LIVING WITH IBC

Inflammatory Breast Cancer is a rare and aggressive form of breast cancer that progresses rapidly and demands prompt treatment. While many of the statistics you might come across online can be daunting and outdated, there is still much cause for hope. IBC is a serious disease, but it is not necessarily a death sentence. Every day, researchers are gaining a better understanding of Inflammatory Breast Cancer. Advances in diagnosis and treatment have significantly improved outcomes, with many patients living 20 years or more after their diagnosis. As our Southern friend, Terry Arnold, always says, “Hope Always!” We believe the information and community you find here will inspire you to embrace this motto too.

The period of waiting for a treatment plan can be one of the most challenging times. It’s normal to feel anxious and uncertain. Here are some tips to help you through this period:

• Stay Informed: Educate yourself about IBC. Knowing what to expect can help reduce fear and anxiety.
• Organize Your Questions: Dedicate a notebook to write down any questions or concerns you have for your healthcare team. This can help you feel more prepared for appointments.
• Seek Support: Talk to family and friends about your feelings. Consider joining our online support group where you can connect with others who understand what you’re going through.

Being proactive in your care is important. Here are some questions that can help you understand your diagnosis and treatment options better:

• What stage is my cancer and what does that mean?
• What are my treatment options and what do you recommend?
• What would you recommend if I was your mother/wife/daughter?
• What are the potential side effects of the proposed treatments?
• How will treatment affect my daily life and activities?
• Are there any clinical trials available that I should consider?
• What support services are available to me and my family?

Visit the Canadian Cancer Society website

Check out our glossary of terms here.

Finding community and reassurance can make all the difference when you are facing an IBC diagnosis. Our Facebook support group is a welcoming space for Canadians living with IBC at any stage of their journey to connect, share their stories, and uplift one another. We also hold monthly Zoom calls on the 3rd Tuesday of every month at 8:00 pm EST (7 pm CT, 9 pm AT, 5 pm PT, 6 pm MT). IBC Real Talk Tuesdays come together, share knowledge and experiences, and simply be there for one another. The journey may be challenging, but you don’t have to walk it alone. We’re here with you every step of the way. We’d love for you to join us! Join our Facebook Support Group here and find out more information about our monthly Zoom calls here.

1. Systemic Treatments: IBC often begins with systemic treatments such as chemotherapy, targeted therapies, and sometimes immunotherapy. These treatments work throughout the entire body to shrink the tumor and target cancer cells that may have spread beyond the breast.
2. Surgery: After systemic treatment, surgery is usually the next step. The standard surgical procedure is a modified radical mastectomy with lymph node dissection, which removes the affected breast tissue and nearby lymph nodes to reduce the risk of recurrence.
3. Radiation Therapy: Radiation therapy follows surgery to target any remaining cancer cells in the breast area or chest wall, further reducing the risk of local recurrence.

This aggressive, multi-faceted approach is necessary because IBC tends to spread quickly and often does not present with a distinct lump, making it harder to detect early. Understanding each treatment option, its role in managing IBC, potential side effects, and how to manage them can empower you to make informed decisions and feel more prepared for the journey ahead.

• Chemotherapy: Chemotherapy is usually the first line of treatment for IBC, aiming to reduce the size of the tumor and eliminate cancer cells throughout the body. This helps make subsequent surgery and radiation more effective.
• Targeted Therapy: For IBC that is HER2-positive, targeted therapies like trastuzumab (Herceptin) and pertuzumab (Perjeta) are used alongside chemotherapy to specifically target HER2 proteins on cancer cells, enhancing the treatment’s effectiveness.
• Hormonal Therapy: For IBC that is hormone receptor-positive, hormonal therapies may be used to block hormones that fuel cancer growth. These treatments help reduce the risk of recurrence after primary treatments are completed.
• Immunotherapy: Emerging options like immunotherapy are being explored in IBC to harness the body’s immune system to fight cancer cells. This can be particularly beneficial for patients whose cancers do not respond well to conventional treatments.

Why Systemic Treatments Are Essential: Due to IBC’s rapid progression and high likelihood of spreading to other parts of the body, systemic treatments are a cornerstone of its management. They work beyond the primary tumor site, offering a comprehensive approach to controlling the disease and improving outcomes.

Understanding your treatment plan and being aware of potential side effects allows you to better prepare for the journey ahead. We’ll guide you through each of these treatment options, including what to expect, managing side effects, and tips for coping during this challenging time.

Anthracycline and taxane-based chemotherapy are the mainstay treatments for IBC. These drugs are recommended by international experts/doctors around the world. While the core drugs remain consistent, the specific chemotherapy schedules and dosage density may differ across treatment centres.

Anthracyclines

Anthracyclines, such as doxorubicin (Adriamycin) and epirubicin, are potent chemotherapy drugs commonly used as part of first-line treatment for IBC. They work by damaging the DNA within cancer cells, thereby preventing their ability to divide and grow.

• Mechanism: Anthracyclines intercalate into DNA and inhibit topoisomerase II activity, disrupting DNA replication and leading to cancer cell death.
• Application in IBC: Anthracyclines are effective in reducing tumor size and controlling the spread of cancer in IBC patients.
• Side Effects: Common side effects include nausea, hair loss, and increased susceptibility to infections.

Taxanes

Taxanes, such as paclitaxel (Taxol) and docetaxel (Taxotere), are another class of chemotherapy drugs used to treat IBC. They work by stabilizing microtubules within cancer cells, which are essential for cell division and growth.

• Mechanism: Taxanes interfere with microtubule function, leading to cell cycle arrest and ultimately, cell death.
• Application in IBC: Taxanes are effective in targeting rapidly dividing cancer cells, making them a valuable part of combination therapies for IBC.

Side Effects: Side effects may include neuropathy (nerve damage), joint and muscle pain, and fluid retention.

