2843 E. Grand River Avenue – #230 East Lansing, MI 48823 annie@nlmsf.org 303-783-0924

Coping with a New Leiomyosarcoma Diagnosis

Collaboration of Experts in Soft Tissue Sarcoma

Coping with a Leiomyosarcoma Diagnosis

  1. Being diagnosed with Leiomyosarcoma, 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.
  2. Treatment at a Sarcoma Center by sarcoma surgeons, radiation oncologists, and medical oncologists is essential.
  3. Check with 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 your treatment journey.  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, including health insurance coverage issues.
  4. Patients should make sure that their treating physician(s) and treatment facilities are within the insurance coverage network.
  5. Helpful resources for Medicare and Medicaid patients can be found at www.CMS.gov. Ask the treatment center about payment plans for large medical bills. They often can offer manageable interest rates compared to a credit card company. Paying cash can sometimes result in a portion of a medical bill being waived.
  6. Nonprofit hospitals, by law, have financial relief programs for under-insured patients. Again, your patient navigator can guide you.
  7. Check with your oncologist and pharmacist to learn about adverse interactions of different medications being prescribed to sidestep difficult side effects and potential complications.
  8. Seek out sarcoma or Leiomyosarcoma-specific patient support groups. Again, ask your patient navigator if there is an established support group that you could join. Such a support network can make a big difference in your well-being and that of your family. Having a new leiomyosarcoma diagnosis does not mean you are alone in this journey.  Everyone can use a little support!
  9. Seek out sarcoma and LMS organizations, like the National Leiomyosarcoma Foundation, that support and advocate for patients.  They can provide invaluable resource information.
  10. Keep a copy of all of your medical records at home, including copies of reports and DVD’s of all prior imaging studies. You never know when you will need to send copies of some of this information to another treatment center or physician.
  11. DO YOUR RESEARCH – Throughout your treatment journey continue searching for all the information you can find about the latest advancements in LMS research and treatment.

You will be in the best position to self-advocate during medical appointments if you know as much as you can.   Knowledge is Power!  Learn as much as you can about your leiomyosarcoma diagnosis and the resources available to you to be Empowered! Coping with a new leiomyosarcoma diagnosis may be hard, but it is in your hands to seek out the necessary support- you are not alone in this journey!

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!