Frequently Asked Questions

Unfortunately it is difficult to know due to several reasons. One being that Subtypes like IBC are often underfunded and understudied in comparison to more common forms of breast cancer. Another is that IBC does not have a medical encoding number (ICD code) and there is no IBC registry to track cases in Canada. Adittionally, IBC can be misdiagnosed – sometimes IBC is missed altogether and sometimes IBC is diagnosed, but is really a locally advanced breast cancer. Despite these issues, it has been estimated that IBC accounts for 1-2% of all breast cancer cases in Canada each year. Given the Canadian Cancer Society’s estimated 30,500 new breast cancer cases expected in 2024, it is projected that around 300 – 600 Canadian women will be diagnosed with IBC.

IBC differs from other types of breast cancer in its rapid progression and distinctive symptoms. It tends to spread quickly and often does not form a distinct lump. Instead, it causes changes in the skin of the breast, such as redness and swelling.

Symptoms of IBC include redness, swelling, and warmth in the breast, skin that appears pitted or thickened like an orange peel, and sometimes a rapid increase in breast size. These symptoms can appear suddenly and progress quickly.

IBC is typically classified as stage III when it is confined to the breast and nearby lymph nodes, or stage IV when it has spread to other parts of the body. Unlike other breast cancers, IBC is usually diagnosed at a more advanced stage.

Diagnosing IBC is a complex process. IBC is diagnosed through a combination of physical examinations, imaging tests (like mammograms, ultrasounds and MRIs), and biopsies of the breast tissue. Due to its aggressive nature, a prompt and accurate diagnosis is crucial.

There may be a few reasons for this. One is that IBC doesn’t form a discrete lump that can be seen easily and measured. However, IBC does have other features that can be observed on a mammogram if the radiologists are trained on what to look for. These signals of IBC include trabecular distortion, skin thickening and retraction of the skin and nipple. Another reason why a regular screening mammogram might not pick up IBC is that there is a relatively short latency between IBC initiation and full-blown disease – generally within 1-3 months of first symptom the entire breast may be noticeably involved. IBC diagnosis mid-screening cycle is quite common. Another reason is that in younger women especially who have denser breasts, mammograms lose sensitivity because more of the breast is white on a mammogram.

Can IBC be confirmed on a biopsy alone?

No, a pathologist who just looks at a slide from an IBC patient cannot tell it is definitely IBC. This is because IBC is a clinical diagnosis. A biopsy would only confirm the presence of an invasive breast cancer. Your pathology report will state the histological subtype (such as invasive ductal carcinoma or invasive lobular carcinoma). If the pathologist has looked at the clinical record, he/she might note likely inflammatory breast cancer, but do not be alarmed if inflammatory breast cancer is not on your pathology report.  The tumor cells themselves do not look any different from other high grade breast cancers.  In IBC one difference is the higher prevalence of lymphovascular invasion and nests of tumor cells in the skin (called dermal tumor emboli). Your report may or may not mention those aspects.

What is the difference between grade and stage?

Tumor grade is the description of a tumor based on how abnormal the tumor cells look under a microscope. It is an indicator of how quickly a tumor is likely to grow and spread. If the cells of the tumor and the organization of the tumor’s tissue are close to those of normal cells and tissue, the tumor is called “well-differentiated.” These tumors tend to grow and spread at a slower rate than tumors that are “undifferentiated” or “poorly differentiated,” which have abnormal-looking cells and may lack normal tissue structures. Based on these and other differences in microscopic appearance, doctors assign a numerical “grade” to most cancers. Breast cancers can be grades 1-3, with grade 3 being the most aggressive. Most IBC is grade 2 or 3.  

Tumor grade is not the same as the stage of a cancer. Cancer stage refers to the size and/or extent (reach) of the original (primary) tumor and whether or not cancer cells have spread in the body. Cancer stage is based on factors such as the location of the primary tumor, tumor size, regional lymph node involvement (the spread of cancer to nearby lymph nodes), and the number of tumors present. IBC is always either stage IIIB, IIIC or IV.

What is the significance of ER, PR and HER2 status for my treatment?

ER and PR status are important in deciding upon whether endocrine therapy is needed after chemotherapy, surgery and radiation.  If even 1% of tumor cells express ER or PR (also known as HR positive/HR+ tumors), some type of endocrine therapy would be recommended to decrease risk of recurrence.  HER2 is particularly important to know before beginning treatment since the chemotherapy protocol is designed with this in mind. HER2 positive tumors receive HER2 targeted therapy along with chemotherapy. The current standard in the US for neoadjuvant treatment for HER2+ tumors includes Herceptin, Perjeta (Pertuzumab) and a taxane. There are a few options for the other drugs used. HER2 negative tumors do not receive Herceptin or Perjeta since the target of these drugs are not present at high levels.  In terms of chemotherapy choices for HR+ or TN (triple negative) tumors, a number of cocktails may be used and these are usually selected based on the treating medical oncologist’s preference.

