What happens after finishing treatment for cancer? For most people who haven’t experienced cancer themselves, it’s not a question they’ve ever considered. Lauren Chatalian, MSW, LCSW, Women and Children’s Program Manager at CancerCare, explains the unique challenges of post-treatment survivorship and how to support the survivors in your life.
After diagnosis and treatment, a person living with cancer transitions to a phase known as post-treatment survivorship. Unless they return to active treatment, post-treatment survivors will remain in this phase for the rest of their lives, even if they are in complete remission. (For some, “survivorship” begins the day of diagnosis. At CancerCare, we use “post-treatment” to specify what we mean. )
People living with breast cancer, as well as other types of cancer, may also have maintenance treatment plans that they will continue following for years. In these cases, some may still consider this active treatment while others identify as post-treatment.
Some may see the end of treatment as a light at the end of the tunnel—but others may feel anxious about what might happen next. Depending on the treatment type, some individuals may have weekly appointments for months and others may have daily appointments for weeks (and every possible combination in between). Many may feel like they’re a pro at their treatment: they know exactly where to go, who to talk to, what to expect, how long it will take, and more. Disrupting that routine can be scary, especially when it’s not clear what the future holds.
Adjusting to a New Routine
Once treatment ends, it can be jarring to stop regularly seeing the providers and staff members that a person has built relationships with. Post-treatment survivors will speak to members of their treating health care team less often, and those conversations will shift in focus to follow-up care and related issues. Appointments and scans become less frequent too. These changes can sometimes cause post-treatment survivors to feel a sense of abandonment. This is normal: after being in high gear during the active treatment phase, post-treatment monitoring can feel sporadic. For my clients who feel this way, I remind them that having less frequent check-ins is often a good sign. This is a big transition, and it’s okay if adapting to the “new normal” of post-treatment life doesn’t happen overnight.
Out of Sight, Not Out of Mind
A primary concern during survivorship is the fear of recurrence, or the cancer returning. This is a natural source of anxiety. Post-treatment survivors may feel themselves unable to relax or let their guard down, especially if the initial diagnosis was unexpected with no family history. For clients experiencing this kind of worry, it can be helpful to remember that follow-up appointments exist in order to monitor a person’s condition. While it’s not always possible to eliminate the worry entirely, trusting the follow-up care plan designed by the treating health care team can help put the mind at ease.
Does the Cancer Experience Ever “End”?
It is not uncommon for people, especially well-meaning friends and family, to believe that once someone has concluded treatment, the cancer experience is “over.” Unfortunately, this is not true. Post-treatment survivors have experienced major changes through their diagnosis and treatment, and it is only natural that processing these events will take time. People may also feel different physically, mentally and emotionally when all is said and done. Following treatment, those living with cancer may finally have a moment to pause and say, “Wow, I just went through a lot. Let me take a breath and digest it all.”
Though cancer never truly “ends” for a person, transitioning into survivorship can change the way they think of themselves and their cancer experience. Instead of thinking about moving on from cancer, I encourage clients to think about moving forward. For someone deeply affected by a cancer diagnosis—and caregivers are included in this too—that experience will always be part of the patchwork of your life. It’s important to realize that there is no right or wrong way to include it. Some do not want to let go of their cancer experience and find it enriching and helpful to stay connected to the cancer world via social media, peer-to-peer support, advocacy and more. Others may want to distance themselves from that piece of their lives, seeking to close that chapter and find a way forward. Whatever the person chooses, it’s okay as long as it works for them.
Supporting Post-Treatment Survivors
Keep in mind that even once treatment is over, the cancer experience is not. Some survivors may be afraid of their loved ones forgetting, in a sense, about their cancer, and expecting everything to go back to normal. The reality is that “normal” can look very different for someone who has been through a cancer diagnosis and treatment, and the same goes for their caregivers, families and loved ones too. Here are a few tips to better support the post-treatment survivors in your life:
- Be open to their limitations. Proactively invite your loved one to tell you if they are feeling tired or overwhelmed. Depending on how long it has been since treatment ended, stay aware of the fact that they may still be rebuilding their physical strength and endurance. This can be a delicate balance, because survivors may also be working towards increased independence. Do your best to balance any accommodations your loved one might need while also not assuming what they can and cannot do.
- Offer help in a concrete way if you sense them struggling with a particular task. Not everyone is comfortable asking for help, so being specific shows that you sincerely want to pitch in. If you say, “Let me know if you ever need help grocery shopping,” your friend may never call that favor in. Instead, try, “I’d like to drop off groceries for you every other week. Can you remind me if you have any food allergies?” Meals and groceries can also be ordered from afar, if you are not local to the person you want to support. Other ideas involve volunteering to watch their kids for a specific day/time, stopping by to walk the dog every evening, or even taking their garbage cans to and from the curb every week. Scheduling a regular phone call or video call can also be a big boost.
- Ask how they want to talk about their cancer. If it feels appropriate for your relationship with the person, you might consider asking them openly about their needs. “Do you want to talk about your cancer experience or not?” may be a hard question to ask, but for the right person, it can be helpful to give the survivor a feeling of control over how they want to address their cancer and how they want to be treated. They may not even have a specific or direct answer to the question in the moment, but even acknowledging the issue can be useful.
If You Are a Post-Treatment Survivor
For post-treatment survivors who are struggling to adjust, know that you are not alone. It is okay to feel whatever you are feeling—you have experienced a lot, and no one expects you to bounce back to who you were prior to your diagnosis. I hope that you are able to feel some relief after completing treatment, and I also acknowledge that this relief can be accompanied by uncertainty about what comes next. There is no “correct” way to experience survivorship, and there are many providers, mental health professionals, advocates and peers who understand that this does not mean the journey is over.
It may be helpful to connect with a mental health professional, like a CancerCare oncology social worker, or with peers who can relate to your experience. CancerCare offers online support groups open to clients nationwide, as well as live support groups and individual counseling (currently offered via video conferencing) to clients in New York and New Jersey. CancerCare social workers can also refer you to local, regional and national groups or peer support networks.
CancerCare is the leading, national organization providing free programs and services to anyone impacted by cancer, including survivors, caregivers and the bereaved. In addition to our individual and group counseling, CancerCare offers case management, community programs, educational resources and financial and co-payment assistance. Visit cancercare.org to learn more about CancerCare’s free services, or call their toll-free Hopeline at 800-813-HOPE (4673) to speak with an oncology social worker, register for programs and obtain referrals to other local and national resources.