Understanding Colorectal Cancer: A Guide for Families

Published on February 12, 2024

Updated on February 6, 2024

As a hospice registered nurse case manager, I understand the challenges that colorectal cancer can bring to your loved one's life. In this article, we will delve into the journey ahead, discussing the changes that may occur as the disease advances. We'll also address the shifts you might observe in your loved one's condition and provide guidance on delivering optimal care throughout this process.

What is Colorectal Cancer?

The colon and the rectum are parts of the digestive system. They help process the food we eat and remove waste from the body. Sometimes, abnormal cells can grow in the lining of the colon or the rectum. These cells can form growths called polyps. Most polyps are harmless, but some can turn into cancer over time. This is why it is important to get regular screening tests, such as a colonoscopy, to find and remove polyps before they become cancerous.

Colorectal cancer can spread to other parts of the body through the blood or the lymph system. The lymph system is a network of vessels and nodes that helps fight . The stage of colorectal cancer depends on how far it has spread. The higher the stage, the more advanced the cancer is. The stage of colorectal cancer also affects the treatment options and the prognosis (the chance of recovery).

How is Colorectal Cancer Diagnosed and Treated?

If you or your loved one has symptoms of colorectal cancer, such as blood in the stool, abdominal pain, or changes in bowel habits, you should see a doctor as soon as possible. The doctor will ask about your medical history, perform a physical exam, and order some tests. These tests may include blood tests, stool tests, imaging tests (such as X-rays, CT scans, or MRI scans), and biopsy (taking a small sample of tissue for examination under a microscope).

The treatment of colorectal cancer depends on the stage, the location, and the type of the cancer, as well as the patient's age, health, and preferences. The main types of treatment are surgery, chemotherapy, radiation therapy, and targeted therapy. Surgery is the most common treatment for colorectal cancer. It involves removing the tumor and some surrounding tissue, and sometimes the nearby lymph nodes. Chemotherapy is the use of drugs to kill cancer cells or stop them from growing. Radiation therapy is the use of high-energy rays to destroy cancer cells or shrink tumors. Targeted therapy is the use of drugs that target specific features of cancer cells, such as genes or proteins, which make them different from normal cells.

The treatment of colorectal cancer can have side effects, such as pain, nausea, vomiting, hair loss, fatigue, infection, and bleeding. These side effects can vary from person to person and can be managed with the help of your health care team. You should talk to your doctor about the possible benefits and risks of each treatment option and how they may affect your quality of life.

What to Anticipate as Colorectal Cancer Progresses

Colorectal cancer is a complex illness that unfolds in stages. It's important to be prepared for the alterations that may happen as the disease moves forward. Here's an overview of what you can expect:

  • Advancing Symptoms: As the cancer progresses, your loved one might experience a variety of symptoms. These could include changes in bowel habits, unexplained weight loss, and persistent fatigue. Some symptoms may be caused by the cancer itself, while others may be caused by the treatment or other conditions. Your loved one may need more medication, more frequent visits to the doctor, or more supportive care, such as nutrition, hydration, or . You should monitor your loved one's symptoms and report any changes or concerns to the health care team.
  • Physical Changes: The disease's progression might lead to physical changes in your loved one's body. These changes can vary but might involve or pain in the abdominal region, swelling or fluid buildup in the abdomen or legs, jaundice (yellowing of the skin or eyes), or skin rashes. These changes can affect your loved one's appearance, mobility, and function. You should help your loved one cope with these changes by providing comfort, assistance, and encouragement. You should also respect your loved one's privacy and dignity and help them maintain their personal hygiene and grooming.
  • Emotional and Mental Well-being: The journey through colorectal cancer can impact emotional and mental well-being. Feelings of anxiety, sadness, and uncertainty are normal responses. Your loved one may also experience anger, frustration, guilt, or depression. These emotions can affect your loved one's mood, behavior, and outlook. You should support your loved one's emotional and mental well-being by listening, empathizing, and validating their feelings. You should also help your loved one find sources of hope, meaning, and joy, such as hobbies, spirituality, or social connections. You should also take care of your own emotional and mental well-being by seeking professional help, joining a support group, or reaching out to friends and family.

Colorectal cancer is a challenging disease that can affect many aspects of life. However, you and your loved one are not alone in this journey. There are many resources and services available to help you cope and live well with colorectal cancer. You should talk to your health care team, social worker, or counselor about your needs and concerns and how they can help you. You should also remember that you and your loved one are more than your diagnosis. You are still the same people you were before, with the same hopes, dreams, and values. You should cherish every moment you have together and celebrate every milestone you achieve. You should also be proud of your strength, courage, and resilience in facing this disease. You are an inspiration to others and a source of love and light in this world.

