Supporting a loved one through their bone cancer journey can be challenging, but with the right knowledge and compassionate care, you can provide meaningful support every step of the way. This guide aims to help you understand what to expect and how to offer the best care possible.
Understanding Bone Cancer
When you hear that your loved one has bone cancer, you may feel scared, confused, or angry. You may wonder what bone cancer is, how it affects your loved one, and what you can do to help. In this section, we will explain some basic facts about bone cancer and answer some common questions you may have.
Bone cancer is a disease that starts in the bones. Bones are hard structures that support and protect our body. They also help us move and make blood cells. Sometimes, the cells in the bones grow out of control and form a lump called a tumor. A tumor can be benign (not cancer) or malignant (cancer). A benign tumor does not spread to other parts of the body and usually does not cause serious problems. A malignant tumor can spread to other parts of the body and damage healthy tissues and organs. This is called metastasis.
There are different types of bone cancer, depending on where they start and what kind of cells they are made of. Some of the most common types of bone cancer are:
Osteosarcoma: This type of bone cancer starts in the cells that make new bone. It usually affects children and young adults, especially in the legs, arms, or pelvis.
Ewing sarcoma: This type of bone cancer starts in the cells that make nerve tissue. It can affect the bones or the soft tissues around them. It usually affects children and young adults, especially in the hips, ribs, or shoulder blades.
Chondrosarcoma: This type of bone cancer starts in the cells that make cartilage. Cartilage is a soft tissue that covers the ends of the bones and helps them move smoothly. This type of bone cancer usually affects adults, especially in the arms, legs, or pelvis.
Chordoma: This type of bone cancer starts in the cells that make the spine. It usually affects older adults, especially at the base of the spine or the base of the skull.
The causes of bone cancer are not well understood. Some factors that may increase the risk of bone cancer are:
Having a family history of bone cancer or certain genetic conditions that affect the bones.
Having had radiation therapy or chemotherapy for another cancer.
Having a bone disease called Paget’s disease.
Early Symptoms
Identifying early signs of bone cancer is crucial for timely intervention. Keep an eye out for:
Persistent Bone Pain: Continuous discomfort in the bones.
Swelling and Tenderness: In the area of the cancer.
Unexplained Weight Loss: Losing weight without apparent cause.
Fatigue and Weakness: Unusual tiredness and lack of strength.
Diagnosis and Treatment
When bone cancer is suspected, medical professionals conduct tests including:
X-rays: These are pictures that show the inside of the bones and can reveal any abnormal growths or fractures.
Bone scan: This is a test that uses a small amount of radioactive material to show how active the bones are. It can help find tumors that are not visible on X-rays.
CT scan: This is a test that uses a special machine to take many X-rays from different angles and make a detailed image of the bones and other organs. It can show the size and shape of the tumor and whether it has spread to other parts of the body.
MRI: This is a test that uses a strong magnet and radio waves to make a detailed image of the bones and soft tissues. It can show the extent of the tumor and whether it has affected the nerves or blood vessels.
Biopsy: This is a procedure that involves taking a small sample of tissue from the tumor and looking at it under a microscope. It can confirm the diagnosis of bone cancer and tell what type of cells it is made of.
The treatment of bone cancer depends on many factors, such as the type, stage, location, and size of the tumor, the age and health of the patient, and their preferences. Some of the common treatments are:
Surgery: This is an operation that involves removing the tumor and some of the surrounding healthy tissue. Sometimes, the whole bone or part of it may need to be removed and replaced with a metal implant or a bone graft from another part of the body. This is called limb-sparing surgery or amputation.
Chemotherapy: This is a treatment that uses drugs to kill cancer cells or stop them from growing. The drugs can be given by mouth, by injection, or by infusion into a vein. Chemotherapy can be given before or after surgery to shrink the tumor or prevent it from coming back.
Radiation therapy: This is a treatment that uses high-energy rays to destroy cancer cells or stop them from growing. The rays can come from a machine outside the body or from a small device inside the body near the tumor. Radiation therapy can be given before or after surgery to shrink the tumor or prevent it from coming back.