Targeted therapies focus on specific molecules involved in cancer growth and progression, offering more precise treatment options compared to traditional chemotherapy. There are currently limited studies on targeted therapies specifically for IBC. Given the high-risk nature of IBC, doctors often use information from studies on other high-risk breast cancers to guide treatment. For IBC, targeted therapies include:

HER2-Targeted Therapy (trastuzumab)

HER2-targeted therapies like trastuzumab (Herceptin) specifically target the HER2 protein found on the surface of some breast cancer cells. These therapies are crucial for HER2-positive IBC, improving outcomes and reducing the risk of recurrence.

• Mechanism: Trastuzumab binds to HER2 receptors, blocking signals that promote cancer cell growth and promoting immune system recognition and destruction of cancer cells.
• Application in IBC: Effective in HER2-positive IBC, targeted therapies like trastuzumab are integral to treatment plans, often used in combination with chemotherapy.
• Side Effects: Potential side effects include infusion reactions and cardiac toxicity.

Pertuzumab

Pertuzumab is a monoclonal antibody that targets and binds to HER2 receptors on cancer cells. It works by inhibiting dimerization (pairing) with other HER family receptors, particularly HER3, which interferes with signaling pathways that promote cancer cell growth and survival. Pertuzumab is often used in combination with trastuzumab and chemotherapy for HER2-positive breast cancers, including IBC.

• Mechanism: Pertuzumab inhibits HER2 dimerization with other HER family members, particularly HER3, blocking downstream signaling pathways that contribute to cancer cell proliferation.
• Application in IBC: Used in combination with trastuzumab and chemotherapy, pertuzumab enhances the effectiveness of HER2-targeted therapies in treating HER2-positive IBC.
• Side Effects: Common side effects include infusion reactions, diarrhea, and potential cardiac dysfunction.

• For patients with HER2+ IBC:

• Who achieved a pCR: Adjuvant pertuzumab (Perjeta) and trastuzumab (Herceptin) are recommended if the cancer responds well to treatment.
• HER2+ IBC patients who did NOT achieve a pCR: If the cancer does not respond well, then T-DM1 (trastuzumab emtansine) may be considered.

Recent advancements have introduced new avenues for treating IBC, including immunotherapy and PARP inhibitors. These therapies offer promising alternatives or complements to traditional approaches, particularly in targeted patient populations.

Immunotherapy

While not yet fully established in IBC treatment protocols, recent research on non-IBC breast cancer has shown promising results with immune checkpoint inhibitors (e.g., pembrolizumab, nivolumab), producing high response rates. Though not yet specific to IBC, these findings suggest a potential future role for immunotherapy in treating IBC.

Research is ongoing to explore its efficacy in harnessing the immune system to fight cancer, including IBC.

• Mechanism: Immunotherapy works by enhancing the body’s immune response against cancer cells, using agents like immune checkpoint inhibitors or CAR-T cell therapy.
• Application in IBC: Exploring efficacy and safety in clinical trials. Hopeful future treatment option.
• Side Effects: Potential side effects include immune-related adverse events, such as inflammation of organs like the lungs, liver, and intestines.

PARP Inhibitors

PARP inhibitors, such as olaparib (Lynparza), are targeted therapies used in the treatment of certain types of breast cancer, including IBC. They exploit vulnerabilities in cancer cells that have defects in DNA repair mechanisms, such as those caused by mutations in BRCA1 and BRCA2 genes.

• Mechanism: PARP inhibitors block PARP enzymes, preventing cancer cells from repairing DNA damage and leading to their death.
• Application in IBC: PARP inhibitors are particularly beneficial for patients with BRCA mutations, offering a targeted approach to treatment.
• Side Effects: Common side effects include nausea, fatigue, and potential risks of bone marrow suppression.

Understanding the mechanisms and applications of these systemic treatments is crucial for managing IBC effectively. By targeting cancer cells throughout the body, these therapies aim to control the disease, improve outcomes, and enhance the quality of life for patients with IBC.

Current Challenges:

• IBC’s Nature: IBC frequently spreads to distant parts of the body and has a generally poor prognosis, underscoring the need for new and more effective treatments.
• High-Dose Chemotherapy: High-dose chemotherapy with autologous hematopoietic stem cell transplantation (AHSCT) has been found to be too toxic without clear benefits.
• Standard Treatments: Currently, only anti-HER2 therapies (pertuzumab, trastuzumab, T-DM1) are integrated into the standard treatment protocol for IBC.

Future Directions:

• Need for New Approaches: There is an urgent need for new treatment strategies, especially those tailored specifically for IBC.
• Global Collaboration: Utilizing a global, multicenter approach for IBC-specific clinical trials can enhance the success of these trials, leading to improved treatment outcomes for IBC patients.

Source: Update on systemic treatment for newly diagnosed inflammatory breast cancer – PMC 

• Initial Consultation: Before starting chemotherapy, you’ll meet with your oncologist to discuss your specific treatment plan. IBC is typically treated with a combination of drugs known as a “chemotherapy regimen,” which often includes anthracyclines and taxanes. These drugs are designed to target aggressive cancer cells and shrink tumors before surgery. Your oncologist will explain the treatment schedule, potential side effects, and what to expect during your sessions, which may be more intense given the aggressive nature of IBC.
• Port Placement: Due to the need for frequent and intensive treatments, many IBC patients will have a port (a small device implanted under the skin) placed in their chest. This port makes it easier to administer chemotherapy and draw blood, reducing the need for repeated needle sticks. The procedure is typically quick and done on an outpatient basis, with a short recovery time.
• Treatment Sessions: Chemotherapy sessions for IBC can last several hours, depending on the specific drugs being administered. Treatments are often given in cycles, with rest periods in between to allow your body to recover. Bring items like a book, headphones, or a tablet to help pass the time. Given the intensity of IBC treatment, it’s important to keep yourself mentally and physically comfortable during these long sessions.
• Side Effects: Common side effects of chemotherapy for IBC include fatigue, nausea, hair loss, changes in taste, and increased susceptibility to infections. Due to the high-dose nature of IBC chemotherapy, side effects can be more pronounced. Your medical team will provide medications and tips to help manage these symptoms and support your overall well-being during treatment.

