While many patients are told about the long-term health effects of treatment before starting, they often don't recall or didn't concern themselves with them at that time. This is understandable. 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? You should learn what your risks are based on the treatment you received, learn what you can do to prevent them, if possible, and learn how to monitor for them. You have taken the first step by developing a survivorship care plan. Some survivors may also 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. Contact cancer centers in your area to see if they have a survivor's clinic or search for a clinic on OncoLink's survivorship clinic list (though this list is not exhaustive).
After active treatment is complete, you will move into follow up mode. This usually means you will see your oncology team less often. For many, this 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. Survivors are often surprised by their emotions at this time. You may anticipate jumping for joy and throwing a party. Instead, you may find yourself crying in the parking lot after your last treatment, feeling vulnerable in unexpected ways.
You may find it distressing that you are no longer getting active treatment. You may miss the much needed daily or weekly support you got from the oncology team. You may experience fear, sadness, anger, isolation, and grief. This is normal! You may also feel a sense of relief, gratitude, and be proud of yourself for getting through treatment – as you should!
The end of therapy is a time when friends and family may say, "Congratulations" and "You must be glad to be done", though you may be feeling uncertain about this milestone. Friends, family and even the oncology team can be surprised by the complicated emotions you are experiencing. They may not realize that these emotions are common and even expected, which may make you feel even more isolated. You aren't alone. These are common reactions and the information in your care plan will help you transition to survivorship.
For starters, be assured that your oncology team is always there if you have any concerns. Plans for follow-up care have been 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. You may only see the oncology team once or twice a year, but they are always a phone call away.
Coping with your emotions after cancer
Any time of transition in your life can be stressful. You must give yourself time to adjust to this new place. You may hear from others, “it must be nice to be getting back to normal.” But as any cancer survivor will tell you, things have changed. So has your 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. CancerCare provides online and telephone support groups and professional counseling. Many cancer centers and cancer service organizations offer support groups for survivors to address their specific concerns after therapy. A “buddy” program can match you with someone who’s been in your shoes and can be a listening ear and support person – or you can become a buddy to someone else. No one understands this time better than someone who has been there, and this support can be very valuable. Buddy programs are offered by Imerman Angels, Cancer Hope Network, and many other disease-specific organizations.
For many, a cancer diagnosis and treatment is a traumatic experience. Recovering from this trauma can be complicated by the late side effects of treatment. These side effects can impact your quality of life long after you have completed your cancer treatment. Some survivors experience symptoms of post-traumatic stress disorder. This can include sleep disturbances, nightmares, flashbacks, avoiding places associated with the experience (like your treatment center), feelings of hopelessness, anger and guilt (including survivor's guilt), loss of interest in things you usually enjoy and substance use.
It is important to find ways to cope with the trauma of cancer and your experiences. If you are having symptoms of post-traumatic stress, ask your care team for a referral for counseling. Your oncology social worker can help navigate your insurance and find an experienced provider who can give you support and therapy. Your team can also refer you for psychiatry support if medication treatment may be helpful in treating your post-traumatic symptoms.
However, out of trauma, comes the possibility of post-traumatic growth. This is the ability to use challenging experiences to change and grow psychologically and emotionally. You may ask yourself, “how has cancer changed me?” Many patients have said, “cancer is the best thing that ever happened to me.” Cancer taught them to live. To appreciate the simple things in life. To love. To give back. To be close to others and show compassion. Even out of the most challenging experiences in our lives, there is room for growth, improvement, and change. After treatment, you may try new things, decide it’s time to take that trip you have always been wanting to do, join a spiritual community, or even find a way to “give back” through volunteer work, advocacy and fundraising for a cancer service organization. All of these activities help you grow after cancer.
Some cancer patients have depression and anxiety during and after treatment. Many patients express “scanxiety” when having their routine scans for follow-up. They worry about what the scans may show - “has my cancer come back?” This is normal after going through such an experience. It’s important to talk to your team if you are having these feelings. They do usually improve with time and with your improved abilities to cope with worry and fear. However, sometimes they don’t go away or even get worse. This is a time for concern. Signs of persistent depression and anxiety include trouble sleeping (insomnia) or sleeping too much (hypersomnia), hopelessness, inability or unwillingness to participate in normal activities and even thoughts of self-harm or suicide. If you are having these symptoms, talk to your care team immediately.
Coping with practical concerns after treatment
It is essential to maintain your health insurance after you have completed treatment so you can have the necessary follow-up care. Because your health insurance is often related to your job, you may be wondering about returning to work. This can also help to re-establish some normalcy in your life after treatment. However, returning to work can be a challenge as well. For some, disability is the best option. Talk with your care team about your desires for work after treatment. There are also some great resources for navigating work, disability, and insurance.
- Learn about your rights and your employer's responsibilities under the law. You may want to talk with human resources professionals at your job about things like returning to work, FMLA, and reasonable accommodations. OncoLink's section on legal, insurance, employment, and financial concerns provides great information about these issues.
- The National Coalition for Cancer Survivorship and the American Cancer Society websites have financial and insurance information for survivors.
- The Cancer Legal Resource Center and Triage Cancer provides information on cancer-related legal issues, including insurance coverage, employment and time off, and healthcare and government benefits.
- Cancer and Careers is a resource for all things employment-related, from time of diagnosis well into survivorship.
Relationships after cancer
Cancer can have a profound impact on your relationships. This can include our friendships (new and old), our family, our co-workers, or even a dating/intimate relationship. As cancer survivors, you may ask yourself: when what and how do I tell someone that I am a cancer survivor? Or perhaps maybe, do I even need to tell them?
Disclosure of your cancer history can be particularly challenging if you are thinking about dating and new intimate relationships after cancer. Chances are you have physical scars from your cancer treatment. You may also experience changes to your sexual health and function as a result of your treatment. A new partner may bring up questions about your ability to get pregnant or father a child. This is a lot for a cancer survivor to navigate. It’s important that you are comfortable “in your own skin.” Think about what you want to share with someone new in your life. Perhaps, give them small pieces of information to start to gauge their comfort level. If they ask questions about your scars, be prepared with what you want to say about them. Practice your talk with a trusted friend. Therapy after treatment can also help you strategize how to talk with a new partner about your cancer history and its long term impact on your life.
Sexual health and fertility
How cancer affects your sexuality is different for every survivor. Some find the support they need through their healthcare team, their partner, friends or fellow survivors. Some cancer advocacy groups host discussion boards where you can "talk" about concerns with someone who has been there. The American Cancer Society and LIVESTRONG both offer sexuality information for men and women. Couples and/or sex therapists are extremely helpful for couples who are struggling with intimacy after cancer. Ask your team or social worker for referrals to therapists who are experienced in sexual health issues after illness.
Personal issues related to 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 the Oncofertility Consortium, LIVESTRONG and Resolve can help with fertility questions and issues. Us Too and the American Cancer Society both provide fertility and sexuality resources.
All of this can be a bit overwhelming, but the fact that there are over 15 million cancer survivors in the United States today is a 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.