IBC or what????
Anyone who has ever been diagnosed with IBC I would greatly appreciate advice. My symptoms are breast pain in my right breast. It feels like inflammation (I can feel it when it is swollen), swollen lymph nodes under my right arm and swollen lymph nodes in my right shoulder. The pain in my right shoulder is so severe at times and feels like it is in my bones. My right arm feels heavy and is swollen and painful.
I do not have any distiguishable lumps that I can find, but I have had a breast reduction and feel a lot of scar tissue. I went for a mammogram yeaterday and the technician told me they would call me if they found anything, but that she did not see anything to worry about. However, I know that IBC is not picked up in mammograms.
Im so scared and not sure what to do. I do get tenderness in my left breast too, but not anywhere near like in my right one. I have recently been diagnosed with a positive ANA result and my Dr says I have connective tissue inflammatory disease. I have read that positive ANA results in cancer too.
Thank you in advance for your advice.
Comments
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I don't have IBC, but I just recently went through a scare, with a breast rash and was posting here for advice and searching everything I could about IBC.
If I were you, I would see a breast cancer surgeon and have them take a look at it. They can do tests like MRI and Skin biopsies.
Several of the ladies here have had negative tests results, so like most of them say you really have to be your own advocate and demand tests, if you feel something is not right.
Praying for you!
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Poodlegirl,
So sory you are going through this. I do have IBC. I presented in 2009 with inflamed swollen nodes in the armpit with no tumor. Had MRI, mammogram, ultrasound and ct. They thought I had lymphoma bevasue there were only swollen nodes. They did not hurt nor was there a rash for a year and a half. The bx of the nodes came back BC. Usually there is not tenderness in the breast until it is late stage. The skin also gets thickened and can look like an orange peel. You are correct about the connective tissue disease, which is what I hope is causing your symptoms.
Do continue to get the medical care you are recieving.
My shoulder did not start hurting until I was very advance stage and both breast were involved and it was obviously IBC.
Soft tissue connective disease and infection will also cause swollen nodes.
Keep us posted and I will say a prayer for you.
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Thank you so much for your advice, thoughts, and prayers. I appreciate them very much.
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Are they going to bx the swollen nodes?
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first she is going to see how my body reacts to the Plaquenil she started me on for Lupus. She is convinced that the swollen lymph nodes are part of a lupus flare. She told me to give it a week or so, if I was still having a problem, then she would send me for a biopsy.
Also, I had an abcessed tooth pulled yesterday. The lymph nodes in my shoulder have gone down since I had it pulled. My dentist said if it goes away with the course of antibiotics then it was due to the abcessed tooth (on both sides of the tooth was abcessed and I did not know it).
But the ones under my arm are still swollen and I know that my tooth can not affect those.
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Lupos can affect the ones under the arm. I am glad the other ones did go down. Maybe Plaquenil is all you will need. My sister's nodes swell from her sclerderma. She has had them bx because of my IBC and hers were negative.
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Poodle, I had IBC (finished treatments in Oct) and my symptoms were toughened skin all across the middle of my boob, lots of swelling in the boob, looked a diff color overall than the good one. LATER some pain shot thru it intermittently, and right around diagnosis, a dark red mark appeared overnight, about a two-inch lipstick-type smudge.
ALSO, before all this cancer stuff, I had a bad tooth infection, and it not only did the usual neck lymph swelling, it also swolled up my underarm lymphs (on the good side from BC), but of course I had a terrible infection in my mouth and those crazy people at the free clinic would not give me antibiotic, so it just kept going and going.
My IBC was along with two other cancers in the one boob, IDC and Melanoma, and I had NO IDEA I had ANY cancer until I felt that skin hardness develop, I noticed it when I was pulling a T-shirt on and my hand rubbed against the end of my toughened breast. And yet I had a 5cm+ growth from the IDC aspect of my BC. Imagine that, I didn't feel that, and never did feel it!