• Comfort is Key: Wear comfortable clothing to your sessions, and bring a cozy blanket or pillow. Some clinics can be chilly, and comfort can make a significant difference during long treatments.
• Stay Hydrated: Drinking plenty of water before and after chemotherapy can help with managing side effects like nausea and support your overall recovery. Staying hydrated is particularly important for IBC patients due to the aggressive treatment regimen. Your care team may recommend home hydration if necessary.
• Gentle Nutrition: Eat small, frequent meals that are easy on the stomach. Foods like ginger tea and crackers can help combat nausea. Because IBC treatment can be intense, focus on nutrient-rich foods that provide energy and are gentle on your digestive system.
• Create a Support System: Having a friend or family member accompany you to chemo sessions can provide emotional support and help you feel more at ease. For IBC patients, having someone who understands the intensity of your treatment can be incredibly comforting.
• Prepare Your Home: Before starting chemotherapy, stock up on easy-to-prepare meals, and create a cozy rest area where you can relax and recover after treatment. IBC chemotherapy can be physically demanding, so having a comfortable space ready can make a big difference.

• Consultation: You’ll meet with your surgeon orl oncologist to discuss the specifics of your surgery. For IBC, a modified radical mastectomy (MRM) is typically recommended. This involves removing the entire breast, including the skin, nipple, areola, and most of the axillary (underarm) lymph nodes. The aim is to remove as much of the cancer as possible to improve treatment outcomes.
• Lymph Node Removal: During the MRM, the surgeon will also remove lymph nodes from the underarm area. This is an important step in staging the cancer and planning further treatment.
• Skin-Sparing and Reconstruction: Immediate reconstruction is generally not advised for IBC due to the aggressive nature of the disease and the necessity of post-surgery radiation. Reconstruction is usually considered after completing all treatments, once the chest area has had time to heal.
• Consideration of Bilateral Mastectomy: While it’s understandable to want to take every possible measure, surgeons typically prefer not to perform a prophylactic bilateral mastectomy (removal of both breasts) unless medically necessary. This approach is due to the increased risk of complications, such as infection, and the potential for treatment delays that could impact overall outcomes. Your surgical team will discuss the best approach for your individual case.
• Drain Care: After surgery, you’ll likely have surgical drains in place to help remove excess fluid and prevent complications like fluid build-up (seromas). These drains are usually kept in place for one to two weeks.
• Physiotherapy: Physiotherapy plays a key role in recovery, helping you regain mobility in the shoulder and arm on the side of the surgery. It also helps reduce the risk of lymphedema, which is swelling caused by the build-up of lymph fluid.

• Prepare for Drains: Bring button-up shirts to the hospital that can easily accommodate surgical drains. Many patients find drain belts or pouches helpful for managing drains discreetly and comfortably.
• Post-Surgery Care: Arrange for someone to help you at home during the first week or two after surgery. This assistance can make it easier to manage daily activities, especially if you experience limited mobility.
• Pain Management: Discuss pain management options with your healthcare team before surgery. Managing pain effectively can make your recovery smoother.
• Arm Exercises: Start gentle arm exercises as soon as your surgeon gives the go ahead. This can help with your range of motion and prevent complications like stiffness or frozen shoulder.
• Emotional Support: Undergoing surgery for IBC can be an emotional journey. Connecting with others who’ve had similar experiences through support groups or online communities can provide valuable insights and comfort.

For more detailed information, you can visit the Sunnybrook Health Sciences Centre’s guide on mastectomy here.

• Consultation and Planning: Before starting radiation, you’ll have a detailed planning session with your radiation oncologist. Given the aggressive nature of IBC, radiation is typically more intensive and targeted. During this session, your treatment area will be precisely mapped out, often covering the chest wall, underarm (axilla), and possibly the collarbone area. The radiation oncologist will determine the appropriate radiation dose, measured in grays (Gy), and the number of sessions based on several IBC-specific factors, including:
• Extent of Skin Involvement: IBC often affects the skin and underlying lymphatic vessels. This may necessitate a higher dose of radiation or a larger treatment area to ensure all affected tissue is thoroughly treated.
• Use of a Bolus: For IBC patients, a bolus—a material that mimics tissue—is often applied to the skin during radiation treatments. The bolus ensures that the radiation dose is concentrated at the skin’s surface, which is crucial for IBC patients, as the disease frequently involves the skin. This technique helps to target cancer cells more effectively and reduce the risk of recurrence in the skin.
• Radiation Boost: In addition to standard radiation therapy, an IBC patient might receive a “boost” of radiation. This boost involves delivering an extra dose of radiation directly to the area where the tumor was most active or where residual cancer cells might be present. The boost is typically administered towards the end of the treatment course and is designed to further decrease the risk of local recurrence.
• Response to Neoadjuvant Therapy: The effectiveness of chemotherapy prior to surgery can influence the radiation plan. If the cancer has responded well, the dosage might be adjusted accordingly. Conversely, if there are residual cancer cells, a more aggressive approach may be needed.
• Surgical Margins: For IBC, ensuring clean surgical margins is crucial. If the cancer was close to the edges of the tissue removed, your oncologist might recommend a higher radiation dose or additional sessions to lower the risk of recurrence.
• Type of Radiation Therapy: IBC patients often receive external beam radiation, but the specific technique (such as intensity-modulated radiation therapy, or IMRT) may vary based on the extent of the disease and the areas being treated.
• Concurrent Treatments: Radiation for IBC is often coordinated with other treatments like continued systemic therapy. The dosage and schedule will be designed to complement these treatments without overwhelming your body.
• Treatment Sessions: Radiation treatments for IBC are typically quick, lasting only a few minutes per session, but they occur daily over several weeks, often spanning five to six weeks. While the procedure itself is painless, it’s crucial to remain still during each session to ensure that the radiation precisely targets the cancer-affected areas.
• Skin Care: The skin in the treated area may become red, dry, or irritated over time, which is a common side effect, particularly with IBC due to the higher doses often used and the application of a bolus. Your healthcare team will provide detailed guidance on how to care for your skin during treatment. Following these recommendations is essential to minimize discomfort and protect your skin.

