Updated November 19th, 2023

The First Steps to Take as a Caregiver When a Loved One is Diagnosed With Cancer

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Understanding Your Role as a Caregiver

Cancer caregivers can be a spouse, family member, trusted friend, or even a close neighbor. When you’re helping someone as they go through cancer treatment, you have an incredibly important and multi-faceted job.
Cancer caregivers should act as a patient’s second set of ears. If you are able, attend appointments with the patient and take notes on treatment options and processes.
It’s important to help the patient keep track of symptoms, any new reactions to treatment, and concerns they may need to speak to their doctors about.
Caregivers can help patients get in contact with a social worker or patient navigator, who will be able to help with important parts of the treatment process — from arranging transportation to communicating with insurance companies.

Assuming the role of a caregiver when someone you love is diagnosed with cancer comes with a unique set of responsibilities. It can feel overwhelming, particularly right after the diagnosis, as you scramble to find the best ways to support this person. Through interviews with expert oncologists, social workers, patients advocates, and more, we’ve come up with a checklist of helpful actions caregivers can take right after a loved one is diagnosed.

When you’re a caregiver, it’s important to ensure you’re taking care of yourself, too — so learning to manage your new responsibilities in a way that doesn’t feel overwhelming is key. And if you need help with finances, we provide resources you can consider to get assistance with the cancer bills.

Attend Doctor Visits

“I encourage caregivers to come in to visit with my patients because, in that way, the caregiver is also listening to the recommendations,” Dr. Jayanthi Lea, gynecologic oncologist at UT Southwestern Medical Center, told SurvivorNet.

Throughout the treatment process, there are going to be many occasions where the patient is getting a lot of information at once. As a caregiver, it could be a huge help to attend as many doctor visits as you can so that you can help take notes on treatment options, protocols, lifestyle changes that might be needed, and more.

Dr. Jayanthi Lea explains steps caregivers can take after a loved one’s cancer diagnosis.

Dr. Lea suggests caregivers keep track of questions patients may need answered during visits as well.

“What should be done in between these visits? Any changes in treatment plans? Any toxicities that we need to look out for? Changes in dietary habits, exercise, etc,” she said.

Connect With a Social Worker/Patient Navigator

The cancer center where the patient is getting treatment may be able to link them up with a social worker or patient navigator. These workers can help with many aspects of the cancer journey — from arranging transportation to doctor appointments to assisting with insurance claims.

“Patient navigators can function differently at different hospitals,” Dr. Kathie-Ann Joseph, a surgical oncologist at NYU Langone Health’s Perlmutter Cancer Center, told SurvivorNet. “We have a really wonderful program at [NYU] where we use lay navigators, meaning they’re not nurses — although you can use nurses or social workers, that pretty much help newly diagnosed cancer patients through the continuum of care.”

Dr. Kathie-Ann Joseph explains how patient navigators can help throughout the treatment process.

These navigators can meet with patients from their very first appointment, and can also:

Attend future appointments
Provide an assessment for next steps of care
Assist with housing, transportation, or immigration issues
Help with financial issues
Provide direction on legal issues

Help Keep Track of Symptoms

When you’re caring for someone going through cancer treatment, you may be able to keep track of their symptoms even better than they can. Establishing open and honest communication about their treatment is important — whether you are caring for a spouse, parent, child, or a friend. Let them know that you’re there to help and they can (and should!) tell you about any new symptoms.

“I really appreciate the caregivers who are on top of the medications that the patients are taking,” Dr Lea said. “If they are having difficulty taking all the medications, if they are having difficulty keeping on time with the medications that they’re supposed to take.

“I also appreciate the fact when they are able to tell me, well, they are struggling between day three and day five of their chemotherapy. They are having constipation symptoms and signs that the patient herself might not be telling the physician. If the caregivers are able to give us the additional information that enables us to get a full history and then take care of these issues for the patient,” she added.

Let Your Loved One Speak for Themselves

As a caregiver, your job is to help in a multitude of ways as this person in your life navigates a difficult disease. Cancer caregivers can help keep track of symptoms and navigate finances and even emotions — but they should also let the person they are caring for speak up about what they truly need throughout the process.

“Some of the best examples that I have seen in caregivers are those spouses or loved ones who really, almost sit back and they allow the patient or they want the patient to express what the patient feels first, rather than barging in,” Dr. Lea said. “…Step back a little bit and let the patient speak for themselves. Let them express what they are feeling. That is so important for the patient’s overall quality of life and well-being.”

In a previous conversation with SurvivorNet, breast cancer survivor Melissa Berry said that for her, it was really important that her family be patient as she navigated cancer treatment. She experienced intense emotions and explained that, at times, she just needed space as a patient.

Breast cancer survivor Melissa Berry discusses how people going through cancer treatment sometimes need space from loved ones.

“Cancer can be a huge strain on the entire family, and can definitely be a strain on relationships. And I think, in some ways, it can bring people together. It can make you much stronger or it could weaken a relationship,” she explained.

“I experienced incredible mood swings and I, at times, felt like I didn’t even recognize myself. I think that it’s important for the people that are close to the patient to understand that you’re going to be going through some really rough stuff, not just physically, but emotionally.”

Help Out With the Little Things

There are big things you’ll have to help with as a cancer caregiver. Maybe you’ll have to pick this person up from each appointment, or even sit by their side through the treatment process. Perhaps you’ll need to assist them as they recover from surgery.

But the little things make a big difference, too, and many cancer survivors tell us it was those little things they appreciated the most as they recovered from treatment.

This could mean making dinner for the person for a few weeks, adjusting recipes to meet new dietary needs due to treatment, taking care of daily chores like doing laundry, or just scheduling a relaxing movie night to restore some sense of normalcy back into their life. Small things that make someone’s life just a bit easier can make a huge difference.

And if you’re looking to get your loved a special gift to brighten their day, we have a gift guide to help you find the perfect item.

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