Life After Sarcoma: Survivorship, Rehab & Long-Term Support | Fox Chase Cancer Center

Many sarcoma patients understandably focus on getting through treatment, but planning for life afterward is equally important. Surgery, radiation, and chemotherapy can be all-consuming, making it difficult to envision a “new normal.” However, as a surgical oncologist, I consistently emphasize to my patients that recovery and well-being extend far beyond the completion of active treatment.

Even during aggressive treatment phases, we proactively plan for rehabilitation. For example, limb-sparing surgery or amputation is often followed immediately by physical therapy to begin the recovery process. The timeline for regaining function varies significantly; some patients experience substantial improvement within months, while others require a year or more. Regardless of the duration, patients should know they won’t navigate this journey alone.

At Fox Chase Cancer Center, we prioritize comprehensive, whole-person care. This includes not only medical interventions but also robust emotional support, offered through individual counseling and support groups like STORIES (Sarcoma Together Offering Restorative Interaction Through Education and Support), designed to provide practical advice and coping strategies for those affected by sarcoma. This support continues long after treatment ends, and I want all my sarcoma patients – and anyone facing this diagnosis – to understand what life after sarcoma might entail.

What to Expect After Sarcoma Treatment

Whether you’ve been diagnosed with soft tissue sarcoma or primary bone sarcoma, ongoing care is essential after treatment completion. Your care team will collaborate with you to develop a survivorship care plan, a centralized record of your cancer journey. This plan will include details about your treatments, the physicians involved in your care, a schedule for recommended follow-up testing, potential side effects requiring monitoring, and suggestions for diet and physical activity.

Regular checkups are a crucial component of post-treatment care. These visits may involve physical examinations, laboratory tests, imaging scans (x-rays, etc.), and opportunities to discuss any side effects you’re experiencing. Initially, I typically recommend checkups every three to six months, but the frequency may decrease after a few years. Even with less frequent visits, the care team remains accessible to address any concerns that arise, and immediate attention will be given to new symptoms like a lump or unusual pain.

Your Well-being After Sarcoma Treatment

Life after sarcoma can differ significantly from pre-diagnosis. Depending on the treatment received, patients may experience a range of physical side effects, including heart problems, hearing loss, limb loss, chronic pain, and fertility issues. Emotional challenges are also common. Patients have expressed concerns about cancer recurrence, resentment over having experienced cancer, guilt related to survival, fear of discrimination, difficulty adjusting to physical changes, and anxieties surrounding relationships and family planning.

These physical and emotional side effects can emerge immediately after treatment or years later. It’s vital to remember that you are not alone. Our multidisciplinary care team at Fox Chase includes specialists dedicated to addressing all these issues, whether it’s adapting to a prosthesis or managing anxiety.

Post-Treatment Rehab for Sarcoma Survivors

At Fox Chase, we are committed to providing the support needed to regain strength and mobility, minimize side effects, and enhance quality of life. Our team works collaboratively to manage your care and address the effects of cancer and its treatment. This may include interventions to manage pain and swelling, improve range of motion and balance, address skin changes, manage mood disorders like anxiety, alleviate muscle weakness or numbness, combat fatigue, address bowel or bladder problems, and address sexual dysfunction or dietary concerns.

The Fox Chase community offers a diverse range of rehabilitation experts who can assist in your recovery: dietitians to optimize your nutrition, lymphedema therapists to reduce swelling and pain, occupational therapists to help with daily activities, physical therapists to restore strength and function, psychiatrists and psychologists to provide emotional support, and speech therapists to address communication or swallowing difficulties.

Your sarcoma survivorship care plan may involve multiple types of rehabilitation, and your needs will evolve over time. Some immediate side effects may diminish with rehab, while others may not become apparent until years after treatment. Here’s why I view myself as a long-term health partner for my patients.

Some patients experience immediate improvements when starting rehab, such as reduced stress or improved breathing. However, other changes require sustained effort. Reducing pain and improving strength are often a marathon, not a sprint. Consistent adherence to your program and open communication with your care team are essential. We are with you every step of the way.

Learn More About Fox Chase’s Sarcoma Survivorship Program

Discuss your needs with your care team. They will work with you to develop a personalized plan and coordinate access to Fox Chase support services, even after cancer treatment is complete. STORIES, our online sarcoma support group, is open to all sarcoma survivors, regardless of where they received treatment. To request a link, email me at [email protected].

Expert care doesn’t end with cancer treatment. Fox Chase offers specialized survivorship care for the long term, helping you rebuild strength, learn new skills, and navigate the emotional complexities of recovery.

If you’d like to learn more about how Fox Chase can help, call 888-369-2427 or request a consultation online.