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.