Breast cancer staging is performed both to guide treatment and inform the patient about their prognosis. Staging incorporates both tumor size as well as presence of tumor cells in regional lymph nodes and presence/absence of distant metastasis. If the cancer cells have traveled elsewhere in the body, then you are stage IV. To distinguish between stage IIIB and IIIC, your oncologist will use the results of your PET/CT and Bone Scans. Generally IIIC means you have distant lymph node involvement, such as in the supraclavicular nodes in the neck.

Treatment for IBC usually involves a combination of chemotherapy, surgery, and radiation therapy. Often, chemotherapy is given first to shrink the tumor, followed by surgery to remove the breast (mastectomy) and then radiation therapy.

• There are no specialized treatment centers in Canada. The Odette Cancer Centre – – Sunnybrook Hospital in Toronto, Ontario has a Locally Advanced and Neoadjuvant Breast Cancer Program that offers a multi-disciplinary approach to higher risk breast cancers including IBC.
• Some Canadians opt to consult with or travel to specialty IBC treatment centres in the US like MD Anderson or Dana Farber and pay out of pocket.
•  Regardless of where you receive care, it is important to ensure your medical team or health practitioner is knowledgeable and experienced with this aggressive type of cancer.

IBC treatment is intense and typically involves multiple forms of therapy. Patients can expect to undergo chemotherapy, which may cause side effects like nausea and hair loss, followed by surgery and radiation therapy. Each patient’s treatment plan is tailored to their specific circumstances.

Side effects of IBC treatment can include fatigue, nausea, hair loss, pain, swelling, and changes in skin appearance. Long-term side effects might include neuropathy, lymphedema and changes in breast appearance or sensation.

Early and aggressive treatment is crucial for IBC due to its rapid progression. Delaying treatment can lead to worse outcomes, so it is important to seek medical care as soon as symptoms appear.

Support groups for IBC patients and families can be found through cancer organizations, hospitals, and online communities. The IBC Network Foundation Canada offers resources and support group information for those affected by IBC.

Connecting with other IBC patients and survivors can be done through online forums, social media groups, and local support groups. The IBC Network Foundation Canada can help facilitate these connections.

Financial resources for IBC patients are available through various cancer support organizations, government programs, and non-profit organizations. These resources can help cover medical expenses, travel costs, and daily living expenses during treatment. For more information, please see Resources (link)

Participation in clinical trials can be discussed with your oncologist and/or radiology oncologist. Clinical trials for IBC are often listed on the Canadian Cancer Trials website and through research hospitals. Here is a list of questions to ask before enrolling in a clinical trial Questions to ask about clinical trials | Canadian Cancer Society

Mental health resources for IBC patients include counseling services, support groups, and mental health professionals who specialize in cancer care. Many cancer treatment centers also offer psychological support services.

The IBC Network Foundation Canada is dedicated to funding research projects focused on understanding and treating IBC. We collaborate with research institutions and support studies aimed at improving diagnosis, treatment, and outcomes for IBC patients.

You can get involved with the IBC Network Foundation Canada by volunteering, participating in fundraising events, advocating for IBC awareness, and donating to support our initiatives. Visit our website for more information on how to contribute.

Current research priorities for IBC include identifying genetic and molecular markers, developing targeted therapies, improving diagnostic methods, and understanding the disease’s progression. Funding these areas can lead to significant advancements in treatment and care.

Donations to support IBC research and advocacy can be made through our website. Contributions help fund critical research projects and support our efforts to educate and advocate for those affected by IBC.

Awareness of IBC is crucial because early recognition and treatment can significantly impact outcomes. Many people are unaware of the unique symptoms of IBC, which can lead to delayed diagnoses and treatment.

You can help raise awareness about IBC by sharing information on social media, participating in awareness events, distributing educational materials, and discussing IBC with your community. Support from individuals can help spread crucial information about this aggressive cancer.

Yes, the IBC Network Foundation Canada provides educational materials on our website, including brochures, fact sheets, and videos. These resources are designed to inform patients, families, and healthcare professionals about IBC.

Healthcare professionals can learn more about IBC through continuing education courses, medical conferences, and research publications. The IBC Network Foundation Canada offers resources and information tailored to healthcare providers.

If you suspect you have IBC, it is important to seek medical attention immediately. Schedule an appointment with your healthcare provider and discuss your symptoms, emphasizing the urgency due to the aggressive nature of IBC.

To prepare for a doctor’s appointment, write down your symptoms, any changes in your breast, and questions you have about IBC. Bringing a friend or family member for support and to help take notes can also be beneficial.

Questions to ask your healthcare provider about IBC include: What diagnostic tests will be performed? What treatment options are available? What are the potential side effects? How quickly should treatment begin? Are there specialists or treatment centers you recommend?

Family members can support someone with IBC by offering emotional support, helping with daily tasks, attending medical appointments, and educating themselves about the disease. Being present and understanding can make a significant difference.

Lifestyle changes that can help manage IBC symptoms and treatment side effects include maintaining a balanced diet, staying physically active, managing stress, and getting adequate rest. Discussing these changes with your healthcare team can help tailor them to your specific needs.