≡ Menu

Inflammatory Breast Cancer: My Story (Part Two)

Part one of the story is here….

My mom told the people at MD Anderson the entire story and they agreed it was not acceptable to just wait when inflammatory breast cancer was suspected. It needed to be ruled out with certainty and they scheduled my appointments. I had to go back to my OB’s office for permission to travel and my OB who had been treating me was out of town. I saw another OB in the practice who was not very happy with the treatment I received from the dermatologist and told me she would continue to call his office until she was able to speak to him about it. I then called my primary care manager to set up a referral through Tricare to be able to go to Houston. It took some work on his part to get it to go through (since I was asking for a referral to a clinic that was 800 miles away) but ultimately Tricare did approve it.

Later that afternoon, I received a phone call from the dermatologist. He informed me that he had just spoken with my OB and I had absolutely no business going to MD Anderson for a second opinion. I could not believe what I was hearing! I asked again if he could tell me for certain that I didn’t have cancer and he told me again that he could not. The conversation went downhill from there and I will never see him again for medical care of any kind.

That weekend, my mom and I left for Houston. The folks at MD Anderson (MDA) were not able to tell me how long I may have to stay so we decided to drive rather than fly. When we arrived at MDA, I was amazed at the sheer size of the place. It was huge and very impressive. It was also a very scary experience as everywhere I looked, it was obvious that other people around me were battling cancer. It was definitely an eye opener.

I met with the doctor who did a breast exam and told me it was in my favor that it was on both sides. She noted that I did have redness, dimpling similar to peau d’orange and skin thickening. She ordered a few tests to be performed over the next two days including a mammogram and ultrasound. MDA proved to impress once again as both tests were able to be scheduled so quickly. Not only that, but within an hour after each test, my doctor had the results on paper as well as being able to pull up the images online…and they had already been read by the radiologist. In fact when I had the ultrasound, the radiologist came in to repeat it after the tech just to be sure nothing was missed.

When I met with the doctor for my results, I was told that everything looked normal except for the skin thickening which she also noted during my clinical exam (another symptom of IBC). However, I knew from my research that a mammogram and ultrasound could not be used to confirm or rule out inflammatory breast cancer. The radiologist had also confirmed this earlier. She told me I was free to go home. So I asked my infamous question again “Are you 100% certain I do not have cancer?” Her answer was no and the best she could give me was 90% certainty. She wanted me to return home to be treated for what “must be some kind of infection” and she rattled off several things including MSRA, mastitis and cellulitis. She was recommending a possible treatment plan of three months of oral antibiotics and four weeks of IV antibiotics to be administered daily. But she said she couldn’t make that call and told me to find an infectious disease doctor to decide which antibiotics should be used. I was visibly upset and asked for a biopsy on the other side. She informed me that another negative biopsy would still not rule out cancer and if the treatment plan of more antibiotics didn’t work, I could return and she would perform more tests to look for the cancer.

That plan would have put me at the beginning of the fourth month since the onset of the symptoms. I asked her if what I read about IBC was right (that it was fatal within six months without treatment). She responded that was the case and you did not have the luxury of time with this type of cancer. Yet, she was telling me to go home and wait it out for another month.

I was devastated and felt that once again I was being brushed off. All I wanted was to know for certain that it wasn’t cancer. When we got back to the hotel room, I looked up all the possibilities she told me it could be and NONE of them sounded similar to my symptoms. Each one mentioned at least one thing that was present almost always that I didn’t have. My gut was not necessarily telling me it was IBC, but it was telling me that the diagnosis of some kind of infection was not right.

About 11pm, I searched online for Dr. Cristofanilli’s contact information, who started the inflammatory breast cancer clinic and was very well regarded in his field. I was able to find an email address that was linked in a press release from 2003. I decided to give it a shot and sent an email explaining my situation.

To my amazement, the next morning, I received an email back from Dr. C. He instructed me to come to his office first thing in the morning and he would give me his opinion. Because I knew he had seen and treated so many cases of IBC, I knew I would be comfortable with whatever his opinion may be.

