Understanding the Cancer Experience When You’re a Caregiver

One of the first steps after being told someone you love has cancer will be learning about their diagnosis. This will help you understand the disease process and get an idea of what lies ahead. Some of the first questions that you and the person with cancer should ask the doctor and/or the cancer care team are:

• What kind of cancer is it?
• Where is it? Has it spread beyond where it started?
• What are the treatment options? Which do you recommend?
• What’s the goal of this treatment?
• How long will treatment last? What will it be like? Where will it be done?
• What side effects should we expect?
• How will treatment affect everyday activities?
• What’s the likely long-term outcome?

When a person has cancer, no one can predict the outcome. While there’s no way for them to know for sure, the cancer care team should be able to give you an idea of how things are likely to go. This will become clearer over time and as they get to know the person with cancer better.

How do we deal with medical delays?

Test result delays

Sometimes it can take a while to get back lab, imaging (x-ray, scan), procedure or biopsy results. This can be even harder to deal with when you’re waiting to get test results to see if it’s cancer or if cancer has come back. It’s scary to find out about a change in blood counts, or a tumor or mass (lump) and not know if it’s cancer.

Waiting for these results can be a frightening time, and people can go through some strong emotions, including disbelief, anxiety, fear, anger, and sadness. It’s important to know that it’s normal for you and the patient to have these feelings. Some people find comfort in talking with other people about what’s going on, while others wish to keep it very private. Try to respect the patient’s wishes during this time.

Treatment delays

Planning cancer treatment takes time. Most people want to start treatment right away. They worry that the extra time taken to do tests or make decisions will take up precious time that could be spent fighting the cancer.

Cancer treatment should start very soon after diagnosis, but for most cancers, it won’t hurt to wait a few weeks to begin treatment. This gives the person with cancer time to talk about all their treatment options with the cancer care team, family, and friends, and then decide what’s best for them.

The patient might also want to get a second opinion on what’s the best treatment. This is often a good idea, especially if the patient can see a doctor experienced in treating their type of cancer. A second opinion can give the person with cancer more information and help them feel more confident about choosing a treatment plan. Learn more in Seeking a Second Opinion.

The patient also might want or need time to prepare to put their normal activities “on hold” while getting treatment. For instance, arrangements for work or child care may be needed, and taking care of these things ahead of time can help the patient better focus on dealing with treatment. Learn more about these topics in Family and Medical Leave Act and Helping Children When a Family Member Has Cancer.

If you or the patient is worried that treatment isn’t starting right away, discuss your concerns with the cancer care team and be sure that any delays will not cause more problems.

How do we deal with the uncertainty?

When a person has cancer, they go through different stages. Your understanding and your care will change over time, too. There will be times when you don’t know what will happen next, and with an illness as serious as cancer, that’s a scary place to be. But there are no guarantees in cancer care. There’s no way to know for sure whether treatment will work. No one can predict the side effects or problems your loved one will have during treatment. And even after successful treatment, there’s still the chance that cancer will come back – there can even be a new, different cancer sometime in the future.

Some ideas that have helped others deal with uncertainty and fear and feel more hopeful are:

• Learn what you can do to keep the person with cancer as healthy as possible, and learn about the services available to you. This can give you a greater sense of control.
• Know that you don’t have control over some aspects of the cancer. It helps to accept this rather than fight it.
• Try to let go of your fears, but don’t deny them. It’s normal for these thoughts to enter your mind, but you don’t have to keep them there. Some people picture them floating away, or being vaporized. Others turn them over to a higher power to handle.
• Express feelings of fear or uncertainty with a trusted friend or counselor. Being open and dealing with emotions helps many people feel less worried. People have found that when they express strong feelings, like fear, they’re better able to let go of these feelings.
• Use your energy to focus on wellness and what you can do now to stay as healthy as you can. Remember to take care of yourself, as well as the person with cancer.
• Find ways to help yourself relax.
• Make time for regular exercise, and be as active as you can.
• Control what you can. Keeping your life as normal as possible and making changes in your lifestyle are just a few of the things you can control.

