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The Guide to Cancer Caregiving

Introduction

Learning that a friend or family member has been diagnosed with cancer can be overwhelming for anyone. It's a scary time filled with immense dread and uncertainty. If you find yourself in the position of your loved one's caregiver, this can add additional stress.

Caregivers help the patient make decisions, encourage and support them through treatment, and assist with day-to-day self-care. You may not feel qualified for this role, and you likely have a lot of questions.

This guide walks you through what a cancer diagnosis means, what you might expect during your time as a caregiver, and tips to remember as you go into this experience.  

The Guide to Cancer Caregiving

Understanding Cancer

Understanding your loved one's diagnosis can help ease some of the stress and fear you may be feeling.

Typically, our body grows and divides its cells in a regulated, orderly way. A cell dies when it becomes old or damaged, and healthy cells divide to create a new cell to take the old one's place. With cancer, this process becomes uncontrolled. Cells divide when they don't need to and continuously create new, unnecessary cells that crowd the affected part of the body.

Cells growing out of control can often form solid lumps of tissue called tumors. Tumors caused by cancer are malignant tumors and are at risk of continuing to grow and spread throughout the body. However, some cancers such as leukemia form in the blood and don't form tumors. Tumors can occur without the presence of cancer, and those tumors are referred to as benign.

Cancer can occur anywhere in the body, such as the lungs or colon, and can grow and spread at different rates. The type of cancer and the rate of growth typically play a role in determining the best line of treatment for the patient. The stage of cancer will also be a factor in this decision. 

Comparing Normal Cells vs Cancerous Cells

Cancer Staging

During diagnosis, doctors will determine the stage of the person's cancer depending on the primary location and size of cancer and whether the cancer has spread. They may also take cell types and levels of cell abnormality into account. This staging helps them to decide the treatment that is best, as different stages of cancer respond better to different treatments.

The most common staging system is the TNM system. With this system, doctors assign a level to cancer's tumor, nodes, and metastases.

TumorNodesMetastases
(T)(N)(M)
The size of the primary tumor and how deeply it has grown into the part of the body it began in.

May be assigned as T1, T2, T3, T4, TX (cannot be measured), T0 (cannot be found), or Tis (cells are not growing into deeper tissue; sometimes known as pre-cancer). The higher the number, the more advanced the tumor has become. 
The amount the cancer has spread into surrounding lymph nodes.

May be assigned as N1, N2, N3, NX (lymph nodes cannot be evaluated), or N0 (cancer has not spread to lymph nodes). The higher the number, the more the cancer has spread into surrounding lymph nodes. 
Whether the cancer has metastasized, or spread, to other areas of the body distant from the primary affected organ.

May be assigned as M0 (cancer has not metastasized) or M1 (cancer has metastasized).

The doctor will combine the assigned T, N, and M levels to determine an overall stage. The stage will typically be between stages 0 to IV, with stage IV being the most advanced cancer.

  • Stage 0: Abnormal cells are found. This is not cancer, but cancer could develop.
  • Stage I: The primary tumor is small and has not spread to nearby lymph nodes.
  • Stage II-III: The primary tumor is larger or has grown deeper into the tissue and may or may not have spread to nearby lymph nodes. The larger the number, the more advanced the tumor has grown/spread.
  • Stage IV: The cancer has spread to other areas of the body distant from the primary affected organ (metastasized). This is the most advanced stage. 
The Stages of Cancer. Stage 0: Abnormal cells are found. This is not cancer, but cancer could develop. Stage I: The primary tumor is small and has not spread to nearby lymph nodes. Stage II-III: The primary tumor is larger or has grown deeper into the tissue and may or may not have spread to nearby lymph nodes. The larger the number, the more advanced the tumor has grown/spread. Stage IV: The cancer has spread to other areas of the body distant from the primary affected organ (metastasized). This is the most advanced stage.

Once a stage is determined, it does not change. Cancer is always referred to by the stage and type it was when it was diagnosed, regardless if it shrinks, grows, or spreads to other parts of the body.

Depending on the type of cancer, additional factors may play into the TNM staging system, or a different system may be used. It's always best to talk to your loved one's doctor about any specific questions you may have.    

