A diagnosis of end-stage colon cancer is something nobody wants to hear. It is never easy to deal with a terminal disease, but understanding the symptoms, getting good palliative care, and receiving the mental support you need can help.
In end-stage colon cancer, cancer has spread to other parts of the body, treatment has failed, and death is generally fairly close.
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As with other cancers, the end tends not to come quickly, and there can be a lengthy period of time between acknowledging that treatment has failed and death. The very end-stage can be somewhat unpredictable in its onset.
However, the five-year survival rate for stage IV (metastasizing) colon cancer is only 14%¹. Treatment can help you live longer and have a much better quality of life, but there is still no cure for end-stage colon cancer.
There are usually ongoing clinical trials, and your doctor may recommend that you sign up for one to get access to an experimental treatment. One study has shown that the survival time of patients² with incurable CRC has improved from eight to 14 months and has been reported to exceed two years in a few cases.
Typically, this form of cancer shows up in people who have previously had colorectal cancer and had surgery. While surgeons do their best to remove all cancerous cells, some cells may have already spread, and the cancer can come back.
Colon cancer is diagnosed by using a colonoscopy, which is recommended for most people after the age of 50 and for African-Americans after the age of 45. Screening methods such as stool tests are non-invasive, inexpensive, fast methods to detect the early signs of bowel cancer.
One tricky part is that some people may not have symptoms. As per the national guidelines, getting colon cancer screening is vital for finding early, treatable bowel cancers and recurrence amongst colon cancer survivors.
Your doctor might also have you monitor for symptoms that your cancer has returned.
People with metastasized colon cancer may have the typical symptoms of colon cancer:
Dark blood in the stool
Constipation and/or diarrhea
Long, thin, pencil-like stools
Abdominal pain or bloating
Unexplained weight loss
Nausea and vomiting
With cancer that has spread, you might experience other symptoms depending on where the tumors have formed. With colon cancer, this typically means the liver, lungs, and peritoneum. Tumors in the lungs could result in difficulty breathing and shortness of breath. Tumors in the liver can result in nausea and jaundice (yellow and itchy skin).
The treatment for late-stage colorectal cancer may include systemic chemotherapy, new immunotherapies, or targeted radiotherapy. All these options aim to reduce the number of cancer cells, thereby improving your symptoms. Immunotherapies harness your immune system to destroy cancer cells. Many patients are given two or three of these drugs.
Surgery is not typically an option at this point, although surgery to remove tumors from the liver has been demonstrated to help.
You will be given medication to control pain when it becomes necessary. As your cancer progresses, you may be given strong opioids. Anti-nausea drugs are often given, either to treat nausea caused by the cancer or the side effects of chemotherapy. If the lungs are involved, you might be put on oxygen.
Your doctor will also recommend treatments for your mental health, which might include meditation and therapy. Many patients and their families benefit from joining appropriate support groups. This is part of palliative care, which is not the same thing as hospice and does not always mean that there is no cure. Palliative care is about improving your quality of life, which might include helping you with diet and nutrition, the aforementioned mental health support, pain management, etc.
There is some overlap between "stage IV" and "end-stage." Typically, stage IV is when the cancer has spread through the body, away from its original site. End-stage is when the cancer is no longer considered curable.
Thus, end-stage cancer is stage IV cancer, but some people are fortunate enough to survive stage IV with modern treatments. As treatments continue to improve, more and more people will see multi-year survival after stage IV colon cancer.
Unfortunately, end-stage colon cancer is by definition terminal. Your doctor will discuss end-of-life care with you and your family early. You may already have had some of these conversations.
Hospice care is generally the standard for end-of-life management with cancer, although at-home hospice care has become a more common option. Hospice care can start as early as six months before the projected end-of-life. Some people who go into hospice care rally and survive longer, so hospice is not necessarily an indicator that the end is imminent.
However, there are certain signs that death is approaching. Progressive symptoms can include increasing lethargy, decreasing appetite, changes in mental state, and profound weakness.
It should be noted that, not surprisingly, symptoms of decline can mimic that of depression – a medical professional will regularly assess you and assist you along this journey. End-of-life care aims to improve symptoms, prevent suffering, and keep patients comfortable.
Supporting somebody with end-stage cancer can be tough, especially as the end of life approaches. Don't be afraid to seek professional help. Family members may also benefit from support groups and therapy. There is no shame in talking to a grief therapist before your loved one has passed on in certain circumstances.
Accept that strange behavior is normal for cancer patients during the last days. Extreme withdrawal from those around them is a common end-of-life symptom that can upset those caring for them.
Talk to your loved one's doctor and any nurses caring for them, especially hospice staff. Ask what you can do to help them, which might include helping them change position or making their bed or chair more comfortable. Often, simply being present is the best a family member can do for them.
Dealing with end-stage colon cancer is not easy for either the patient or their family. Understanding what is likely to happen and getting the support you need is vital. So is properly communicating with your oncologist and other medical professionals, who can help with what to expect in your specific case.