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 unacceptable to 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 could 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.

The Dermatologist From Hell

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.

My Experience at MD Anderson

That weekend, my mom and I left for Houston. The folks at MD Anderson (MDA) could not 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.

Doctor #1 at MD Anderson

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 could be scheduled quickly.

Not only that but within an hour after each test, my doctor had the results on paper and could 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 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.

Still Not 100% Certainty It Wasn’t IBC

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; 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 recommended 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 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 told me to go home and wait 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.

Refusing to Accept the Uncertainty

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 infection was not right.

At about 11 pm, 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 to a press release from 2003. I gave 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.

Dr. Cristofanilli – My Saving Grace

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 tell me 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 very reassuring, soft-spoken, and a pleasant man. I returned to Georgia with a huge weight lifted off of me and a big smile on my face.

Keep Fighting For Answers

While my story ended positively, 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 include 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: As Dr. C promised, the redness disappeared after I had my son. My son is now 13 years old, and I’m still here, so it certainly was not IBC.

author avatar
Stacey Abler
Stacey's husband joined the Army in 2003 and was medically retired after four deployments. She enjoys sharing her experiences and expertise around Army life while continuing to support Army spouses and families in their military journey.

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56 Comments

  1. 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.

    1. 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!

  2. 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

  3. 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

    1. 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.

  4. 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

    1. 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.

  5. 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.

  6. 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!

  7. 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.

  8. 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

  9. 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!

  10. 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.

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