Amber's Story

I will never forget that day when I heard the words, "We believe you have an aggressive form of breast cancer called Inflammatory Breast Cancer." The words themselves were not a surprise, but the feelings of dread and overwhelming grief were. You see, I had suspected for months that I had breast cancer. Because this form of cancer was so rare, many doctors don't recognize it because they haven't seen it. I had read about it on the internet and had many of the symptoms. I was worried that I had it, yet wasn't diagnosed until a year after my symptoms started. I was a 27 year old mother of 5 who was breast feeding her 4 month old baby. So in early June 2006 when my right breast turned red, hard, and swollen, I was told I had mastitis. I was put on antibiotics, but they didn't help. I ended up in the ER with IV antibiotics. My symptoms were relieved a little bit, but never went all the way away. I was unable to breastfeed with my right breast because it was too painful. Months went by and my right breast continued to grow larger. I returned to my OB-GYN, and was told that I was engorged with milk. I accepted his explanation, and more time passed.

Six months passed from the onset of my breast problems, and I began to have severe pain in my hip and back. From January-March 2007 I visited a chiropractor, an orthopedic surgeon, and a physical therapist. I did physical therapy, had a steroid injection, did a few weeks of spinal decompression and electrode therapy, and yet my pain continued to get worse. I could hardly walk, couldn't lift my one year old baby, couldn't bend.

At the same time I was having this pain in my back and hip, I was still concerned about my breast. I went back to my OB-GYN, and was once again told that my breast was just engorged with milk. This just didn't seem right to me, because I hadn't had any milk come out of my right breast in 6 months. I was still breastfeeding with my left breast, but my right breast was much larger than my left. Still, I trusted my doctor.

In March-April 2007 my breast began to change even more. It had a mottled purple look, and the skin became really thick and looked like the skin of an orange. My nipple turned yellow, and inverted. I was very concerned. One night I was searching the internet to see if I could figure out what was going on with my breast. I stumbled upon a website about inflammatory breast cancer, also called IBC. IBC is a rare, but very aggressive form of breast cancer. It accounts for between only 1-5% of breast cancer. It usually spreads in nests or sheets in the breast, rather than a lump. It is often misdiagnosed as mastitis. The more I read on this site, the more I felt this deep dread and fear inside. I was sure that this is exactly what I had!

The next morning I called my OB-GYN and requested that I be seen that same day. I brought with me a print out of the symptoms of IBC. I told my doctor that I was worried that I had IBC, and he said, "I have been practicing for 20 years, and I have only seen 1 case of inflammatory breast cancer, and you don't have it."Of course I was relieved that my doctor didn't think I had IBC, but I was still concerned about all of the changes in my breast. So, the doctor told me, "I am 99.9% sure it is nothing, but for your peace of mind I will refer you to a surgeon."The first surgeon I saw just glanced at my breast, but didn't think anything serious was going on. He sent me for an ultrasound. The ultrasound result came back as "normal breast tissue", even though by this time, there was a baseball size mass in my breast. I just couldn't understand how this could be!

Luckily, my sister-in-law is an OR nurse. She had heard about my breast issues, and she referred me to a different surgeon who has had a lot of experience with breast cancer. This second surgeon was very concerned when he saw my breast. He had me scheduled for a mammogram the following day.

Film after film after film was taken during my mammogram. I was beginning to get worried. Then I was taken for another ultrasound of my breast. That is when the radiologist came in to do the ultrasound herself. She was able to see enlarged lymph nodes. She showed me the films from my mammogram, which showed cancer sprinkled like sugar all over in the supposed "normal breast tissue". That is when I heard those words, "We believe you have an aggressive form of breast cancer called Inflammatory Breast Cancer."

For a moment, time stood still. And the next moment, my world had changed. The next week was a whirlwind of tests, doctors appointments, biopsies, port placement surgery, more tests, more appointments. The test results did indeed come back as inflammatory breast cancer that had metastasized to my bones and right lung. I had lesions on my skull, ribs, spine, femur, pelvis, and hip and shoulder joints. That was what was causing all of my pain. I felt relieved on one hand to know the cause of my pain, but so frustrated on the other hand. If my OB-GYN had been more proactive, more aware, we could have caught the cancer sooner.

Women need to be more aware of this form of breast cancer, and be aware that you don't have to have a lump to have breast cancer. Women need to know that breast cancer can occur in both younger and older women. Breast cancer can even occur in men! I was 28 when I was diagnosed with breast cancer, 12 years younger than the age when mammograms are recommended.

Because the cancer had spread beyond the breast, it was considered stage 4. I will never be cured, will never be in remission, and will be in treatment the rest of my life. The five year survival rate for inflammatory breast cancer is less than 10%. I pray daily that I can beat the odds and be part of that 10% that survives 5 or more years. I did 5 months of weekly chemotherapy, I lost my hair, my eyelashes, my eyebrows. I lost my breast, my ovaries, and my uterus. I lost my sense of taste, and my sense of smell (which isn't always a bad thing when you have to change poopy diapers!) I had radiation 5 times a week for 6 weeks. I have continued with targeted therapies once every 3 weeks since February 2008. Even with good health insurance, our portion of my cancer treatments cost us more every month than our house payment!

The 14 months since my cancer diagnosis have been the hardest of my life. But they have also been the best of my life. Even though I have lost a lot because of cancer, I have gained even more. I have developed an even stronger, deeper, loving relationship with the love of my life, my husband Dan. I have seen him grow as he has taken care of me, and also taken a more active role with the care of our 5 children. I have learned to cherish every moment with my children and other family members. I don't take things for granted anymore. We have received so much service from our friends and neighbors. They brought meals in 3 times a week, took our children every afternoon so I could rest, planted flowers and pulled weeds, cleaned my house, brought cookies, and many more acts of service. I have learned not to waste time worrying about small things, or holding grudges. I have learned that no matter how hard things are for you, there is always someone who is worse off than you are. I have tried to always keep a smile on my face, and find something to laugh about. I am so grateful for every day that I am still here. I treasure each moment with my children. Even though I don't have the energy that I used to, I always have enough energy to snuggle with them, read them a story, help them with homework, and listen to them.

I was once asked that if I could go back in time and never get cancer, would I. My answer was no. I truly believe that hard things in life make us appreciate the good things more. If we never had trials or sickness, we can not fully appreciate the joys of life. If there wasn't a cold, long winter, we couldn't fully enjoy the beauty of spring. If we were never sad, how would we know what happiness is?

The message I would most like to share with others is this: There is always good all around you. All you have to do is look and you will see it. Even though I have a terminal illness, I am still happy. I found out just yesterday that my cancer has spread again. In a few weeks, I will begin aggressive weekly chemotherapy again. I will lose my hair again. I will have to suffer all of the painful side effects again. Yet I still greet the day with a smile. The birds are singing this morning, and the sun is shining, and I am still breathing. It is a beautiful day, and life is good.