In some cases, despite a cancer care team’s best effort, cancer comes back after treatment. This is known as a relapse or recurrence. The news can have a similar emotional impact to a patient’s initial diagnosis; patients may experience shock or feel overwhelmed.
Everyone’s experience is different, and the most important thing you can do is to be open and honest with yourself, says Carrie Wechsler, MSW, LICSW, a clinical social worker at Dana-Farber Cancer Institute. Here are her tips on how to help cope with the news of a cancer recurrence.
Before you can move forward with a plan, it’s important to be comfortable and trusting of your medical team. One way to do this is by discussing any questions or concerns you may have with your oncologist.
Make sure to write your questions down and try to be as specific as possible. It may help to have someone accompany you to appointments; they can provide emotional support, take notes, and remind you of anything you might have forgotten.
Examples of questions you may want to ask include:
- Where is the recurrence?
- Can you help me understand why my cancer recurred?
- What are my treatment options?
- What are the risks and the benefits of treatment?
- What are the goals of treatment?
- What are the known side effects?
This is also a good time to understand any factors—including your age, overall health, and the cancer’s location—that may impact your response to further treatment.
Don’t be afraid to tell your team if your relapse has impacted your sense of trust in yourself or the team’s prior treatment plan, even if this is a challenging conversation, Wechsler says. If you’re not sure what to say, try something simple and straightforward such as, “The cancer returning has shaken my trust. Can we talk about that?”
Don’t be afraid to seek a second opinion. If you still have questions after speaking with your oncologist, it’s OK to voice them. Your care team will always want you to feel comfortable and confident and may even be able to help coordinate a second opinion.
Embrace your empowerment
During this process, it’s important to remember that you’ve already been through a diagnosis and treatment, and you should use this information to your advantage. Having gone through this before, you largely know what works for you and what doesn’t, and it’s important for you to voice that.
If there are treatments you do not want to repeat, make sure to tell your doctor so they can work to adapt your plan. In addition, this may be a good time to ask your team if you would benefit from a palliative care consultation. Palliative care physicians are experts in pain and side effect/symptom management, and they can be helpful to you and your team through all stages of illness. During these conversations, it’s essential to be both honest and flexible so you can come up with a plan that everyone is comfortable with.
It’s also important to have a support network during this difficult time. If this is an area of concern, make sure to connect with a social worker, a psychiatrist, or perhaps a support group.
Finally, remember that it is your decision as to your next steps and whether you want to continue treatment. This is a time to reassess your goals and to see how well your treatment plan matches them. Again, having an open and honest conversation is essential to making a decision that is right for you.
Oftentimes, news of a relapse can bring about anxiety and stress; finding a way to cope with these feelings is important. If you found ways that helped you the first time around, make sure to continue or resume that activity. If you’re looking for new ideas, you can try:
- Exercise (look for an activity you find enjoyable)
- Consulting a nutritionist: making changes to your diet can help you feel better and improve your mood.
- Journal writing
- Spiritual support
- Arts/creative expression
- Support group
As a caregiver, you are affected by this also, and a lot of the same principles apply. It’s important to have your own support too. It is essential to take some time for yourself and having a team around you can help.
Try to delegate responsibilities. If you’re feeling overwhelmed or need to take a step back, it is very helpful to talk with someone about this. It’s difficult to give someone else the support and time they may need if you aren’t also taking care of yourself.
Everyone is different, and what works for one person may not be universal. Nobody knows what matters most to you or what you can handle quite like you, so try to play an active and vocal role in your care. Think back to your initial treatment and what was most helpful and see if this can be applied now.
That being said, you should also be prepared to face new challenges and emotions. Returning to the hospital may be hard. This is natural, and it’s another reason why it’s important to think about what you find helpful and, when possible, to have some good supports in place.
Furthermore, have a plan of how to discuss your recurrence with your care team. If you have younger children, the information you provide may change as they get older and begin to understand things in a different way.
As a patient, you need to choose your own path. Having meaningful, open, factfinding conversations will help you have the information and support to take control of the next steps in managing the challenges of cancer recurrence.