Finding the right team to treat your IBC
Once your diagnosis is confirmed, you may be immediately referred to a team of doctors who will guide your treatment. However, you may decide to go to a different provider. You will want someone experienced with IBC.
The National Comprehensive Cancer Network has a list of member hospitals. The National Cancer Institute also has more than 60 cancer centers. Any of those locations will have expertise with IBC. Some of these have dedicated IBC clinics.
There is no one best hospital for IBC treatment. There are many doctors in the United States who are experienced in treating IBC. Treatment will take about a year, so we suggest you find an experienced oncologist in an area within driving distance of your home. Some patients consult with an IBC specialist at a major medical center, but receive treatment close to home. It is important that all members of your medical team (oncologist, radiation oncologist, breast surgeon, IBC specialist) share information.
Another suggestion is to call a university-based research hospital or medical center in your area or state. Ask to speak to a breast health nurse or navigator. Explain that you are looking for a breast specialist or oncologist with experience in treating inflammatory breast cancer. Often they can help direct you to the appropriate person and assist in making an appointment.
How is inflammatory breast cancer treated?
IBC treatment typically has three parts: systemic treatments, surgery and radiation. This is called trimodal treatment. Your treatment will be tailored to the cancer subtype and how you are staged. About two-thirds of IBC patients are Stage IIIB at diagnosis. That means the cancer is still in the breast and perhaps in some lymph nodes, but it hasn’t spread to any distant organs. Because IBC forms in the lymphatic system, it is always at least Stage IIIB no matter how early it is caught. If the cancer has spread to other organs like bones, lungs, liver, or brain, it is Stage IV and treatment will be similar with some variations.
Although there is a standard of care that always starts with systemic treatment, it is important to keep in mind that doctors may need to depart from the usual depending on a patient’s overall health. For example, a person with heart problems may not be able to tolerate some of the drugs usually prescribed. Patients with a complicated medical history may want to get a second opinion and will want to make sure that all of their doctors are communicating with each other.
Your doctor will often have handouts with information on the specific treatments you are getting. In addition to the below overview of IBC treatment, you can explore more detailed information at Cancer.Net®.
Systemic Treatments
These are treatments which go to all parts of your body to kill any cancer cells that may have escaped the breast. For most IBC patients the first systemic treatment will be chemotherapy.
Neoadjuvant chemotherapy is given before surgery.There are several commonly prescribed drugs. Most fall into one of two categories: anthracycline or taxane. Usually doctors will prescribe both types either at the same time or consecutively. Most chemotherapy drugs are given intravenously in the doctor’s office. Be sure to tell your doctor about all vitamins and supplements you use because some interfere with chemotherapy.
Targeted therapies are another group of systemic drugs. If your tumor produces too much of a protein called HER2, your doctor will prescribe a drug like trastuzumab (Herceptin) or one of the newer targeted therapies. These may be given with or after chemotherapy. Other targeted therapy drugs inhibit the genes or proteins that help cells divide.
Endocrine therapies. Depending on your menopausal status you might receive a drug like tamoxifen or an aromatase inhibitor. These are for people whose cancer subtype is hormone receptor positive. They are usually given after other treatments, but in some cases are used first.
Immunotherapy drugs are currently used mainly for patients whose IBC is triple negative. Drugs like pembrolizumab (KEYTRUDA) boost the body’s immune system to kill cancer cells. Immunotherapy is often used in combination with chemotherapy.
Surgery
A modified radical mastectomy is the standard surgery for IBC. IBC patients are not a candidate for breast-conserving surgeries because the cancer cells were in the skin of the breast which must now be removed along with the underlying breast tissue and adjoining lymph nodes.
Breast reconstruction for those who want it will be delayed for several reasons. For example, radiation affects the elasticity of the skin. If you think you will want reconstruction later, talk with your surgeon and a plastic surgeon to plan for a surgery that will allow for reconstruction at least one year after your treatments are finished.
Stage IV patients may not be good candidates for surgery because they will need to continue systemic treatments to control the cancer in other parts of their body. Surgery for Stage IV patients is on a case-by-case basis.
Radiation therapy
Radiation is next to kill any cancer cells that may linger in the skin or lymph nodes. This is given once or twice a day. Usually the mastectomy scar area and the lymph nodes under the arm are targeted. The lymph nodes under the collarbone (clavicle) may also be included.
Follow-up Treatment
Depending on the hormone receptor and HER2 status, patients may have more endocrine or targeted therapies. If tests show that there is still active cancer, more chemo may be called for.
Dealing with side effects
If you have heard horror stories about a friend’s experience with treatment, you may be reluctant to have some part of the trimodal plan. However, it is important to keep in mind that everyone’s experience is different. A lucky few patients escape with no side effects. Some people may experience quite a few. Most people will fall between the extremes. It’s important to let your doctor know about nausea, numbness in your hands and feet, or any other issues that arise. You are not whining or being a “cry baby”! Your doctor may be able to adjust the dosage of your medicine or prescribe a medication to make you more comfortable.
Use all the resources your doctor has to offer to minimize side effects and emotional stress. Many hospitals offer nutritionists, counselors, financial support, and other services such as acupuncture and massage. Don’t hesitate to ask for the kinds of help you need for you and your family.
The information on this website is intended for general knowledge only and is not a substitute for medical advice or treatment. The content for this website has been reviewed by our medical advisory board who are experts in the field. View our full disclaimer.
