Inflammatory breast cancer (IBC) is a rare and very aggressive form of breast cancer. It only accounts for 1-3% of all breast cancers. The most recent data shows that even with aggressive treatment, the five-year survival rate only stands at 40%. This is in part due to delays in treatment because of misdiagnosis, as it is often mistaken as a breast infection.

Possible symptoms (not everyone will have all of these symptoms):

• Red, pink, or bruised appearance over part or all of the breast. Some people reported it started out looking like a mosquito bite while others had patches of redness in various sizes.
• A breast that is warm to the touch
• A breast that has swollen in size (some have reported dramatic changes in size in as little as 24 hours)
• Peau d’orange of the breast skin. This causes the skin to resemble the skin of an orange peel (in texture, not color)
• Itching or pain in the breasts
• Swollen lymph nodes under the arms or above the collarbone
• Inverted nipple possibly accompanied by discharge of the nipple
• Thickened areas of the breast skin

Please note you do not have to have all of these symptoms. Many women only have a few of these symptoms. ANY changes in your breast should be reported as soon as possible to your physician. Also, there may be a lump present in the breast with IBC but more often than not, there is NO LUMP. This is one reason diagnosis is so difficult.

Many physicians will first treat with antibiotics which is standard treatment as an infection is more likely than inflammatory breast cancer. However, if your symptoms do not clear with antibiotics, DEMAND a biopsy.

Diagnosis

IBC is very aggressive and as such is diagnosed at a minimum stage of 3B. If it has already spread, it is diagnosed at a stage 4 of four possible stages. You cannot delay in diagnosis or treatment if this type of cancer is suspected.

While mammograms and self breast exams are still highly encouraged, there is typically no discernable lump with inflammatory breast cancer. While these tests can confirm other symptoms (such as thickening), they are generally not used to diagnosis or rule out IBC.

According to an article on MD Anderson’s website, the best way to diagnosis IBC is through a biopsy. Be aware that one negative biopsy does not necessarily mean you do not have this cancer, though it is a good sign. Inflammatory breast cancer grows in sheets in the skin and can be easily missed with a punch biopsy. A surgical biopsy where a larger area of skin and tissue is examined is the best way to diagnosis IBC.

Treatment

Treatment for IBC can vary based on where you seek treatment and your medical history. Typical treatment is chemotherapy, modified radical mastectomy followed by possibly more chemotherapy and radiation. There are also clinical trials around the country that you can participate in.

When I was trying to get a diagnosis, I stumbled across a website with a mailing list that could be joined. I joined and posted my story. Within 24 hours, I had more than 30 email responses. The group proved to be an incredible resource of support and information while I was trying to find out if I did indeed have inflammatory breast cancer. If you are ever faced with this possibility, I urge you to join. Dr. Cristofanilli of MD Anderson even mentioned during the appointment that he heard I had been talking with his friends on the support board, as quite a few members are his patients.

The website is www.ibcsupport.org. The website also contains valuable information about IBC.

Additional information can also be found at:

MD Anderson Cancer Center:

http://www.mdanderson.org/Care_Centers/BreastCenter/

Click on the link on the left for the Inflammatory Breast Cancer Clinic

Inflammatory Breast Cancer Foundation:

http://www.eraseibc.com

Inflammatory Breast Cancer Research Foundation:

http://www.ibcresearch.org/

IBC: The Silent Killer (from KOMO news):

http://www.komonews.com/news/archive/4132526.html

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 one 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!

I am sharing this story in an effort to show that you sometimes have to push your way through our medical system for proper care and diagnosis. Please also check out the links on the signs and symptoms of IBC. This type of breast cancer, unlike most other types, does not discriminate based on age and although it can strike older women as well, there have been documented cases as young as 12. I urge you to forward information about IBC to every woman you care about to help spread awareness about this rare and incredibly aggressive cancer.

In late February (while pregnant), I woke up one morning to discover my breasts were red. It literally seemed to have happened overnight and was similar to a sunburn. Since finding out I was pregnant in December, I had increased several cup sizes and honestly wondered just how big I was going to get!

I called my OB’s office and was instructed to take Benadryl that afternoon and night and call back in the morning if there was no change. The next morning, things looked the same so I called back. My four week check-up was the following day so I was instructed to be sure to tell the OB about it then.

He checked me during my appointment and said his best guess was some kind of infection, possibly mastitis. He gave me a prescription for 1500mg of Keflex for 10 days and told me to call the office back after I completed the antibiotics to let them know if it had worked. After 10 days, the symptoms seemed the same so I called back. He told me I needed to see a dermatologist.

I have six month check-ups with a dermatologist because I’ve had several precancerous places removed in the past and it just so happened that my appointment with him was about two weeks later. They said it was fine to wait. I started searching for “breast redness” online and about every other result was for something called inflammatory breast cancer or IBC. I had never heard of this type of cancer and reading the links scared me. But I was still operating under the assumption that I only had an infection.