What to Expect

Coping with Diagnosis

A cancer diagnosis can be challenging to come to terms with, and your loved one may react to it in different ways to deal with their feelings. It can be hard to know how to support someone with cancer, but the most important thing is that you be there for them during this time.

If they feel angry and frustrated, they may become irritable and take it out on you or other friends and family. Try to be patient with them and offer them a safe place to vent their frustration openly. Being able to express those specific feelings and thoughts may help reduce irritability in unrelated situations.

Checklist for helping your loved one cope with a cancer diagnosis

If they feel helpless and scared, they may become withdrawn or seem perpetually anxious. They may also become more passive and look to others to make decisions for them. While you should listen to and validate these feelings, it's essential to try to keep the patient living as normally as possible. Encourage them to make decisions, however small, and to partake in activities they enjoy if they can.

They may also blame themselves for the diagnosis and feel like they did something to cause it or deserve it. This isn't true, of course, and having this mindset isn't productive for anyone. Encourage the patient and anyone else who may be playing the "blame game" not to blame themselves and instead focus on what can be done right now.

You may be feeling these same feelings, and that's okay. It can be upsetting and traumatic to watch someone you love and care for go through this. Be sure to acknowledge your own feelings and have your own support system in place during this time, whether that be friends, family, a therapist, or a support group.

Treatment Types

There are a range of different treatments a cancer patient can undergo depending on the type and extent of the cancer. Each treatment method works differently and has its own set of risks and side effects you should be aware of as a caregiver.

Comparing Cancer Treatments

Surgery

Surgical procedures that treat cancer involve a surgeon removing the cancer from the body while the patient is under anesthesia. Typically, the surgeon will cut into the body during surgery, but there are different types of surgery that involve minor cuts or no cutting at all. The type of surgical procedure used depends on the type of cancer being treated and, sometimes, the patient's preference.

Surgery is used to treat many different cancers. It can be used to remove entire tumors or part of a tumor to help other treatments work better. Leukemia and cancers that have spread are usually not treated with surgery.

A nurse will likely talk to you and the patient about how to prepare for the surgery and how the patient should take care of themselves or be taken care of once they are discharged following the surgery. They will walk you through how to manage any pain and care for the wound and any physical activity the patient should or should not do. Depending on the surgery, there may also be special dietary needs or restrictions before and after the procedure.

Possible Risks:

  • Pain
  • Infection
  • Bleeding
  • Tissue damage
  • Reaction to anesthesia

Radiation Therapy

Radiation therapy kills or slows the growth of cancer cells using high amounts of radiation. The radiation damages the DNA of the cancer cells, and those cells with damaged DNA either die or stop dividing. This makes it easier for the cells to be removed through other treatments or for the body to remove them.

There are two types of radiation therapy: external beam and internal. External beam radiation therapy treats the affected area of the body using a machine that directs radiation at the cancer. Internal radiation therapy involves a solid or liquid source of radiation being inserted into the body to treat the cancer.

Radiation therapy takes multiple treatments over time to properly damage the cells. It can eliminate cancer on its own, but it is most often used to increase the chances of other treatments working. For example, radiation can shrink the size of the cancer to make it easier to remove in surgery entirely.

Possible Side Effects:  

  • Fatigue
  • Hair loss
  • Nausea and vomiting
  • Diarrhea

There may also be other side effects depending on the area of the body being treated.

Radiation therapy can cause nausea and other side effects that might affect appetite. This makes it vital to make sure the patient is getting enough calories and protein while undergoing this treatment. The body uses a lot of energy to heal from radiation therapy, so food is essential.  

Chemotherapy

Chemotherapy treats cancer using drugs that stop or slow the growth of the cancer cells. Similarly to radiation, chemotherapy can kill the cancer cells entirely, and it may be the only treatment the patient receives. However, most often, it is used in conjunction with other treatments. 

This treatment can be administered in a variety of ways, including orally with a pill or liquid, topically with a cream rubbed onto the skin, or injected into a vein or other areas of the body. Most often, it is injected into a vein in the hand or arm using a thin needle.

The patient will sometimes receive chemotherapy in cycles, with a period of rest to allow their body to recover. The number of treatment sessions received and the amount of time this treatment will occur varies. These factors are dependent on the type of cancer and the purpose of the procedure, whether it's to eliminate the cancer entirely or make another kind of treatment easier.

