IBC Changed All of Us
by Susan Lonon, age 50
Spartanburg, South Carolina

On Saturday, March 25, 2000, I found a red, quarter-sized spot on my left breast. How this seemingly insignificant finding would change my life and the lives of all my friends and family members, I had no idea. Monday, I had a friend of mine in a nurse practitioner program check my breast. I watched her face as she felt my now-swollen breast, and it was not the expression I wanted to see. She spoke the words “Inflammatory Breast Cancer” and told me to get to my surgeon that day.

Having been a nurse for more than 25 years in the same city, I called the surgeon who had successfully removed my husband’s colon cancer thirteen years earlier. I felt that I would be well cared-for in his practice. He examined me that afternoon. When I asked him if he thought it was IBC, he assured me it was nothing bad. He told me I had mastitis and prescribed antibiotics. I asked him how a 49-year-old woman who hadn’t breastfed in 17 years could have mastitis. He laughed and said, “Just lucky”. The antibiotics did no good. I kept calling the office, but I was repeatedly told that it would take time. The following week, I had a mammogram and ultrasound. The radiologist seemed concerned but told me to come back in 30 days. I continued to call the office a couple of times a week until May 2, when I had had enough. I went to the office, demanded my films, and took them to another surgeon. I will never forget the words of the receptionist as she chastised me for being impatient. “Well, even if it is cancer, it won’t spread THAT fast”.

On May 8, I had a core biopsy. The tissue floated, so we all felt confident that it was benign. I went to work as usual the next day, not really concerned. Just after lunch, the surgeon who had done my core biopsy came to my unit and pulled me into the conference room. He didn’t have to tell me. I knew by his expression that it was malignant, and he confirmed that it was IBC. He scheduled an appointment for me to meet with an oncologist the next day. Everything was a whirlwind after that. Within a week, I had a scans galore, EKGs, lab work, a porta-cath, and chemo. I cried during the entire infusion because I felt everything was futile. The next chemo I was given I.V. Ativan and not one tear was shed! In fact, it was almost enjoyable!!

Because my oldest son was getting married, we postponed my MRM until after the wedding. By this time, I was totally bald. There is nothing to compare with an outdoor afternoon wedding in South Carolina in August heat when you are wearing a wig. I will always wonder who that woman was in all those wedding pictures.

When I had the MRM the surgeon felt good about being able to get everything out. The tumor had shrunk significantly, but I still had 12 of 18 positive nodes. My case went to the Breast Cancer Committee, who recommended high dose chemo with stem cell rescue. I went through the most thorough work-up of my life to make sure I could withstand it. The stem cell procedure was not as bad as I anticipated, but I have very little recollection of the 2 and a half weeks I was in the hospital.

My friends got together with my husband and worked out a schedule, so someone would be with me at all times, and he would only have to stay during the day. We also found that my insurance would pay for sitters at night. My wonderful friends sat with me during the vomiting, beeping I.V. pumps, and my general lunacy that came from a myriad of drugs. My 50th birthday party was brought to the hospital. My family was my rock, especially my husband, who was always there for me no matter what.

I am not glad I had IBC, but if I had to have it, I AM glad that to have it now and not 10 years ago. I look back over the past 17 months and I cannot believe what WE went through. IBC has changed everyone around me. We look at each other differently now, knowing that together we can accomplish much more than we ever thought. This has not been just my fight. I had a team right alongside me. Many prayers were said for me, and I know that made a difference. I have been NED since October of 2000, but I am realistic enough to know that the demon may return. I may not live to be 94 like my mother-in-law, but I DO know what it feels like to be surrounded by love.

Story Submitted 2001