• Creams and Lotions: Use gentle, unscented lotions to keep the skin moisturized. Ask your medical team for specific product recommendations that are safe to use during radiation. Many IBC patients find relief with aloe vera gel or creams formulated specifically for radiation burns.
• Loose Clothing: Wear soft, loose clothing to minimize irritation to the treated area. Avoid tight or rough fabrics that could rub against the sensitive skin. For IBC patients, this is particularly important as the treatment area may be extensive.
• Hydration: Staying well-hydrated is essential during radiation therapy, especially for IBC patients who might be undergoing more intensive treatment. Drink plenty of water to support your body’s recovery and maintain healthy skin.
• Rest and Nutrition: Radiation can cause fatigue, particularly in IBC patients due to the intensity of the treatment. Prioritize rest and ensure you’re eating a balanced diet rich in nutrients to help your body heal and maintain strength.
• Support: Connecting with others who’ve been through radiation for IBC can provide invaluable emotional support and practical tips. Consider joining a support group where you can share experiences and gain insights specific to IBC.

For IBC patients whose cancer cells overexpress the HER2 protein, targeted therapies like trastuzumab (Herceptin) and pertuzumab (Perjeta) are commonly used. These drugs are monoclonal antibodies that specifically target the HER2 protein on cancer cells, helping to slow or stop the growth of the tumor.

In Canada, trastuzumab is widely available for HER2-positive IBC patients, but access to pertuzumab may vary based on the stage of cancer and provincial guidelines. For example, pertuzumab is generally recommended for use in combination with trastuzumab and chemotherapy, particularly for HER2-positive cases with a higher risk of recurrence. However, the availability of pertuzumab and its coverage may differ depending on the province and specific patient circumstances. It is important to discuss with your oncologist about the best treatment options available and how they are covered by provincial health plans.

Another advanced therapy for HER2-positive IBC is ado-trastuzumab emtansine (Kadcyla), an antibody-drug conjugate that delivers chemotherapy directly to HER2-positive cancer cells, minimizing damage to surrounding healthy tissue. This therapy may be used if there are residual cancer cells after initial treatments.

For patients with IBC who are HER2-negative but have other specific genetic mutations, targeted therapies like PARP inhibitors (e.g., olaparib) may be considered. These drugs are particularly useful for patients with BRCA1 or BRCA2 gene mutations and work by preventing cancer cells from repairing their DNA, leading to cell death.

Clinical Trials: Due to the aggressive nature of IBC, participation in clinical trials for new targeted therapies may be recommended. Canada is home to several world-class cancer research centers, such as the Princess Margaret Cancer Centre in Toronto, which often run clinical trials for innovative IBC treatments. Your oncologist can help you explore available trials that may be appropriate for your situation.

• Monitoring: Regular monitoring through imaging and blood tests is essential during targeted therapy to assess how well the treatment is working and manage any side effects.
• Side Effects: Common side effects of targeted therapies can include heart issues, diarrhea, and fatigue. It’s important to discuss any side effects with your healthcare team, as they can provide supportive care and make adjustments to your treatment plan if necessary.
• Support: Joining an IBC-specific support group can be invaluable when undergoing targeted therapies. Other patients can share their experiences and offer advice on managing side effects and navigating the treatment process.

• Tamoxifen: Tamoxifen is often prescribed for premenopausal women with HR+ IBC. It works by blocking estrogen receptors on cancer cells, preventing the hormone from binding and fueling the cancer’s growth. Tamoxifen is typically taken for 5 to 10 years after initial treatment, depending on your specific situation.
• Aromatase Inhibitors (AIs): For postmenopausal women, aromatase inhibitors such as anastrozole (Arimidex), letrozole (Femara), and exemestane (Aromasin) are commonly used. These drugs lower estrogen levels by blocking the enzyme aromatase, which is responsible for converting androgens into estrogen in the body. AIs are often prescribed for several years following surgery, chemotherapy, or radiation.
• Ovarian Suppression: In premenopausal women, ovarian suppression may be recommended alongside tamoxifen or AIs. This can be achieved through medication such as goserelin (Zoladex) or through surgery to remove the ovaries (oophorectomy). This treatment reduces the amount of estrogen produced by the ovaries, making hormonal therapy more effective.

• Adherence: Hormonal therapy is typically a long-term treatment, and adherence is crucial for reducing the risk of recurrence. It’s important to take your medication as prescribed, even if you feel well.
• Managing Side Effects: Common side effects of hormonal therapy include hot flashes, joint pain, and bone thinning. Your healthcare team can offer strategies to manage these side effects, such as medications, lifestyle changes, or complementary therapies.
• Bone Health: Aromatase inhibitors can increase the risk of osteoporosis, so it’s important to monitor bone density and take steps to protect your bone health. Calcium and vitamin D supplements, along with weight-bearing exercises, can be beneficial.
• Emotional Support: Hormonal therapy can sometimes affect your mood or emotional well-being. Joining a support group or talking to a counselor who specializes in cancer care can provide much-needed support during this time.

• Fatigue:
  • Conserve Your Energy: Plan your day around peak energy times, take breaks when needed, and focus on tasks that matter most.
  • Prioritize Rest: Stick to a regular sleep schedule, create a relaxing bedtime routine, and avoid stimulants like caffeine in the evening.
  • Stay Active: Engage in light exercise, such as walking or gentle yoga, to help boost your energy. You can follow gentle exercise routines available through the American Cancer Society.

