How to Help Someone with Metastatic Stage IV Cancer
Learning that a loved one has cancer is disorienting. Learning that their cancer is treatable — but not curable — is devastating. Few of us know what to do when we hear of a cancer diagnosis and many of us feel even less equipped to help a friend with metastatic Stage IV cancer.
The uncertainty surrounding your friend’s foreshortened future can cause fear, sadness, helplessness, and even survivor guilt. If you are struggling with any of these feelings, here is some information that can help you navigate this new world.
What is Metastatic Stage IV Cancer
Metastatic cancer is the most advanced stage of cancer. It is cancer that has spread (metastasized) from the first tumor site to another part of the body. This can happen weeks, months or years after a diagnosis. Some people are initially diagnosed with metastatic disease because the cancer wasn’t detected before it spread.
For most metastatic patients, treatment is ongoing and focuses on symptom management as well as preventing further spread of the disease. While the median survival rate for someone with metastatic cancer is 3-5 years, advancements in treatment protocols mean patients can expect to live longer than ever before.
You may feel discouraged with this news, but don’t let it debilitate you. Your friend can still lead a fulfilling life during this time, especially with supportive people like you rallying around them. Now that you have a better understanding of what Stage IV cancer means, you’ll be able to support your friend or family member in a more thoughtful and caring way.
Here are suggestions for how to support someone living with metastatic stage IV cancer:
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1. Choose Your Labels Carefully
Simply put, language matters. The words we use carry a lot of weight and if used improperly, can stir up negative feelings.
Use terms like “survivor” or “warrior” unless the patient does. Your friend will live the rest of their life with this disease and will never “survive” it. And not everyone can relate to “fighting” nomenclature.
Listen carefully to the language your friend uses and mirror it. For Example, Mend Together’s Founder, Lisa Lefebvre, thinks of herself as a ‘cancer endure-er’ versus ‘survivor’. She says, “I don’t feel like I ‘survived’ anything. I simply endured it. I had no choice.”
When in doubt, ask “Is there any language that people use that is hard for you, or that you can or can’t relate to?” This will open up a dialogue, ensuring you won’t accidentally cause additional pain.
2. Acknowledge the Situation
Are you avoiding your friend because you don’t know what to say? The fear and discomfort of not knowing what to do may cause you to retreat, which adds even more pain to a patient’s journey. This is not the time they want to be losing friends or family.
Isolate your friend because you don’t know what to say.
Pretend cancer isn’t ever-present in their life.
Ask “How long do you have to live?” or “What’s your prognosis?”.
Say “It must be hard to be leaving your (children/partner/family) behind.”
“This is hard. I don’t know what to say! But I want you to know I’ll make sure you don’t go through this alone.”
“This diagnosis stinks. I’m in this with you every step of the way.”
Remember, It’s okay to feel awkward. Your friend will appreciate your honesty and would rather hear something from you rather than nothing at all.
3. Don’t Comment on Appearance — Ever
Commenting on appearances can be hurtful for someone living with Stage IV cancer. Many patients report that they look better than they feel during treatments but that doesn’t mean they aren’t struggling. In fact, most patients suffer from the invisible symptom of fatigue.
Say “You look so healthy/good!’”, warns Maggie Kudirka, a Stage IV metastatic breast cancer patient who recently underwent her 90th maintenance treatment.
Maggie advises, “Just ask someone how they are doing or feeling — in general and not about cancer”.
For more ideas on what to say (and not say) to a cancer patient, click here.
4. Focus On Actions versus Intentions
While a positive outlook and desire to live can improve a patient’s quality of life — or even extend it, people cannot “will” their cancer to go away.
Be impatient if your friend has a down day — or several. It takes time to orient to this diagnosis.
Imply that “positive thinking” or “fighting harder” will cure your friend’s cancer or say “you can beat this”.
Be supportive of whatever steps your friend is taking through treatments, nutrition, or activities.
Offer to book or accompany them to wellness appointments such as yoga, nutrition counseling, or physical therapy sessions.
Or offer to set up a Mend Together Registry to help with expenses and moral support.
5. Bear Witness
Did you know simply being there and listening non-judgmentally is one of the most valuable roles you can play? Your friend is going through a range of emotions which many change daily or weekly. They need someone to listen and help them bear their journey.
Judge your friend’s reaction to cancer. You may not approve of something they are doing, but remember they are doing the best that they can right now.
Give unsolicited advice. Most patients don’t want to be told what to do — they need an ear.
Cut your friend off when they are speaking. They may need to tell you the long version of their worries.
Metastatic breast cancer patient and advocate Michael Kovarik’s #1 tip is, “Just be there for someone. Just listen. Truly listen.”
Make space for a friend to talk about their short-term and long-term aworries. Ask, “How are your spirits today?”
Remember that you can’t ‘fix’ someone’s situation, no matter how you frame it.
Another thing to do for someone who is unwell is simply be in their house with them. Even if you aren’t interacting, just having another presence in the home can be immensely comforting.
6. Share Information — But Only on the Patient’s Terms
Organizing information is a great way to help someone with Stage IV cancer. Be sure to ask first and only offer assistance if you are committed to following through.
Don’t give a patient information they didn’t ask for — this includes suggestions of doctors they should see, or things they should do before their situation worsens.
Overload your friend with information
Be mindful — while some people appreciate this kind of help, others don’t.
