What You Need to Know as a Cancer Caregiver

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The treatment timeline

How do I learn about this new world I’ve entered?

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 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?

Call your American Cancer Society for easy-to-understand, reliable information. We have information on specific cancer types and many other related topics. See the “To learn more about caregiving and coping” section for a few suggestions.

What can we expect?

When a person has cancer, no one can predict for sure how it will go. While there’s no way for them to know for sure, your health 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. Just a few possible cancer scenarios are:

  • Diagnosis, active treatment, finish treatment, then survivorship with a normal life
  • Diagnosis, active treatment, finish treatment, then survivorship with possible long-term treatment effects
  • Diagnosis, active treatment, finish treatment, cancer comes back (recurrence), active treatment, survivorship with ongoing treatment and ongoing treatment effects
  • Diagnosis, active treatment, recurrence, survivorship with possible long-term treatment effects, another recurrence, end of life
  • Diagnosis, active treatment, end of life
  • Diagnosis of late-stage cancer, comfort care, end of life

Again, with cancer, anything can change at any time, for better or for worse. While it would be great to know what to expect, there’s no way to predict how anyone will do.

How do we deal with medical delays?

Lab result delays

Sometimes it can take a while to get back lab results. This can be even harder to deal with when you and your loved one are 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.

In most cases, the only way to know for sure if something is cancer is for the doctor to do a biopsy (by-op-see). Part or all of the lump is taken out and looked at under a microscope to see if there are cancer cells in it. If there are problems with blood counts, a bone marrow biopsy sample may be taken. A doctor or nurse will use a needle to take out some of the liquid bone marrow that’s inside bones. It’s checked for cancer cells. The type of biopsy depends on the size and location of the lump or the area that has changed.

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 health 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. Some insurance companies even require a second opinion before they will agree to pay for certain treatments. And almost all will pay for a second opinion. Still, it’s a good idea to check the patient’s health insurance coverage first.

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. (See our documents called Family and Medical Leave Act and Helping Children When a Family Member Has Cancer: Dealing With Diagnosis for more information on some of these topics.)

Different types of cancer grow at different rates. Certain types of leukemias and lymphomas tend to grow faster than solid tumors, and might need to be treated right away. But most cancers do not grow very quickly, so there’s usually plenty of time to get information about the cancer, see specialists, and make decisions about which treatment option is best. Keep in mind that the information gathered during this time is key to planning the best treatment. 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.

It can be hard to deal with this constant state of “not knowing” – for you and the person with cancer. Here are some ideas that have helped others deal with uncertainty and fear and feel more hopeful:

  • 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. And don’t forget to keep yourself as healthy as possible, too.
  • Know that you do not 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. However you do it, letting them go can free you from wasting time and energy on needless worry.
  • 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 are better able to let go of these feelings. Thinking and talking about your feelings can be hard. And while it’s important not to let cancer rule your life, it may be hard to do. If you find that you’re thinking about nothing besides the cancer, it may be helpful to find a way to express your 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. Some people say that putting their lives back in order makes them feel less fearful. Keeping your life as normal as possible and making changes in your lifestyle are just a few of the things you can control. Even setting a daily schedule can give you more power. And while no one can control every thought, some say they’ve resolved not to dwell on the fearful ones.

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 set-backs. 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. Things may not feel settled for a long time, but there are appointments to keep, things to discuss, and plans to make.

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 get more information about it by calling 1-800-227-2345 and talking with a cancer specialist who can help you. You can also get information online at www.cancer.org. You and others who care about the patient can learn more about recommended treatments there, too. As information is collected and shared, decisions are made, schedules are rearranged, and treatment is started.

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 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, see our documents called A Guide to Cancer Surgery, A Guide to Chemotherapy, and Understanding Radiation Therapy: A Guide for Patients and Families.

The patient may be able to go to some treatments on their own. For other treatments, someone may need to drive the patient or go along. In some cases, the person will get medicines that make them sleepy, or cause symptoms that will require help from others.

If the person gets chemotherapy, there may be nausea, extreme tiredness, easy bleeding, and infections to worry about. Depending on the treatment, there may be many other side effects, too. There’s information on dealing with different types of treatments, symptoms and side effects in Caring for the Cancer Patient at Home, which you can read online at www.cancer.org, or you can call us for a copy.

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 the section called “Job, insurance, and money concerns” 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.

