People with sarcoma often experience a complex combination of anxiety, fear, courage, frustration, loneliness, anger, dissociation, and determination — feelings that can make it very difficult to cope with what seemed routine just before their diagnosis. In addition, one must find a way to contend with recovering and rehabilitating from therapy, whether it is surgery, radiation therapy, or chemotherapy.
Experience treating and listening to cancer survivors has taught us that information and support from others seem to be the keys to providing help with life after sarcoma. Survivors have told us about many of the problems and challenges that can arise after active treatment:
- Although patients are usually relieved when the rigors of active treatment end, they can also be worried about losing the support, security, and surveillance afforded by their cancer care team.
- Survivorship can be lonely at times. Patients often return alone for follow-up visits, family and friends have resumed their lives, and survivors may feel reluctant to discuss the emotional or psychological stresses of readjustment even with those closest to them.
- Survivors may have to adjust to an altered physical self-image and to changes in sexuality and fertility.
- General uncertainty about a long-term, cancer-free survival can threaten a person's sense of control, emotional well-being, physical adjustment, and comfort about planning for the future. Anxieties and fears that were kept in the background during active treatment may move to the foreground in the weeks and months afterwards.
- Nearly half of all cancer survivors are working adults. Issues of employment and insurance can be complex, and issues of disclosure can also make dating and other social situations more complicated than before treatment.
Life after Sarcoma
Although a cancer diagnosis can be frightening, it is not the diagnosis or the label of cancer that hurts or kills us. It is important for your emotional well-being that you not imagine the worst when the worst is not likely to happen. It may be helpful to focus on living fully one day at a time.
For many people with soft tissue sarcoma, the difficult period begins when active treatment is completed and “normal” life resumes. Physical, mental, and spiritual recovery can last months or longer, during which it is as important to learn how to be well as it was to cope with illness.
While the fact of illness cannot be changed, at Memorial Sloan-Kettering Cancer Center we have found that the burden can be made easier by sharing the human side of illness with others and using psychological and emotional support services.
We offer a wide range of programs for sarcoma survivors and their families through our Counseling Center and Resources for Life After Cancer program. Our social workers assist sarcoma patients, and our interfaith Chaplaincy Service provides spiritual counseling. Our Integrative Medicine Service teaches nutrition, exercise, and stress management. These resources are highlighted here, along with links to resources from other organizations.
Other Aspects of Survivorship
To help patients manage some of the other issues that may come up in survivorship, Memorial Sloan-Kettering offers a wide range of programs for cancer patients, including the following:
At Memorial Sloan-Kettering Cancer Center, we have learned that some people benefit from one-on-one counseling for specific personal problems that may be complicating their ability to adjust to soft-tissue sarcoma and its treatment. The Memorial Sloan-Kettering Counseling Center offers this form of counseling.
Living Beyond Cancer
People facing the challenges of cancer survivorship can access a variety of support services through the Living Beyond Cancer section of our Web site. This section includes information about professionally led support groups and counseling; survivorship clinics to manage late effects of cancer and treatment; recommendations about screening and healthy living; and specialized services to address sexual and reproductive health. We also offer a range of resources to help survivors, families, and friends better understand the complex emotional and social issues following treatment.
Resources for Life After Cancer
Resources for Life After Cancer offers lectures and educational programs for sarcoma survivors and publishes a newsletter for people with sarcoma and their families. Published with the Kristen Ann Carr Fund, the newsletter is available online.
The Resources for Life After Cancer program welcomes all former patients and their families, including those treated outside of Memorial Sloan-Kettering and provides a wide array of support services including individual, family, and group counseling; seminars and workshops; a telephone information helpline; and a lending/reference library. These services address a range of social, practical, and personal issues, such as insurance and employment, survivorship as a single person, and concerns of caregivers. For more information, please call the Resources for Life After Cancer program at 646-888-4740.
Chemotherapy, radiation, or surgery for sarcoma can affect patients' range of motion, strength, flexibility, balance, and endurance. Sarcoma patients who undergo physical and occupational therapy immediately after treatment can improve their function and mobility. At Memorial Sloan-Kettering physical therapists evaluate each patient following surgery or hospitalization and provide them with an individualized exercise program designed to improve strength, endurance, and balance. Our therapists also help assure that patients with soft tissue sarcomas in the legs receive the most appropriate brace or assistive device.
Our occupational therapists educate patients about the changes that can result from treatment and about adaptive equipment and compensatory techniques that can increase their independence during their daily routines.
See Rehabilitation for further information about our services, including appointment information.
Access Information Through our Patient Portal
Memorial Sloan-Kettering offers a secure Web site — called MYMSKCC — for patients to access personalized information about their care. If you enroll to use MYMSKCC, you can view, confirm, and keep track of appointments; access over 300 lab results; make changes to contact and insurance information; communicate with your healthcare team and other staff using secure electronic messages; and pay bills and view balances. Learn more about MYMSKCC.
To enroll in MYMSKCC, please ask a session assistant in clinic or contact your physician's office.