry,I didn't mean my message to sound that way Duckmomma. I just know there are lots of similar posts that might be reassuring. I can't think of one where anyone diagnosed with mastitis turned out to have IBC.

Egads007

Note to self: don’t eat Duckmomma’s cabbage rolls or coleslaw.

Melissa and LoriCA both give the best info, hold on to that. I know it sucks right now, we all know, so post as often as your lil heart desires. I’m helps. Just don’t offer us cabbage.

Duckmomma

Egads007 lol no cabbage or coleslaw here, ducks eat everything green and leafy in my garden. Another google fail. Google said ducks were good pest control in the garden, what they didn’t mention is that it’s because the ducks eat everything so the pests don’t get a chance.

mustlovepoodles

LOL, Duckmomma. My sister had chickens and ducks. She thought it would be so bucolic. The chickens weren't so bad, but the ducks ate up her garden and pooped everywhere. After the coyotes got the last one, she decided no more ducks!

Duckmomma

I have chickens as well, I don’t know about bucolic, they are a ton of work. The ducks are loud and messy, but I love them even if they hate me. The chickens are cool.

Duckmomma

day 7 of antibiotics, and it is a lot more swollen. I put a call into the dr today for that referral for mammogram and ultrasound. She wasn’t in so hopefully I get it tomorrow.

mustlovepoodles

Fingers crossed for ya, Duckmomma .

Egads007

Duckmomma I’m sorry you’re still in limbo and the swelling is worse. Hang in and let us know if you get your referral tomorrow. I’m still holding out for infection and nothing more. Positives being sent your way

Duckmomma

thank you, fingers crossed! I just wish all of this would be resolved before I go visit my family in Florida next week. I haven't been since I moved three years ago.i really don't want to be on antibiotics when I go, since I'm planning on going to ladies night with my friends and haven't been out since I moved.

By last night it was a lot more swollen and and the nipple is now acting wonky (maybe because of the swelling) They were flat to begin with, and now that one is indented on the bottom. The rash pinkness/redness hasn't changed at all. If they get me the referral early enough today, I can see about getting an appt today or tomorrow so I can go ahead and move forward. Stupid boob.

Also super cranky, yesterday morning I was awoken at 4am by a child getting sick in my bathroom, half asleep I ask him if he flushed the toilet and he says “oh, you think I puked in the toilet” of course not why would I think that, no it was the floor in front of it. Thought i would catch up last night, wrong again! Cat knocked a glass of water on my head at 4am. Couldn’t go back To sleep. I totally get those old Calgon commercials, calgon take me away

mustlovepoodles

Sorry for laughing, but I'm picturing you getting bonked the head with a glass of water in the middle of the night. Dumb cat! And sorry your kid threw up in the floor. Why do these things always happen at 4am?

Duckmomma

I’m wondering the same thing!! That must be the witching hour to wake me up. Even 5 or 6 am would have been better (although there is never a good time to have a glass of water knocked on your head) The cat was lucky it wasn’t thrown out to deal with coyotes last night. Two nights in a row with little sleep, almost all rationality goes to the wind. The kid threw up all morning yesterdaythen was his normal self the rest of the day, no idea what caused it, no fever. He went to school today.

Duckmomma

so mammogram and ultrasound tomorrow afternoon. They said to schedule in two hours because the radiologist will go over results before I leave. Fingers crossed it’s just an abces or something like that.

sbelizabeth

Duckmomma, good luck tomorrow! Hoping for reassuring news.

Since the topic of IBC is on the table, be aware that a mammogram and ultrasound can sometimes miss the subtle signs of IBC, particularly if there's no lump present, which is frequently the case with IBC. Occasionally a slight skin thickening is the only clue on mammogram. Since IBC is cancer that is clogging the lymphatic channels in the skin of the breast, a skin punch biopsy of the area with the rash is most diagnostic. Sometimes even a skin punch biopsy can miss the cancer emboli in the skin, but it's more sensitive of a test for IBC than a needle biopsy.

Tomorrow, when your radiologist goes over the results with you, my advice is to specifically ask about the rash, specifically ask about skin thickening, diffuse enlargement of the breast, stromal coarsening, diffuse increased density, or enlarged lymph nodes. EVEN IF A LUMP IS FOUND, discuss the rash.

Here's my story: I found a 3-inch circle of pink, swollen skin, with peau d'orange texture, on my breast. On mammogram and ultrasound, a tiny (1.2 cm) lump was found that turned out to be malignant on needle biopsy. Everyone ignored the pink, swollen "umbrella" of skin above the lump and and zero'ed in on the small lump, until a lumpectomy was done and it was discovered during surgery that a sentinel node biopsy was impossible--my lymph nodes were too clogged with cancer to absorb any of the radioactive material or the blue dye. An axillary node dissection was done that revealed many affected nodes. Only afterwards was I sent to an oncologist, who insisted on a biopsy of the suspicious skin, which, of course, was chock-full of tumor emboli. Things shifted into high gear after that, but I lost precious time before beginning chemo, dancing around with that lump.

I'm telling you this just to give you more knowledge, not to scare you! I'm almost seven years out from that chapter in my life, and all is well. My sister was diagnosed with IBC nine months after me, and she's thriving as well. Whatever lies ahead--whether it's heat rash or something else, you can get through it, one day at a time. SB

kmartin3243

Good luck Duckmomma!

Thinking about you tomorrow! Hoping everything turns out just fine!

Egads007

Duck - I’m so glad you got it all lined up, and getting to talk to the rad...awesome! A lot of places kick you out after and make you wait a week for results (legalized torture I call it). We’ll all be there in spirit with you tomorrow, fingers, toes and even eyes crossed for good results. Almost there, deep breaths!

Stay back from the Zappa... anyone that sings about lumps of any kind can’t be good karma!