• Resources: 

  • Download our Gentle Exercise Guide for IBC Patients
  • Download the Cancer Care Ontario’s guide on managing cancer-related fatigue. https://acrobat.adobe.com/id/urn:aaid:sc:US:71c528e7-ca7a-49fd-8b28-61e22655f3bc
  • Take Wellspring’s 4 week Cancer Related Fatigue Program https://portal.wellspring.ca/service/a1dON000000vGpdYAE/cancer-related-fatigue

• Manage Your Pain: Use over-the-counter pain relievers, follow your prescribed medication regimen, and explore options like physical therapy or acupuncture.
• Track Your Pain: Keep a pain diary to help your healthcare team understand and address your symptoms effectively.
• Resources: Download our pain management tracking sheet. Coming Soon!

Download the Pain Diary tracking tool from the American Cancer Society https://www.cancer.org/content/dam/cancer-org/cancer-control/en/worksheets/pain-diary.pdf

• Manage Your Pain: Use over-the-counter pain relievers, follow your prescribed medication regimen, and explore options like physical therapy or acupuncture.
• Track Your Pain: Keep a pain diary to help your healthcare team understand and address your symptoms effectively.
• Resources: Download our pain management tracking sheet. Coming Soon!

Download the Pain Diary tracking tool from the American Cancer Society https://www.cancer.org/content/dam/cancer-org/cancer-control/en/worksheets/pain-diary.pdf

• Prevent Lymphedema: Avoid heavy lifting, wear compression garments, and perform prescribed exercises regularly.
• Watch for Early Signs: Look out for swelling, heaviness, or tightness in your arm or hand, and report these to your healthcare provider right away.
• Manage Effectively: If you experience lymphedema, consider physical therapy, manual lymphatic drainage, and compression therapy.

Resources: Download our guide on lymphedema management. Coming Soon

VIDEOS THAT SHOW YOU HOW TO DO LYMPHATIC DRAINAGE MASSSAGE

These videos were created by physical therapists who provide lympatic drainage. 

http://www.youtube.com/watch?v=GY6SDKZGl8g

http://www.youtube.com/watch?v=a9FPhFDOB8E

http://www.youtube.com/watch?v=Q9FP6AHj9Eo

Managing your mental health during your cancer journey is just as important as managing your physical health. Here are some strategies and resources to support your emotional well-being:

• Manage Anxiety and Depression: Practice mindfulness, explore cognitive behavioral therapy (CBT), and connect with support groups. Check out resources from the Canadian Mental Health Association (CMHA).
• Support Your Emotional Well-Being: Remember, it’s normal to feel overwhelmed. Seek out emotional support through counseling or peer mentoring programs.
• Resources: Download our self-care checklist for mental health during treatment. Coming Soon!
• UHN Resource: We also recommend the comprehensive self-care guide developed by the Princess Margaret Cancer Foundation, which offers valuable insights and resources for cancer patients. You can access the guide here. Please note that while this document is a valuable resource, many of the services listed are based in Ontario.

Call to Action: Always consult your healthcare team before starting new strategies or therapies, and report any new or worsening symptoms. Your healthcare team can provide personalized advice and support tailored to your needs.

• Focus on Nutrient-Rich Foods: Incorporate plenty of fruits, vegetables, whole grains, and lean proteins into your diet. Foods rich in antioxidants, like berries and leafy greens, and anti-inflammatory foods, such as fatty fish and nuts, are particularly beneficial.
• Boost Your Immune System: Include foods high in vitamin C, like oranges and strawberries, and zinc-rich options, such as nuts and seeds.
• Stay Energized: Choose complex carbohydrates like oats and quinoa to keep your energy levels steady.

Resources: Check out the Canadian Cancer Society’s nutrition guidelines for cancer patients.

• Engage in Gentle Activities: Try walking, swimming, or yoga, which are gentle on your joints and can be adapted to your energy levels.
• Reap the Benefits: Regular exercise can improve your mood, help you sleep better, and enhance your physical function. Explore gentle exercise routines from the Canadian Cancer Society.
• Resources: Download our Gentle Exercise Guide for IBC Patients and use an exercise log to track your progress and set goals.

• Practice Mindfulness: Incorporate deep breathing exercises, meditation, and progressive muscle relaxation into your routine. You can try meditation apps like Headspace , Calm or Insight Timer.
• Enjoy Your Hobbies: Engage in activities that bring you joy, spend time in nature, or connect with loved ones to help reduce stress.
• Build a Support Network: Surround yourself with a strong support system, whether through friends, family, or IBC-specific support groups.
• Resources: Download our guide on mindfulness practices for stress management. Coming Soon!

Call to Action: Use our downloadable guides and checklists to help you integrate these lifestyle changes into your daily routine.

Stage IV breast cancer, also known as metastatic breast cancer (MBC), occurs when cancer has spread to distant parts of the body. Common sites include the brain, bones, lungs, and liver. Approximately 6% of female breast cancer patients are initially diagnosed with MBC (“de novo metastatic breast cancer”), and nearly 30% of women with early-stage breast cancer will develop MBC over time.

Many IBC patients worry about what MBC symptoms look like. The symptoms of MBC vary depending on the affected organs:

Bone:

• Sudden onset of new pain
• Commonly affected areas: ribs, spine, pelvis, long bones

Lungs:

• Pain or discomfort in the lungs
• Shortness of breath
• Persistent cough

Brain:

• Headache
• Changes in speech or vision
• Memory problems

Liver:

• Pain or discomfort in the midsection
• Fatigue and weakness
• Weight loss or poor appetite

While there is still no cure for MBC, recent treatments have improved survival and quality of life. More patients achieve long-term survival. Studies have shown that the number of women living with MBC is growing, with improvements in median and 5-year relative survival, especially among younger women.

Advances in systemic treatments have significantly improved outcomes for MBC patients. Treatment decisions are based on tumor biology and clinical factors, and biopsies of suspected lesions are evaluated for molecular markers like ER (estrogen receptor), PR (progesterone receptor), and HER2. Germline testing for BRCA1 and BRCA2 mutations is also recommended.

Treatment of metastatic disease is palliative, aiming to prolong life and improve quality of life. Recommendations are often grouped by molecular markers present.