You play an important role in the health of the person you are caring for, but you cannot control how they are doing physically or mentally. Be careful not to look at your loved one’s progress and good days as proof of your caregiving skills. If you do this, you’ll be more likely to blame yourself when they have bad days and setbacks. Uncertainties and highs and lows are part of dealing with cancer – no one, not even the best caregiver, can control them.

How do we deal with waiting for the diagnosis?

It can take anywhere from a few days to a few weeks to find out if it’s cancer and, if so, what kind of cancer. This is a difficult time for the patient as well as for loved ones who are aware of the possibility of cancer. Some notice that they think of worst-case scenarios and wonder if they’ll lose their loved one. Others may try to go through their days as normally as possible and not think about it. Most people have a mixture of dread and hope as they wait for the test results.

You may want to be there with your loved one when these results are shared. You can help remember questions, offer support, and begin to prepare yourself and others for what’s next.

How do we adjust to the diagnosis?

With time, the patient and loved ones will start to adjust to the cancer diagnosis. This is a time of change and action – everyone is getting used to the unexpected and scary situation that they now find themselves in. Even with all the activity, some people go through their days feeling numb and disengaged. Others may be sad, edgy, or angry. Emotions may change from minute to minute as everyone copes in their own way.

It’s important to get accurate, reliable information in writing to be ready when you or others must ask questions or coordinate care:

• What is the exact name and location of the cancer?
• What’s the stage of the cancer?
• What treatments are recommended? How are they done, and how long do they take?
• Will the patient need to be in the hospital? When and for how long?

After you know the name and stage of the cancer, you can find your cancer type to get more information about or call 1-800-227-2345 to talk with a cancer information specialist.

What do I need to know about treatment?

Cancer treatment varies a lot depending on the type and stage of the cancer. The most common treatments for cancer are surgery, chemotherapy, and/or radiation. Treatment may mean time in the hospital or making many trips to a clinic for radiation or chemotherapy. The patient may be able to go to some treatments on their own. For other treatments, someone may need to drive or go along. The person with cancer may need more than one type of treatment, and each type comes with its own challenges.

You’ll want to be sure that you understand the treatment options chosen by the patient and doctor, since you will probably be helping plan how to make it happen. If you’d like to read more about treatments and their expected side effects contact your American Cancer Society.

Treatment can be long or fairly short, but even short treatments tend to disrupt a person’s life for several weeks. As the caregiver, your life and your family’s lives may be disrupted, too. You may find that you need to take time off from work. See If You Are About to Become a Cancer Caregiver for more on this.

During treatment, you’ll want to learn about general cancer info, treatment effects, and how to manage side effects.

Some questions that you may want to discuss with the cancer team ahead of time are:

• What symptoms do we need to tell you about right away? Which ones can wait?
• How do we reach you after office hours? On weekends? Holidays?
• What can we do to manage side effects?
• How will we know if treatment is working?

Again, you’ll want to write this information down and keep it handy. This can really help if you or someone else runs into problems later.

Are there tools to help the patient be independent during and after treatment?

Assistive devices are tools that can help a person be more independent and make your job a little easier. You may also hear these called adaptive equipment or independent living aids. These tools can be something as simple as a cane, or as complex as a high-tech lift used to move the patient. Some other examples are walkers, wheelchairs, shower chairs, bath mats, grab bars, portable commodes, or urinals. Monitored medical response systems, webcams, and intercom systems are other options that can help some patients feel safer and give the caregiver peace of mind. But even little things like a pill organizer or large wall calendar can make things easier for everyone.

Think about the tasks the person with cancer wants or needs to do and how these devices may make it easier or safer. If you’re not sure, talk to the cancer care team or maybe an occupational therapist about tools that might help at home. These professionals can give you ideas for ways to help the patient. They can also help you find out where to buy or rent the assistive devices you need. And some may be covered by health insurance, too.

What should I know about new medicines?

If the patient gets a prescription for a new medicine, be sure you know the name of the drug, what it’s for, and why they are getting it. Some other things you need to know are:

• How and when should the medicine be taken?
• What’s the dose?
• Should it be taken with food, water?
• Are there side effects? (Like sleepiness, nausea, or dry mouth?)
• How will you know if it’s working? How long before you can expect it to work?
• Will it interfere with any other medicines or supplements the patient is taking?
• Are there foods, vitamins, or medicines that should be avoided while taking this drug?
• What should you do if a dose is forgotten? Take another? Skip it?
• How much does it cost? Will health insurance cover it? Is there a generic substitute?