I arrived at his office with a full waiting room and told the front desk about the email. I was taken straight back. Within two minutes, his nurse practitioner came in to examine me and told me he would be in shortly. Not even two minutes later, he was standing in front of me. He examined me and said “first, let me tell you that this is NOT inflammatory breast cancer.” Instant relief washed over me! He had already examined all of my medical records and just needed to do an actual physical exam to confirm his suspicion that it was not IBC. He told me he was certain and I replied that was all I needed to hear.

It turns out there is a condition in pregnancy, that they do not know the exact cause of, that mimics the symptoms of IBC. It is not an infection and he was sure to let me know that I did not need to take any more antibiotics. The condition will clear on its own when I deliver the baby in August. He was so very reassuring, soft spoken and just overall a pleasant man. I returned to Georgia with a huge weight lifted off of me and a big smile on my face.

While my story ended in a positive way, others are not so lucky. Many women are misdiagnosed as having an infection when it is in fact inflammatory breast cancer. They lose precious time trying out different antibiotics to fight an infection that is not there. Please check out the other pages about IBC that includes what to look for, how it is diagnosed and what the treatment options are. ANY changes in your breasts should be reported as soon as possible to your physician and absolutely do not stop pursuing it until you get answers!

UPDATED: Just as Dr C promised, the redness went away after I had my son. My son is now 4 years old and I’m still here so it certainly was not IBC.

About the author: Stacey is an Army wife of a soldier who joined in 2003. He has since been medically retired but she continues to provide information to Army wives and families to make their adjustment to the Army lifestyle easier. Connect with Stacey: Facebook Twitter Pinterest

{ 50 comments… add one }
  • gr June 6, 2011, 4:22 pm

    Hi Stacey,
    I am 20 weeks pregnant with my second child and am experiencing sharp shooting pain in both breasts; slightly more in right.Nipples are also sore and burning.Breast skin is paeu d’orange for a while now (6+ months; both sides) but my gyn had attributed it to blocked right ovary and general hormonal imbalance in my body.
    I am worried about my breast pain; no redness; but i feel it becoming heavier and soft on and off;like fullness…i am totally scared.I am 31 years old; I really really don’t want to leave my kids motherless and my parents childless…please help me by giving support.
    thanks
    GR

  • gr June 6, 2011, 4:36 pm

    notify

  • T July 31, 2011, 7:31 am

    Hi Stacey,
    I have read your story and was wondering if you might be able to help me a bit. I am concerned for myself. I just had a baby 7 weeks ago and during my pregnancy I developed thickness of my skin on my left breast, along with the orange peel puckering, darkening of the skin and largeness in size & when I squeezed my breast to get baby to latch on I would have these roundish bumps stick up (they were not firm at all and squish down with touch). I discussed this with my OB and when I went to deliver early via c-section, my swelling had increased and I was given an ultrasound to rule out the inflammatory breast cancer (they had only told me then it was an US just to see what was happening – I did not find out they thought it was cancer until a week later). They said the test came back normal and as far as they were concerned it was ruled out. Then within days of delivering both my breasts became very swollen with edema and I could leave very deep indentations on my skin with a small amount of pressure after only a few seconds. Well then my right breast presented a very small patch of thickness and discoloration, which also made my dr believe it was not IBC because it was now on both sides. I am concerned because I had soo many people come and take a look at what was going on and no one (with all those years of experience combined) had ever seen anything like that. (Scary!) I was unable to successfully breastfeed and only able to pump minimal milk for my baby. Eventually the swelling and thickness and orange peel has gone away, along with some of the darkening of skin. Now I have what appears to be swollen lymph nodes in my armpits after pumping for the first time in 4 days. The reason I am telling you all this info – is that I have been trying to find out if the symptoms come and go and if so I need to have more procedures done to rule it out. because if it is IBC -then I am running out of time! I also have read that the ultrasounds may not be able to rule it out. I hope you are still out here helping others and if you would have a chance please tell me what you think…..thank you so much!!
    Sincerly,
    Teresa

    • Stacey July 31, 2011, 8:36 pm

      I’m so sorry that you are having to deal with all of this. Mine was a condition that showed up due to pregnancy hormones and was thankfully not IBC. For your own peace of mind, I would find someone who is familiar with it and has seen it to be able to tell you that is not what it is. Until I saw Dr. Cristofanilli, I was just not convinced. MD Anderson’s IBC clinic may be able to give you some recommendations. The links I have listed all have very supportive women in them who have undergone the diagnosis and may be able to recommend someone as well. Good luck!