Regardless, always be sure that the patient is going to their chemotherapy appointments. Have open communication with the doctor about any side effects, as they may change the chemotherapy schedule accordingly. 

Possible side effects:

  • Fatigue
  • Mouth sores
  • Nausea
  • Hair loss

The type and extent of the side effects largely depend on the type and dosage of the chemotherapy and type of cancer. 

Immunotherapy

Immunotherapy boosts the body's immune system to help it better fight against cancer. Though it can be used to treat many types of cancer, it is not as widely used as surgery, radiation, and chemotherapy.

There are many different types of immunotherapy, including immune checkpoint inhibitors, t-cell transfers, monoclonal antibodies, treatment vaccines, and immune system modulators. Additionally, it can be administered in different ways, such as orally, topically, or inserted directly into the veins or bladder. Similarly to chemotherapy, immunotherapy occurs over some time and often in cycles of treatment and rest.

Possible side effects: 

  • Fatigue
  • Nausea
  • Headaches
  • Flu-like symptoms
  • Diarrhea
  • Heart palpitations
  • Risk of infection
  • Swelling or weight gain

Targeted Therapy

Targeted therapy targets and interferes with proteins that help cancer cells grow, divide and spread. This can mark these proteins to help the body's immune system fight off cancer, stop the cancer cells from growing, or kill the cancer cells off entirely. It works best when used with other treatments, such as radiation or chemotherapy, as cancer can become immune to targeted therapy.

The treatment can be done in two ways: small-molecule drugs or monoclonal antibodies. Small-molecule drugs target proteins that are inside cells. At the same time, monoclonal antibodies are created in a lab and designed to attach themselves to proteins on cancer cells.

This treatment method can be used for many types of cancer. Still, the patient's tumor will have to be tested for target proteins to determine if targeted therapy is an option for them. Targeted therapy usually occurs over some time, the length and frequency of the treatment varying depending on the type and extent of the cancer.

Possible side effects:  

  • Diarrhea
  • Liver problems
  • Issues with blood clotting
  • High blood pressure
  • Fatigue
  • Mouth sores
  • Nail changes
  • Loss of hair color
  • Skin problems

Hormone Therapy

Hormone therapy is used to treat types of cancer that use hormones to grow, such as breast and prostate cancers. This therapy is done by keeping the body from producing hormones or interfering with how hormones act inside the body. This effect on the hormones can stop or slow the growth of cancer cells or help ease some symptoms.

This treatment can be given orally with a pill, by injection in a muscle, or through surgery by removing organs that produce hormones such as ovaries or testicles.

While hormone therapy can sometimes eliminate cancer on its own, it's often used with other treatments. For example, it can help make the cancer smaller for radiation, chemotherapy, or surgery. According to the National Cancer Institute, it can also lower the risk of the cancer returning following other treatments.

Possible side effects in women:

  • Nausea
  • Mood changes
  • Fatigue
  • Changes in periods

Possible side effects in men:

  • Nausea
  • Diarrhea
  • Fatigue
  • Weakened bones

Other side effects may occur, and the way hormonal therapy affects the patient depends on the type of hormone treatment and cancer.

Stem Cell or Bone Marrow Transplant

Stem cells create red blood cells, white blood cells, and platelets that the body needs enough of to stay alive and work properly. They can often be destroyed by cancer itself or by treatments such as radiation, chemotherapy, and stem cell transplants. Stem cell transplants replace stem cells so the body can recover and continue to function and create new blood cells.

This procedure may also be called a bone marrow transplant, as most stem cells are found in the bone marrow. However, stem cells used in these transplants may also come from the bloodstream or an umbilical cord.

The stem cells for this treatment can come from the patient or a donor. When coming from a donor, the stem cells can also sometimes help kill off any remaining cancer cells following other treatments. This is called "graft-versus-cancer" or "graft-versus-tumor," the graft being the healthy donor cells.

Most often, this treatment is used in conjunction with other treatments to help those with leukemia, lymphoma, neuroblastoma, or multiple myeloma. It can take months to complete, as the patient usually first receives high doses of radiation of chemotherapy before getting the transplant through an IV catheter. Then, it takes time for the cells to start making new blood cells and for the immune system to recover.

