Newly Diagnosed with Leiomyosarcoma-Initial Steps

newly diagnosed with leiomyosarcoma

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If you Have Been Newly Diagnosed with Leiomyosarcoma, you may Have Some of the Questions Below:

 

What do I do now?

What do I need to know?

Important considerations/decisions

CANCERLINQ Information Video for patients:

https://youtu.be/qF-pGWU8oQI

Just Updated! The Free Must-Have App For Patients And Caregivers From ASCO
The award-winning Cancer.Net mobile app is an interactive tool that helps patients keep track of questions to ask their health care team, save information about their prescriptions, track symptoms and side effects, and much more, no matter where they are. Spanish-enabled! Now featuring a new user interface and “My Health” Dashboard. 
 
IF A BIOPSY OR SURGERY IS ANTICIPATED / REQUIRED –  PLEASE TAKE NOTE OF THIS IMPORTANT CONTRIBUTION YOU CAN MAKE TO RESEARCH THROUGH TUMOR TISSUE DONATION:
 
See how you can impact the future of research through a simple patient consent for tumor tissue donation –  only your signed consent is required and the Rare Cancer Research Foundation takes care of the coordination.
 
To learn more about how to be empowered to direct your cancer tissue sample to research projects, for the development of research models,

NAVIGATING THE  INITIAL DIAGNOSIS  – IMPORTANT  CONSIDERATIONS

First and foremost,  you must find a SARCOMA SPECIALIST,  preferably one who has treated many patients with Leiomyosarcoma.

Finding the Right Treatment Center – Surgeon and Oncologist for You:

  1. Ask your primary care physician who he or she would recommend as a Medical and/or  Surgical Oncologist ( Sarcoma Specialist) familiar with the treatment of Leiomyosarcoma.  If they have no suggestions then refer to the list of Sarcoma Centers, all of which have experience in the treatment of  Leiomyosarcomas.
  2. Make sure to ask if the Oncologist, and the Sarcoma Center you select, accept your health insurance plan.
  3. It is essential that you have a family member, friend, or caregiver accompany you to your appointments with the Oncologists.  They should take notes of what is said that can be reviewed by you after the appointment.
  4. Have a medical appointment organizer notebook to help you keep all your important paperwork such as lab test results, radiology/imaging reports, pathology reports, current medications as well as the notes and questions you have written down in good order and ready for each appointment. Staying organized allows you to be better prepared for all your appointments.
  5. Make sure that you write down the questions you want to ask the Surgeon or Oncologist and take them with you to your appointment. (To view questions to consider asking – go to the “Questions to Ask Your Surgeon or Oncologist” tab on this website).
  6. It’s ok to want to think about and pursue a second opinion –  It is acceptable, so give yourself permission to do so:
    https://www.cancer.org/treatment/finding-and-paying-for-treatment/choosing-your-treatment-team/seeking-a-second-opinion.html

Dr. Seth Pollack, a leading medical oncologist and sarcoma specialist, encourages patients to find the doctors most equipped to treat their disease, one who will communicate with them and find the most effective treatment options for them.

THE CANCER CARE TEAM –  AN INTRODUCTION with Dr. Robert Maki   (From Cancer.Net)

https://youtu.be/pg1CH4DQwdw  – video link explaining the role of each care team member

DONATE YOUR TUMOR TISSUE FROM AN UPCOMING BIOPSY OR SURGERY –  TO ADVANCE LMS RESEARCH:

The Cancer Cell Line project is an opportunity for patients to contribute to research in a big way – a personal wayhttps://leiomyosarcoma.info/cancer-cell-line-project/ 

 Uterine Sarcomas: The Latest Approaches for These Rare but Potentially Deadly Tumors

“Uterine sarcomas are rare malignant uterine neoplasms that are responsible for a large majority of uterine cancer–associated deaths. The subtypes include leiomyosarcomas, endometrial stromal tumors, and adenosarcomas. Standard treatment includes complete surgical resection. Adjuvant treatment with chemotherapy, hormonal therapy, or radiation may be considered in patients with high-risk disease. To learn more information about preoperative diagnosis and the role of pathology, and we summarize the current literature regarding the management of uterine sarcomas.”-Review Article | March 15, 2017Oncology JournalGynecologic CancersSarcoma

http://www.cancernetwork.com/oncology-journal/uterine-sarcomas-latest-approaches-these-rare-potentially-deadly-tumors

WHEN THE DOCTOR SAYS ITS CANCER
https://youtu.be/nEXz7I5q3U4

In this video, Dr. Jonathan Berek and patient advocate Angela Lee discuss steps to take after a cancer diagnosis, including coping with the news, locating an oncologist, and finding support.
Signs and Symptoms of Soft Tissue Sarcomas; How Are Soft Tissue Sarcomas … biopsy, and imaging tests. The clinical stage will be … Sarcoma Stage …
Dr. Robert Maki, Physician Assistant Heather Hylton, and Nurse Practitioner Mee-Young Lee explain the roles of different members of an oncology care team, and how each contributes to the care of patients.

Read a full-text transcript.

Reaching For the Cure Together

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ALERTS:
The International Leiomyosarcoma Research Roundtable launches in 2019.  More information will follow as this initiative will help further advance LMS -specific investigational research.
The LMS COMMUNITY LIVE SUPPORT HELPLINE is open  9 am - 9 pm ET:  888-264-4670.
Consent to donate your tumor tissue before surgery.  For details go to:  https://leiomyosarcoma.info/cancer-cell-line-project/
Contribute to LMS Research 
"Invest" in Research - Support / Contribute to LMS Research Projects for 2018 -Click here for more info
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