Coping With A New Diagnosis

1. First of all, make sure you are going to be seen at a SARCOMA CENTER – to allow yourself to be seen by a Sarcoma Specialist.
2. Check the treatment facility you have chosen to find out if you can be assigned to a “Patient Navigator,” hospital Patient Advocate or hospital social worker, to help guide you through from initial appointments, to treatment appointments, all the way to recovery.
3. A Navigator’s responsibility is to mitigate obstacles patients can face in accessing and receiving treatment. A Navigator can help patients through what can be a confusing medical system, especially as it relates to individual health insurance coverage.
4. Being diagnosed with LMS or any form of cancer, involves, initial disbelief, fear, anger, sadness, and much more. Patients and their families/caregivers need all the support they can possibly harness to get them through the difficult journey, with the help and support they need and deserve.
5. Patients should make sure that their treating physician(s) and treatment facility are within the insurance coverage network.
6. A good resource to empower patients: Go to CMS.gov to check states’ Consumer Assistance programs. There is valuable information to find there.
7. Ask about payment plans for large bills. Medical providers usually offer manageable interest rates compared to a credit card company. Paying cash can sometimes allow for part of a bill expense to be waived.
8. Also, go to HealthCare.gov to learn more about what you should know about filing Your health Benefits Claim. There is valuable information to become aware of before you file!
9. Nonprofit hospitals, by law, have financial relief programs for under-ensured patients. Again, your Patient Navigator can guide you.
10. Self-advocate to establish a “medication therapy management” situation, where not only do you ask questions of your oncologist/ medical treatment team, but your pharmacist as well – to learn about potential conflicts of different medications being prescribed to sidestep difficult side effects and potential complications.
11. Seek out sarcoma or LMS-specific patient support groups. Again, ask your Patient Navigator if there is an established support group that you could join. Such a resource support opportunity can make all the difference in your well-being, and that of your family caregiver as well. Everyone can use a little support!
12. Seek out LMS organizations that support and advocate for patients, as well as fund research to accelerate treatment advancements for increasing treatment options for patients newly diagnosed and who those who might face a recurrence.
13. DO YOUR RESEARCH – to prepare for all of your future appointments, even after treatment has ended, and monitoring appointments are in progress. Learn about the latest progress in research and treatment options for Leiomyosarcoma, in case a recurrence happens. You will be in the best position to self-advocate during medical appointments if you know as much as you can. Knowledge is Power!

Reaching For the Cure Together