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Charlotte – 51 Years Old

Your Story
I probably do not have to remind anyone that October is Breast Cancer Awareness Month. Until 2001, I never really paid much attention to the pink ribbons and other activities that filled up the October calendar for a lot of people. The pink ribbon has been a symbol of breast cancer awareness since 1992, when Charlotte Haley created a peach-colored ribbon loop and distributed them at her local grocery store, asking people to wear the ribbon and write to their legislators, requesting their support to increase the National Cancer Institute budget for cancer prevention. That same year, the editor-in-chief of Self, Alexandra Penney, and breast cancer survivor Evelyn Lauder, Sr. V.P. of Estee Lauder, teamed up to create the pink ribbon. The Estee Lauder Company placed them at their make-up counters along with a breast self-exam card, and in return, the company collected more than 200,000 pink ribbon petitions aimed at the White House, asking for increased funding for breast cancer research. Pink ribbons have entered politics and changed the way corporations, legislators and everyday people communicate their allegiance to a good cause. Evelyn Lauder helped found the Breast Cancer Research Foundation, which gives almost 92% of its funds to breast cancer research and public awareness campaigns. Until I began to write this article, I had never researched why the pink ribbon was such a wide-spread symbol of breast cancer awareness. I hope you have found this as interesting as I have. I wear my pink ribbons, hoping that people will ask if I am a survivor. Because a survivor I am! I’ve heard if you live to lunch on the day you are diagnosed with breast cancer, you are a survivor. Well, I’ve lived 9 years, 4 months since I was diagnosed, and here is my story. I was diagnosed with a very rare breast cancer – Inflammatory Breast Cancer – in May, 2001. Until I was diagnosed with it, I had never heard of IBC, and I was reading six health-related magazines a month! Only one to four percent of breast cancers are IBC, always diagnosed at Stage 3B, since it has spread to the lymphatic and dermal systems. From age 34, I had yearly mammograms, since I had fibrocystic tissue, which was difficult to self-exam. But, I had several risk factors for breast cancer. I was a Caucasian woman, over 50, with dense breast tissue who never had children. However, I had no family history of breast cancer. In fact, no one in my family has ever been diagnosed with breast cancer. With IBC, there is no lump, but a cluster or sheet of cells that seem to appear in a relatively short time. Whereas normally, a breast cancer cell can take between five to seven years to form into a tumor that can be picked up on a mammogram, the doubling rate for IBC cancer cells can take as little as ten (10) days. Here is a list of the symptoms: rapid, unusual increase in breast size; redness, rash on the breast skin; persistent itching of breast or nipple; what appears to be a “bug bite” or “bruise” that doesn’t go away; stabbing pain, soreness, heaviness or aching of the breast; feverish breast; dimpling or ridging of breast; flattening or retracting of nipple; nipple discharge or change in pigmented area around nipple. These symptoms may indicate a benign breast disorder. However, any change to your breasts should be reported to your physician immediately, if it does not resolve within two weeks on its own. Two weeks before my husband, Randy, and I were to move to Florida to begin the retirement phase of our life, I noticed the swelling, pain, fever, hardness and pinkness, but was on a business trip and couldn’t see a doctor until I returned to Greenville. I was given a round of antibiotics, but the symptoms did not go away, and a painful mammogram and ultrasound revealed a mass that was about 8.8 cm. A biopsy confirmed what the doctors suspected, and a bone scan revealed six tumors in my spine, making me a Stage 4 Inflammatory Breast Cancer patient. Randy did a lot of research on IBC, and he and I began a journey of doctor visits, lab visits, tests and scans. When I first met my oncologist, one of my first questions was, “Do you believe in miracles?” He was surprised at my question, but answered that some things happen that are unexplained. I told him I believed in them and he was going to see one happen. My journey in faith began at that time. I had many healing prayer sessions and know that God healed me. I also read the book by Dr. Bernie Siegel, “Love, Medicine and Miracles” and this taught me how to be the exceptional cancer patient. I recommend it to all my new breast cancer friends. Randy and I discovered that the informed patient is the best patient, since the doctors want you to be part of the treatment. The more you know and understand what you’re going through, the less frightening it is. Randy was and is still a rock, an angel in training. He was at every chemo treatment except two – once he was fishing and once he was moving us into our new home. Who knew that his wife and his mother would both have breast cancer of the left breast? My treatment regimen was unusual in that I started chemo three days after diagnosis, to shrink the mass. I had four rounds of Adriamycin and Cytoxan intravenously from May 14th through July 18th. On August 8th, I had a bilateral mastectomy without reconstruction, a portacath inserted, more follow-up scans, and began weekly Taxol chemotherapy treatment on August 24th. The follow-up scans revealed a quarter-size lesion in my liver, which was devastating news. After more healing prayer and a liver MRI, in ten days we were told that there was nothing there! God answered