I recommend that people that are newly diagnosed with any sarcoma, but certainly LMS – seek a Sarcoma Specialist immediately. Sarcomas are difficult to diagnose in the first place, so if you have a lump or bump anywhere- make sure to advocate for yourself to your primary care physician that perhaps seeking a sarcoma specialist’s opinion would be wise. It certainly would be!
When you are in treatment- many things can happen. Make sure you are fully informed of the side effects that might happen. They might not happen, but in case them do, you need to be armed with information and always call your care team when you are experiencing a
side effect so they can be involved in helping you . . . communication is important with your care team! They can’t help if they don’t know what you are going through . . . and they want to be involved in your care all the way through to the end of treatment and beyond.
End of treatment- a survivorship plan is important – to know how often you will be followed, what it will entail, how to rebuild your quality of life, for no only you, but whoever has helped be your caregiver – both of you need to recharge your batteries and turn to a
new chapter in living and taking care of yourselves.
The NLMSF continues to help me through my journey and I appreciate the support all along the way – 24/7 availability.