Make specific versus general offers of help such as:
- Organizing bills and insurance payment information in a folder system for easy access and filing.
- Helping with end of life legal documents like a will, advance directives or letter of instructions.
- Keeping everyone in the loop. Create a Community Journal to keep friends and family updated in one place so they can respond appropriately to positive or negative news. Unlike some social media platforms, this information can be made public or kept private.
- Organizing helpers. Online tools like this Mend Together Volunteer Calendar make it easy to keep track of when help is needed and enable friends and family to volunteer for tasks that fit with their skills and schedule. You can also use our calendar to keep track of treatment schedules and surgeries. This way friends know when to offer words of encouragement. Keeping everyone updated can be a full-time job so many patients especially appreciate the help.
7. Find Joyful Moments
Your friend may have lost interest in things that once brought them pleasure. Perhaps they no longer have the ability to get together with friends. You can help lift their spirits by finding inspiring ways to take their mind off cancer.
“Don’t push us to do something,” Maggie reminds us. “Patients are most likely still in treatment and each day is going to be different with how they are feeling. Understand that they might not be able to do things today that they were once able to do. But they may tomorrow.”
Meet the patient where they are mentally or physically, giving a number of ideas for them to choose from
If your friend is mobile, offer to take them to a sit-down concert, museum (use the museum’s wheelchair if they are fatigued) or park for a picnic
If they are bedridden, they might enjoy listening to new music or or an audiobook together, or working on a jigsaw puzzle
8. Send Something Through the Mail
Remind a friend you are thinking about them through snail mail. This gesture won’t clutter their inbox and alleviates the pressure to reply.
Mail “Get Well Soon!” cards. The pressure to heal can cause unintended pain. Jennifer, diagnosed with metastatic breast cancer at age 33 explains, “I’m going to be sick for the rest of my life.”
Send junk food. Sugar and other empty calorie foods can contribute to inflammation, which accelerates the production of cancer cells.
Send one of these greeting cards from Emily Mcdowel & Friends– they’re our favorites.
Choose a gift box of hard-to-find items selected specifically for people going through cancer.
Radiation Gift Box$165.00
9. Don’t Turn a Stage IV Patient into Your Grief Counselor
You may be emotionally distraught and not coping well with the fact that your friend has terminal cancer. You may have a desire to confide in your friend and tell them how sad and scared you are. This is understandable, but you need to refrain from this behavior. Seek out your other friends for that.
“A lot of the times, the cancer patient finds themselves consoling others and this is an additional burden to bear,” explains metastatic breast cancer thriver, Stephanie Seban. “But first and foremost, they need to take care of themselves at this time.”
Say “I don’t know what I’m going to do without you” or “What are your parents/partner/children going to do?”
Use the “circle of grief” as your guide: A cancer patient is the innermost circle. Moving outward is their spouse, then close family and friends, and so on. If you have concerns, go outward. Never put your anxieties on someone closer to the innermost circle than you.
Book an appointment with a psychologist who specializes in grief counseling.
10. Take Care of the Caregiver
Caregivers experience significant life pressures and need a break. Marion, a full-time caretaker for a metastatic cancer patient admits, “I have been the main caregiver the whole time. At first, we had emotional support from the church and friends and so on, but over time they have just faded off. I have been stressed beyond belief.”
Focus all your attention on the cancer patient. Incorporate their caregiver in your support.
Wait until the caregiver in a patient’s life is burnt out. Many caregivers wish they had gotten help sooner.
Arrange a weekly night off for the caregiver. Organize a friend to sit with the patient while you take their caregiver out for the evening — or vice versa. Rotate visitors and make it a regular event. Be sure to get permission from the patient and caregiver before scheduling guests. Starting a Mend Together Calendar can streamline coordination.
Encourage the caregiver to keep up with eating well and exercising, even it is simply including a salad in meals or going for a daily walk
Bring over a nutritious meal that includes whole grains, vegetables and fruits (think vegetable stir fry or a soup versus a high carb meal like lasagna)
12. Don’t Just Send Flowers
When someone is faced with sad news, we usually send flowers but this can be problematic for some patients. Fresh flowers can be an infection risk for patients with weakened immune systems. Not to mention, the patient can sometimes feel like they are at their own funeral when bombarded with too many floral arrangements.
Rely on flowers as your go-to gift.
Send a healing gift instead.
Metastatic breast cancer patient Sheila McGlown recommends sending practical gifts like, “Lotion, a nice blanket (I love taking my own blanket), pillow, nice comfortable PJ’s, a water bottle, or ginger chews. The treatment centers are cold and lonely sometimes, so even a good book or a journal.”
Mobilize Your Friend’s Community
If you really want to help support a patient with loving gifts and financial help, create a Mend Registry for a patient. It’s like a wedding registry, but for cancer patients. You can help a patient register for products, services and cash funds that provide comfort. Loved ones can choose a gift to send, or simply donate funds to ease financial burdens.
We hope you found these practical tips useful. Thank you for thinking of your friend with metastatic cancer.
Tina Jensen manages Mend Together’s community and curates product selections.
Lisa Lefebvre is the Founder of Mend Together. She has experience recovering from 8 cancer-related surgeries, chemotherapy treatments, radiation protocols and hormone suppression therapy.
Information provided here is not a substitute for medical advice. Please consult your healthcare team for advice tailored to your personal diagnosis and treatment.