How to Help a Loved One Through NSCLC Treatment
Advanced non-small cell lung cancer (NSCLC) is stubborn. It doesn’t react to chemo, or if it does, it might not for long. There are few things more discouraging than doing battle with NSCLC. If you know someone who has been diagnosed, it isn’t uncommon to feel defeated. This makes it difficult to strike the right balance as cheerleader, realist, and caregiver. Wondering how to put your most supportive foot forward? Learn what healthcare professionals, caregivers, and patients say is the best way to help a loved one living with NSCLC.
Be a Tireless Cheerleader
When a loved one is going through NSCLC treatment, one of the most important messages caregivers can convey is that there’s always another option. “NSCLC is one of the most treatable cancers and new treatments, such as gene therapy and immunotherapy, have enabled many patients to extend their life expectancy,” says Sean Marchese, a registered nurse at The Mesothelioma Center in Orlando, FL, who has led clinical trials in oncology. “When a chemo regimen has stopped working, or a patient loses out on a clinical trial, it’s essential that they don’t give up hope.”
Seek Out Options
There are more options than ever for treating it and there’s every reason to expect that one of them will work. Knowing your loved one’s specific mutation and all the relevant medications and clinical trials available will allow you to help them navigate the medical waters, says Lisa Goldman, a patient advocate who blogs at Every Breath I Take and a NSCLC patient for the past seven years. Because of this, getting a second opinion when treatment fails is important. “Sometimes getting in touch with a new doctor or a new treatment center can open up new therapy options you hadn’t considered before,” Marchese says.
Be Prepared for the Treatment Rollercoaster
Chemotherapy and radiation can affect energy levels in ways that can be hard to predict. That’s why it’s never a good idea to assume that if your loved one is feeling well one day that they can expect to feel well the next day. “As a caregiver, it’s important to be flexible with your expectations around your loved one’s energy levels,” says Paul Greene, Ph.D., a psychologist with fellowship training in psycho-oncology, and director of the Manhattan Center for Cognitive-Behavioral Therapy in New York City.
For Jaclyn Strauss, whose grandmother was diagnosed with NSCLC and passed away in 2015, it was very important for the family to step up and support the family matriarch—in the way she wanted it. “Everyone needs encouragement in their own way, which depends on the type of person you are supporting through the process,” says Strauss, a CPA who lives in Fort Lauderdale, FL. “If you provide support to someone accustomed to being the glue that keeps a family together, you’ll want to assure this person that everything will be taken care of just the way they like it to be done.”
Be Direct About Information Sharing
It’s very important to talk directly to your loved one about how they want information shared about their NSCLC diagnosis. “Ask this person what they want others to know about their medical condition and treatment,” says Iris Waichler, a Chicago-based medical social worker. “This includes asking if there is anyone they want to be contacted and anyone they would prefer not to update on their medical status.” Waichler also suggests using a website like CaringBridge, which fields phone calls, visit requests, and emails from friends, to take the pressure off caregivers (or patients). It sets up one place to provide updates and receive support and good wishes.
Don’t Ask, Do
“Offer to help with practical tasks like groceries, cleaning, driving to appointments, laundry, or tackling insurance bills,” Waichler says. “Offer to attend doctor appointments or treatments to lend moral and physical support.” And don’t forget the extracurricular aspects to the life: “Make opportunities for them to do things they enjoy in ways that are appropriate to their tolerance,” Waichler says. “Maybe sit out in a garden or go for a walk. Watch a movie together, read a book to them, or listen to music.” Whatever their wishes are, she says, try to make them a reality.
Be a Good Listener
Allow your loved one to talk openly about his or her fears, concerns, and frustrations instead of trying to be the person who weighs in on their diagnosis. “Be a good listener,” Waichler says. “Help them discuss and engage in their treatment at a level they are comfortable with. Have that person elaborate their wishes regarding visitors. Give them as much control as they can since this is a diagnosis that has taken so much control away from them.”
Express Hope Wisely
Being hopeful helps NSCLC patients stay strong so they can manage treatment as well as possible, says Gail Saltz, M.D., an associate professor of psychiatry at the New York Presbyterian Hospital Weill-Cornell School of medicine and host of the How Can I Help? podcast on iHeartRadio. Just don’t speak as though they will definitely be cured. “You will lose credibility with your loved one,” Dr. Saltz says. “Instead, speak about hoping that this chemo really does its job, and that your friend tolerates it well. Talk with them about how they feel.” Most importantly, don’t deny their feelings of fear or sadness that they may be struggling with.
Consider Getting Some Extra Help
When treatments produce negative results, it’s an extremely emotional time for the patient and loved ones. If this is happening to your friend or family member, consider bringing in a counselor with expertise in serious illness. “This professional can help discuss these emotionally charged moments,” Waichler says. “There are also online chat groups for cancer patients and family members. These can be a powerful source of support to share these moments with others who are experiencing them, too. It helps all concerned feel less alone, and strong, supportive friendships and relationships can emerge.”
Be Tactical About Research
While NSCLC information is widely available via search engines, you need to be careful as you sift through online data. “Google has been the saving grace for me, but you have to [search] intentionally or intelligently,” Goldman says. “It’s important to sort through the broader lung cancer organizations and direct yourself to reliable smaller groups that represent your loved one’s specific diagnosis.” This is because the general lung cancer sites won’t necessarily cover any genomic presentation that your loved one may have.
Take Care of You
Look, there’s no way around it: Having a loved one with NSCLC is a huge stressor. That’s why it’s important for you to make sure you’re doing the things that help your own emotional health. Keep up with things like exercise, friends, family, and the hobbies that you enjoy most. Consider finding your own support system, maybe with other caregivers of NSCLC patients. Make time for you and the things you find enjoyable. “This will help you be a better caregiver,” says Greene.