HR+ HER2-Negative Breast Cancer:

• Endocrine therapy is usually preferred over chemotherapy. Tamoxifen and aromatase inhibitors are commonly used, with CDK4/6 inhibitors (palbociclib, ribociclib, abemaciclib) enhancing the efficacy of endocrine therapies. Alpelisib is an option for those with PIK3CA mutations.

HR- HER2-Negative (Triple-Negative) Breast Cancer:

• Chemotherapy is the primary treatment. Atezolizumab can be added to first-line taxane-based chemotherapy for patients with triple-negative advanced breast cancer.

HR- HER2-Positive Breast Cancer:

• HER2-targeted therapies (trastuzumab, pertuzumab, ado-trastuzumab emtansine, lapatinib) have revolutionized treatment.

Germline BRCA Mutation:

• PARP inhibitors (olaparib, talazoparib) are effective for patients with BRCA mutations.

Bone-Modifying Therapy:

• Treatments like pamidronate, clodronate, zoledronate, and denosumab reduce skeletal morbidity in patients with bone metastases.

Survivorship is about more than just being cancer-free; it’s about embracing a new chapter of life, regardless of whether cancer is fully behind you. For many living with Inflammatory Breast Cancer (IBC), being “cancer-free” may not be the reality, but that doesn’t mean you aren’t a survivor. Survivorship encompasses the ongoing journey of living with, through, or beyond cancer, including managing your health, prioritizing self-care, and finding a fresh perspective on life.

This phase is as much about resilience, adaptation, and courage as it is about medical milestones. Our upcoming Survivor Stories/Stories of Hope section will highlight personal journeys from those who have faced similar challenges, offering insights, encouragement, and inspiration as you navigate your own path forward, no matter where you are in your IBC journey.

1. Embrace the New You

Survivorship involves redefining what it means to live well with cancer. It’s about reconnecting with your values, passions, and the things that bring you joy. Take time to explore your interests, whether that’s picking up an old hobby or trying something entirely new. Remember, it’s okay if your pace or energy levels have changed—what’s important is finding fulfillment in your day-to-day life.

2. Establish a Routine for Health Maintenance

Ongoing health management is a key part of living with IBC. Establish a routine that includes regular follow-up appointments, treatments, and healthy lifestyle habits that suit your current needs and capabilities. Consistency in maintaining a balanced diet, exercising, and getting enough rest will contribute to your overall well-being, even if adjustments are needed along the way.

Tips:

• Create a Health Binder: Keep all your medical information, appointment schedules, and notes in one place. This can help reduce stress when preparing for visits with your healthcare team.
• Set Reminders: Use apps or calendars to remind you of appointments, medication schedules, or even just to drink water throughout the day.

3. Prioritize Self-Care

Taking care of yourself goes beyond the physical—it’s about nurturing your emotional and mental well-being, too. Find activities that recharge you, whether it’s reading, spending time in nature, practicing mindfulness, or simply taking a quiet moment to yourself. Listening to your body and knowing when to rest is just as important as staying active.

Tips:

• Schedule “Me Time”: Set aside regular time in your week dedicated solely to activities that bring you peace and relaxation.
• Practice Mindfulness: Simple techniques like deep breathing, meditation, or mindful walking can help you stay present and reduce anxiety.

4. Rebuild Your Strength Gradually

Whether you’re post-treatment or navigating ongoing care, rebuilding strength at your own pace is essential. Start with gentle exercises like walking, stretching, or low-impact activities. As you feel ready, explore more vigorous activities that you enjoy.

Tips:

• Set Small, Achievable Goals: Instead of jumping into a full workout routine, start with 10-minute daily walks and gradually increase as you feel stronger.
• Incorporate Flexibility and Balance Exercises: Gentle yoga or tai chi can be excellent ways to improve flexibility, balance, and overall well-being.

5. Connect with Others

Survivorship can sometimes feel isolating, especially if those around you don’t fully understand what you’ve been through. Connecting with others who have similar experiences can provide a sense of community and support. Consider joining a support group, whether in person or online, to share your experiences, ask questions, and find camaraderie.

Tips:

• Attend Survivorship Events or Groups: Look for local or virtual events that bring together cancer survivors. These can be a great way to meet people who understand your journey.
• Engage in Peer Mentoring: If you feel comfortable, consider becoming a mentor to others going through treatment. Sharing your story can be a powerful way to support others while also finding purpose in your experience.

6. Set Boundaries and Manage Expectations

Life with IBC may involve managing the expectations of yourself and others. It’s okay if your capacity for work, social engagements, or even daily activities has changed. Setting boundaries and communicating your needs clearly can help prevent overwhelm and allow you to focus on what’s most important to you.

Tips:

• Practice Saying No: It’s okay to decline invitations or requests if you’re not feeling up to it. Your health and well-being come first.
• Delegate Tasks: Don’t hesitate to ask for help with chores, errands, or responsibilities that feel overwhelming.

7. Celebrate Milestones—Big and Small

Survivorship is a journey, and celebrating your achievements, no matter how small, can boost your morale and remind you of your resilience. Whether it’s the anniversary of finishing a round of treatment, reaching a health goal, or simply making it through a tough day, take time to acknowledge your strength and perseverance.

Tips:

• Keep a Gratitude Journal: Write down moments, big or small, that you’re grateful for. This can help you focus on the positive aspects of your journey.
• Create a Milestone Calendar: Mark significant dates or achievements on a calendar as visual reminders of how far you’ve come.

8. Seek Professional Support When Needed

Emotional recovery is a key part of survivorship, and it’s okay to seek help from a professional if you’re struggling. Whether it’s a counselor, therapist, or support group, professional guidance can provide valuable tools for coping with the emotional ups and downs of living with cancer.

Tips:

• Consider Counseling or Therapy: A mental health professional can help you work through complex emotions, manage anxiety, and find ways to cope with changes.
• Explore Art or Music Therapy: Creative therapies can offer a unique outlet for expression and healing, especially when words are hard to find.

