The Sarcoma Survivor’s Journey: Life After Treatment
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Many of my patients with sarcoma are focused on treatment, not on what happens afterward. Surgery and other treatments can make imagining a new normal a challenge.
But as a surgical oncologist, I always keep my patients’ lives after treatment in mind. For example, even after major procedures such as limb-sparing surgery or amputation, we will engage physical therapy to help recovery start as soon as possible.
That journey can be long and everyone’s journey is different. Some patients regain all function in months, but, for others, it can take a year.
But however long your recovery is, you won’t be alone. At Fox Chase Cancer Center, we offer comprehensive, whole-person care. That includes emotional support, one-on-one or through our STORIES (Sarcoma Together Offering Restorative Interaction Through Education and Support) sarcoma support group, which helps people affected by sarcoma with practical advice and coping strategies.
That support doesn’t end when your treatment does. That’s why I want my patients and everyone else with sarcoma to know more about what life after sarcoma might look like.
What to expect after sarcoma treatment
Whether you’ve experienced soft tissue or primary bone sarcoma, you’ll still see your care team after treatment is complete. They will work with you to put together a survivorship care plan. It will pull together a central source of information about your care, including:
Treatments you had for cancer
Doctors who treated you
A schedule for suggested testing
Side effects that require monitoring or treatment
Suggestions for diet and physical activity
You’ll also see your care team for regular checkups. These visits can include physical exams, lab tests, x-rays, and scans. It’s a chance to talk about any side effects you may be experiencing.
At first, I often recommend having these checkups every three to six months. But after a few years, they may be spaced further apart. Even though you won’t see your care team as often, they are always available should you have questions. And if you have an immediate concern, like a lump, they’ll want to see you right away.
Your well-being after sarcoma treatment
Life after sarcoma can be different than it was before. Depending on the treatment you received, you may be dealing with a variety of physical side effects. These can include:
Heart problems
Hearing loss
Loss of limb
Chronic pain
Fertility issues
Emotional concerns after cancer are also common. My patients have shared concerns such as:
Anxiety about cancer returning or new problems arising
Resentment for having had cancer
Guilt for surviving while others do not
Concerns about discrimination
Difficulty dealing with physical changes
Concerns about dating, marriage, and having a family
Physical and emotional side effects can happen right after treatment or years later. No matter how you’re feeling or what concerns you may have, you aren’t alone. Your multidisciplinary care team at Fox Chase includes people who specialize in all of these issues. Whether you’re getting used to a prosthesis or getting a handle on anxiety, you’ll have an expert by your side.
Post-treatment rehab for sarcoma survivors
At Fox Chase, we provide the support you need to regain strength and mobility, lessen side effects, and improve your quality of life.
Our multidisciplinary team works together to help you manage your care and cope with the effects of your cancer and its treatment. That could include help to manage:
Pain and swelling
Range of motion, flexibility, and balance
Skin changes
Mood disorders, like anxiety
Muscle weakness, tingling, or numbness
Fatigue
Bowel or bladder problems
Sexual dysfunction
Dietary concerns
The Fox Chase community includes a wide variety of rehab experts who can help you recover your strength; get moving again; and cope with physical and mental concerns, such as lymphedema or brain fog:
Dietitians: These specialists in nutrition can help you figure out the best eating plan to meet your needs. If you have trouble eating, they can also help you find ways to get enough food and fluid.
Lymphedema therapists: Reducing swelling and controlling pain are the goals of these specialists. They use exercise, massage, bandaging methods, and compression to provide relief from lymphedema.
Occupational therapists (OT): These therapists focus on doing daily activities. They can help you develop, recover, and improve the skills you need for daily life. OTs also provide guidance on preventing disability and maintaining health.
Physical therapists (PT): Examining, testing, and treating physical problems is what PTs do. Using exercises, heat, cold, and other methods, they work with you to restore or maintain the body’s strength, mobility, and function.
Psychiatrists and psychologists: Supporting you and your family emotionally is the focus of this team. Evaluations, medication management, therapy, and stress management skills help address emotional and cognitive concerns.
Speech therapists/speech pathologists: These specialists are trained to work with people with speech or swallowing issues. They’ll help you develop communication skills and make sure you can eat and drink safely.
You may receive many kinds of rehabilitation as part of your sarcoma survivorship care plan. And your needs will change with time. Some immediate side effects decrease with rehab, while others may not become apparent until years after treatment. That’s why I see myself as a long-term health partner for my patients.
Some people notice immediate changes when they start rehab. It’s not uncommon to see improvement right away in things like stress levels or ease of breathing. But other changes take time.
Reducing pain and improving strength are less of a sprint and more of a marathon. You’ll get the most benefit by sticking with your program and doing your exercises regularly. And let your care team know how you’re doing. We’re with you every step of the way.
Learn more about Fox Chase’s sarcoma survivorship program
Talk to your care team. They will work with you to develop a plan that meets your needs. They’ll help coordinate care across Fox Chase support services—even after cancer treatment is complete. And STORIES, our online sarcoma support group, is open to every sarcoma survivor, whether or not you got your treatment at Fox Chase. If you’d like to join, email me at [email protected] to request a link.
The need for expert care doesn’t end when cancer treatment is over. That’s why Fox Chase offers specialized survivorship care for the long term. We’re here to help you rebuild strength, learn new skills, and work through the emotions that come with it all.
Wherever you are in your cancer journey, you can call 888-369-2427 to find out how Fox Chase can help you. Or request a consultation online.
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