Finally, my appointment for the dermatologist arrived. He looked at me and said he was also “stumped”. He wanted to consult with my OB and would call me back to let me know what we should do. He mentioned possibly doing an ultrasound just to be sure something else wasn’t going on. The next morning, I received a phone call from the dermatologist office informing me that I was being scheduled for a punch biopsy of the breast. I had read just enough about IBC to know that was not good news and busted out in tears. I was told my dermatologist would be out of town so another dermatologist would perform the procedure on Monday. I asked if I could wait for my dermatologist and was told no, it had to be done as soon as possible.

A few hours later, we had our big 21 week ultrasound and found out we were expecting a baby boy. When we met with the OB after the ultrasound, we didn’t talk at all about the baby and instead we talked about the breast redness. I asked what he was trying to rule out and he replied “malignancy”. He then proceeded to tell me about the signs and symptoms of inflammatory breast cancer. I started to cry again and he tried to reassure me by telling me it was a rare cancer but we had to rule it out to be safe. He gave me another antibiotic, 2000mg per day of Dicloxacillin for 10 days.

On Monday, I went for the biopsy. The dermatologist also explained all about inflammatory breast cancer to me and said that the one thing that was “saving” me at this point was that it was on both breasts and while that wouldn’t be impossible, it would be rare. He also gave me a steroid cream to try. On Tuesday afternoon, I received a phone call from him telling me that preliminary results did not show cancer. I was thrilled! However, his good news was followed with a “but…”. He said if the redness had not cleared by the time I returned to have my stitches removed (and finished another antibiotic) that we would have to assume something had been missed and more extensive biopsies would be performed. So I wasn’t out of the woods yet.

The following Wednesday (now 7 weeks since the redness appeared), I returned to his office. He glanced at me for less than five seconds and informed me that he wanted to give it another month and see what happened. I was horrified. The redness had not improved and I had now developed dimpling on the skin as well (another sign of IBC). Without treatment, IBC is usually fatal within about six months…and here I was, two months in. I asked if he was 100% certain that I didn’t have IBC and he said that no, he was not. I asked about doing another biopsy, at the very least performing one on the other breast, and he said no. He told me being uncomfortable was part of pregnancy and I would just have to get used to that.

Not being 100% certain that I had an infection is one thing. Not being 100% certain about whether I had a cancer that could kill me right around the time of my due date without treatment was completely unacceptable. I called my mom in tears who in turn called MD Anderson Cancer Center in Houston, Texas. MD Anderson has the only clinic in the nation that is dedicated to the diagnosis and treatment of inflammatory breast cancer. It is headed by Dr. Cristofanilli who I would soon learn is an incredible oncologist.

by Rebecca

Infertility is hard enough to deal with; add in the Army and it can become even more stressful.  My husband and I have been dealing with infertility for a total of 25 months-13 of them have been in the Army.  Here are some helpful hints and an idea of what to expect based on my personal experience.

Always keep the contact information of all of your previous doctors.  You never know when records will get lost so it is helpful to keep a list of your doctors’ names, addresses, phone numbers and fax numbers.  As soon as you get to your new (or first) duty station, be sure that you have all of your records transferred to your new hospital.  Having them there before your first appointment can make things much easier

As soon as you get to your new (or first) duty station, call the on post hospital appointment line and make an appointment with your PCM.  Be sure to tell the appointment scheduler that you have infertility issues and that is the reason that you need to be seen.  Here at our current duty station, there is only one PCM who does infertility workups-it could be the same at other duty stations.   Also, don’t assume that you won’t receive help if you’ve been TTC (trying to conceive) for less than a year.  Due to my history of whacky and painful cycles, we received help in under a year.

When you see your PCM, be clear about what you need and what testing (if any) you’ve had done.  In our case, I’d received Clomid and Pregnyl and had previously completed blood work.  What we had not had was an HSG for me and a SA (sperm analysis) for my husband.  Those tests were ordered before I could receive a referral to an OB/GYN.

In my case, our referral was for an OB/GYN on post and he is wonderful.  Others have not been as fortunate.  If you have a bad/rude/uncaring doctor, try to change doctors.  Infertility sucks and it will suck more with a doctor who is less than good.

After testing, speak with your doctor about options.  Be open with him about what you and your partner want to do.  You need to lose all inhibitions about discussing sex and bodily fluids, trust me on that one.  Expect to travel for IUI and IVF.  A few MTFs do them but not nearly enough.  In our case we are looking at travelling across 5 or 6 states to get treatment.

Be realistic about your expectations but also try to be positive.  This is a difficult journey but remember that you are not alone.  Many couples out there face infertility and many become pregnant.  Remember that sex should be fun, even is you have to schedule it around your ovulation.  I want to punch people when they tell me to relax and not stress-hello, this is stressful people-but they are right.  Infertility puts a tremendous amount of stress on a couple and you need to find ways to relax and enjoy each other like you did before infertility.  For us it’s eating out, going to movies, hanging out with friends at the local watering hole-anything that is not baby related.

I’d hoped to be able to close this article with our happy ending but I can’t do that just yet.  We are still on this journey.  Hopefully one day soon we will have our happy ending and you’ll be able to read it at http://liberalgranolagirl.wordpress.com.Until then, we will have fun practicing.