My diagnosis of the IBC part came from my cancer doc at the cancer clinic in my town, just by looking at and examining my boob. My understanding is IBC is usually a clinical diagnosis, and then following surgery is when they know for sure. And I had a breast biopsy,too, altho I think it was only directed at the IDC growth and not a skin punch for IBC. The mammogram and US showed the big growth, as well as two smaller ones, and it wasn't until I went thru surgery that they not only confirmed IBC, but also discovered a largish mole I had on my boob turned up Melanoma, altho I did tell the cancer surgeon to be sure to get that thing off when he did my mastectomy. Good thing I did, altho my doc had seen it, too, and agreed it should come off.
Others here have already suggested how to get your breast changes investigated, so I won't add to that. If you see an breast oncologist, he should know thru clinical observation, with an MRI I think being the one that will be the most likely to show it, as well as a skin punch coming in second. But each person who gets IBC has a little different symptom range, but based on my own experience, it sounds like you may luck up on this one. See, it makes perfect sense that my IBC was discovered by me noticing the skin getting hard, because that cancer affects large areas just beneath the skin, sheets of the cancer develop and make the skin tough, because IBC affects a bunch of smallish but lengthy lymph vessels that go thru the breast skin, I think is the story. Oh, and only two out of I think eleven or twelve lymph nodes were cancerous, altho many of my lymphs were enlarged, be it from IBC or just lymphs doing their job, I don't know. Lucky for me, tho, scans showed no spread. GG
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dogeyed,
When you say you skin "thickened" and you felt that, what does that mean? I have read it causes the skin to thicken, but Im not sure what to look for. I do not have the dimpling, or bruising. So I was not sure about the thickined skin. When my breast bothers me, I can feel "inflammation" (best way I know how to describe it) in my breast. Like say you sprain your ankle and you can feel it swell up, but it doesnt look a whole lot different than the other, but you feel the swelling. Its like that. Some activities actually make it worse and laying down to rest eases it off.
I am so sorry you had all of that going on at once. Melanoma scares me. My Dad had melanoma and it is really aggressive. Then you had another aggressive one on top of that. My prayers are with you. I hope you are doing great now. Thanks for your advice and information. It is greatly appreciated.
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poodlegirl,
With my ibc, skin thickening of infected breast felt different than normal one. My left breast tissue was softer while there was a hardness across my entire R breast. My R breast was larger, itchy, red and had what looked like a bug bite. It was also warmer than the normal one.
With your lymph nodes swollen, you should still get this checked out.
Terri
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poodle girl, I hope it goes well for you. I dont know if I have IBC, but I keep getting skin ulcers (3 since summer) on my breasts only and the dermatology says nothing to worry. so I got a 2nd opinion and they said mrsa cause their recurring. I now have pain under my left arm pit. I'm getting colds a lot too. will the doctors think I am a hypocondriac to ask for a biopsy?
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Chigirl365,
MRSA nothing to play around with either. Once you contract it its stays in your system but goes dormat with the right treatment. My brother and my sister have had it and believe it or not it enters your body through you nose. So do not be surprised it they give you a medicine to put up your nose to treat your breast lol. As for your Dr thinking you are a hypochondriac, I would not care what they think of me as long as they did what I asked. You are the best advocate for your health. If you wait on them to recommend it, depending on the Dr, it could never happen. If you have MRSA in your breast, your lymph nodes under your WILL swell up in reaction to the infection. I do not trust dermatologists when it comes to skin infections. I had one tell me I was having an allergic reaction to laundry detergent, after I told them I was not using anything new, and it turns out I had staph infection. So do what you feel you need to about the biopsy. Because if it is MRSA you will need some different kinds of treatments because it is very resistant to most antibiotics.
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Terri,
Thank you for describing it. I am one of those people that needs not only an idea of what to look for, but a definition as well. I am a question asker too lol. I appreciate all the advice. I am going to get the nodes looked at further. My mammogram was normal, thank God for that, but I know it will not diagnose IBC. Therefore, my Dr is going to look into it further. Also, I found out my clinic has a specialist at it and I am going January 4th to see him.