  • expecting_mom August 21, 2012, 5:58 pm

    Hi Stacey,
    I just came across your posting. I’m 20 weeks pregnant I’ve been struggling with what appears to be mastitis for 4 weeks with no relief from antibiotics. The biopsy specimen is at the lab as I type this.
    Did you have pain along with inflammation? Did the inflammation go away after delivery as Dr. Cristofanilli predicted? If so, how long after?
    It’s been so long since you posted this. I hope you’re get this message and can respond!

    Thanks!

    • Stacey August 22, 2012, 6:59 pm

      I don’t recall any pain associated mine other than just the heavy feeling but I think that was just pregnancy. And yes, the redness went away within a few days of delivery if I remember correctly. I really hope you have the same results and the biopsy is negative for you. Do you have redness on both sides as well?

  • expecting_mom August 28, 2012, 1:33 pm

    Hi Stacey,
    Thanks for the feedback. Sprry for the delay in getting back to you. The biopsy did come back negative which is a big relief. The downside is that they have no treatment option now other than surgical removal of the hard tissue. It’s only on one breast. I’m really not comfortable with surgery, especially because the doctor says there’s a high chance it might recur. I’m seriously considering riding this out and seeing if there’s a difference post-delivery before going in for surgery.

  • Tina November 29, 2012, 9:12 pm

    Hi Stacey,
    I am 21 weeks pregnant and my midwife noticed the little bit of pitting in my breast slightly like an orange peel but not quite the same, also there is a spot on both breast in the same area where the skin is thicker. This just started recently ( last month or so) my midwife wants em to keep an eye on it and let her know if it gets worse….. Does this sound like what you had?

    • Stacey February 12, 2013, 7:46 pm

      Oh my gosh, I’m so behind on comments (I’ve been battling Lyme disease). I hope everything turned out okay. While I did have skin thickening and the orange peel look, my biggest symptom was a sunburned look that wouldn’t go away.

  • Carissa April 7, 2013, 8:58 am

    Hi Stacey, your page is providing me with more relief than my doctor or loved ones have been able to. I’m 23 weeks pregnant and around the time I was 19 weeks pregnant, I noticed the sunburn like skin you had. It’s completely symmetrical on the inner and under sides of both breast. I started looking up what it might be and found out about IBC. I saw the peau dorange symptom and decided to look closer at my breasts. I noticed that both breast had it lightly, both mainly on the underside of the breast and symmetrical again. Of course with the close examination I noticed an area slight thickening, not too bad, on both breast and symmetrical. I brought this up to my OB and how I thought these were symptoms of IBC. He said yes, but no that’s not what this is, don’t even worry yourself over that. He said it was caused by all the hormones and the extra weight that has been added to my breast due to pregnancy. He also said that bc it’s on both breast identically and symmetrical, it’s not cancer. He told me it would clear up after birth and i should get a sports bra to even out the weight and relieve the underside of my breast. In my head it makes sense but I hadn’t heard of anyone else going through this until your story. The one other thing calming it down is that it seems to lighten up after not wearing my regular bra and i have been previously diagnosed to have increased androgen hormones. Thank you so much for this post. My famioy thinks pregnancy is getting to my brain and it’s nice to finally see someone else has experienced this while pregnant and it not be IBC.

    • Stacey April 24, 2013, 12:24 pm

      I’m glad it helped! I hope the rest of your pregnancy is uneventful and the redness disappears after the birth as mine did.

