Inflammatory Breast Cancer Frequently Asked Questions (FAQs)

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• What is Inflammatory Breast Cancer?
• What is covered under Medicare, Medicaid, and Cobra?
• How can I donate my body to research?

What is Inflammatory Breast Cancer (IBC)?

IBC is an advanced and accelerated form of breast cancer that is always classified as IIIb or IV on a scale that ranges from I-IV.

IBC is usually not detected by mammograms or ultrasounds when there is not a defined tumor.

IBC is in the lymphatic system which is a part of your immune system that protects you against infection and disease. The cancer cells clog the lymphatic system just below the skin, causing the breast to be discolored and warm to the touch.

IBC usually grows in nests or sheets, rather than as a confined, solid tumor; therefore, it can spread throughout the breast without a detectable lump.

Can you tell me what is covered under Medicare A,B, and Medicaid?

I am divorcing and have been told I will lose my insurance through my current husband's insurance after 3 yrs.  The Cobra lawyer says I can use that coverage for only 3 years.  Is that true?

Answers to these questions, that apply to those living in the United States,  can be found on the following websites:

1. Questions and answers regarding COBRA: http://www.benefitslink.com/qa_columns/COBRA/questions.shtml
2. Medicare: http://www.medicare.gov/   or call 1-800-MEDICARE
3. Health Care Financing Administration [Medicare, Medicaid, and SCHIP (State Childrens Health Insurance Program)] http://www.hcfa.gov/ The Patient Advocate Organization at:   http://www.patientadvocate.org/ and their resource pages at: http://www.patientadvocate.org/patient.htm and http://www.patientadvocate.org/patient2.htm and their special resource page with information regarding resources per State: http://data.patientadvocate.org/. At the above website, choose your State from the left-hand column and "All" from the right-hand column to discover the various agencies and charities in your State that can provide various forms of assistance and information.

Is there a scientific organization researching IBC that could benefit from the donation of my body for science upon my death?  How can I do that?

The following answer has been provided by a representative of the Cooperative Human Tissue Network (CHTN) of the National Cancer Institute.

We deeply appreciate your efforts to fulfill the wishes of individuals who graciously volunteer to donate their tissue or bodily remains to benefit research. At the CHTN Eastern Division, we did experiment with this approach on several occasions and encountered a number of logistical and scientific obstacles.

I have explored your request with our pathologist and there are a number of medical and scientific reasons why we are unfortunately unable to accept these generous gifts.  I would like to offer some more information which may provide a more satisfying explanation to such patients and their families.

When cancer patients receive treatment (such as radiation or chemotherapy), tissue is affected in a way that makes it unsuitable for many research purposes (most of our researchers are not able to utilize tissue that has been treated).  This type of pre-surgical treatment is very common with IBC patients.

Autopsy tissue also poses limitations and, in most cases, would not be utilized in research specifically on a particular disease Typically, the most scientifically useful tissue is material from the primary tumor prior to treatment. In many cases, though, biopsies are so small that no material is left over after diagnosis.

On occasion, studies may use blood or just medical information to research particular aspects of a disease

Cancer patients can, however, take comfort in knowing that they may already be helping research in a variety of ways: (1) Excess tissue at many
hospitals is used for research purposes; (2) researchers may even conduct
retrospective studies using tissue stored in paraffin blocks for many years
(as required in hospital pathology departments); (3) in many states,
information on cancer occurrences is reported to state registries which are
an important resource for researchers, including epidemiologists.

If you have members who want to do more, they might consider:

1. Contacting the National Cancer Institute (NCI) for information on clinical trials and other research that may need to enroll patients;
2. contacting the National Breast Cancer Coalition or other agencies that may be aware of local research efforts;
3. donating their bodies to a local medical school to assist in teaching and/or research efforts. In many cases, general (basic) research findings may prove to have applications to specific diseases such as IBC.