Inflammatory Breast Cancer Research Foundation

Top 10 Questions Asked by Toll-free Callers

While all cancer organizations address general cancer issues, the IBC Research Foundation is the only one that specifically targets IBC!

NOTE: Before calling the IBC Research Foundation toll-free line, please review these frequently asked questions and general responses that may apply. It is a good idea to review the questions that we may be asking you. Please have the information available.

Can’t locate the answer to a question you have? Use the search box to the right or write to us.

• How do I know if I have inflammatory breast cancer, IBC? I think that I have the symptoms but no diagnosis has been made.
  • The IBC Research Foundation does not make medical referrals. Call a university research hospital or university medical center. You may need to call their cancer center or breast health center. Ask to speak to a breast health nurse. Tell that nurse that you are looking for a breast specialist with experience in diagnosing inflammatory breast cancer. Let the nurse know that you would like a breast specialist to help you “rule out” inflammatory breast cancer as a cause of your symptoms.
  • What are the symptoms? What kind of testing has been done so far and by whom?
  • What is your medical history?
  • We may suggest that you ask that a biopsy, including the skin, be performed if it seems appropriate.
  • See also Imaging and IBC.
• I have just been diagnosed with inflammatory breast cancer, IBC; where do I find the best oncologist for IBC?
  • Where do you live?
  • The IBC Research Foundation does not make medical referrals. Call a university research hospital or university medical center. Ask to speak to a breast health nurse. Tell that nurse that you are looking for a breast specialist or oncologist with experience in treating inflammatory breast cancer.
• What is the appropriate treatment for IBC?
  • While the most common order of the treatment protocol is chemotherapy, surgery, more chemotherapy, and radiation, treatment options vary from doctor to doctor, from institution to institution, and can be based on geography, your individual medical history, and on the stage or progression of your cancer at the time of diagnosis.
  • The information from the San Antonio Breast Cancer Symposium held in December of 2001 presents the use of Adriamycin and Taxotere as first line chemotherapy for newly diagnosed cases of inflammatory breast cancer.
• How do I make a donation to the IBC Research Foundation?
  • The IBC Research Foundation is the ONLY cancer organization that specifically targets IBC!
  • How to donate and links to information about how donations are used is located at our donations page.
  • If you do not have Internet access, one of our advocates will be glad to assist you and provide you with information regarding donations. Please call us at 1-877-stop-ibc (1-877-786-7422).
  • All donations are tax-deductible for U.S. citizens and greatly needed to further specific inflammatory breast cancer research. We thank you for your desire to become a part of the solution to the puzzling problem of IBC.
• How can I order brochures or bookmarks to inform and alert people I know about inflammatory breast cancer, IBC?
  • Brochures may be ordered online through this website or printed from the website. Bookmarks may be ordered online through this website.
• I have completed every treatment offered; is there a clinical trial I can get into?
  • See the links to clinical trials on this webs site at the Clinical Trials page.
• What are the treatment options in Canada?
  • Canadian callers are advised to contact the Canadian Breast Cancer Network for information regarding treatment options.
• What financial assistance is available? How do I qualify? Where do I start?
  • Go to Medicare, Medicaid, Cobra, Social Security, Family and Medical Leave Act available on this website.
  • Contact Cancer Care at CancerCare.org or at 1-800-822-6507 if it is an insurance issue. They may be able to provide you with advice.
  • Websites and phone numbers for patient advocate organizations can be found at:
    • The Center For Patient Advocacy
    • The Patient Advocate Foundation
    • The National Insurance Consumer Helpline at 1-800-942-4242
  • In special cases, you may qualify for free air transportation to your treatment location. For more information see:
    • AirLifeLine
    • Corporate Angel Network
    • The National Patient Travel Center
    • Wings Over Mid-America, Inc. at 1-800-474-WINGS
• I have a family member who has been diagnosed with inflammatory breast cancer. What can I do to help them?
  • Our response varies based on the help that is requested. The more information you are able to provide when you call, the better we will be able to assist you, however, before you call, read the following information and stories.
    • Trisha Tester, an inflammatory breast cancer patient, has prepared a list for those who want to help.
    • Terri Gaulkin has made a memory book for her mother with IBC.
    • Kathy Casey, who started the “Children of IBC” support e-mail list, writes about her mother, Denise. Kathy has written “Over the Rainbow.”
    • Gayla Little wrote some good things to know about inflammatory breast cancer treatment and the battle with depression.
• Can someone answer my treatment-related questions?
  • Review the list of chemotherapy drugs on this web site, and the links that are available from that page.
  • The National Institutes of Health and the U.S. National Library of Medicine provide the service of Medline Plus Health Information, contains helpful information including drug information, health dictionaries, the adam Health Illustrated Encyclopedia, and more.
  • Answers to these questions tend to be highly individualized. Response will be based upon the information you provide when you call. Remember, the IBC Research Foundation does not make medical diagnoses or prescribe protocols, but we hope we can help allay some of your fears and give you some general information about IBC and its related issues.