The "End" of the Journey
Carolyn Vachani, RN, MSN, AOCN
Abramson Cancer Center of the University of Pennsylvania
Last Modified: June 23, 2009
After active treatment is complete, you will begin a plan for follow-up care. This will involve less frequent visits to the oncology team, which for many can be a very scary time. The weekly or monthly visits to the oncologist are reassuring; someone is checking on things and giving you the thumbs up. Completion of therapy is a time when friends and family say, "Congratulations" and "You must be glad to be done", but you may be feeling uncertain about this milestone. You aren't alone. This is a very common reaction and there are a few tips to help you deal with it.
For starters, be assured that your oncology team is always there if concerns arise. The protocols for follow-up care are developed to follow each person in the best way. This plan varies for every type of cancer and may involve periodic blood work, radiology scans and tests, and physical exams. The National Comprehensive Cancer Network is one organization that develops follow-up protocols, which you can access on their website.
You will need to settle in to your "new normal". Friends and family will say it must be nice to be getting back to normal. But any cancer survivor will tell you, things have changed, and so has the definition of "normal". Many survivors say they look at life differently, they don't take things for granted and don't sweat the small stuff. A cancer diagnosis changes you as a person, something people around you may not fully understand. It may be helpful to join a group of survivors, either formally (in a support group) or informally (gather a few folks you have met along the way). Email and the Internet have created a wonderful support for all sorts of concerns, and survivorship is no different. Visit the Association of Cancer Online Resources to find an email group that fits your needs or search the Internet for cancer survivor support. Many cancer centers and advocacy organizations offer support groups for survivors to address their specific concerns after therapy. No one understands this time better than someone who has been there, and this support can be very valuable.
Completing treatment can also present other challenges. Your family or employer may expect things to pick up where they left off. Resuming your previous activities may not be as easy as it sounds. Many survivors suffer from fatigue or limited energy for months or even years after therapy. The time it takes to get over this fatigue varies greatly depending on the treatment received, the type of cancer, how fatigue affected you during treatment, and how well you can balance the demands on your time. Some people describe their energy as a bowl of candy. You start the morning with a full bowl, and every task takes one or two candies. You will need to continue to balance and prioritize your time and energy. Save a few candies when you have something special to do in the evening. Your bowl of candy will continue to get bigger every day and using this metaphor will help you mentally manage your time and energy.
The issues we have discussed thus far are generally "acute"; they will resolve or at least improve in the months following treatment. But there are many issues that can affect survivors long term, including health issues related to treatment, financial (employment and insurance), personal (fertility and sexuality), and psychological issues.
While many patients are told about long-term health effects before starting treatment, they often don't recall or didn't concern themselves with it at that time. This is understandable, because when you're presented with treatment options to save your life, thinking about what could happen ten or twenty years down the road isn't as much of a priority. So what to do now? Learn about what your risks are based on your treatment, learn what you can do to prevent them, if possible, and learn how to monitor for them. In other words, develop a survivorship plan of care. Visit OncoLife Care Plan to develop your plan and learn more about how to use a survivorship plan. Some survivors may benefit from a visit to a survivorship clinic. These clinics review your treatment history and develop recommendations for you and your primary care team based on your personal risks. The Cancer Survivors Project maintains a list of survivorship clinics.
Financial issues can be acute or long-term. There are many resources out there to help survivors, but it can take some homework to find what you need. OncoLink's section on financial and insurance issues may be helpful; the National Coalition for Cancer Survivorship and the American Cancer Society also offer financial and insurance information.
Personal issues dealing with sexuality or fertility can be emotionally draining and can interfere with personal relationships at a time when you need them most. OncoLink's section on fertility & sexuality may be helpful. Organizations such as Fertile Hope and Resolve can help with fertility issues. Us Too, Cancer Supportive Care Programs and the American Cancer Society are just a few of the websites with fertility and sexuality resources.
Survivors can often receive psychological support from other survivors and support groups. When symptoms of anxiety or depression persist, professional help should be sought from a psychologist or therapist experienced in working with cancer patients. Your cancer center or physician can often refer you to an experienced professional.
All of this can be a bit overwhelming, but the fact that there are over 10 million cancer survivors in the United States today is testament to the fact that you can do this! Take it one day at a time and seek the support you need to live and love your "new normal" life.