Thank you
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Poodle, I am doing fine now, thank you for mentioning my situation. I have every reason to believe I will not have recurrence and that's the gear into which I've shifted my mind to deal with it. I am much happier, too, than I have been for several years, as they say some cancers can grow for years before it shows (I presume the IDC). I plan to see my dermatologist and get other large moles taken off. I just wish I knew WHY all this happened. And confusing me is this stupid chemo port that was put under my chest skin via surgical implant, it began to hurt about six weeks ago, and so it's coming out on Tuesday, and I really hope the pains I feel will go away after that. SIGH.
I ditto Terri, to elaborate on IBC, the "good" boob feels real soft and moveable, whereas the affected boob feels tougher and stiffer, like the way your heel's skin can get tough. It goes "across," as Terri said, like a band of dry, thickened area. As I said, all it took was for my hand to brush against it, and I instantly knew it was not normal. But I could not see it, other than the swelling and slight discoloration as compared to the "good" boob, and then other people have more visual symptoms as a result of the changes.
I'm SO glad you will see a specialist in IBC early January. He should know what's wrong when he sees you and examines that boob. You are fortunate to have such a person available to you. I hope your symptoms subside with the medicine you're on. Keep us in the loop. GG
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I could also feel the skin thickening in the changes to the nipple. The nipple was flattened. You couldn't get a hold of it to "pinch" it to make it erect. Does that description make sense?
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That description really does help. I have that problem with my heel so i knw exactly what you mean now. Thanks. I am sorry to be one who needs exact definitions, but its who I am lol. I have checked my breasts and I do not feel any "thickening" the way you have described it. I am still going to have it check out though. Better safe than sorry. Hopefully, it is just a lupus thing as I keep being told by my Dr,. But Lupus is new to me and I do not know what is "normal". I am starting to think nothing about this disease is normal at all. It is very complicated. Thanks ladies for all of your advice and information. I greatly appreciate it. I will keep each and everyone of you in my prayers.
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Hi ladies, I was diagnosed with breast cancer June 2011. I had a lumpectomy, did 6 chemo treatments and I'm still doing herceptin untl Sept of 2012. After healing from the lumpectomy I noticed that my breast area not the nipple was red and looked like my pores were open and the nipple was flat. I didn't think too much of it because I thought this from the surgery. Now six months after the surgery it's still the same but now the area around the nipple is thick, rough and dark. I haven't talked to my surgeon/oncologist because I thought that when he looked at it he would've noticed it. But my oncologist hasn't noticed it either. I'm scheduled for a double mastectomy on the 19 of March. I have an appt with my gyn this friday for my annual. I can't say this is really nothing because my sister just got finished with chemo and they found two new nodules on her lungs so I guess it can happen while doing chemo but I pray not... I said all of that to ask does my symptoms sound like IBC? Also I had been experiencing breast pain in that breast well before I was diagnosed with bc and was told breast pain is not an indicator of anything.
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Dlia,
Your symptoms could possibly be IBC but can't say for sure. Are you going to a breast specialist? It took a MRI & a biopsy to comfirm my IBC. My best advise is to follow your gut feelings. It certainly won't hurt to pursue at this point. NJ
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Could be. It can happen while in active treatment. It happened to me. I had already had 6 months of chemo and was in the midst of my 30 rads tx for my original diagnosis of IDC and DCIS when I started exhibiting signs of IBC. All my doctors thought it couldn't possibly be IBC. They told me I had had so much chemo and radiation that there is no way something new could be started while still in active treatment. I insisted that we biopsy it and I was right. It was IBC. But, a change in chemo and I have now been NED for 2-1/2 years.
Make an appointment with your oncologist before the surgery and bring it up. If it is IBC, you want to treat it with chemo before surgery.
