Newly Diagnosed With LMS
NEWLY DIAGNOSED WITH LMS
What do I do now?
What do I need to know?
Important t considerations and decisions
What questions do I need to ask my oncologist once I have made my decision?
PATIENT COMPASS FOR NAVIGATING THE INITIAL DIAGNOSIS: and
THE IMPORTANT CONSIDERATIONS / DECISIONS THAT NEED TO BE MADE:
First and foremost, you must find a SARCOMA SPECIALIST, and preferably one who has seen many cases of Leiomyosarcoma.
NOTE: When you make your decision, consider: larger hospitals have a larger treatment population/volume of individual cases, as well as cutting edge treatment approaches, with distinguished research oncologists/clinicians.
The American Medical Association (AMA) website (www.ama-assn.org) has a locator service called “Doctor Finder.” This resource shares information about member physicians, such as their medical training, certifications, specialty area(s), and contact information. Key considerations in finding the right oncologist for you are:
- Ask your regular doctor, who he or she would recommend as a specialist in Leiomyosarcoma. They may also have a physician referral line and websites to help you as well.
- Check your health insurance coverage plan for names of oncologists who will accept your insurance coverage, and to make the oncologist/ treatment facility is within the insurance coverage network.
- Questions you will want to ask of the oncologist you select and meet:
- How long have you been in practice and how many patients have you seen with Leiomyosarcoma (LMS)?
- Are you involved in LMS research project and have you been involved in clinical trials?
- Is there a multi-faceted treatment strategy that would involve complementary therapies for potential effective treatment?
- I have a caregiver/family member who will want to accompany me to your appointments as support if that is acceptable?
- What hospital affiliation do you have that will be taking care of me for surgery and other treatment?
University Medical Centers – is a teaching hospital connected with a university medical school, with a focus on cancer/sarcoma research for advancement of treatment options.
Community and Regional hospitals are may be affiliated with university centers and their oncologists may or may not have expertise in LMS.
Cancer Centers may offer cutting edge technology, experienced staff, Complementary therapies, and have a full range of services to provide patients, including a social worker support/emotional support programs, but not offer everything.
Outpatient Clinics – independent oncology practices or hospital-affiliated departments or a cancer center affiliate. Most chemotherapy and radiation treatment is administered in such outpatient settings.
- Is financial assistance counseling /resource information available through your office and/or the hospital? Is there a financial partnership with the treatment hospital to be involved in my care?
- Who else will be part of the support team – nurses, social worker, patient advocate? What other disciples collaborate to help with my care – i.e. integrative medicine, psychosocial support (social worker, psychologist, psychiatrist, support groups etc.)
- How can I reach a care team member outside of business hours or if you are on vacation?
Below is a list of Sarcoma Centers across the country help wherever you live or are willing to travel for your initial appointment/care:
List to be provided