ON THIS PAGE: You will read about how to cope with challenges in everyday life after a diagnosis of MDS. Use the menu to see other pages.
What is survivorship?
The word “survivorship” means different things to different people. Common definitions include:
Having no signs of disease after finishing treatment.
Living with, through, and beyond the disease. According to this definition, survivorship begins at diagnosis and includes people who continue to have treatment over the long term, to either reduce the risk of recurrence or to manage chronic disease.
Survivorship is one of the most complicated parts of having MDS. This is because it is different for everyone.
Survivors may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after the diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain about coping with everyday life.
Survivors may feel some stress when their frequent visits to the health care team end after completing treatment. Often, relationships built with the health care team provide a sense of security during treatment, and people miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexual health and fertility concerns, and financial and workplace issues.
Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:
Understanding the challenge you are facing
Thinking through solutions
Asking for and allowing the support of others
Feeling comfortable with the course of action you choose
Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the place where you received treatment.
Changing role of caregivers
Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with MDS, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.
However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving.
A new perspective on your health
For many people, survivorship serves as a strong motivator to make positive lifestyle changes.
People recovering from MDS are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.
It is important to have recommended medical checkups and tests (see Follow-up Care) to take care of your health. Rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.
Talk with your health care team to develop a survivorship care plan that is best for your needs.
Looking for More Survivorship Resources?
For more information about survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:
ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print out.
Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes next after finishing treatment.
Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including those in different age groups.
The next section offers Questions to Ask the Health Care Team to help start conversations with your health care team. Use the menu to choose a different section to read in this guide.