    • Alison October 24, 2014, 10:08 am

      Hi Carissa I have something similar – my breasts are also very hot where the “sunburned” colour occurs. Did yours clear up after you gave birth? thanks

  • Mom-to-be May 15, 2013, 9:22 am

    Hi Stacey,
    I am 18 weeks pregnant and around two months ago I also developed similar symptoms – redness and thickening of skin, dimpling (peau dorange), swelling and random burning pain. These symptoms are not exactly symmetric and left breast has more redness and swelling than right one. When my OB noticed it, she asked me to take Keflex for 7 days, it didn’t helped so she asked me to see oncology surgeon. After physical examination the doctor did an ultrasound and punch biopsy; to my relieve both tests were negative.
    Since I had already read your blog, I ask the same question “Are you 100% sure that it’s not IBC”, he answered no and said that there is no test that is 100% accurate. He asked to take another antibiotics for 10 days and if the symptoms persist then will do further tests like MRI and mammogram.
    I am wondering should go for a second opinion. In you blog you mentioned that Dr. Cristofanilli has treated many patients with IBC, can you provide his contact number and email address.

    • Stacey May 15, 2013, 12:13 pm

      I’m sorry you are dealing with this. As you can see from my posts, I didn’t stop until someone was able to tell me 100% it wasn’t cancer. All of that happened four years ago and I’m still here so Dr. C was right. He is no longer at MD Anderson but I did find this press release from February and this appears to be where he is now: http://www.jeffersonhospital.org/news/2013/february/massimo-cristofanilli-appointed-director-of-breast-care-center

      I hope this helps. I don’t necessarily think you have to go with him (though I would highly recommend him) but if I were you I would want a second opinion from someone who has seen inflammatory breast cancer a lot. All of the local doctors I was seeing had never seen a case of it.

  • Kate November 5, 2013, 7:05 am

    Hi,
    Can you tell me what the name was of the pregnancy condition because I am going through almost word for word the exact same thing that you did including 23 weeks pregnant, punch biopsies, ultrasounds, and they have found no results other than inflammation and some skin thickening. The next steps are more biopsies. I have tried four antibiotics now- and it was only on one breast at first, but is now on both! The antibiotics don’t seem to do anything so I keep getting more tests and it is all moving so slowly with a week between each appointment. I am so terrified and jut want to know if this is IBC or not for once and for all!

    • Stacey Abler November 7, 2013, 7:44 am

      I’m sorry you’re dealing with this. I was never given any name for what it was but it cleared up just after I had him.

      • Kate November 8, 2013, 11:03 am

        Thank you. After finally breaking down over that fact that no one I have seen so far really knowing IBC, I am seeing Dr. C and I hope to hear the same news that you did.

        • Stacey Abler November 9, 2013, 11:33 am

          Dr C is amazing! I am SO thankful I was able to see him. I hope you’re able to get the same good news! Please let me know!

          • Kate November 19, 2013, 11:35 am

            I was able to see him and he is absolutely amazing! It is the same good news for me. They don’t know what exactly causes it, but it resolves after the pregnancy. He suggested it may be an autoimmune condition that is brought out by the pregnancy. He was so much more thorough and knowledgeable than any of the other breast cancer specialists that I had seen. Also so much more understanding and kind. I am so thankful that I came across your post and was able to reach out to his office. They are all incredible people and were all so compassionate and amazing!!!

  • Faye December 5, 2013, 2:02 am

    Hi.
    Does anyone reading this post know the name of the pregnancy induced condition? I am 26 weeks pregnant & have an appointment with a breast consultant today, hopefully to test for & rule out IBC. My only noticeable symptom is a patch of redness on my breasts. I am based in the UK & there seems to be so little understanding of IBC, that I am concerned I am being overlooked. A course of antibiotics has had no effect on the inflammation. I am so frightened. I can’t bear the thought of being taken away from my lovely husband & little boy.

    • Stacey Abler December 9, 2013, 9:17 am

      I was never given a name for this – just told it was something that rarely happens during pregnancy. I hope yours turns out to be the same as mine!