What if my loved one refuses cancer treatment?

There are people who choose not to get any cancer treatment. This can be very hard for family and friends who may not agree with this choice. But for the most part, people who are able to make decisions for themselves have the right to refuse any and all treatment. 

As someone who cares about and supports the person with cancer, you may wonder why they would make this choice. Maybe the person has health problems that make cancer treatment harder or more risky. Maybe they feel that with their age and life history, it’s just “their time.” Sometimes, the person’s religious beliefs come into play. There are many reasons why people choose to not get cancer treatment. It’s OK to ask your loved one about their reasons for refusing cancer treatment. Even though the answer may be hard to hear, the choice to refuse treatment is the patient’s – no one else’s. Often, the reasons make sense and give you a better idea of what’s going on. It’s also OK to tell the patient what you think. You may say something like, “I hadn’t thought about it that way, and I’m glad you shared your point of view with me.” Or, “I wish you would talk to a doctor about treatment options, but I’ll support your choice and help you through this time the best that I can.”

Even after a person refuses cancer treatment, it’s important to make sure they fully understand their options. You may want to ask the patient to talk with a doctor about the decision and whether any treatments might help. Some patients will agree to talk with a doctor, and others won’t. But don’t be surprised if, after talking with a doctor, the person still refuses treatment. Again, they have the right to make their own choices, just as you have the right to feel the way you do. Try to see it from the point of view of the person with cancer, and continue to offer your support. 

Supportive care can help anyone with cancer – even those who are sure that they don’t want treatment for the cancer itself. Sometimes called palliative care, supportive care helps keep people with cancer from having severe pain, nausea, or other symptoms. It’s care that aims to treat symptoms, not cancer. It helps the person feel as good as possible for as long as possible. 

The person who refuses cancer care may be open to hospice. Hospice workers give palliative or supportive care so that symptoms can be controlled as the cancer runs its course. They also try to help the family and the patient make the most of the time they have left. A patient who is able to make their own decisions may choose to refuse this care, too. This can be hard on the family and loved ones, watching the person suffer while knowing that supportive care could ease the pain and other symptoms. If this happens, loved ones usually do the best they can, but should keep offering hospice and palliative care as an option. This care will be needed even more as the patient’s condition gets worse – the time may come when you cannot manage without help.

What happens when treatment ends?

After treatment most patients go into a stage of healing and recovery. Less time is spent in the clinic and you see the cancer care team less often. Patient stress may go down, but caregiver stress may not. Day-to-day care for and monitoring of the patient becomes the caregiver’s job, and not seeing the cancer care team as often may leave you feeling alone and without back-up or support. The caregiver plays a key role during this time and there can be many responsibilities.

There’s still uncertainty to deal with here. It’s hard to know if or when the cancer may come back even if the doctor says there’s “no evidence of cancer.”

Ask the doctor these kinds of questions, and write down the answers for later:

• What kind of follow-up visits are needed? How often and for how long?
• Are there any symptoms we should let you know about? Who should we call for other problems?
• When will the patient be able to go back to a regular work schedule (if they have been off work or working fewer hours)?
• How will we know if the cancer has come back?

After treatment is over, be sure that the patient has copies of their medical information. Some people collect this information as they go through treatment instead of waiting until the end. Either way, once all of this information is collected, be sure to keep copies for the patient. These records are important in the event that questions come up later, the patient needs to see a different doctor in the future, or if the cancer comes back.

When can the patient go back to their normal activities?

In most cases, the patient can slowly increase their activities at home. How quickly they can do this will depend on their physical condition and the type of cancer treatment they had. Still, with patience and time, most people can get back to their “normal” lives after cancer treatment.

It’s possible that life-saving treatments may have affected the patient in ways that won’t ever go away. For some people, long-term effects mean permanent life changes, so that they can’t go back to the life they had before treatment. It’s normal for the patient and sometimes loved ones to grieve whatever might have been lost due to treatment. Accepting these losses can take time for both the patient and caregiver.

