Top Tips for Newly Diagnosed with Leiomyosarcoma

Dec 9

December 9, 2023

Read about leiomyosarcoma (LMS) on the LMSDR website.
Read your medical reports thoroughly. Know where you have tumors, how many and how big. What was your mitotic rate? Was the tumor necrotic? Vascular? What is your grade and stage? Look up medical terms.
If uterine LMS, ask the oncologist to test your tumor for the percentage of estrogen receptors on it. Discuss estrogen suppression (even after menopause) with aromatase inhibitors as a treatment option.

Use your time with the doctor wisely. You only have about 20 minutes. Bring with a written list of prioritized concerns and questions.
Bring a second person to take notes for you.
Don't ask for a prognosis because they are often wrong. Just recognize you might always have this disease; you'll always need to be monitored.
Seek a second (even third) opinion from a sarcoma specialist at a high volume sarcoma center. Recommended sarcoma programs.
Keep up with routine scans and surveillance. LMS can recur many years after being in remission or NED (no evidence of disease).

There are only 3 treatment options for LMS: surgery, interventional radiology or chemotherapy (including targeted drugs and immunotherapy).
Surgery is the most effective treatment for LMS, if possible.
Most sarcoma specialists do not advise adjuvant chemo (chemo when there is no visible tumor) unless the they could not get clear margins.
Consider clinical trials FIRST, before agreeing to a treatment. Many trials combine older chemos with new drugs. If you have had the older chemos already, it will disqualify you from getting into the trial. Trials advance LMS treatments.
Seek consultations with surgeons, interventional radiologist and other specialists. Your oncologist specializes in chemo, not the other options.

Connecting with others with LMS can help a lot! We share treatment information, research and support. Join our Facebook group

Take a moment to breathe. Meaning, take a step back to collect your thoughts, digest what the doctors are saying and try to focus. It can seem so overwhelming at first. You have time to collect yourself, get answers and then you can start to advocate for yourself.
Do your homework and make informed decisions. Don’t let fear guide your decision making.
You don’t need to always be positive…t’s okay to grieve, be upset, and process emotions.
Be absolutely honest with your inner circle about how you are feeling. It will decrease loneliness and increase closeness.
Caregivers, let your loved one talk about their fears. Talk about yours too.
Learn to ask for and accept help from others.
Reframe your mindset from, “why is this happening to me,” to “what are my options, next steps?”
Prioritize self-care. Join support groups, find hobbies and ensure your mental health is taken care of.
Seek out cancer coaching, therapy and/or medication to help you cope.

Host a fundraiser on Facebook, in your community or virtually.
Participate in COUNT ME IN to donate some of your bio specimens and data for research on LMS.
Ask your friends and family to donate towards LMS research.

These tips were offered by the members of the Leiomyosarcoma Support & Direct Research Foundation (LMSDR) Facebook support group. Join us!

leiomyosarcoma

Sharon Anderson

Thinking Outside the Box