The goal of treatment is to cure the cancer or control it as long as possible. Sometimes, the cancer may not respond to treatment or may come back after treatment. In these cases, the doctor may suggest other treatments or palliative care. Palliative care is a type of care that focuses on relieving the symptoms and improving the quality of life of the patient and their family.
Managing Symptoms
Bone cancer can cause different symptoms in your loved one, depending on the type, location, and stage of the cancer. Some of the common symptoms are bone pain, swelling, fractures, fatigue, weight loss, and infection. These symptoms can affect your loved one’s physical and emotional well-being. As a caregiver, you can help your loved one manage these symptoms and improve their quality of life. Here are some ways you can assist:
Pain Management: Bone cancer pain can be very severe and interfere with your loved one’s daily activities. Pain can also affect your loved one’s mood, sleep, and appetite. It is important to work with your loved one’s health care providers to find the best way to control the pain. Your loved one may need different types of pain medications, such as opioids, anti-inflammatory drugs, steroids, or antidepressants. Your loved one may also benefit from other treatments, such as radiation therapy, surgery, or nerve blocks, which can shrink the tumor or block the pain signals. You can help your loved one by:
Giving them their pain medications as prescribed and on time. Do not skip or change the doses without consulting the doctor.
Keeping track of their pain level and how well the medications are working. You can use a pain scale from 0 to 10, where 0 means no pain and 10 means the worst pain imaginable. Personally, I prefer the PAINAD Scale for confirmation of pain as some patients will under or over report pain; and the PAINAD scale is extremely reliable. Report any changes or concerns to the doctor.
Helping them cope with the side effects of pain medications, such as constipation, nausea, drowsiness, or confusion. You can give them laxatives, anti-nausea drugs, fluids, or snacks as needed. You can also monitor their mental alertness and safety.
Providing comfort measures, such as massage, heat, ice, or distraction. You can also help them find a comfortable position, use pillows or cushions, or adjust the lighting or temperature in the room.
Encouraging them to do gentle exercises, such as stretching, walking, or yoga, if they are able. Physical activity can help reduce pain, improve mood, and maintain muscle strength and flexibility.
Being supportive and understanding. Listen to their feelings and concerns without judging or minimizing. Acknowledge their pain and offer reassurance and hope.
Emotional Support: Bone cancer can cause a lot of emotional distress for your loved one. They may feel scared, angry, sad, depressed, or lonely. They may also have worries about the future, such as their prognosis, treatment, finances, or family. These emotions are normal and understandable. You can help your loved one by:
Being there for them emotionally. Listen to their feelings and concerns without judging or interrupting. Try to be positive and hopeful, but also realistic and honest. Share your own feelings and fears with your loved one or someone else you trust.
Spending quality time with them. Do things that you both enjoy, such as watching a movie, playing a game, reading a book, or listening to music. You can also help them stay connected with their friends and family by phone, email, or social media. Arrange for visits, when possible but respect your loved one’s wishes and privacy.
Encouraging them to join a support group. A support group is a place where people with similar experiences can share their stories, tips, and advice. It can help your loved one feel less alone and more hopeful. You can ask the doctor for a referral to a support group for people with bone cancer or their caregivers. You can also look for online or phone-based support groups.
Helping them seek professional help. Sometimes, emotional support from family and friends is not enough. Your loved one may need help from a counselor, therapist, or psychiatrist. These professionals can provide counseling, therapy, or medication to help your loved one cope with their emotions. You can ask the doctor for a referral to mental health and social support services.
Nutrition: Bone cancer can affect your loved one’s nutrition in different ways. They may lose their appetite, have trouble swallowing, or experience nausea, vomiting, or diarrhea. They may also have a higher risk of infection, anemia, or osteoporosis. These factors can lead to weight loss, malnutrition, or dehydration. It is important to help your loved one eat a balanced diet that can provide them with enough calories, protein, vitamins, and minerals. This will help them maintain their strength, energy, and immunity. You can help your loved one by:
Providing them with small, frequent, and easy-to-eat meals and snacks. You can also offer them liquid or soft foods, such as soups, smoothies, or puddings, if they have difficulty chewing or swallowing. Avoid foods that are greasy, spicy, or acidic, as they may cause nausea or heartburn.
