Network - Winter 2007
The news sounds good. Your cancer is in remission, and in many ways, your life has returned to normal. But are things really normal? Will they be normal again? Are you still dealing with side effects or other physical issues? Are you feeling a mixture of emotions? Has the struggle with cancer placed a financial strain on you or your family?
If any of these situations feel familiar, know you are not alone.
In fact, you belong to the group of more than 10 million cancer survivors in the United States. While statistics lag somewhat, they are impressive. In 2001, there were more than 2.2 million breast cancer survivors, 1.6 million prostate cancer survivors and 1 million colorectal cancer survivors. This number continues to increase, thanks in large part to:
- Earlier detection
- Improved treatments
- Supportive care of family and friends
- The huge group of baby boomers now entering the cancer-prone years
The difficult news is that recovery may not be the end of the cancer experience. For some, cancer becomes a chronic condition, requiring periodic treatment. Others may go into long-term remission. But even if it’s been years since you were successfully treated, no one, not even your cancer doctor, can tell you for sure that your cancer will not recur.
Cancer treatments also can be very toxic, leaving you with unique health needs that require lifelong surveillance and evaluation. And many cancer patients report that recovering from the social and emotional trauma of the disease can take longer than recuperating from some of the treatments.
Basically, there are no guidelines on how to survive survival. However, it helps to know that there can be physical, psychological, social, spiritual and economic impacts and that they may play different roles at different times during and after treatment.
Getting good follow-up care — physically and psychologically
Like others, you may have left the care of your oncologist or surgeon and returned to your primary care physician when you reached a specific stage of recovery or the five-year survivor mark, depending on the type of diagnosis and treatment. Because you may see a doctor who is unaware of your cancer experience or who may know little about it, it is vitally important for you to develop a long-term follow-up plan with your cancer doctor before transitioning to a primary care setting. This plan should include information about:
- Your cancer diagnosis
- Your treatment
- Potential consequences of the cancer and treatment
- Recommendations for the timing of follow-up visits
- The kinds of tests that should be performed during the visits
As a cancer survivor, you know that the effects of the disease and its treatments may not be merely physical. There are psychological, social, emotional and spiritual impacts as well. And many times it is difficult to separate these from the physical effects because they can be closely intertwined. Many of these affect quality of life, including fear, anxiety, anger, depression, frustration, changes in family roles, self-image and self-esteem. And like cancer’s physical impacts, they may be felt years later.
It’s important in the midst of this turmoil to have someone who can ease your stress by listening as you talk through these feelings. That person may be a pastor, priest, spiritual director, psychotherapist, support group or good friend.
Dealing with financial constraints
Like most patients, you may have incurred debts, experienced diminished income or encountered issues with your job during your treatment. Expenses may have included the treatment itself, the distance you traveled and additional costs of hotels and meals, days missed on the job, forced early retirement and problems with health insurance.
It is estimated that out-of-pocket expenses, due to cancer and its treatment, average $35,000 per patient. Fortunately, many hospitals like M. D. Anderson have case managers who help navigate the payment systems.
Knowing your rights
On the federal level, the U.S. Department of Health and Human Services Office of Civil Rights offers basic information. With eight regional offices, this group can help you understand the rules and regulations and process your complaints. You also should know that, thanks to the Americans with Disabilities Act passed in 1990, you cannot be denied a loan or other financial services because of your cancer history.
Each state also has rules and regulations. And some states, including Texas, have independent review boards to arbitrate claims at no cost to the cancer survivor.
In the section “Living With and Beyond Cancer,” U.S.News & World Report offers more information about surviving cancer, including late and long-term side effects, guidelines for follow-up care by cancer type and details on the psychological, social, spiritual and financial impacts.
You also can be proactive as a survivor by being well informed about your disease, your treatment and your rights as a consumer. Resources available to you include:
- National Coalition for Cancer Survivorship
- Office of Cancer Survivorship and the National Cancer Institute
- National Action Plan for Cancer Survivorship: Advancing Public Health Strategies, 2004, from the Centers for Disease Control and Prevention and the Lance Armstrong Foundation
- From Cancer Patient to Cancer Survivor: Lost in Transition, 2005, from the Institute of Medicine
For specific programs offered cancer survivors at M. D. Anderson through the Anderson Network, see The Legacy of Seven Survivors.