Recognizing Changes in Your Loved One

As a caregiver, it's essential to be attuned to changes in your loved one's condition. Here are key areas to monitor:

  • Physical Appearance: Keep an eye out for weight loss, changes in skin tone, and any physical your loved one might express. These changes may indicate that the cancer is affecting their nutrition, hydration, or organ function. You should help your loved one maintain a healthy diet, drink enough fluids, and manage their pain. You should also consult with their doctor about any changes that concern you.
  • Communication: Pay attention to any shifts in communication patterns. Your loved one might become more withdrawn or have difficulty expressing themselves. This could be due to fatigue, depression, or cognitive impairment. You should encourage your loved one to communicate their needs, feelings, and preferences. You should also use simple, clear, and respectful language when talking to them. You should avoid being judgmental, critical, or dismissive of their concerns. You should also listen actively and attentively to what they have to say.
  • Emotional State: Be mindful of emotional changes. Colorectal cancer can evoke a range of emotions, such as fear, anger, sadness, or guilt. Your loved one may also experience mood swings, anxiety, or depression. These emotions can affect their coping skills, self-esteem, and relationships. You should support your loved one's emotional state by offering a supportive presence, showing empathy, and validating their feelings. You should also help your loved one find sources of emotional support, such as counseling, therapy, or support groups. You should also acknowledge and address your own emotions, as caregiving can be stressful and demanding. You should seek help when you feel overwhelmed, burned out, or isolated.

Providing Compassionate Care Throughout the Journey

From the initial stages of the disease to its later phases, your caregiving role is crucial. Here's how you can ensure the best care for your loved one:

  • Open Communication: Maintain open and honest conversations with your loved one about their needs and wishes. Ask them how they are feeling, what they are thinking, and what they want. Respect their choices and preferences, even if they differ from yours. Share your own feelings and concerns, too. Communication can help you and your loved one cope better and strengthen your bond.
  • Comfort and Dignity: Prioritize their comfort and dignity by addressing and personal care. Help your loved one manage their pain by following their doctor's instructions and reporting any changes or problems. Help your loved one with their personal care, such as bathing, dressing, and grooming. Be gentle, respectful, and sensitive to their privacy and dignity. Make their environment comfortable and pleasant by adjusting the temperature, lighting, and noise level.
  • Emotional Support: Offer a listening ear and emotional support. Let your loved one express their feelings without judgment. Acknowledge their emotions and validate their experiences. Show empathy and . Avoid giving advice, criticism, or false reassurance. Instead, offer encouragement, hope, and gratitude. Remind your loved one of their strengths, achievements, and values. Help your loved one find sources of joy and meaning, such as hobbies, spirituality, or memories.
  • Involving Hospice Professionals: As a hospice registered nurse case manager, I'm here to assist you. provides specialized support tailored to the needs of patients with advanced illnesses. focuses on improving the quality of life and relieving the suffering of patients and their families. Hospice care can be provided at home, in a hospice facility, or in a hospital. Hospice care involves a team of professionals, such as doctors, nurses, social workers, chaplains, and volunteers. They can help you and your loved one with medical care, symptom management, emotional and spiritual support, and practical assistance. Hospice care can also provide bereavement support for families after the loss of their loved one.

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. In this section, we will give you some tips on how to provide end-of-life care and ensure comfort and peace for your loved one.

Hospice Care: Hospice care is a type of care that 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 the cancer or prolong life, but rather to relieve pain and other symptoms, such as nausea, , or anxiety. Hospice care also provides emotional and spiritual support for your loved one and your family. Hospice care can be given at home, in a hospital, or in 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 different hospice programs based on their services, staff, costs, and location. You can also visit the hospice facility or talk to the hospice staff to get a sense of 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 health care 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 , a counselor, a home health aide, and a . 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 your loved one will receive and how they will be administered.
    • What equipment and supplies your loved one will need and how they will be delivered.
    • What comfort measures and complementary therapies your loved one will use, such as massage, music, or aromatherapy.
    • What emotional and spiritual support your loved one and your family will receive, such as counseling, prayer, or rituals.
    • What legal and financial matters your loved one and your family will need to 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 as needed. 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 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.

Emotional Well-being: The end of life can be a time of mixed emotions for your loved one and your 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:

  • Helping them find meaning and purpose in their life. You can help them reflect on their life story, their achievements, their values, and their legacy. You can also help them express their gratitude, forgiveness, or love to the people who matter to them. You can use different methods, such as 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 fear and worry, such as talking, praying, meditating, or breathing. You can also help them find comfort and hope in their , beliefs, or philosophy.
  • Helping them create cherished memories. You can help them make the most of the time they have left with their loved ones. You can help them plan and enjoy special occasions, such as 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 by.

Conclusion

Colorectal cancer presents challenges that require a compassionate and informed approach. By understanding the progression of the disease, recognizing changes in your loved one, and providing dedicated care, you can make a meaningful difference in their journey.

Resources

Caring for a Loved One with Terminal Cancer: A Guide for Families

Understanding Cancer Metastasis: A Guide for Patients and Families

American Cancer Society Colorectal Cancer

Colorectal Cancer Awareness Month

Colorectal Cancer: Recognizing Your Risk

Stage of diagnosis of Colorectal Cancer

Colorectal Cancer – More People Screened, More Lives Saved

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

The Importance of Caregiver Journaling

Reporting Changes of Condition to Hospice

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The Caregiver's Guide to Cancer: Compassionate Advice for Caring for You and Your Loved One (Caregiver's Guides)

Cancer Caregiving A-to-Z: An At-Home Guide for Patients and Families

Peace in the Face of Cancer

A Handbook of caring for someone with cancer: Instructions for the Support Person or Caregiver Helping a Loved One Survive Cancer

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Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

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The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

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The Art of Dying

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Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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