Next Steps Forward
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.
“FACING THE CHALLENGE OF AN LMS DIAGNOSIS” – Introductory Video from Multidisciplinary Sarcoma Team Specialists: Video Link Here
A VIDEO PRESENTATION FOR NEWLY DIAGNOSED LMS PATIENTS –
A Panel discussion by Multidisciplinary Sarcoma CareTeam clinicians from across the country brought together by the National LMS Foundation in partnership with Cancer Support Community.
PATIENTS HAVE A VERY IMPORTANT ROLE TO PLAY IN HELPING TO ADVANCE LMS Research for hopeful AND ACCELERATION OF INCREASING TREATMENT OPTIONS Learn More and Get Involved As Soon as Possible. bit.ly/3IAvNlL
WebMD Focus on Leiomyosarcoma – (WebMD Link)
Who is your Oncology Care Team – the “Multidisciplinary” Care Team and what is their role in your care – From the American Society of Clinical Oncology:https://www.cancer.net/navigating-cancer-care/cancer-basics/cancer-care-team/oncology-team
Brief Introduction to Chemotherapy: (YouTube Link) from M D ANDERSON CANCER CENTERIn this video, you learn what chemotherapy is, how it works, what to expect and how to manage potential side effects. You will also learn what resources are available to help you and your family cope. This video is a supplement to the Chemotherapy Guide.
New Guidelines from the American Society of Radiation Oncology (ASTRO) released – outlining recommendations for optimal radiation dosing, sequencing, and treatment planning for patients with soft tissue sarcomas – especially to extremity and superficial truncal soft tissue sarcoma, as well as retroperitoneal sarcomas; also focusing on the importance of the multidisciplinary care team’s important role in treatment coordination for patient care. – (Link)
- Questions to ask while in the process of making of your first appointment: https://www.cancer.net/navigating-cancer-care/managing-your-care/questions-ask-when-making-appointments
- 12 Questions to ask at your first Appointment: https://sarahcannon.com/blog/entry/12-questions-to-ask-at-your-first-oncology-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 information obtained by your care team.
- 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
firstname.lastname@example.org to order.
- Write questions as you think of them to ask at appointments. Check out “Questions to Ask Your Surgeon or Oncologist.“
Young Adults- Guidance on what to ask your Oncology Care Team – from Cancer.Net: https://www.cancer.net/navigating-cancer-care/young-adults-and-teenagers/young-adults-questions-ask-your-health-care-team
- Can A Biopsy Spread my Cancer?
2021-03/can-biopsy-make-my- cancer-spread?cmpid=ks_ cancernet_net_blog_em_ dailycancernews_all_040321____
- 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.
- Advances in Second Opinions for cancer treatment decision:https://www.curetoday.com/view/advances-in-second-opinions-for-cancer-treatment-decisions
- NLMSF offers a list of Remote Second Opinion Sites.
- The American Society of Clinical Oncology offers guidance on knowing your Oncology team.\
Bedside Shift Report: Patient and Family Engagement – Information + Video
Important information for patients and families:
Research shows that when patients are engaged in their health care, it can lead to measurable improvements in safety and quality. To promote stronger engagement, Agency for Healthcare Research and Quality developed the Guide to Patient and Family Engagement in Hospital Quality and Safety, a tested, evidence-based resource to help hospitals work as partners with patients and families to improve quality and safety.
Survivorship Begins At The Moment Of Diagnosis
Journal of the National Comprehensive Cancer Network (NCCN) https://jnccn.org/view/journals/jnccn/11/5S/article-p640.xml