Ask the Expert: Q & A on Inflammatory Breast Cancer (IBC)

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Beth Overmoyer, MD, has compiled a list of questions frequently asked by patients with inflammatory breast cancer (IBC). Dr. Overmoyer is the founder and director of the Inflammatory Breast Cancer Program at Dana-Farber Cancer Institute, the only program of its kind in the Northeast. She is also an assistant professor of medicine at Harvard Medical School. You can find patients' questions and Dr. Overmoyer's answers below.

Additional questions were answered by a panel of IBC experts at the Third Annual IBC Patient Forum at Dana-Farber Cancer Institute. Watch a recording of the Expert Q&A Panel.

Inoperable Versus Untreatable

Why is inflammatory breast cancer inoperable at the time of diagnosis?

Inflammatory Breast Cancer (IBC) is a locally advanced, non-operable breast cancer. This means that surgery at the time of diagnosis is not advisable due to the presence of widespread tumor that involves the entire breast, the skin overlying the breast, and the lymph nodes that drain the lymph fluid from the breast.

However, "inoperable" is not the same as "untreatable." Currently, the standard of care for IBC is known as tri-modality therapy. This treatment plan includes chemotherapy as a first step, followed by surgery and radiation. The purpose of preoperative chemotherapy is to make the breast suitable for surgery by killing the tumor within the skin, breast and lymph nodes. Once the maximum amount of tumor is treated, then the breast and lymph nodes can be safely removed by surgery.


Why can't IBC be diagnosed earlier?

Many patients question if there was anything they could have done to catch their diagnosis earlier. IBC is only found after the disease has progressed to stage 3 or stage 4. It is diagnosed at a locally advanced stage (stage 3), because the breast cancer cells have grown into the skin and immediately involve the entire breast and lymph nodes. Cancer that has attached to organs outside the breast and nearby lymph nodes is classified as stage 4. About one third of patients with IBC will present with stage 4 disease. The exact reason why IBC advances so quickly is unknown. Learn more about breast cancer staging.

Timing of Reconstruction

Why can't I have immediate reconstruction after surgery? How long should I wait?

Due to the skin involvement with IBC, it is recommended that patients wait at least six months after completing radiation before beginning reconstruction. This is known as delayed reconstruction. Immediate reconstruction at the time of mastectomy requires a procedure that spares the skin of the breast, and the optimal treatment for IBC is to remove as much skin as possible at the time of mastectomy. For IBC patients seeking breast reconstruction, autologous reconstruction methods – methods that use your own tissue, such as the DIEP flap or the TRAM flap — are recommended over implant-based methods.

While implant-based methods might sound like a more appealing strategy, it is often not the best option for IBC patients due to skin damage from the intensive radiation needed to treat their cancer. In addition, implant-based methods require the placement of a skin expander at the time of mastectomy and, coupled with the issue of "skin sparing", the presence of an implant can compromise the radiation plan. This is particularly important for IBC patients since radiation is critical for treating the skin of the chest wall and reducing the chance of a local or regional recurrence of cancer.

Preventative Mastectomy

Should I have a prophylactic (preventative) mastectomy after completing my treatment for IBC?

Many people wonder if the removal of the contralateral breast, meaning the removal of the other, cancer-free breast, is something they should consider after their treatment. This is a very personal decision that you should discuss with your treatment team. Currently, there is no data to suggest that there is a survival benefit to a contralateral prophylactic mastectomy.

While a contralateral prophylactic mastectomy does not reduce the risk of death, it would reduce the risk of developing a new primary breast cancer; though that risk may be so small that surgery is not indicated. Like reconstruction, if you choose a contralateral prophylactic mastectomy, we recommend this surgery later, rather than at the time of surgical treatment for IBC, so as not to delay any of the important timing of treating this disease.

Family History

Is it possible to have a family history of breast and other cancers, but no mutations in my genetic test results?

Not all inherited risk for cancer is detectable, even with current, multi-gene panel testing. This may be due to genes that are not yet discovered or to limitations with our current laboratory testing methods. In some families, inherited risk of cancer is complex, not because of one powerful gene, but rather due to the cumulative effects of multiple genes acting together. The type of testing needed to measure this type of inherited risk will be available soon and will allow us to identify people at increased risk who could benefit from opportunities for prevention.

It is also important to remember that most cancers do not have a strong genetic component. In fact, the development of cancer involves a combination of many risk factors: genes, lifestyle, and the environment.

If you have a significant family history, meaning there is more cancer in your family history than we would expect solely due to chance, or there is early-onset cancer, we recommend that you consider additional genetic testing opportunities as they become available. More information is available through Dana-Farber's Center for Cancer Genetics and Prevention.

Chemotherapy and Sexual Activity

During chemotherapy, are drugs present in bodily fluids? Should I avoid sexual intercourse?

Specific questions related to sexual activity should be openly discussed with your physician. In general, sexual intercourse while undergoing chemotherapy is safe. Many factors can influence your decisions about chemotherapy and sex. Two important questions to keep in mind include:

  • What type of chemotherapy are you receiving? Some types of chemotherapy can lead to changes in the lining of the vagina, which may make sexual intercourse more difficult.
  • Could you become pregnant? Chemotherapy does not always prevent pregnancy; however, pregnancy is strongly discouraged during chemotherapy, due to the detrimental effects on the developing baby. If pregnancy is possible, a reliable method of birth control is recommended. Oral hormonal contraception ("birth control pill") is not recommended for people with IBC or other types of breast cancer. Therefore, a barrier method (condoms, diaphragm) or non-hormonal IUD are the best strategies.

Resources and information are available through Dana-Farber's Sexual Health Program.

For more information, please see highlights from Dana-Farber's Inflammatory Breast Cancer Patient Forum.

Note: This Ask the Expert Q & A is not intended as a substitute for professional medical advice, diagnosis, or treatment. Speak to your health care provider about any questions you may have regarding your health.