Possible side effects:  

  • Nausea
  • Mouth and throat pain
  • Infection
  • Lung problems
  • Graft-versus-host disease (donor cells attack the body)
  • Graft failure

Communication skills are important as a caregiver. Not only will you have to communicate with the person receiving care if they are capable of writing or speaking, but you will also be expected to communicate regularly with their family members and medical professionals. 

Five Tips for Caregivers of Cancer Patients

Five tips for caregivers of cancer patients

Learn more about the specifics of your loved one's cancer.

Cancer is a complex disease, and there are so many different types, variations in staging, treatment methods, and side effects. We couldn't possibly fit them all in this general guide.

Be sure to talk to the doctor about and look into the specifics of your loved one's diagnosis and treatment plan so that you can be knowledgeable and aware. This is important not only so you know what to expect, but also so that you can make the best choices should you have to make health decisions for the patient.

Some great places to start when researching are the American Cancer Society and the National Cancer Institute.  

Keep the patient involved.

As noted earlier, your loved one may become withdrawn or passive in response to their cancer diagnosis. Try to keep them as involved as possible, both in their treatment and in day-to-day life and self-care.

Let them make their own treatment decisions if they can think clearly. You may not agree with every decision they make, but so long as it doesn't pose a safety risk, it is up to them. If you have to make treatment decisions yourself, be sure to take the patient's values into account.

In terms of self-care, talk to the cancer care team to determine what the patient can and cannot safely do. Then, encourage your loved one to do as much as their own self-care, such as bathing and getting dressed, as possible. If they are unable to take care of themselves safely, continue to involve them in self-care decisions. This can include choosing between two different shirts to wear for the day or two different meal options.

Help the patient live as normally as possible.

Regularly talk to your loved one about things that they enjoy so that they aren't constantly focused on their illness. It's also important to encourage them to continue to partake in activities they enjoy, such as hobbies or mild exercise. Depending on the extent of their illness and intensity of the treatment, they may even be able to continue to work if they'd like to.

However, you should always take your loved one's feelings into account. They may have bad days. They'll experience depression or anxiety in response to their diagnosis or experience side effects from treatment that hinder their ability to live a "normal" life. Encourage them when possible, but also try to be understanding and patient with them.  

Communicate Clearly

A cancer diagnosis can be hard on both the patient and the caregiver; the two of you need to communicate and be open from the start. Showing respect for each other from the beginning will make it easier to deal with disagreements and conflict in the future.

Acknowledge and respect your loved one's feelings and needs while also staying true to yourself and respecting your own. Try to encourage them to share their worries and fears. Let them know you're there for them and that you want to help them, but be open about how you're feeling too. You can get through this as a team.

Should a conflict arise, make an effort not to be accusatory and to use "I" rather than "you" statements. For instance, "I feel like I'm not being heard" rather than "You never listen to me." Always try to focus on what can be done to resolve the conflict rather than dwelling on the conflict itself.  

Take Care of Yourself, Too.

It's all too common for caregivers to become overwhelmed and burnt out. Your feelings and health matter also, and you don't have to do this all on your own. If someone offers to help, accept it, and learn to ask for help when you need it. Know this is a learning process, and it's okay to make mistakes.

Take breaks and do things you enjoy when you can. Try to continue partaking in a hobby you enjoy or make time to socialize with friends. It can also be helpful to exercise regularly and try to maintain a healthy diet. Remember, you still have your own needs, too.

For more information on caregiving and taking care of yourself as a caregiver, check out our Ultimate Guide to Caregiving. 

The 2020 Ultimate Guide to Caregiving

 For more information on caregiving and taking care of yourself as a caregiver, check out our Ultimate Guide to Caregiving. 

Read the Guide

About the Author

Stephanie Schwarten is a freelance writer and editor with a Bachelors degree in Professional Writing. She specializes in content marketing as well as both developmental and copy editing. 

About Carex Health Brands

Carex is your one-stop shop for home medical equipment and for products that assist caregivers with providing the best possible support and care for their loved ones. Carex Health Brands has been the branded leader in in-home, self-care medical products for over 35 years. Our goal is to improve the lives of our customers by bring them quality products that bring dignity back to their lives. With our three nationally distributed brands, Carex Health Brands serves national, regional and independent food, drug and mass retailers along with wholesalers, distributors and medical dealers.

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