ABC's of Newly Diagnosed
Essential guidance for navigating your LMS diagnosis and treatment journey
Essential Guide for Newly Diagnosed Patients
A - Awareness
Awareness of the various aspects of this disease is key to be able to have effective and efficient appointments.
- Become aware of what LMS is
- See resource information about the disease from www.nlmsf.org and www.leiomyosarcoma.info
- Become aware of your pathology report and its importance in proceeding down the right course of treatment
- You have the right to seek a second opinion pathology assessment
- Be aware of genomic/molecular testing opportunities to evaluate your tumor for best treatment protocols to be impacted by the results received
- Patient consent to donate tumor tissue prior to surgery to the Cancer Cell Line Project for LMS
- Dental Care prior to oncologic treatment
- Be aware of all the resources available at your fingertips from the NLMSF on insurance, lodging and transportation to distant sarcoma centers
- Be aware of all three websites of the NLMSF to access information and assistance to help and guide you and your family/caregiver
B - Be Your Own Best Advocate
To be an effective member of your care team:
- Finding a sarcoma center of excellence - for sarcoma specialist care or if one location is an issue; request your community provider to consult with the sarcoma specialist (telemedicine)
- Learn about your multidisciplinary care team - their role in your care
- Time Management - Scheduling your appointments with efficiency in conjunction with coordination of scans, treatment and follow-up appointments
- Build a tracking system - personal medical history journal
- Ask for medical language explanations when you are unfamiliar with the "medical talk" - establish understanding between you and your provider
- Ask questions and learn about clinical trials that might be an option for your situation
- Find a healthcare partner who can accompany you to your appointments to be a second listener, take notes and help you remember important details
- Know that in most cases, you have time to investigate your options for treatment protocol
C - Communication
Communication is key with your care team:
- Who are they
- Guidance on questions to ask
- Discuss side effects immediately from treatment
- Discuss the potential for recurrence, and anticipation of next steps
- Discuss survivorship care planning for after treatment
- Contact the NLMSF - accessible 24/7
- Request information about the NLMSF LMS LifeLine Buddy Program
- Request information about the Learning Curves Workshop Initiatives of the NLMSF
- Patient-Caregiver Advocacy Roundtable
- Survivors Inspire Peer Network
Need Additional Support?
The National Leiomyosarcoma Foundation is here to help. Contact us anytime for resources, support, or to connect with others in the LMS community.