Your Journey, Your Way

Remember, survivorship is a personal journey that doesn’t have to fit any one mold. Whether you’re cancer-free or living with IBC, you’re a survivor in every sense of the word. Be gentle with yourself as you explore what this new chapter looks like for you. We’re here to provide resources, community, and support every step of the way. Together, we can help each other embrace life beyond treatment and thrive in the face of challenges.

The fear of cancer returning can be a persistent and daunting presence. It’s completely normal to have these worries, and acknowledging them is the first step toward managing them. Here are some practical tips and strategies that might help you handle the fear of recurrence and live with confidence:

1. Acknowledge Your Fears:
   It’s okay to feel scared or worried. Recognizing these feelings instead of suppressing them is the first step in coping. Journaling, talking with a trusted friend, or joining a support group can help you process these emotions.
2. Develop a Follow-Up Plan with Your Healthcare Team:
   Having a clear, scheduled plan for follow-up appointments, tests, and scans can provide structure and a sense of control. Knowing what to expect and when can alleviate some of the uncertainty that fuels anxiety.
3. Focus on What You Can Control:
   While you can’t control whether cancer will return, you can take steps to maintain your overall health. This might include eating a balanced diet, exercising regularly, getting enough sleep, and keeping up with your medical care. Focusing on healthy habits can give you a sense of empowerment.
4. Set Small, Achievable Goals:
   Instead of getting overwhelmed by the big picture, focus on setting small, manageable goals that bring joy or fulfillment. Whether it’s trying a new hobby, connecting with a loved one, or simply taking a walk each day, these actions can help you stay present and engaged in life.
5. Practice Mindfulness and Stress-Reduction Techniques:
   Mindfulness practices like meditation, yoga, and deep breathing can help you stay grounded in the present moment. Apps such as Headspace, Calm, or Insight Timer offer guided sessions specifically designed to reduce anxiety and promote relaxation.
6. Limit Exposure to Triggers:
   If certain activities, places, or conversations increase your fear, it’s okay to set boundaries. For example, if reading about cancer stories online heightens your anxiety, consider limiting your time on forums or carefully choosing which sources you engage with.
7. Reframe Negative Thoughts:
   Cognitive reframing involves recognizing and challenging negative thought patterns. Instead of thinking, “What if the cancer comes back?” try shifting to, “Right now, I am doing everything I can to stay healthy.” Working with a therapist trained in cognitive-behavioral techniques can also be very effective.
8. Lean on Your Support System:
   Don’t hesitate to reach out to your support network. Whether it’s family, friends, or others who’ve gone through similar experiences, sharing your fears can help you feel less alone and more understood. The IBC Network Foundation Canada community is here for you, offering a safe space to express your feelings and receive support.
9. Consider Professional Support:
   If the fear of recurrence is significantly impacting your quality of life, consider speaking with a mental health professional who specializes in oncology or chronic illness. Therapists can offer strategies tailored to your needs and help you build resilience.

Scanxiety stems from the fear of the unknown and the potential for bad news. It can be particularly intense for those with Inflammatory Breast Cancer (IBC), where the stakes always feel high. This anxiety isn’t just about the scan itself but the rollercoaster of emotions tied to every appointment, every waiting room, and every conversation about ‘what’s next.’

Tips for Managing Scanxiety

Here are some practical tips shared by others in the IBC community that might help you cope:

1. Meditation and Mindfulness:
   Meditation can be a powerful tool for calming the mind. Techniques such as deep breathing, guided imagery, or simple mindfulness can help ground you when your thoughts start to spiral. Try apps like Headspace or Calm, or simply take a few minutes to focus on your breath, noticing each inhale and exhale.
2. Stay Active:
   Physical activity, even a short walk, can release endorphins that help boost your mood. Movement can serve as a great distraction and an outlet for nervous energy.
3. Plan Something to Look Forward To:
   Schedule something enjoyable for after your scan—coffee with a friend, a favorite meal, or a quiet evening with a good book. Giving yourself a little treat can make the waiting period more bearable.
4. Talk About It:
   Reach out to someone who understands. Whether it’s a friend, family member, or someone from the IBC community, sharing your fears can lighten the load. Many find comfort in knowing they aren’t the only ones feeling this way.
5. Limit Information Overload:
   It’s easy to fall down the rabbit hole of endless online research or forum browsing, which can heighten anxiety. Set boundaries for yourself, such as limiting how much time you spend looking up information online.
6. Use a Distraction Technique:
   Keep your mind occupied with activities that require focus, such as puzzles, crafting, or even binge-watching a favorite show. Anything that keeps your thoughts away from the “what ifs” can be beneficial.
7. Prepare Questions Ahead of Time:
   Writing down your questions before your appointment can give you a sense of control. Knowing that you’re prepared can ease some of the tension associated with scans and results.
8. Connect with Others:
   Sometimes, hearing how others handle scanxiety can provide new ideas or simply make you feel less isolated. Consider joining our online support group, where you can share tips and experiences.

Your Thoughts Matter

We want this space to be as helpful as possible. If you have tips, experiences, or techniques that have helped you manage scanxiety, please share them with us. Together, we can create a supportive and resourceful community for everyone navigating the ups and downs of life beyond treatment.