  • Sara December 23, 2013, 3:55 pm

    Stacey,
    Thank you so much for your post on this. I have been experiencing the exact same thing as you and as many women in the comment section. Redness and thickening initially on one breast and now on both and I’m now 20 weeks pregnant. I’ve been seen by the breast center at a major hospital with breast surgeons that see IBC a lot and they have never had a case like this. I’ve had two skin punch biopsies, a mamo, two ultrasounds and antibiotics with no change. I tried to get into see Dr. C just as you had but he no longer takes patients without an IBC diagnosis. Basically, the Drs are now leaning toward believing it’s just a pregnancy issue and will clear up but as you know it’s still very scary. Your story is one of the few things that has brought me comfort on this. One question: did you have underarm tenderness or any swollen lymphnodes? I have now developed some slightly swollen lymphnodes.

    • Stacey Abler December 24, 2013, 2:39 pm

      I’m sorry you’re going through this. I don’t recall any tenderness or swollen lymph nodes with mine but our bodies can all react differently. I hope yours turns out to be nothing as well!

    • wendy January 6, 2015, 8:12 pm

      Hi whatever was the outcome to this please

      • Stacey Abler January 6, 2015, 9:20 pm

        Mine went away after pregnancy. My son is now 5 years old and I have never had issues with it again.

  • Dana Crouthamel March 13, 2014, 6:22 pm

    I know this thread is old but I had to comment because I am going through a lot of the same issues posted. This thread is one if the only places I found with pregnant women with symptoms on both breasts who do not have IBC. I am 24weeks pregnant and have had symptoms of edema, and orange peel skin on both breasts. The surgeon will not biopsy and I cannot get an answer from any other doctor. I’m seeing Dr. C soon and hopefully I will get an answer. I hope to get good news! I hope this finds all of you in good health!
    Dana

    • Stacey Abler March 13, 2014, 9:55 pm

      Good luck! I hope you get the same good news that I did!!

  • Dana Crouthamel March 31, 2014, 10:41 am

    Well I saw Dr. C and he feels it is not IBC, but a pregnancy related condition. He did order an ultrasound in which everything looked benign. I did not have a biopsy, he didn’t feel it was necessary. My question to anyone who has been through this in pregnancy is, did you breast feed and if so did the symptoms still resolve. Even with Dr Cristofanilli’s confidence I still need to see the symptoms dissolve. I’m afraid breastfeeding will prolong the symptoms. Any advice?? Thanks, Dana

    • Ottavia July 10, 2014, 1:06 am

      Hi Dana, how did your condition resolve? Did your breasts feel warm or burn a little? I m going through this scare right now too.

  • Emma August 3, 2014, 5:55 pm

    Hi Stacey, I’d be really grateful to hear what type of biopsies you were given during your scare? I am going through a similar experience and am terrified (my mother was diagnosed with breast cancer while pregnant with my brother and died when he was only a few months old, and I was 2 – I can’t bear the thought of this happening to me and not being here to see my children grow up…). Your website seems to be the only place where a pregnancy-related diagnosis is mentioned (rather than IBC). I’m 21 weeks pregnant with my 2nd child and live in London, England, and for about the past 6 weeks have had redness and swelling on the underside of both breasts, as well as the orange peel appearance and soreness. I have seen a breast cancer specialist who did an ultrasound and found skin thickening but nothing else. Initially, he recommended coming back in 6-8 weeks but I persuaded him to do a biopsy and am going back this Wednesday for that. He is planning to do a fine needle biopsy (although he said there’s no lump to direct the needle towards, he will do it in the most red spot). I’ve read about skin punch biopsies, did you have those? Should I insist on that too? Like you, he said that the fact it is on both breasts is a good sign and that was why he didn’t feel it was ultra urgent to do a biopsy (even though the other symptoms all match those of IBC).

    I’d also be interested to hear how other peoples’ stories ended up – did the symptoms just go when you gave birth? I definitely had nothing like this in my 1st pregnancy which is why I’m so scared.

