Patient Education

PATIENT AND FAMILY 
EDUCATION PROGRAMS

The NLMSF collaborates annually with major sarcoma centers of excellence to bring important and special educational opportunities to the LMS Community. Listed are program collaborations current and past, (some recorded). 

Note:  Due to the COVID-19 health crisis,  all five in-person LMS education programs originally scheduled in 2020  were postponed.  More updates will be provided as available.  However, special education programs are taking place by phone or online meeting within the new NLMSF Patient Caregiver Initiatives: NLMSF Patient-Caregiver Advocacy Roundtable and NLMSF Survivors Inspire Peer Network .

           EDUCATIONAL WORKSHOPS
                  of the National Leiomyosarcoma Foundation

PATIENTS – CAREGIVERS ADVOCACY ROUNDTABLE

First MONDAY of each month –  7 pm EDT

Join the Patient-Caregiver Advocacy Roundtable Virtual Meeting
Guest Speakers featured for most meetings on topics selected by participants

SURVIVORS INSPIRE PEER NETWORK

Third THURSDAY of each month – 7 pm EDT

Join the Survivors Inspire Peer Network Virtual Meeting
Guest speaker featured at not meetings on important topics selected by participants

Contact annieachee@aol.com or call 303 808-3437 to join the virtual meetings
The NLMSF Newsletters and FB  Support Group will always announce scheduled
meetings and guest speakers for each meeting.

2021

JUNE

June 17

TOM KUBINSKI –   Caregiver, Author, Two-time Cancer Survivor on COPING  as a Caregiver and as a Patient :Video

June 14

Support Video for Coping
Black Family Cancer Awareness: Video

 

MAY

A VIDEO PRESENTATION FOR NEWLY DIAGNOSED LMS PATIENTS –

A Panel  discussion by Multidisciplinary Sarcoma Care Team clinicians from across the country:

 “FACING THE CHALLENGE OF AN LMS DIAGNOSIS”  – Introductory Video from Multidisciplinary Sarcoma Team Specialists: Video Presentation Here

Scott Okuno, MD,  Mayo Clinic – Rochester,NY
Research Oncologist/ Head of Sarcoma Clinic
Executive Chair,  NLMSF Executive Committee

Recorded program for the Survivors Inspire Peer Network of the NLMSF
Discussion Topic:  LMS treatment updates from the Mayo Clinic, and research updates;  the LMS Research Roundtable of the NLMSF-SPAEN
https://youtu.be/pTlDrQMO1Y0

April

Brian Kadera, MD
Surgery, Complex General Surgical Oncology
Surgery, Surgical Oncology, Ronald Reagan Med. CenterTopic:   Surgical  Management of LMShttps://youtu.be/MyZQrndW_5g

JANUARY:

Kristin Ganjoo, MD Stanford Medical Health Care

Sarcoma Specialist

NLMSF – SPAEN  International LMS Research Roundtable member

Recorded presentation to the NLMSF Patient-Caregiver Advocacy Roundtable on  Current LMS Treatments, Clinical Trial Updates:  https://youtu.be/Fs_yIIK9g7E

Barbara Van Hare,  Director of Partnerships – Rare Cancer Research Foundation/Pattern.org Consultant – Rare Cancer Dependency Map at Broad Institute of MIT and Harvard
Recorded presentation to the  NLMSF  Survivors Inspire Peer Network on patient donated tumor tissue through Pattern.org and Broad Cell Line Project updates on LMS cell Lines sponsored by the NLMSF    https://youtu.be/HiBsmDHo3Mo

Dr. Elizabeth Davis, Sarcoma Research Clinician, Vanderbilt Cancer Center
Guest Speaker  –  Patient-Caregiver Advocacy Roundtable Presentation: Video

2020

DECEMBER,  2020

Dr. Sujana Movva, Sarcoma Research Clinician, Memorial Sloan Kettering Cancer Center  
Guest Speaker –  Patient-Caregiver Advocacy RoundtablePresentation:  The treatment and management of LMS; clinical trial updates https://youtu.be/ChVQYIHc4ew

Victoria Lassen, Clinical Social Worker,  Memorial Sloan Kettering Cancer Center Guest Speaker –  Survivors Inspire Peer NetworkPresentation:  Mindfulness of Intent – to face anxiety, stress;  Coping Strategies https://youtu.be/i0lmbOmKouM

 NOVEMBER,  2020

Dr. Aimee Crago, Sarcoma Surgical Oncologist, Memorial Sloan Kettering – Guest Speaker  – Patient-Caregiver Advocacy Roundtable

