Newly Diagnosed with Leiomyosarcoma-Initial Steps
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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?
JIM MATHEWS – Long time Survivor/Thriver from an LMS Diagnosis, living in NJ
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.
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:
- 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.
- 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 with the Oncologists. They should take notes of what is said that can be reviewed by you after the appointment.
- 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.
- 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).
- Getting a second opinion is a good idea, common practice, and completely acceptable. Here are some tips:
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:
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, 2017| Oncology Journal, Gynecologic Cancers, Sarcoma
WHEN THE DOCTOR SAYS ITS CANCER