    Thanks in advance for any reassurance you can give me! Emma xx

    • Stacey Abler August 7, 2014, 7:11 am

      I did have the skin punch biopsy. They actually sent me to the dermatologist to do it. I was scheduled to do another one and that’s when I emailed Dr. C. After he saw me and told me for certain it wasn’t cancer, I canceled the second one. I hope you get good news. I know how scary it is.

  • Charlotte August 7, 2014, 5:28 pm

    I too am going through something similar, I have the peau d orange look on the underside of my right breast. My left breast is fine. When I wear a bra it does not look as bad but as soon as I take my bra off large deep dimples worsen. The skin is definitely thinker in this area too and it hurts all the time. The pain is not severe but it is uncomfortable. I seen the doctor and he said he could see slight pigmentation of the breast but he didn’t seem worried and told me it was probably Pregnancy related. I asked what could be causing this and he said he didn’t know but not to worry. I was happy with this at first but I can’t help but feel something isn’t right and by not having any tests done could I be leaving it to late or am I just being paranoid. I am so scared as I have a three year old and one on the way. This is the first post I have come across that has reassured me that it may just be pregnancy related but I would like to be certain. I am in the UK and I feel like this is being overlooked. I am glad to see people are going through the same thing. I think it is time for a second opinion. I will keep you all posted.

    • Stacey Abler August 13, 2014, 9:17 pm

      I hope it turns out to be nothing. Definitely best to be safe and get the second opinion.

  • Dana September 18, 2014, 8:58 pm

    My symptoms did resolve about 1 1/2 weeks after I gave birth. I couldn’t really breast feed though because I still had so much edema that my baby did not latch. I don’t recall any burning, just pink, with edema and orange peel skin. It was definitely a scary time before I saw Dr. Cristofanilli. I’m so grateful he examined me. Now I try to tell all the woman I know about IBC!

  • Dana September 18, 2014, 9:09 pm

    Also a few things Dr. C shared with me: if IBC is present in both breasts simultaneously they are usually fire engine red not just pink like IBC can present in one breast. Also the effected breast (s) would become hardened at some point. These were things I didn’t read anywhere in websites. I hope it can put some people’s mind at ease a bit, however, if anyone has any symptoms seeing a doctor is always best. IBC is not something to diagnose or not diagnose on your own.

    • Stacey Abler September 23, 2014, 8:37 pm

      I’m so glad that everything worked out. Thanks for sharing the additional info from Dr. C!

  • Alison October 10, 2014, 2:06 am

    Hi everyone just wondering how everyone got on – did your symptoms turn out to be pregnancy related? Also for those in the UK, does anyone know a specialist you would recommend, I an having trouble finding anyone who knows about IBC?

    I am 15 weeks pregnant with two pink breasts (the pink is almost circles around the areolas), but not symmetrical exactly, a little orange peel skin, breasts hot and burning sensation, with occasional stabbing pain in both breasts. I also have puffy areolas and a little back pain. I’ve been prescribed two courses of antibiotics which haven’t worked.

    I’d really appreciate your responses as no-one here is taking my fears/symptoms seriously as it is so rare to have IBC in both breasts…

    Thank you

  • Carrie November 3, 2014, 9:37 am

    Thank you sooooo much for sharing your story. I have tears in my eyes. How horrifying that no one could rule out cancer for so long. I am 36 weeks pregnant, and have something similar. My OB has never seen anything like it, so I am just beginning the process of finding a dermatologist. I hope my outcome is like yours. It’s so strange to think it could either be nothing or I could have only 6 months to live!

    • Stacey Abler November 7, 2014, 8:01 pm

      I hope you get the same good news! Please let me know!

  • JB November 18, 2014, 11:13 pm

    I just wanted you to know how happy I am that you posted this. I am 20 weeks pregnant, and symptoms started showing up around 10 weeks. I’ve had two benign biopsies (one of an enlarged lymph node and one skin punch). It started on one breast, and has recently spread to the other. The original “rash” has gotten worse – with much more considerable thickening and peau d’orange. I’m having a follow up appt. tomorrow and another ultrasound. I like my doctor, and will be telling him about this thread. I will definitely follow up to let everyone know whether or not I had the same good news in the end. Thanks, Stacey for posting this in the first place. I knew that there had to be someone out there that has experienced something similar, and now I see that there are at least a few.