Giving them foods that are high in calcium and vitamin D. These nutrients are essential for bone health and can help prevent or treat osteoporosis. Some examples of foods that contain calcium and vitamin D are dairy products, dark green leafy vegetables, fortified cereals, and fish with bones. You can also ask the doctor if your loved one needs supplements.
Encouraging them to drink plenty of fluids. Fluids can help prevent dehydration, constipation, and kidney problems. Water is the best choice, but you can also give them juice, milk, tea, or broth. Avoid alcohol, caffeine, or carbonated drinks, as they may cause dehydration or irritation.
Consulting a dietitian. A dietitian is a professional who can assess your loved one’s nutritional needs and provide them with a personalized meal plan. A dietitian can also give you tips on how to prepare, serve, or store food safely and hygienically. You can ask the doctor for a referral to a dietitian who specializes in cancer nutrition.
Adapting to Changes
Bone cancer can cause many changes in your loved one’s life. They may have difficulty moving, feel different emotions, or get tired easily. These changes can be hard to cope with for both you and your loved one. You may need to adjust your expectations, routines, and roles. In this section, we will give you some tips on how to adapt to these changes and support your loved one.
Mobility Issues: Bone cancer can affect your loved one’s mobility in different ways. They may have pain, swelling, or fractures in their bones that make it hard to walk, stand, or sit. They may also have surgery or amputation that changes the shape or function of their limbs. They may need to use walking aids, such as crutches, canes, walkers, or wheelchairs, to help them move around. You can help your loved one by:
Helping them get the right walking aids. You can ask the doctor, nurse, or physical therapist for a referral to an occupational therapist or a prosthetist. These professionals can assess your loved one’s needs and provide them with the appropriate walking aids, such as custom-made prosthetics, orthotics, or braces.
Teaching them how to use the walking aids safely and correctly. You can follow the instructions and demonstrations from the health care providers. You can also practice with your loved one at home or in a safe environment. You can help them adjust the height, width, or angle of the walking aids as needed.
Supporting them physically and emotionally. You can offer your arm, hand, or shoulder to help them balance or steady themselves. You can also praise their efforts and achievements and encourage them to keep trying. You can also respect their independence and dignity and let them do as much as they can by themselves.
Making the home environment more accessible and comfortable. You can remove any obstacles or hazards, such as rugs, cords, or furniture, which may cause tripping or falling. You can also install ramps, rails, or grab bars to help them move around more easily. You can also provide them with a comfortable chair, bed, or couch to rest on.
Changes in Mood: Bone cancer can affect your loved one’s mood in different ways. They may feel happy, sad, angry, scared, or numb at different times. They may also have mood swings, where their emotions change quickly and unpredictably. These mood changes can be caused by many factors, such as the cancer itself, the treatment, the pain, the stress, or the hormones. You can help your loved one by:
Being there for them emotionally. Listen to their feelings and concerns without judging or interrupting. Try to be positive and hopeful, but also realistic and honest. Share your own feelings and fears with your loved one or someone else you trust.
Helping them cope with their emotions. You can help them find healthy ways to express and release their emotions, such as talking, writing, drawing, or crying. You can also help them find activities that make them happy or calm, such as listening to music, watching a movie, meditating, or praying.
Seeking professional help if needed. Sometimes, mood changes can be signs of more serious mental health problems, such as depression, anxiety, or post-traumatic stress disorder. These problems can affect your loved one’s ability to function, enjoy life, or follow their treatment plan. If you notice any of these signs in your loved one, you should encourage them to see a doctor, counselor, therapist, or psychiatrist. These professionals can provide counseling, therapy, or medication to help your loved one cope with their mood problems.
Fatigue: Bone cancer can cause your loved one to feel very tired or exhausted. Fatigue can be caused by many factors, such as the cancer itself, the treatment, the pain, the anemia, or the infection. Fatigue can affect your loved one’s physical and mental abilities, such as their concentration, memory, or mood. It can also interfere with their daily activities, such as their work, school, or hobbies. You can help your loved one by:
Encouraging them to rest and relax. You can help them plan their day and prioritize their tasks. You can also help them schedule their activities around their energy levels, such as doing the most important or enjoyable things when they feel the most energetic. You can also help them take breaks or naps when they need them.