Presentation:   Surgical Management of LMS https://youtu.be/WKGfH1M1be8 

Dr. Seth Pollack’s NLMSF Grant Presentation at CTOS
Executive Committee of the NLMSF – SPAEN International LMS Research Roundtable
https://youtu.be/H-G45aHhwAA

Gynecological Health Care Patient Advocacy Virtual Medical Panel
Uterine Fibroids – What You Should Know Before Having Fibroid Surgery http://bit.ly/2K82sFO –  the introductory brief about the medical panel youtube presentation
https://youtu.be/3d0FoUPv738 

Related research information:
 
Endometrial Sampling for Preoperative Diagnosis of Uterine Leiomyosarcoma
https://pubmed.ncbi.nlm.nih.gov/34265441/
Preoperative Blood Inflammatory Markers for the Differentiation of Uterine Leiomyosarcoma from Leiomyoma:  https://pubmed.ncbi.nlm.nih.gov/34211296/
 
From PubMed:
Gynecological sarcomas represent 3% to 4% of all gynecological malignancies and 13% of all sarcomas. The uterus is the most frequent primary site (83%); less frequently sarcomas are diagnosed originating from the ovary (8%), vulva and vagina (5%), and other gynecologic organs (2%). As the classification of gynecologic sarcomas continues to diversify, so does the management. Accurate histopathologic diagnosis, utilizing appropriate ancillary immunohistochemical and molecular analysis, could lead to a more personalized approach. However, there are subtypes that require further definition, with regard to putative predictive markers and optimal management. The aim of this review is to highlight the importance of accurate diagnosis and classification of gynecologic sarcoma subtypes by the surgical pathologist in order to provide more tailored systemic treatment, and to highlight the increasing importance of close collaboration between the pathologist and the oncologist.

 

Nancy Brook,  Social Worker –  Stanford Medical Center               Guest Speaker – Survivors Inspire Peer Network
Presentation –   Coping during and after treatment https://youtu.be/834z6_D5x34

OCTOBER 15, 2020

Survivors Inspire Peer Network Meeting
-Employment Rights / Protecting your rights as a cancer patient.
-Telemedicine access – making it easier for patients.
-Pros and cons of telemedicine from the perspectives of patients and providers.
-Current patient/family legislation in the pipeline from the NCCS

Featuring guest speaker, Lindsay Houff. She is Senior Policy Manager at the National Coalition for Cancer Survivorship. You can view a video of the meeting here.

October 5, 2020

NLMSF Patient-Caregiver Advocacy Roundtable Meeting
-Discussion Topics:  
-LMS recurrence
-Treatment options
-ULMS and aromatase inhibitors
-Research updates

Guest Speaker: Nam Quoc Bui Clinical Assistant Professor, Medicine – Oncology Dr. Bui is a Clinical Assistant Professor of Medicine at the Stanford Cancer Institute and a specialist in the Sarcoma and Developmental Therapeutics programs. View the meeting here.

SEPTEMBER 17, 2020

Survivors Inspire Peer Network Meeting
Discussion topics: 
-Cancer Survivorship and quality of life.
-Side Effects management during and after treatment.
-Update on the Rogel Sarcoma Survivorship Clinic, Univ. of Michigan
https://youtu.be/A8fSMq9b3DI

 

Guest Speaker: Denise Reinke has been with SARC since its inception in 2002 assuming increasing responsibilities over the years. She is uniquely positioned to be engaged in sarcoma research given her sarcoma nurse practitioner, investigator on NIH grants, clinical trials, pharmaceutical and business experience. View the meeting here.

SEPTEMBER 7, 2020

Patient – Caregiver Advocacy Roundtable Meeting
Discussion Topics: 
-LMS treatments and updates on research genomic testing for LMS.
-LMS Recurrence.
-Standard of care.

 

Guest Speaker:   Dr. Matt Hemming, Dana Farber Cancer Institute. Dr. Hemming received his PhD from Harvard University in 2007 and MD from Harvard Medical School in 2012. Following internal medicine internship and residency at Massachusetts General Hospital, he trained in the Dana-Farber/Partners Cancer Care Hematology/Oncology Fellowship Program. Dr. Hemming is a physician in the Sarcoma Center and conducts basic and translational research in sarcoma.

