Your DSRCT Toolkit
A guide for patients, families, and caregivers
Navigating DSRCT takes more than medical treatment alone.
What follows is a curated guide through the kinds of tools and support that patients and families have found valuable at every phase.
You'll build most of this toolkit alongside your care team, gathering the pieces that fit your journey. And a few of them, like peer support and connection with others who truly understand, are ones we've created a space for right here.
You can also explore our Research & Resource Library, a curated collection of DSRCT research and supportive-care resources.
DSRCT is an ultra-rare sarcoma, and the expertise of your care team can make a meaningful difference in your outcomes. Consider building this team as early as possible.
- ›DSRCT disease expert consultation for guidance, or second opinion
- ›DSRCT-experienced surgeon (better outcomes are linked to surgeons who have performed this procedure before)
- ›Oncology dietitian or nutritionist to support your nutrition
- ›Physical and occupational therapy (PT and OT) to mitigate treatment side effects, and support maintaining strength and activity levels
- ›Palliative care for symptom management and recovery support
- ›Integrative oncology to optimize a patient's physical, mental, and emotional well-being, manage treatment side effects, and improve overall quality of life
The recommendations below are organized across five domains of care, drawn from what the DSRCT community has found most meaningful at every phase of the journey.
- ›Movement, sunshine, and time in nature when and as you are able
- ›Permission to rest, with sleep support and help from your care team when fatigue sets in
- ›Comfort-focused care for pain and symptoms, available alongside treatment from the beginning
- ›Nutrition support to maintain weight and strength throughout treatment
- ›Exercise, within your limits and with guidance from your care team, has broad research-backed benefits
- ›Work with a counselor or therapist experienced in oncology. Finding someone you feel comfortable with matters most, and you might have to try on a few before finding the perfect fit.
- ›Creative expression through art, writing, or music to process your experience
- ›Support and coping strategies for scanxiety, worry and stress
- ›Self-compassion practices to ease guilt, self-blame, or the pressure to "stay positive"
- ›Support in grieving changes to body image, identity, and the roles you hold
- ›Psychologists can help you process experiences and build coping strategies
- ›Psychiatrists can provide guidance on medication to help with mental health symptoms related to your diagnosis
- ›Mindfulness, meditation, or other mind-body practices through integrative oncology
- ›Find ways to have memorable, meaningful life experiences in the present moment
- ›Having conversations about your values, wishes, and goals of care is an act of self-advocacy and agency, as well as a gift to those caring for you
- ›Accept and allow support from family and community
- ›Finding community in peer support groups like the DSRCT virtual peer support group
- ›Family therapy or guided conversations to support the whole household
- ›Sharing your story can build awareness, create connection, and bring healing
- ›Financial navigation support through your cancer center's social work team, including help with insurance, travel costs, and patient assistance programs
- ›Find support in your faith community
- ›Integrating experiences and connecting them to purpose
- ›Prayer, meditation, or contemplative practice as a source of steadiness and comfort
- ›Rituals that mark milestones, transitions, or losses along the journey
- ›Time in nature as a spiritual practice, not just a physical one
- ›Chaplaincy services through your treatment center
Caregivers carry an enormous weight, often in silence. The fear, grief, and exhaustion of supporting someone through DSRCT are real and deserve attention. Your wellbeing matters not just for your own sake but for the person you are caring for. Consider counseling, caregiver peer support, respite care, and intentional time to tend to your own needs. The DSRCT Initiative peer support community is open to caregivers as well as patients.
- ›Individual counseling or therapy for caregivers
- ›Caregiver peer support within the DSRCT community
- ›Oncology social worker for practical and emotional support
- ›Grief support, including anticipatory grief
- ›Intentional rest and respite, you cannot pour from an empty vessel
Important Notice
This material was created by The DSRCT Initiative based on lived experience within the DSRCT community. It is intended for educational purposes only and does not constitute medical advice or treatment recommendations. Always consult your care team before making any decisions about your treatment.