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.

56 thoughts on “Inflammatory Breast Cancer: My Story (Part Two)”

  1. 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?

    1. Hi Amber. I am in a similar situation. I was wondering if you breastfed after delivery? Did the redness go away? How soon?

  2. 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!

  3. 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!

  4. 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!

  5. Hi!!

    Mi name is Claudia and im writting from Chile. I´m 22 weeks pregnant and today i found a red spot (patch) on my right breast, it doesnt hurt, doesnt burn and my breast feel heavy since i found out i was pregnant, so no other noticeable symptom .

    The thing is, i HAD breast cancer last year (invasive ductal carcicoma, stage IIb grade 3), had 8 rounds of chemo, radical mastectomy of my left breast, radiotherapy and i was super scare my breast cancer came back in my “surviving” breast , till i found your blog and saw that mostly of the girls with this kind of condition have the same pregnancy weeks than me so it must be something normal. Still, i will call my Dr t be sure everything if fine .

    Thanks so much for sharing your story! . Love from Viña del mar

  6. Hi thanks for sharing! I believe I have the same thing going on. For the past month since I was 14 weeks pregnant I’ve had bilateral breast readiness and skin thickening shown in an ultrasound. Trialed antibiotics for a week, oral antihistamine, topical Benadryl, and changing bras without any improvement. Were you given a name for this condition in pregnancy that mimics the symptoms of IBC? I would love to be able to look it up. Thanks!!

    1. Hi Carrie,
      He didn’t give me a name. He had only seen it a few times. Please be sure you get fully checked out and definitely rule out IBC. Good luck!

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