 

AUGUST 20, 2020

Elizabeth Davis, MD – Vanderbilt Cancer Center

Participate in the upcoming Survivors Inspire Peer Network as we are joined by Dr. Elizabeth Davis , from the Sarcoma Center at Vanderbilt-Ingram Cancer Center. She will speak about a review of LMS statistics, treatments, and clinical trial updates, as well as self-advocacy in care.

https://www.youtube.com/watch?time_continue=1&v=U-JW4GYi3tA&feature=emb_title&ab_channel=NLMSF

AUGUST 3, 2020

Join the upcoming Patient-Caregiver Advocacy Roundtable when we are joined by Dr. Alexander Lazar, Department of Pathology, MD Anderson Cancer Center. His topic: Pathology and what it means for patient care, treatment protocol impact, second opinions, and self-advocacy in care.

https://www.youtube.com/watch?v=gjvcYEdOZmw&feature=emb_title&ab_channel=NLMSF

JULY 16, 2020

Debra Friedman, MD  REACH for Survivorship – Vanderbilt Cancer Center

Survivors Inspire Peer Network Virtual Meeting featured guest speaker the Founder and Director of REACH FOR SURVIVORSHIP PROGRAM who discussed Survivorship Care Planning and Nutrition during and after treatment. Both impact maintenance of good health and quality of life.

JULY 13, 2020

Barbara VanHare,
Director, Rare Cancer Research Foundation
Partner with the NLMSF since 2017
for LMS to be one of 10 rare cancers
included in the Pilot Cancer Cell Line Project

Patient-Caregiver Advocacy Roundtable featured guest speakers from The Rare Cancer Research Foundation and the Broad Institute of MIT/Harvard speaking about the Cancer Cell Line Project. Patients’ consenting to tumor donation helps global research. Learn more about the collaboration of the NLMSF and the Broad Institute’s Cancer Cell Line Project and Dependency Map – tumor screening.

JUNE 8, 2020

Dr. Abby Sandler
NCI Executive Director
NCI  MyPart Network  – for
patient-driven natural history information
and data collection

During the Patient -Caregiver Advocacy Roundtable, a special presentation was made by the NCI on their MyPart initiative and what it can mean for the LMS community and future research. Awareness of this information is important to us all as stakeholders of our survivorship.  A summary of the presentation is available by emailing annie@nlmsf.org. You can also learn more here.

MAY 4, 2020

During the Patient – Caregiver Advocacy Roundtable meeting, we heard from Dr. Anette Duensing, MD, of the Hillman Cancer Center in Pittsburgh, PA,  She presented information on the importance of pathology and second opinion opportunities for patients. She also discussed current translational research updates going on in her lab. Dr. Duensing is a member of the NLMSF-SPAEN International LMS Research Roundtable.

APRIL 21, 2020

The Federal Drug Administration (FDA)  met with the NLMSF to discuss several questions posed by the Patient-Caregiver Advocacy Roundtable and offered an extensive Q & A session for participants.  10 representatives from the FDA were on hand for this teleconference.    A summary of the meeting is available by emailing annie@nlmsf.org.

SARCOMA WEBINAR SERIES

Dr. Paul Huang of the Royal Marsden Hospital is hosting an ongoing series of Weekly Sarcoma Webinars. The series, organized by Priya Chudasama of the German Cancer Research Center, will be every Wednesday beginning at 11:00 am EDT (unless otherwise specified). These webinars are free and open to the community.  LMS and other sarcoma subtypes will be discussed as we connect the clinical and research communities regarding the latest scientific advances.  Learn more and register here….

2019

 

NLMSF COLLABORATES WITH CANCER CARE
UPDATE on Rare Sarcomas – featuring Leiomyosarcoma

with Dr. Breelyn Wilky and Dr .Jonathan Trent – October 11, 2019

https://www.cancercare.org/connect_workshops/760-update_rare_sarcomas_2019-10-11

JAMES CANCER CENTER/SOLOVE CANCER INSTITUTE: TACKLING LMS, A TEAM SPORT
FRED HUTCHINSON CANCER CENTER/SEATTLE CANCER CARE: FACING SARCOMA / LMS TOGETHER
MD ANDERSON CANCER CENTER: FACING LMS TOGETHER
SARCOMA ONCOLOGY CENTER: FACING LMS TOGETHER
DANA FARBER CANCER CENTER: 2019 SARCOMA CONFERENCE 

2018

HILLMAN COMPREHENSIVE CANCER CENTER: FACING LMS TOGETHER
TORONTO INTERNATIONAL SARCOMA SYMPOSIUM
MAYO CLINIC: Facing LMS Together
STANFORD HEALTH CARE : FACING LMS TOGETHER
DANA FARBER CANCER INSTITUTE: Annual Sarcoma Conference
MOFFITT CANCER CENTER: FACING LMS TOGETHER Part 1, Part 2, Part 3

2017

UCLA/RONALD REAGAN MEDICAL CENTER
FRED HUTCHINSON CANCER CENTER / SEATTLE CANCER CARE
DANA FARBER CANCER CENTER
KNIGHT CANCER INSTITUTE