our prayers! While I was on chemo, I continued to work, and I worked the entire time as Sr. Executive Administrative Assistant to the President of DSM Pharmaceuticals, missing only 2-1/2 days after with my first chemo treatment. All of my co-workers were supportive, even having daily prayer sessions with me. I felt that I needed to continue to work because I wanted to live as normally as possible. People probably thought I was unaware of how serious things were, fighting a Stage 4 breast cancer, but I was living with cancer, not dying with cancer. In the middle of my 27 weeks of Taxol, in December and January, I was given daily radiation treatments for 6-1/2 weeks – 33 sessions in all, and then continued with the Taxol until the end of March. I had no side effects from the radiation or the chemo, except for a few days of feeling out of sorts (go figure!) every now and then. Talk about supernatural strength from above! I am still on treatment, receiving 4 mg Zometa, a bone strengthener, every three months from a local oncologist, Dr. Arb. Follow-up scans since 2002 show that I am stable with no progression. Since the pathology of my cancer is Estrogen Positive/Progesterone Positive, I also take a daily tablet, Femara. Every six months I have a bone scan, and every year, I have the CT scans. When I ask how long I’ll be on this regimen, I am told, “As long as it works.” And I’m of the opinion, if it isn’t broke, don’t fix it. Since 2001, I have been very active in educating people about Inflammatory Breast Cancer. I attended two American Society Clinical Oncologists International Conventions to assist in staffing the IBC Research Foundation Advocacy Booth. Until about a year ago, I was very active in the American Cancer Society Reach to Recovery program, counseling newly diagnosed breast cancer patients, answering their questions and giving them hope. Some of my best friends are breast cancer survivors – we are a close sisterhood. I also am part of the response team for the IBC Research Foundation, answering questions from people who are concerned that they have IBC symptoms. I initiated an annual North Carolina IBC get-together several years ago, to meet other women going through this same kind of cancer. Our group has grown, unfortunately, but the good news is that we are surviving. My Executive Director is 15 years from diagnosis, and is stage 4. I met a local lady who had never met another IBC patient, and her doctor did not have anyone she could talk to about this rare disease. She and I have become very good friends, because I give her encouragement and hope, and most of all, I understand her fears and anxieties, since I’ve been there. It is sad that the statistics reveal that one out of eight women will be diagnosed with breast cancer, but the good news is that more women (and men) are being diagnosed earlier, with good outcomes, and surviving longer. Breast cancer is not a death sentence. That is my message to you. If you have any of the above symptoms, or if you have any change in your breast, please see a medical professional if the symptoms do not subside on their own after 10 to 14 days. I’ve met ladies who don’t want to know if anything is wrong, but don’t be afraid to see the doctor. There are benign conditions that are not cancerous. One thing I have learned over the last nine years, God is good and still in the miracle business. The doctors didn’t give me a very good feeling when I was diagnosed, even telling me later that they had not expected me to make it. But, I know who is in control. At every opportunity, I speak to different groups, telling my story and giving people encouragement and hope. I’ve had many opportunities to do that since I moved from Greenville. Now that Randy and I have moved to Brunswick Forest, we know that we are supposed to be here and not in Florida. We enjoy our life here and keep busy with Leland First Baptist activities, bridge, Bible study, book club, bowling, fishing, exercising, biking, typing for a court reporter service, and just enjoying life to its fullest. That’s why you always see me with a smile on my face. And now you know the rest of the story.
Age at Diagnosis
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Year Initially Diagnosed
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How Cancer was Found
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Stage at Diagnosis
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Type of Breast Cancer
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Surgery
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Lymph Node Involvement
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Lymph Node Dissection Type
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Radiation Therapy
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Chemotherapy
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Hormone Therapy
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Oopherectomy
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Current Disease Status
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Clinical Trial Participation
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Treatment-Induced Menopause
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Breast Reconstruction
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Lymphodema
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Physical Therapy
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Her2 Status
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Hormone Status
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Genetic Counseling
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BRCA1/2
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