Miracle Birth and IBC Diagnosis in the Same Year
By Linda Aronovsky Cox
In November 1994 at the age of 40, I was breast feeding my eight-month-old “miracle” and assumed the redness, lump and other changes in my breast were caused by mastitis. I called my lactation consultant and put hot compresses on enlarged lymph nodes under my arm. When I felt shooting pain down my arm, a dear friend urged me to call my doctor. On Monday I saw my OB-GYN; on Wednesday I saw the breast surgeon who did a needle biopsy; on Thursday it was confirmed I had Inflammatory Breast Cancer; and on Friday I was in the chair getting chemotherapy. I was fortunate I had doctors who took my symptoms seriously and handled things quickly. This was one week before my husband’s final chemotherapy treatment for his cancer.
In search of a diagnosis, the first mammogram showed nothing; it was all white due to the breast milk. My breast surgeon estimated the tumor size to be about 5 inches. I had the redness, swelling, peau d’orange (puckered, dimpled skin), and nipple changes typical to IBC. I had actually watched my breast change over a period of months, but had ignored the warning signs.
Once diagnosed, I felt I had few decisions to make. I had to do the maximum of every possible treatment. I nursed my daughter for the last time right before my first chemotherapy session. Discontinuing nursing was very hard for me. But my greatest fear was that I would die and my beloved, precious daughter, who was conceived after years of infertility treatment, would never know her mother. My hope and prayer was that I would live until she would be able to remember me. Now that she’s seven, I want to be around to see grandchildren!
I spent the first month after diagnosis, crying every night, overwhelmed by the seriousness of what I was facing. I focused each day on being strong and positive, determined to beat this cancer. I believed in my heart that regardless of the statistics (a 45% five-year survival rate), some people were surviving, and there was no reason that I couldn’t be one of them. I consider it a miracle to be alive and healthy nearly seven years later. And although his cancer recurred 2 months after our baby was born, my husband is now considered cured — yet another miracle.
My treatments consisted of chemotherapy, 11/94-1/95; a modified radical mastectomy, 2/95 (two weeks before my daughter’s first birthday); another round of chemotherapy, 3/95; high dose chemotherapy with stem cell rescue (stem cell transplant) requiring a two-week hospitalization and months of recovery from fatigue, 4/95; 28 days of radiation on my chest, 6/95-8/95; breast reconstruction, 12/95; an elective oopherectomy (ovaries removed), 7/96; Tamoxifen (anti-estrogen drug) 4/96 – 6/01; and, Aromasin (a new anti-estrogen drug with fewer side effects). I still see my doctors on a regular basis and I have been cancer-free since the conclusion of my treatment.
My oncologist told me that inflammatory breast cancer is very vulnerable to chemo and in my case, he was right. After my first round, I could feel the tumor tingling. By the time of my mastectomy, the massive tumor was reduced to a “band of cancer.” Fortunately, though I had 12 of 18 cancerous lymph nodes but there was no other spread. I did the high dose chemotherapy/stem cell transplant procedure because of potential undetected cancer, despite recent studies showing no advantage to this over traditional chemo. It was grueling and I was away from home, but I had no complications. Who’s to say that this might not be a factor in my survival?
It amazes me that only seven years ago, I was the first among all my friends and colleagues to develop breast cancer. Since there were few resources available at the time, I focused my energies on joining other survivor volunteers in founding our local Breast Cancer Resource Center, which has grown into a wonderful strong human service agency. This was a positive experience for me and I encourage others to volunteer to help where they see a need.
Many have said that I survived because of my positive attitude. If survival depended only on attitude, there would be a lot fewer wonderful women dying from breast cancer. I have watched many women who did “everything right” still die. We often believe that if we eat right, live right, think right, and feel right that we will overcome it. Unfortunately, cancer can sometimes be more powerful than we are, but a positive attitude certainly helps us cope with the challenges of cancer treatments and beyond.
I was fortunate to have many friends, co-workers, and fellow members of boards who supported me tremendously, but not everyone can be there for you when and how you may need them. Everyone has their own life and problems and can only give so much. I am touched to learn of women diagnosed during pregnancy, while nursing, or with small children. I thought my story was horrendous, yet I realize that others have even greater challenges. Parenting is difficult under the best circumstances. Adding the diagnosis of cancer and treatments can seem insurmountable but we can cope and our families can thrive in spite of this! Because my daughter was an infant, my main focus was on keeping her routine consistent. There is an excellent book by Dr. Wendy Harpham, a mother and cancer survivor, called “When a Parent has Cancer, A Guide to Caring for Your Children,” which includes a book for kids, “Becky and the Worry Cup” (Harper Collins, 1997.)
When I was lying in my hospital bed, awaiting the return of my stem cells after four days of high dose chemotherapy, feeling sick, exhausted, and somewhat sorry for myself, suddenly everything fell into perspective. The date was April 19, 1995, the day of the Oklahoma City bombing. I watched the news unfold with live video showing the loss of so many, particularly the babies and children. As I lay there weeping, my problems seemed so much smaller and I became grateful for the many blessings in my life. This was a transforming moment for me. I had a new sense of appreciation for life. Even with its problems, life can go on and many DO survive breast cancer!
Story Submitted 2001