Newly Diagnosed and Treatment

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. 

THE A B C’s OF A NEW DIAGNOSIS –   THE MAYO CLINIC / THE NLMSF The Mayo Clinic and the NLMSF present:  
 Learning About Cancer
The ABC’s of a Sarcoma Diagnosis   
 https://www.youtube.com/watch?v=nv2HP9TbaYA

“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.

Would you like to personally help advance LMS research? Well now you can by participating in the Broad Institute’s LMS Count Me In Project.

The National Leiomyosarcoma Foundation is partnering with Count Me In to inform patients about this exciting project and to encourage them to participate at NO COST.

Count Me In’s LMS project, is a non-profit initiative, bringing patients and researchers together, to accelerate discoveries in cancer research. The LMS project is supported by a grant from the National Cancer Institute.

If you’ve ever been diagnosed with LMS, you can join the LMS project, by sharing your samples, copies of your medical records, and your experiences. Information collected and shared will be de-identified, before being shared widely with researchers to speed discoveries.

           How do you participate?

By giving permission to obtain your medical records, saliva, blood, and stored tissue samples, and providing information about your personal LMS journey.

Visit https://lmsproject.org to learn more about participation.

 There is also a “For Your Physician” document on the Count Me In website, with more information about the project to share with your Oncologist/Sarcoma Specialist

We hope that you will decide to participate in this exciting and very promising new Leiomyosarcoma research initiative, that holds great promise for a better understanding of LMS, to help pave the way for novel research and future survival treatments.

                “With courage and dedication, we can inspire
                           not only others, but ourselves”.
                           Jeff, LMS Patient Perspective

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)

1. 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
2. 12 Questions to ask at your first Appointment: https://sarahcannon.com/blog/entry/12-questions-to-ask-at-your-first-oncology-appointment
3. Make sure to ask if the Oncologist and the Sarcoma Center you select accept your health insurance plan.
4. 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.
5. 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 
   annieachee@aol.com to order.
6. 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?
• https://www.cancer.net/blog/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.

https://www.ahrq.gov/patient-safety/patients  families/engagingfamilies/strategy3/index.html

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

Also Visit The NLSMF Survivorship Resource Guide