Helping them conserve their energy. You can help them find ways to do things more easily or efficiently, such as using a cart, a stool, or a shower chair. You can also help them delegate or share some of their responsibilities, such as cooking, cleaning, or shopping. You can also offer to do some of these tasks for them but respect their wishes and preferences.
Supporting them physically and emotionally. You can help them stay physically active, as long as they are able and comfortable. Physical activity can help reduce fatigue, improve mood, and maintain muscle strength and flexibility. You can help them find a suitable exercise program, such as walking, swimming, or yoga, and do it with them or accompany them. You can also help them eat a balanced diet that can provide them with enough calories, protein, vitamins, and minerals. This will help them maintain their strength, energy, and immunity. You can also help them drink plenty of fluids to prevent dehydration. You can also be supportive and understanding of their fatigue and avoid making them feel guilty or lazy.
Providing End-of-Life Care
There may come a time when the cancer treatment is no longer working, and your loved one is nearing the end of life. This can be an exceedingly difficult and emotional time for both of you. You may feel sad, angry, scared, or numb. You may also have many questions and concerns about what will happen and how to help your loved one. This section will give tips on providing end-of-life care and ensuring comfort and peace for your loved one.
Hospice Care: Hospice care focuses on making your loved one as comfortable as possible in the last months, weeks, or days of life. Hospice care does not try to cure cancer or prolong life but rather to relieve pain and other symptoms, such as nausea, shortness of breath, or anxiety. Hospice care also provides emotional and spiritual support for your loved one and family. Hospice care can be given at home, in a hospital, or at a hospice facility, depending on your loved one’s needs and preferences. You can help your loved one by:
Talking to the doctor about hospice care. You can ask the doctor if your loved one is eligible for hospice care and when it might be appropriate to start. You can also ask the doctor for a referral to a hospice program in your area. You can find more information about hospice care from the National Hospice and Palliative Care Organization or the American Cancer Society.
Choosing a hospice program that meets your loved one’s needs. You can compare hospice programs based on their services, staff, costs, and location. You can also visit the hospice facility or talk to the staff to understand their philosophy and approach. You can ask questions such as:
What services do you offer, and how often?
Who will be part of the hospice team, and how will they communicate with us?
How do you manage pain and other symptoms?
How do you provide emotional and spiritual support?
How do you involve the family in the care plan?
How do you handle emergencies or after-hours calls?
How do you coordinate with other healthcare providers?
How do you bill for your services, and what insurance do you accept?
Working with the hospice team to create a care plan. The hospice team will include a doctor, a nurse, a social worker, a chaplain, a counselor, a home health aide, and a volunteer. They will work with you and your loved one to create a care plan that reflects your loved one’s wishes and goals. The care plan will include details such as:
What medications and treatments will your loved one receive, and how will they be administered?
What equipment and supplies will your loved one need, and how will they be delivered?
What comfort measures and complementary therapies will your loved one use, such as massage, music, or aromatherapy?
What emotional and spiritual support will your loved one and your family receive, such as counseling, prayer, or rituals?
What legal and financial matters must your loved one and your family address, such as advance directives, wills, or funeral arrangements?
Providing care and support for your loved one. You will be the primary caregiver for your loved one, but you will not be alone. The hospice team will visit your loved one regularly and be available by phone 24/7. They will teach you how to care for your loved one, such as giving medications, changing dressings, or using equipment. They will also monitor your loved one’s condition and adjust the care plan. You can also ask for help from other family members, friends, or volunteers. You can help your loved one by:
Giving them their medications and treatments as prescribed and on time. Do not skip or change the doses without consulting the hospice team.
Keeping track of their pain and symptom level and how well the medications and treatments are working. Report any changes or concerns to the hospice team.
Providing comfort measures, such as massage, heat, ice, or distraction. You can also help them find a comfortable position, use pillows or cushions, or adjust the lighting or temperature in the room.
