Inflammatory Breast Cancer Survivors
My husband and I were off for our annual beach trip, but first we had to make a detour through Greensboro, North Carolina to meet with some of my on-line Inflammatory Breast Cancer (IBC) friends. Because IBC comprises only one to four percent of all breast cancers, I don't often get a chance to see people who have it face to face.
Inflammatory Breast Cancer Survivors:
Bonnie, Charlotte, Mary, Phyllis and Cathy
This year's lunch was the third time IBC folks in North Carolina have gathered in the middle of the state to compare notes. Charlotte from Greenville in the eastern part of the state keeps us organized. Although she has email addresses for about 10 IBC survivors in North Carolina, our number is usually smaller. North Carolina is a big state, and treatment for Inflammatory Breast Cancer can leave women too tired to traipse across the state for lunch.
Most of the five survivors, two husbands and one daughter who came June 21st traveled about two hours to get there. Charlotte, a seven-year survivor, showed us aprons to hold drains that she makes for mastectomy patients. Mary shared information about the treatments she is trying for her metastasized Inflammatory Breast Cancer.
Last year Cathy was finishing treatment and talking to a plastic surgeon about the possibility of breast reconstruction. This year she told us about the DIEP reconstruction procedure she will have this month. She also brought us information about FORCE, an organization she is involved in for women with the BRCA 1 and BRCA 2 gene, which she has.
Cathy had just returned from the Joining FORCEs conference, an annual forum on hereditary breast and ovarian cancer. The big news at the FORCE conference was the passage of the Genetic Information Nondiscrimination Act. Through the efforts of FORCE and others on May 21, 2008 President Bush signed this new law. Check out www.facingourrisk.org to learn more about what this organization is doing for women at high genetic risk for cancer.
Bonnie is now a two-year survivor and an active participant in outreach activities with the IBC Research Foundation (www.ibcresearch.org). She told us about traveling to the ASCO (American Society of Clinical Oncology) conference in Chicago to help staff a booth to raise awareness of IBC among the oncologists and other medical people who attend ASCO.
She showed us a copy of the National Comprehensive Cancer Network's (NCCN) guideline for the treatment of inflammatory breast cancer and a quote from Robert W. Carlson, M.D., of Stanford Comprehensive Cancer Center and Chair of the NCCN Breast Cancer Guidelines Panel, "Clinically, this [IBC] looks like cellulitis of the breast, and any cellulitis of the breast that occurs in a non gravid, non lactating woman should be assumed to be inflammatory breast cancer" until proven otherwise. For the many women who have been subjected to multiple rounds of antibiotics this new guideline will lead to faster diagnosis.
Every time I get together with my IBC sisters, I learn something new, and I have the pleasure of putting faces to the names I see regularly on my computer screen. Whether it's a formal support group or a Saturday lunch, reaching out to meet others who share our experience enriches our lives.