What to expect when you are being tested for IBC
When you see your doctor to report symptoms that might be inflammatory breast cancer, the following things should happen.
- Medicine will be prescribed if your symptoms overlap with mastitis or a skin infection. If the medicine works, IBC is ruled out.
- Imaging tests should also be started at the same time. This usually includes a mammogram and ultrasound. Although most IBC patients do not have a lump discernible on imaging, most have some changes like skin thickening which do show up on these tests. Magnetic resonance imaging (MRI) is another test that may be done early in the diagnostic process. The imaging tests will also be useful for guiding the doctor on the best places to biopsy if that is necessary.
- Biopsies should be ordered if the first round of treatment for other possible causes of the symptoms doesn’t work. IBC is an aggressive cancer and there isn’t time for repeated rounds of antibiotics. The usual biopsy method for IBC is skin punch biopsies in the area showing the most changes, as well as in other sections of the breast. It is important to include the skin in the biopsy because by definition IBC is cancer in the lymphatic system in the breast skin.
- Cancer cells, if found, need to be checked for subtype. Some breast cancers feed on estrogen and are called ER positive. Some are positive for progesterone (PR positive). Others have too much of the HER2 protein and are called HER2 positive. Some lack all three of these features and are called triple negative. It’s possible to have any combination of these factors, so cancer could be ER/PR negative and HER2 positive, or triple positive. Your treatment will be based in part on the cancer subtype.
- Blood tests and scans will be ordered, if needed, to determine if the cancer has spread to other parts of the body. IBC that hasn’t spread beyond the lymph nodes is Stage IIIb or IIIc. If it has spread to distant organs it is Stage IV, also called metastatic breast cancer (MBC).
- You will be referred to an oncologist to start any necessary cancer treatment. Because most doctors don’t have experience with IBC, going to a comprehensive cancer center or IBC clinic is ideal. If that is impractical for you, your local doctor can consult with an IBC specialist to make sure your treatment follows standard protocols.
Helpful tips for navigating a diagnosis
The following strategies and resources have been helpful to many of our community members who have been diagnosed with inflammatory breast cancer. Remember, you don’t need to do this alone!
- Ask for a referral to a breast specialist if your doctor isn’t familiar with IBC or doesn’t take your concerns seriously. It’s important to advocate for yourself! You may need to push for biopsies. They can easily be done in a doctor’s office. Because IBC progresses quickly, waiting to see what happens is not a good idea.
- Take someone with you to medical appointments to help you process information. Hearing the words, “You have cancer,” can paralyze you and make it hard to hear anything else. Whenever possible, take a trusted companion who can ask questions and take notes.
- Learn about IBC at a pace that is comfortable for you. Some people want to know all the medical details while others want to leave it all to the doctor. The National Comprehensive Cancer Network has excellent downloadable Guidelines for Patients in both English and Spanish that include questions to ask your doctor about each part of treatment, and detailed information about treatment options that can be very helpful in explaining why your treatment varies from someone else’s.
- Reach out to the cancer community for support. Don’t hesitate to contact our message line at 1-877-STOP-IBC or drop us a line with any questions. We will return your call as soon as possible. You can also connect to other cancer nonprofits that offer resources like patient navigation and ways to cope with the financial impact of a diagnosis.