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OMG!!! I just stopped chemo on Dec 27th but still doing Herceptin... I should've followed my first mind when I first noticed the nipple flat but I just knew the surgeon was paying attention to it, but I guess he was just paying attention to how good the scar looked... OK I'm not going to get myself worked up I'm going to take your advice and call my oncologist and surgeon and keep my appt with my gyn on Friday. Thank you so much!! I'll keep you posted.
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My breast hurt so bad that I went to the ER the did a chest Xray and blood work but he said he didn't think it was anything to be concerned with. He did notice the redness, flat nipple and that this breast is much bigger than the other one. He gave me a RX for pain, antibiotics and some anxiety meds to make me sleep. I didn't fill any of them I don't want something for pain I want to know why I have the pain and why give me an antibotic if you don't find anything. He told me to followup with my oncologist in the morning to see if she wants to do a MRI or Ultrasound. SMH...
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Might want to go ahead and fill the antibiotic. Usually when IBC is suspected, they start by giving you a round of antibiotics to rule out infection or mastitis. So, go ahead and take it. If it improves, you'll know it was most likely an infection of some sort. If it doesn't, you'll know to keep pursuing it.
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I agree before I left the hospital the doctor told me to look out for little pus like bumps that look like chicken pox it could be shingles... what does shingles have to do with my breast... smh.
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Having double mastectomy on Monday the 19th of March. The surgeon said he didn't think it was anything but if it is it would show on the pathology report.
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I don't have any family here all my family is up north. So I appreciate the info, and hugs even as you all are going through your own battles. Thanks so much!!
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Question... Are you not able to work once you have IBC? I saw on another site that some with IBC were applying for SSD.
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You can still work. I worked much of the time while in treatment. Now, I'm just on Tykerb (have been for 2-1/2 years) and still working.
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I worked throughout treatment with my IBC. Just missing a few days here & there. I am a teacher so I didn't miss any work when I had my bi-lateral mastectomies. I went back to work one month after my surgery. So it is doable. NJ
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I am new to here. i have a wierd story to tell you. around march 3. i woke up and my rite boob / nipple hurt, so i assumed a pimple. i squeezed it!! ouch dont do that.....as the day went on, i could feel my boob swelling, swelling, and pain shooting from nipple. 2 days later i couldnt take it, by now its huge and red and burning feeling, nipple now inverted. went to doc, sent me for mammo, and ultersound. radiologist said we mite be lookin at pagets disease, BIRADS 4. so seen the doc he gave me antibidicts and pain pills, still gettin worse, admited me in hospital 5 days of i.v. antibiodicts and morphine for the pain, thank god for morphine!!!...on the 11th the surgeon not a breast surgeon, did surgery. cut me from my nipple towards the rib cage. still in hospial boob feels better. another i.v. antibiodicts for 3 days. discharge me with more meds. the cut its ok i guess. but i still have a lump beside nipple, is this scar tissue from only 10 days?..nipple is flat inside chest, dont poke out and has a slit. i saw my gp. he said its normal. and i have like a prickly burning feelin, and where the cut is a hard irregular lump. the pathology report came back negative. g.p said thats all that matters. i said ok what kind of infection did i have?..he said i dont know. i said u.s. and mmamo showed no abcess but surgeon said he removed an abcsess?..no fluid in either test and showed no infection with blood test...so am i losong my mind?..i dont feel like he got it all out oris ther a special test to check for i.b.c? pagets? or is it just one big biopsey to check for all cancer?..why do i still have a lump?..i sound like a crazy person, but i live in alberta, canada, it SUCKS to get good doctors...please help or try answer what i am saying i guess. i have all my reports from mammo and u.s, there r in my drawer so tryin to rember what they said my memory..oh ya!!! thats another thing, my g.p. said that if the surgeon listened to the radiologist that i would of still been in pain?....oh why cant i get an answer like .....you have soso infection or soso cancer or soso lost your mind?..lol
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