Being there for them emotionally and spiritually. Listen to their feelings and concerns without judging or interrupting. Try to be positive and hopeful but also realistic and honest. Share your feelings and fears with your loved one or someone you trust. You can also seek professional help from a counselor or therapist if you or your loved one are feeling overwhelmed, depressed, or anxious.
Emotional Well-being: The end of life can be a time of mixed emotions for your loved one and family. Your loved one may feel grateful, peaceful, or relieved but also sad, angry, or scared. They may also have regrets, unfinished business, or unfulfilled dreams. You can help your loved one by:
Help them find meaning and purpose in their lives. You can help them reflect on their life story, achievements, values, and legacy. You can also help them express their gratitude, forgiveness, or love to those who matter to them. You can use different methods like writing, drawing, recording, or making a scrapbook.
Helping them cope with their fears and worries. You can help them identify and address their sources of fear and worry, such as pain, suffering, loss of control, or the unknown. You can also help them find ways to reduce their anxiety and worry, such as talking, praying, meditating, or breathing. You can also help them find comfort and hope in their faith, beliefs, or philosophy.
Helping them create cherished memories. You can help them make the most of their time with their loved ones. You can help them plan and enjoy special occasions like birthdays, anniversaries, or holidays. You can also help them create meaningful gifts, such as letters, videos, or jewelry, for their loved ones to remember them.
Physical, Emotional, Social Well-being
Bone cancer can affect your loved one’s physical, emotional, and social well-being. As a caregiver, you can play a significant role in supporting your loved one through this difficult time. Some of the ways you can help are:
Learn as much as you can about bone cancer and its treatment. Ask the doctor or nurse any questions you or your loved one may have. You can also look for reliable sources of information online, such as the American Cancer Society or the National Cancer Institute.
Help your loved one cope with the side effects of treatment. Some of the common side effects are pain, nausea, vomiting, fatigue, hair loss, infection, and bleeding. You can help by giving your loved one their medications, preparing easy-to-eat foods, encouraging them to rest, and keeping them comfortable and clean.
Be there for your loved one emotionally. Listen to their feelings and concerns without judging or interrupting. Try to be positive and hopeful, but also realistic and honest. Share your own feelings and fears with your loved one or someone else you trust. You can also seek professional help from a counselor or therapist if you or your loved one are feeling overwhelmed, depressed, or anxious.
Help your loved one stay connected with their friends and family. Encourage them to stay connected with their loved ones by phone, email, or social media. Arrange for visits, when possible but respect your loved one’s wishes and privacy. You can also join a support group for people with bone cancer or their caregivers, where you can meet others who are going through similar experiences and share tips and advice.
Take care of yourself. Caring for someone with bone cancer can be stressful and exhausting. You need to look after your own health and well-being, too. Make sure you eat well, get enough sleep, exercise regularly, and take breaks when you need them. Do something that makes you happy or relaxes you, such as reading, listening to music, or meditating. Ask for help from other family members, friends, or professionals when you feel overwhelmed or need a break.
Remember that you are not alone on this journey. There are many resources and people who can help you and your loved one cope with bone cancer. You can find more information and support from the following sources:
The American Cancer Society: This is a nationwide organization that provides information, education, and support for people with cancer and their caregivers.
The Johns Hopkins Medicine: This is an academic medical center that offers comprehensive and compassionate care, education, and research for people with cancer and other diseases.
The CancerHealth.today: This is an online platform that provides reliable and up-to-date information, tips, and resources for people with cancer and their caregivers.
The Bone Cancer Research Trust: This is a UK-based charity that funds research, raises awareness, and provides information and support for people with bone cancer and their caregivers.
The Sarcoma Foundation of America: This is a nonprofit organization that funds research, advocates for policy changes, and provides information and support for people with sarcoma, a type of cancer that includes bone cancer and soft tissue cancer.
The SpringerLink: This is an online database that provides access to scientific journals, books, and articles on various topics, including cancer and bone health.
Navigating bone cancer as a family entails challenges, yet your love and support can significantly impact the journey. By comprehending the disease, addressing symptoms, and offering compassionate care, you can help your loved one experience a tranquil and comfortable passage.
