Life Beyond Treatment

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, 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 IBC Stories 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.  

Hear What Deb Mosnyk had to say about her experience attending the Ultimate Meet Up as a “Co-Survivor”

We are incredibly grateful to Deb Mosnyk, one of our dedicated founding board members of the IBC Network Foundation Canada, for sharing her experiences from the 2024 Ultimate IBC Meet Up hosted by the IBC Network Foundation (US).

Her presence, both as a co-survivor and advocate, brought such meaningful insight to our Canadian IBC community. In Deb’s words, you’ll see how co-survivors—those standing beside loved ones with IBC—also need their own forms of connection and support. Her heartfelt observations remind us of the strength found in shared stories, resilience, and the simple act of coming together.

I was introduced to the idea of being a co-survivor – someone who is close to the person with IBC and who tries to support them along their journey.  My niece has IBC, and we have struggled together for the last five years. Co-survivors have different experiences that those who have IBC and might need different supports.  Meeting with other co-survivors was hugely beneficial!

I learned what an honour it is to be in the presence of so many amazing people – sisters with IBC, co-survivors, and those working to help provide assistance and support research.  I feel privileged to hear their stories, share their tears, and most of all, to witness resilience in action – so much laughter too!

I know from past experience just how much it means to be in a group that understands your struggles, no matter what type of challenge it is.  This was never more evident that seeing how powerful it was for the IBC sisters to see each other again or meet for the first time and be able to share their own journeys with each other – no-one else can relate in quite the same way!”