As the caregiver, you may find yourself continuing to do the things you did when the patient was in treatment. But it’s important that, over time, you let the patient go back to doing the things they can and should do on their own. This may take place over a period of months as the patient gets stronger. Check in every week or so to see what you’re doing that the patient can start doing, either alone with a little help. If there are things that the patient can’t quite do, talk with the doctor about a referral to a physical therapist or occupational therapist. These professionals may be able to maximize the patient’s abilities by helping build muscle strength and/or offering assistive devices.

What if treatment doesn’t stop?

Sometimes treatment doesn’t end at the expected time. In some patients, cancer is treated as a chronic illness – a disease that people live with and manage on a day-to-day basis, much like diabetes or heart disease.

This can be a very demanding situation for a caregiver. You’re helping the patient as they get treatment, so there are ongoing side effects and frequent appointments to deal with. The difference is that in this case, you don’t really know how long it will last. Living with this uncertainty can be an extra challenge.

Some patients are able to go back to work during long-term treatment, though they may need extra help just after treatments. They may also need help with home responsibilities, family, and bills. In other cases, less frequent chemo treatments and better management of side effects mean that the caregiver can work a more normal schedule during chronic treatment. In some cases, both the patient and caregiver go back to outside jobs. Still, chemo or other treatments usually mean that some schedule changes will be needed.

Even if everyone goes back to their jobs, someone will still need to keep up with the treatment plan, the medical records, and the bills. This can be demanding for the patient and caregiver. You may both need support with the amount of work that’s needed on top of working and dealing with cancer. And emotional support may be needed to help the patient, caregiver, and other family members cope with knowing that the cancer cannot be cured.

When treatment stops helping – what then?

If treatment is no longer helping and the cancer is still growing, your loved one may decide to stop treatment and choose care to help them live with symptoms. This is a time when it helps to know what’s most important to your loved one. What makes their life worth living? It helps if the patient can put this into words and share it with others that are close to them.

The patient will have to decide things like, “When do I stop trying to beat the cancer and enjoy the rest of my life?” or “Would I rather spend the next 2 months reading to and playing with my grandchildren or dealing with side effects?” Knowing what’s most important to the patient helps the caregiver and family members understand these decisions. Sometimes, caregivers can help patients clarify their highest priorities so that they can focus on them before the chance is lost. Other times, it may take someone on the cancer care team or a mental health professional to help the patient clarify what’s most important to them, and what can be expected from further treatment. This is a difficult time for everyone, and help from the cancer care team may be needed to fully understand the situation and figure out what’s best for the patient.

What do I do if the patient decides to stop cancer treatment?

Once the decision to stop curative treatment (treatment aimed at producing a cure) has been made, make sure that other family members and loved ones understand and can support the patient’s decision. It’s now time for another family meeting, where questions can be answered and concerns addressed. Be sure that other day-to-day caregivers are invited, if they’re still involved in the patient’s care. You may need extra help from others at this point, since there’s often more work for the caregiver to do as the end of life nears.

It’s also time to talk with the doctor about focusing on palliative (comfort) care. Many things can be done to deal with symptoms of cancer, such as pain, trouble breathing, and fatigue. When these symptoms are helped, the patient often has more energy to spend time doing those things that mean the most to them. You’ll want to be in close contact with the doctor to be sure that any new symptoms are quickly addressed. For more information on what to expect at this time, you might want to read Nearing the End of Life.

If the patient is expected to live only a few months, hospice may be a good option. Hospice care is intended to relieve discomfort and make the patient better able to enjoy the time they have. In most cases, hospice is given at home and requires that the patient have a primary caregiver. For more on hospice and how it works, see Hospice Care.

If there are children in the family, it’s important for them to understand what’s going on. For ideas on talking with children and teens, see Helping Children Manage Uncertainty, Loss, and Grief.

As you work with the patient and help make the most of the rest of their life, it’s normal to feel sad and even start to grieve at the thought of losing your loved one. You’ll want to continue with your circle of support and any spiritual outlets you have. A support group or mental health professional may also help as you go through this time. You can find out more in Coping With the Loss of a Loved One.