FOR CAREGIVERS

Welcome to our dedicated resource hub for caregivers and families of patients.

Your Voice Matters: Taking Meaningful Action

When families face a rare and aggressive cancer like NUT carcinoma, it can feel overwhelming and isolating.

However, there are meaningful actions families can take to ensure their voices are heard and their efforts make a difference, even in the most difficult circumstances.

Become an Informed  and Empowered Advocate

Be Your Own Advocate: Learn about NUT carcinoma and the importance of fast, early and specialized testing to confirm diagnosis.
Ask questions, explore clinical trials, seek second opinions, and don’t hesitate to consult with rare cancer experts.

LEARN MORE ABOUT TREATMENT OPTIONS

Seek Expert and Collaborative Care

Work with a multidisciplinary team that collaborates closely to develop a personalized treatment plan tailored to your loved one’s needs.
Explore clinical trials, including those testing novel therapies such as BET inhibitors or immunotherapies, which may offer access to cutting-edge treatment.

Learn about Clinical Trials

Participate in Shared Decision-Making and Express Your Values

Clearly communicate your loved one’s goals and preferences regarding treatment aggressiveness and quality of life.
Ask to be included in all major care discussions and document care preferences to ensure your voice is respected.

Checklist of questions to ask

Connect with Support Networks and Resources

Utilize supportive services such as counseling, pain and symptom management, physical therapy, and integrative therapies like acupuncture or massage offered by many cancer centers.
Join support groups or rare cancer communities to share experiences and gain emotional support.

Support group listing

Address Spirituality and Religion as Part of Holistic Care

Support the Whole Person: Spirituality and faith can offer strength and meaning during this time.
Talk with your care team about integrating spiritual support—such as chaplains or community resources—into the overall care plan.

Browse Support Group Listings

Care for Yourself and Each Other

Prioritize self-care and seek emotional support through counseling or therapy to maintain strength throughout the journey.
Accept help from family, friends, and community to share caregiving responsibilities and reduce isolation.

Find a support group

Want to share your experience or advice?

We’d love to hear from you.

Advice From Our Families to Yours

What sustained you through the caregiving journey? What practices, resources, or strategies helped you navigate the daily challenges while caring for your loved one?

Key Strategies That Helped:

Create meaningful daily routines together — Small, consistent rituals like reading together before bed or organizing for the day ahead can provide stability and connection during an unpredictable time.

Prioritize your physical well-being — Make time to move your body, get outside, and feel fresh air – these moments of self-care aren’t selfish, they’re essential for sustained caregiving.

Build a support network for practical needs — Organize meal trains and accept help with daily tasks to reduce stress and free up energy for what matters most.

Stay close to friends who truly see you — Surround yourself with people who understand your new reality and don’t make you feel guilty for having your focus on your loved one.

Nurture your spiritual or emotional anchor — Whether through faith-based books, devotionals, or other sources of hope, find what brings you peace and lean into it.

Remember that self-care enables better care — Taking care of yourself isn’t taking away from your loved one – it’s what allows you to show up as your best self for them.

If you don’t care for yourself, you’re not caring for your loved ones to the best of your ability. Mental health is essential so you can be your best version of yourself while helping the one who needs the love, hope and support while fighting for their life. You should never feel guilty for having your focus on your loved one while they fight.
—Maddie

Emotional Processing & Support

Find a trusted outlet for your fears — Whether through journaling, therapy, or a close friend, having a safe space to express your worries without burdening your loved one is crucial.

Connect with other caregivers — Join support groups (online or in-person) where you can share experiences with people who truly understand what you’re going through.

Allow yourself to feel the full range of emotions — Anger, sadness, frustration, and even moments of resentment are normal parts of the caregiving journey.

Boundaries & Realistic Expectations:

Set gentle boundaries around information — You don’t need to research every detail or become a medical expert; focus on what you can control today.

Practice saying “I don’t know, and that’s okay” — Release the pressure to have all the answers or to fix everything

Celebrate small victories — A good day, a shared laugh, a peaceful moment – acknowledge these bright spots when they come.

Mindfulness & Perspective:

Focus on presence over perfection — Your loved one needs you present more than they need you to be the perfect caregiver.

Create micro-breaks throughout the day — Even 5 minutes of deep breathing, listening to music, or stepping outside can reset your emotional state.

Remember your identity beyond caregiving — Try to maintain small pieces of who you were before, whether that’s a hobby, interest, or relationship.

Practice gratitude for ordinary moments — Finding small things to appreciate can help counterbalance the weight of difficult circumstances.

I learned early on to set boundaries around medical information. While staying informed is important, I chose to read survivor stories instead of diving deep into statistics. I focused on hope rather than fear. Sometimes, the most powerful thing a caregiver can do is trust the medical team with the details and trust yourself to hold onto what sustains you.
—Suzanne

When some institutions or medical professionals suggest you don’t move forward with a clinical trial or what is deemed as experimental, what helped you hang on to hope to move forward with one?

What Often Helps Families Move Forward:

Consult with NUT experts — Ask your doctors to explain the reasoning behind their recommendations and what alternatives may exist. Whenever possible, request that your care team consult with or refer you to specialists experienced in NUT carcinoma. These experts can provide additional perspectives, share the latest treatment options and clinical trials, and help ensure your care plan reflects the most current knowledge available.

Connecting with other families — Hearing from people who’ve been in similar situations and learning about their experiences with trials.

Focusing on quality of life goals — Clarifying what matters most to you and your loved one, whether that’s time, comfort, or fighting every option.

Research advocacy organizations — Groups like yours that can help navigate trial options and connect families with the right resources.

Understanding trial eligibility — Sometimes “experimental” doesn’t mean last resort – it might mean access to cutting-edge treatments.

Trusting your instincts as a caregiver — You know your loved one best and what they would want.

Questions That Help Clarify:

“What are the potential benefits versus risks?”

“Are there other trials we should consider?”

“What would you do if this were your family member?”

“How do we maintain quality of life while exploring options?”

The key seems to be balancing hope with realistic expectations while ensuring decisions align with your family’s values and your loved one’s wishes.

Latest News & Events

Keep in touch with the latest news and events from the NUT Carcinoma Alliance.