  • Amber December 16, 2014, 9:37 am

    Hi Stacey! Thanks so much for sharing your story. I am currently 18 weeks pregnant and I also have reddish almost purplish color on both of my breasts. It started around 11 or 12 weeks pregnant, I started noticing a discoloration to my breasts in patches and has now spread over the entirety of both breasts. Both of my breasts are also warm to the touch. Unlike you though, I don’t have any dimpling (orange peel) appearance or thickening. Just the redness and warmth.

    I asked my doctor about it at my 15 week appointment and he said it was either an infection (not likely) or just normal pregnancy related changes. I went home thinking this must happen to lots of pregnant women. It wasn’t until I decided to google it that I realized it wasn’t very common at all! I started reading up on IBC and was getting so freaked out until I found this page! Your story and the stories of the other ladies posting on here has helped ease my mind.

    I just have one question for you, I am planning on breastfeeding my baby. Did you breastfeed your baby? I am wondering if the redness will still go away after the birth if you breastfeed?

    • Stacey Abler December 16, 2014, 6:59 pm

      I wasn’t able to breastfeed because of a prior (unrelated) surgery. Hope all works out!

  • Liz February 21, 2015, 10:04 am

    Hi! First off I just want to say that I am so thankful I came across this blog because I am experiencing almost the exact same symptoms. Google definitely scared the bejesus out of me when I typed in my symptoms so like most I called my obgyn immediately and she, like most, said IBC is very rare and what’s even more rare is for it to occur in both breasts at the same time in the same spot. I’m 18 weeks and noticed the redness and warmth last week on the lower half of both breasts, I go in next week for my sonogram and my doctor said she’ll examine them then unless my breasts get worse (and they haven’t). It’s just so weird and nerve racking not knowing but it’s a relief to know that I’m not the only one experiencing this! I still don’t know if I should get a biopsy done but I hope to know more after I talk with my doctor. I was wondering though, were you big chested to begin with? I definitely was and with the pregnancy my breast are quite large now, so I was wondering if had something to do with the size and blood flow? Just curious to see if there’s a pattern. Thanks again!

    • Stacey Abler March 1, 2015, 12:24 pm

      Yes, most definitely! And I increased a LOT during my pregnancy. Hope all turns out well!

  • Mary March 3, 2015, 8:23 am

    Hi Stacey!

    First of all Thank you so much for this blog and tell us your story at the same time I want to say thank to the rest of ladies to commented this page.

    I am from Spain, and my english is not very well so sorry If I make some mistakes.

    I am 20 weeks of preganancy and a few weeks ago I began to have some changes on my breasts. I have to say that they are really big too. I went to my family doctor because I got the flu and when he was checking my ches he saws my breast a little bit read and hot and he said probably it was a mastitis so gave me amoxiciline.

    When I came home and I checked Google I almost got crazy when I read about IBC. Apart of that symptons I had orange peel in both breasts too, so bilateral.

    That afternoon I called to my OB and I went to her office and her first diagnostic too was a mastitis. She told me that I had to take Augmentine for two weeks and it was a mastitis it got better…but not was my case.

    In that days she sent me to the ER hospital for ultrasonogram. In the first hospital they told me it was not necessary because they told it was for my preganancy condition. Eventhought I día not calm down and nexo day I went to ER to my hospital. The doctor make my a phisical exam and said the same. It was not a mastitis and send me an ultrasonogram, but at the same time told me that it was bilateral so she does not believe it was a IBC, she believed it was preganancy normal breasts changes.

    The ultrasonogram result said I had the same edema in the same place. I took it to my OB, she told me the same, that it is uncommon when is bilateral but how I was very worried and I talked her about everything I was reading in Google she sent me with another OB (breast specialist).

