Next Steps Forward
Once you have been diagnosed, it is important to find a Sarcoma Specialist. Your primary care physician or diagnosing oncologist can recommend one, preferably experienced with Leiomyosarcoma cases. If they have no suggestions then refer to our list of Sarcoma Centers, all of which have LMS experience.
Sarcoma Centers of Excellence
Finding the right treatment center and a specialist you are comfortable with is imperative. The Sarcoma Alliance Through Research Collaboration (SARC) provides a map of Sarcoma Centers of Excellence throughout the U.S. See a map of SARC centers throughout the USA.
Dr. Seth Pollack, a leading medical oncologist and sarcoma specialist, encourages patients to find the doctors most equipped to treat their disease, who will communicate effectively, and find the most effective treatment options for them.
The NCCN Guidelines for Patients helps patients understand what to expect in treatment. Physicians are guided as well by the NCCN Guidelines for Physicians.
View the NCCN’s free patient webinar “Know What Your Doctors Know: Soft Tissue Sarcoma.” Once you’ve selected a Sarcoma Center, being preparing for your first appointment:
- Make sure to ask if the Oncologist and the Sarcoma Center you select accept your health insurance plan.
- It is essential that you have a family member, friend, or caregiver accompany you to your appointments to take notes and help you review the appointment.
- Have a medical appointment organizer to keep important paperwork such as lab test results, radiology/imaging reports, pathology reports, medication list, notes and questions, etc. NLMSF offers complimentary organizers, email
email@example.com to order.
- Write questions as you think of them to ask at appointments. Check out “Questions to Ask Your Surgeon or Oncologist.“
- Be Your Own Best Advocate! Don’t be afraid to ask questions of your Oncology Care Team. Feel free to seek a second, even third, opinion regarding diagnosis, treatment, pathology, etc. View videos from Dr. Richard Gorlick and Dr. George Demetri on this topic.
- NLMSF offers a list of Remote Second Opinion Sites.
- The American Society of Clinical Oncology offers guidance on knowing your Oncology team.