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.” For more on this, see our document Living With Uncertainty: The Fear of Cancer Recurrence.

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 he or she has 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 that includes:

  • Their diagnosis, including pathology reports from all biopsies and surgeries
  • Treatments used (including all medicines with name and dose)
  • Summary of surgery (if done)
  • Radiation treatment and dose records (if done)
  • Discharge reports from any hospital stays
  • Records of any major problems during treatment

The patient may need to go to different places to get these records. For instance, the hospital medical records department will usually have hospital discharge and surgical reports. If radiation or chemo was done on an outpatient basis, the doctor who coordinated the treatment can explain how to get the reports. You or the patient might need to ask the surgeon where to get copies of pathology reports.

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.

What do we need to know about going back to work or normal activity?

As curative treatment (treatment aimed at producing a cure) winds down and the doctor checks the patient for any remaining signs of cancer, the patient may be given the “all clear” to go back to work. Or it may be that your loved one needs to slowly increase their work duties – this will depend on their physical condition and the type of job they have.

You may need to help get the letters from the doctor that will be needed to clear the patient for full work duties when the time comes. And even when your loved one starts working a more normal schedule, there may be days of extreme tiredness in which your help will still be needed. It may take some time to get past this phase, and you may still need your circle of helpers so that you, too, can start getting back to a more normal schedule. If tiredness (or any other problem) continues, a visit to the doctor might be needed to see if there’s a new problem or if anything more needs to be done to help. This may be a time when the Americans with Disabilities Act can be helpful to some patients. If the patient can still do the essential part of their job, it can be used to negotiate for special equipment or a different work schedule. For more information, see our document called Americans With Disabilities Act.

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 the cancer comes back?

Sometimes there’s no evidence of cancer when treatment is done, but the cancer still comes back. In this case, it helps to find out whether there is hope for a cure, what kind of treatment the doctor recommends, and what the goals of this treatment are.

It may be that the cancer cannot be cured, but treatment may prolong life. If this is the case, the patient may want to know the pros and cons of getting more treatment versus not getting treatment. For instance, if treatment can stop the cancer and is likely to prolong survival for several years, it may be worthwhile even if there will be serious side effects every few weeks. On the other hand, if treatment is expected to prolong life for 4 to 6 months and cause troublesome side effects, the patient might choose palliative (comfort) care only rather than active treatment.

Talk over the expected effects and outcomes of getting treatment versus not getting treatment to be sure you and the patient understand. Be sure you know what’s being asked of you as a caregiver if further treatment is given. (For more information on cancer recurrence, you can read our document called When Cancer Comes Back: Cancer Recurrence.)

What if treatment keeps going and 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. To learn more about what this might be like, please see our document called When Cancer Doesn’t Go Away.

The patient may decide to get treatment as long as it slows down or stops cancer growth, even if a cure is no longer possible. Side effects may still cause problems in certain activities. Care is more complex, and more and more often treatments are managed on an outpatient basis or even given at home. This means more responsibilities for the caregiver. And as time goes on, the people you have counted on to help you may need to cut back on the time they spend with your loved one. Some may still be able to offer time or help with limited activities.

This can be a very demanding situation for a caregiver. You are helping the patient as he or she gets 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 (chronic) 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 him or her live with symptoms. This is a time when it helps to know what’s most important to your loved one. What makes his or her life worth living? It helps if the patient can put this into words and share it with others that are close to him or her.

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 treatment 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 medical 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 are 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 our document called 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. Having hospice staff on call 24/7 can make it easier for you to know whom to call when the patient has a new problem or a symptom that’s not relieved. Hospice also provides emotional and spiritual support for the family and caregiver. You may wish to talk with the hospice nurse or chaplain about coming to a family meeting to talk about the new goals of care and how the hospice staff will work with you. It’s helpful if the patient is able to attend. For more on hospice and how it works, see our document called Hospice Care.

The physical care of the patient may become more complex and take up more time. Again, other family members will need to understand the situation and the patient’s wishes.

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 our document called Helping Children With Cancer in the Family: Dealing With Terminal Illness.

As you work with the patient and help make the most of the rest of his or her life, it’s normal to feel sad and even start to grieve at the thought of losing your loved one. You will 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 our document called Coping With the Loss of a Loved One.

Last Medical Review: 03/05/2014
Last Revised: 04/28/2014