By Marissa Gilbert, LCSW, MS
Adapted from my article originally published July 30, 2024, on Think Happy Live Healthy. Revised October 6, 2026.
As a sarcoma survivor, I know how much cancer can change—and how little of that change is visible to other people. My tumor grew undetected for over a year. The treatment and care I received saved my leg and my life. But adjusting to life after treatment was where I struggled most with my mental health.
I originally wrote this for Sarcoma Awareness Month, observed each July. Sarcomas are cancers that begin in bone or soft tissues, such as muscle, fat, nerves, and blood vessels. Awareness matters throughout the year: so does support for the uncertainty, fear, and changes that can come with diagnosis, treatment, and survivorship.
Follow-up scans and appointments can bring fear even when you feel physically well. You may find yourself watching every symptom or bracing for difficult news. Ask your care team what monitoring fits your history, what changes to report, and who to contact between appointments. Follow-up care after cancer is different from routine screening for people without symptoms.
Friends, family, and support groups can help you feel less isolated. Sometimes you need someone who understands cancer; sometimes you need someone who can listen without trying to make everything better. It’s okay to be specific about what would help today.
Movement, nourishment, and rest can be ways to support yourself, adapted to your symptoms, energy, and care team’s guidance. They are not a proven way to prevent sarcoma. The American Cancer Society notes that most soft-tissue sarcomas cannot currently be prevented. Developing cancer does not mean you failed to take care of yourself.
You don’t have to learn everything at once. Bring the questions that matter most to your appointment, ask for explanations in plain language, and consider bringing someone who can help you remember what was discussed. If searching leaves you more overwhelmed, your care team can help you decide what information applies to you.
Fear of recurrence, changes in your body, grief, and shifts in identity can continue after treatment ends. Counseling, therapy, or a cancer support program can offer room to talk about what you’re carrying and explore support that fits where you are now.
When I wrote the original article, it had been more than ten years since my diagnosis and treatment. I was grateful for the growing availability of mental health support, and I still encourage patients and loved ones to reach for it. You don’t have to wait until things feel unbearable.
Allow yourself to feel fear, anger, sadness, relief, joy—or several things at once. Be patient with your healing process. You don’t have to “move on” or “be strong” all the time. Support can make room for the changes and uncertainty without asking you to pretend they aren’t there.
For personal stories and community perspectives, you can also explore The Mighty. Individual experiences are not medical guidance; availability and eligibility for services vary.
If cancer or a difficult medical experience is weighing on you, learn about my approach to medical trauma therapy or Start Here.
Original title: “Shining a Light on Sarcoma Awareness Month: Join the Fight Against Rare Cancers.”