    I went to his office last week and he said that he does not believe it was IBC, because I have bilateral symptons and it is not frecuently. He still believe they are hormonal changes for the preganancy. Today I went to his office again and he said I have lees orange peel but he prefer checking me frecuently and the next week I have to go one more time. For now he said that does not believe I need a biopsy but never said no to that exam.

    I had bad bad bad days, I though I was going crazy. I have a son, almost 6 years old, and all my nights was crying thinking in my babies.

    Thank to God I funda your blog and now I can believe that the preganancy can do all this because Google was making me crazy crazy crazy.

    Now, after I read all the experiences, take my attention that almost all the rare breast changes become at the same weeks. Dont you think that?

    Well Stacey I hope I could have a happy end like you and the rest of the ladies.

    Kisses from Spain and thank you so much, one more time!

  • Megan November 14, 2015, 6:22 pm

    Wow, what a story! I’m so glad everything turned out well. I am deathly afraid of cancer and check my breasts daily.

  • Ana June 13, 2017, 5:06 pm

    Hi Stacey! First of all, I would like to thank you so much for sharing your situation with so important details about what you have experienced. And of course, to all the ladies that have posted here as well.

    I would like to share my experience as well because I feel it´s important to tell what I have gone through regarding my fears about IBC. This blog is really incredible and somehow relaxed me because after looking for info in google it´s very easy to freak out with so many topics about IBC.

    I am pregnant and found out about 2 months ago that one of my breasts, my left one, was showing some redness in the lower part. I have to admit that I didn´t pay a lot of attention as pregnancy can bring so many changes in our body. However, when I had the 16 weeks appointment with my GP I decided to show him this. He didn´t seem very concerned and just told me that once I had my 18 weeks ultrasound with midwife to show my breast as well. I have done that and she said it could be pigmentation due to pregnancy and to keep an eye on it. One more time, in my next appointment with my GP I mentioned I still had the same redness with peau d’orange and he then decided to send a referral for an ultrasound so that I could be examined. In that same week I got the ultrasound done and the only thing that was found was some thickning in that breast with the redness. The doctor told me she had seen someone with exactly the same and for precaution she sent the report to the main hospital (I live in Oslo, Norway). The very next day I have received a call from the hospital to set up an appointment for the day after. I was of course feeling more and more nervous and anxious. I have a son with 3 years alod and expecting another one.
    I went to the hospital the next day and the surgeon checked me and said that because I had this already for about 2 months with no changes and developments could be hardly IBC, as it can spread very fast. She was very kind and nice and performed a skin biopsy in 2 places of my breast, to be sure and to avoid extra tests if something was not enough. The procedure itself didn´t hurt at all, I had anestesia and it was just a bit uncomfortable but nothing relevant. She mentioned that the sample would go to a lab in the hospital and could take some days to have the results and I should go home and try to relax and not be so much concerned about it. But of course that was difficult, I kept searching for many info online and everything was pointing to IBC. I have breast cancer in my family (my aunt had it some years ago, it was early detected and she is fine now) and I was of course very scared to even think about that being pregnant and with 37 years old.

    Finally the results from the biopsy came and everything was benign! No cancer was detected and everything was normal, for my relief! The doctor said that the only thing found was a skin inflamation and I would be pointed out to a dermatologist and IBC was ruled out. I am now in the process of waiting to be seen by a dermatologist.

    However, I just wanted to share my story as I found this blog and all the comments posted here very useful and important to me, so I wanted to contribute with my story.

    As a summary, my redness is only in one breast so far (another thing that made me fearing the worst because when I read many posts, the redness was in both breasts), no pain, no lymph nodes detected in the ultrasound, only some thickning of the skin, besides both breast are of course larger due to pregnancy, no sore or burning sensation. It now seems that is actually a bit less red and more pink and the area is decreasing. I will have to see what the dermatologist suggests or even wait when I´ll have my baby, to see if the redness goes away.

    All the best luck for all the ladies!

    • Stacey Abler June 19, 2017, 9:58 pm

      Thank you so much for sharing your story. I’m so happy for you that you got good news!

Leave a Comment