1. Acknowledge Your Fears:
   It’s okay to feel scared or worried. Recognizing these feelings instead of suppressing them is the first step in coping. Journaling, talking with a trusted friend, or joining a support group can help you process these emotions.
2. Develop a Follow-Up Plan with Your Healthcare Team:
   Having a clear, scheduled plan for follow-up appointments, tests, and scans can provide structure and a sense of control. Knowing what to expect and when can alleviate some of the uncertainty that fuels anxiety.
3. Focus on What You Can Control:
   While you can’t control whether cancer will return, you can take steps to maintain your overall health. This might include eating a balanced diet, exercising regularly, getting enough sleep, and keeping up with your medical care. Focusing on healthy habits can give you a sense of empowerment.
4. Set Small, Achievable Goals:
   Instead of getting overwhelmed by the big picture, focus on setting small, manageable goals that bring joy or fulfillment. Whether it’s trying a new hobby, connecting with a loved one, or simply taking a walk each day, these actions can help you stay present and engaged in life.
5. Practice Mindfulness and Stress-Reduction Techniques:
   Mindfulness practices like meditation, yoga, and deep breathing can help you stay grounded in the present moment. Apps such as Headspace, Calm, or Insight Timer offer guided sessions specifically designed to reduce anxiety and promote relaxation.
6. Limit Exposure to Triggers:
   If certain activities, places, or conversations increase your fear, it’s okay to set boundaries. For example, if reading about cancer stories online heightens your anxiety, consider limiting your time on forums or carefully choosing which sources you engage with.
7. Reframe Negative Thoughts:
   Cognitive reframing involves recognizing and challenging negative thought patterns. Instead of thinking, “What if the cancer comes back?” try shifting to, “Right now, I am doing everything I can to stay healthy.” Working with a therapist trained in cognitive-behavioral techniques can also be very effective.
8. Lean on Your Support System:
   Don’t hesitate to reach out to your support network. Whether it’s family, friends, or others who’ve gone through similar experiences, sharing your fears can help you feel less alone and more understood. The IBC Network Foundation Canada community is here for you, offering a safe space to express your feelings and receive support.
9. Consider Professional Support:
   If the fear of recurrence is significantly impacting your quality of life, consider speaking with a mental health professional who specializes in oncology or chronic illness. Therapists can offer strategies tailored to your needs and help you build resilience.

Maintaining your health after IBC treatment involves more than just physical care; it’s about holistic wellness that includes your emotional, mental, and social health. From regular follow-ups and healthy lifestyle choices to managing cumulative or long-term side effects and taking care of your mental well-being, our Maintaining Your Health section (coming soon) will offer guidance to help you feel your best as you move forward.

Embracing life after IBC is about more than just surviving—it’s about thriving. It’s about rediscovering joy, pursuing what makes you happy, and finding purpose in every day. This chapter of your life is an opportunity to reconnect with old passions, explore new interests, and focus on what truly matters to you.

1. Rediscovering Joy

Finding joy in everyday moments can be one of the most fulfilling aspects of life post-IBC. Whether it’s watching a sunset, laughing with loved ones, or savoring a favorite meal, these small but significant moments can help you feel more connected and alive.

Tips:

• Create a Joy List: Write down activities, places, or people that bring you happiness. Make a conscious effort to incorporate these into your routine, even if it’s just for a few minutes each day.
• Be Present: Practice mindfulness to fully engage in the moments that bring you joy. This can be as simple as focusing on your senses—what you see, hear, and feel—during a pleasant experience.

2. Pursuing Passions

Post-IBC life is a chance to pursue what truly lights you up. Whether it’s a hobby you loved before your diagnosis or something new you’ve always wanted to try, dedicating time to what you’re passionate about can bring a renewed sense of purpose and fulfillment.

Tips:

• Start Small: If diving into a new passion feels daunting, take small steps. Sign up for a class, dedicate a few minutes a day to practice, or set achievable goals that help you gradually build momentum.
• Revisit Old Favorites: If there’s something you loved but set aside during treatment, consider revisiting it. Whether it’s painting, gardening, or cooking, reconnecting with past passions can be incredibly rewarding.

3. Building Meaningful Relationships

Strengthening existing relationships and building new ones can bring a profound sense of connection and purpose. Whether it’s spending quality time with family, deepening friendships, or connecting with others who share similar experiences, relationships can be a cornerstone of a fulfilling life.

Tips:

• Reach Out Regularly: Stay in touch with loved ones through calls, texts, or visits. Even a quick check-in can strengthen your bonds and remind you of the support around you.
• Be Open to New Connections: Join groups, clubs, or communities that align with your interests. You never know where a new friendship or meaningful connection might come from.

4. Finding Purpose

Finding purpose in this new chapter doesn’t have to be a grand gesture—it can be found in everyday actions and choices. Whether it’s helping others, setting personal goals, or simply living in a way that feels authentic to you, purpose can take many forms.

Tips:

• Volunteer or Give Back: If you feel up to it, consider volunteering for a cause you care about. Giving back can provide a sense of purpose and connection to your community.
• Set Personal Intentions: Reflect on what matters most to you and set intentions that align with those values. These can be as simple as being more present with loved ones, prioritizing self-care, or making time for creativity.

5. Celebrating Your Resilience

Your journey through IBC is a testament to your strength and resilience. Embracing life also means acknowledging and celebrating your courage, your progress, and the person you’ve become. It’s okay to be proud of how far you’ve come, and to honor the journey, even with its challenges.

Tips:

• Reflect on Milestones: Take time to acknowledge and celebrate the milestones you’ve reached, no matter how small. Reflecting on your resilience can help you appreciate your journey and motivate you for the road ahead.
• Create a Celebration Ritual: Whether it’s treating yourself to a special activity, spending time with loved ones, or simply taking a moment to savor a personal victory, find ways to celebrate your journey.

Remember, embracing life is not just about moving on from IBC—it’s about moving forward with joy, purpose, and a deep appreciation for life.

The journey with IBC doesn’t just affect the patient, it impacts loved ones too. We offer resources to help family and friends understand IBC, provide support, and care for themselves. Learn how to communicate effectively, offer meaningful help, and navigate the emotional landscape of supporting someone with IBC.

Useful Resources & Articles

How you can help someone with cancer

How not to say the wrong thing – Los Angeles Times

Walking on Quicksand

Walking on Quicksand: When the Unexpected Happens, is an online magazine filled with stories and articles written by patients, family members, partners, and medical professionals from around the globe that have been affected by Inflammatory Breast Cancer in some way. There are many articles written by Canadians, including Danielle Cameron, the Founder of the IBC Network Foundation Canada. The magazine is published 4 times a year and put together by The IBC Network Foundation (US) and Terry Arnold.