By Arif Kamal, MD, chief patient officer for the American Cancer Society, as told to Janie McQueen
A cancer diagnosis is a life-changing event, no matter the outcome.
But a diagnosis of inoperable cancer may mean wrestling with less time than you expected. This can bring up issues of hope, strength, legacy, and uncertainty.
You may feel overwhelmed, especially if you’re facing your journey without much support.
One study found that much of the mental struggle with inoperable lung cancer is uncertainty. Without a set plan, or an operation to look forward to, wait times between diagnosis, treatments, and outcomes can lead to a loop of brooding, worrying, and fear that might impact your quality of life.
With inoperable lung cancer, there’s room for hope. There’s reason for that hope, given newer treatments, like targeted therapies. These are being successfully used as an alternative to chemo and its harsh side effects.
The study found that keeping symptoms under control can help you stay mentally well.
Many Sides to Mental Health
Your mental health can be impacted in several ways, from anticipatory grief (grieving about loss before it happens), to adjustment disorder (an unhealthy reaction to a stressful event), to actual major depressive disorder (MDD).
If you’re facing such a diagnosis, it’s important to talk to your clinical team about how you’re coping. Ask for help if you need it: What support do you have? What support do you need?
When you have this diagnosis, you likely have different emotions to juggle. Feeling anxious, angry, sad, and even hopeful can compound your stress. These sometimes conflicting emotions can be hard to explain to your loved ones.
It’s common to feel guilty about things like:
- Not following up on your symptoms sooner
- Being a burden to those around you
- Taking time off from work
These feelings are normal. But feeling hopeless or guilty to excess isn’t. Dwelling on “if only” thoughts can make your mental state worse. If you’re having these, you may need professional help.
If you have cancer, get routinely assessed for your emotional health, coping strategies, and resilience. Most cancer centers can refer you and your caregiver to psychologists, therapists, or palliative care specialists to talk through issues, and sometimes prescribe medications. Sometimes, emotional stress can show up as other symptoms, like poor appetite, uncontrolled pain, or a hard time sleeping.
Despite common perception, palliative care isn’t only for “end of life” situations – when a case is terminal, as with hospice (though palliative care is included in hospice).
You can get palliative care anytime. In fact, starting earlier – in the first weeks after your diagnosis – can improve your outcome.
Other ways to find support include:
- People around you, including your family, friends, and caregivers. Don’t turn down offers to help – many people really want to. Ask for a hand with tasks you don’t like, or that you find physically and/or mentally draining. Use the extra time and energy to heal.
- Reach out to others with cancer. You can meet them in person or online, in support or chat groups. Feeling less alone, and finding out what others are doing, can boost your hope and curb your feelings of loneliness.
Change the Narrative
Even with the resources and benefits of getting help, many people with cancer aren’t willing to reach out. I think that’s because of this “war” narrative we often use with cancer – those with cancer are in a “fight,” they are “warriors,” they are waging a “battle.”
Some find this militaristic language motivating – but many don’t.
The challenge with such language is that it doesn’t allow much room for acknowledging the journey can be tough, with ups and downs, highs and lows. It can make you feel you’re not working hard enough.
The more we normalize the stress, complexity, and uncertainty of the cancer journey, and that it’s sometimes emotionally overwhelming, the more you’ll feel comfortable asking for help.
(Photo Credit: DigitalVision/Getty Images
Arif Kamal MD, associate professor of medicine, Duke University, Durham, NC; chief patient officer, American Cancer Society.
Acta Oncologica: “Receiving a diagnosis of inoperable lung cancer: Patients’ perspectives of how it affects their life situation and quality of life.”
American Cancer Society: “Targeted Drug Therapy for Non-Small Cell Lung Cancer.”
American Society of Clinical Oncology (ASCO): “Lung Cancer – Non-Small Cell: Coping with Treatment,” “Coping With Guilt,” “Getting Started with Palliative Care,” “Self-Image and Cancer.”
Rogel Cancer Center, University of Michigan Health: “The Language of Cancer.”