Dealing with Stage 4 Colon Cancer

Making Decisions and Coping with Stage 4 Colon Cancer

Doctor showing senior patient brochure in office
What do you need to know to best cope and deal with stage 4 colon cancer?. Hero Images/Getty Images

How can you best cope when you learn you have stage 4 colon cancer? What decisions will you need to make and what do you need to know to make the best choices for yourself personally? Let's look at what having stage 4 colon cancer means, how long people usually live with this stage of the disease, and what you need to know to make the best decisions possible at this frightening and overwhelming time.

What is Stage 4 Colon Cancer?

Stage 4 colon cancer is the most advanced stage of the disease and may also be referred to as metastatic colon cancer. Before saying anything else we need to point out that not all stage 4 colon cancers are alike. By definition, stage 4 colon cancers are those which have traveled beyond the colon (metastasized,) but there are several different regions to which this occurs. For that reason, statistics regarding survival can be misleading. Every colon cancer is different, and each person's body, including other medical conditions and general health is different.

Making Important Decisions About Your Stage 4 Colon Cancer Care

Unfortunately, for most people, stage 4 colon cancer is not considered curable. However, it can almost always be treated. People can live many months and even years with stage 4 colon cancer. How long a person lives after the diagnosis depends on many things, including how the colon cancer cells are behaving, where the colon cancer has spread, and how a person responds to available treatments.

The most common site to which colon cancer spreads is the liver (liver metastases) but it may also spread to the lungs, the brain, and the peritoneum, the membranes which surround the abdominal cavity, as well as other areas.

While making decisions it's important to note that there has been a new approach to treating colon cancer in recent years.

In the past, stage 4 colon cancers were all treated the same. Treatments were directed at the cancer in general, no matter where the cancer has spread. This has, thankfully, changed. Now, when a person has only a few or a small areas of metastases, say to the liver, treatment of the metastases may be considered. In medical lingo, a single or only a few metastases are referred to as "oligometastases" with the term "oligo" meaning few.

For those who have metastatic colon cancer with only a few metastases to the liver or lungs, removing the metastases can sometimes result in long term survival. For many people, however, these treatments are not possible, and the focus of treatment becomes trying to control the cancer to extend life while emphasizing quality of life.

You may wish to learn more about the treatment of liver metastases related to colon cancer.

How Much Information Do You Want About Your Stage 4 Colon Cancer Prognosis?

Among the first things you will discuss with your health care team is how much information you want about your prognosis. Prognosis refers to the possible course of disease and how much time you have. Some people want very specific information regarding how long they might live with stage 4 colon cancer.

Other people prefer not to know these details.

Even if you want as much information as possible, keep in mind that predicting how long someone will live with stage 4 colon cancer is not exact. Your doctor may give you a range of time he or she expects you will live. This is his or her best guess, which is based on your particular case and on your doctor's medical experience. Everyone is different.

Also remember that situations change. Some people live much longer than expected. Others live for a shorter time. And some doctors will not give predictions about how long a person will live with stage 4 colon cancer, because they simply do not know.

The most important thing to know is that you can learn as much or as little as you want about your prognosis. It is up to you. Be sure to make what you want to know (or don't) clear to the doctor.

What Does Your Family Want to Know?

When making your decision about details, of course, it can be important to think about those who love you and may help care for you. Many family members want complete information about how long a loved one may live after being diagnosed with stage 4 colon cancer. Other family members may find this information very upsetting. They may not want to hear it.

Make sure your doctor knows who in your family wants (or needs) complete information and who does not. Your doctor can even make a note in your chart describing your goals for information sharing about your cancer treatment. This way, everyone on the health care team will be on the same page during appointments.

Being diagnosed with stage 4 colon cancer can make you feel out of control. Knowing your options regarding information sharing about your cancer, your treatment decisions, and end of life care decisions will help you move forward at a difficult time.

How Long Can You Live with Stage 4 Colon Cancer?

Predictions about survival with stage 4 colon cancer are based on statistics, and people are not numbers.

In addition, survival statistics are, by definition, always a few years old. The 5-year survival rate for a disease will give you an estimate of how long someone may have lived who was diagnosed 5-years ago. With recent advances in cancer treatment, and many new cancer drugs, such as targeted therapies and immunotherapy being studied in clinical trials, as well as treatments for oligometastases (for example, colon cancer metastases to the liver) these numbers are expected to change. How someone does today with colon cancer may be very different than how someone may have done even just five years ago.

It's important to understand this changing course of cancer medicine when you make your decisions. If you talk to someone, perhaps a neighbor or another family member, who dealt with colon cancer in the past, the approach to treatment may be very different now. When people comment on others who have had the disease—which will almost certainly occur—you may want to gently remind them that treatments are changing. Better treatments are available for colon cancer than we had even two years ago, and long term survival rates—even with stage 4 disease  are improving.

The current survival rate for stage 4 colon cancer, according to the American Cancer Society is 11 percent. That said, a 2017 study found that those with stage 4 colon cancer with liver metastases, who were candidates for removal of the liver metastases at the same time as colon surgery, had 5-year survival rates of up to 70 percent. There are more people living longer, even disease free, with stage 4 colon cancer than ever before. If you have colon cancer with liver metastases which are treatable, there are many people, such as country western singer Wade Hayes, who are living evidence that sometimes stage 4 colon cancer is survivable.

MD Anderson cancer center has a colon cancer survival calculator which takes into account not only stage, but age, ethnicity, sex, and differentiation of the cancer cells. Of course, even with these variables, survival can vary considerably based on other medical conditions you may have, the specific treatments you receive, and the molecular profile of your tumor.

When Should You Stop Treatment with Stage 4 Colon Cancer?

While we have better treatments than in the past, and sometimes can even treat metastases, we know that many people with stage 4 colon cancer will reach a time at which the risks and side effects of treatment outweigh the benefits.

The advent of new treatments is a double-edged sword. These newer treatments can extend life and provide options not available just a few short years ago. Yet, whereas in the past we often simply ran out of treatments to offer, we have reached a point in which the choice to discontinue treatments often needs to be an active decision.

If you are at this point in your journey, make sure to ask a lot of questions, and carefully contemplate these 9 things to consider before stopping cancer treatment.

Coping with Colon Cancer When Treatment is No Longer Helpful

If you've decided to stop active treatment for your cancer, what is the next step?

Just because active treatment of your colon cancer ends, it does not mean that you will not have any treatments. Palliative care for colon cancer addresses comfort rather than cure, but may, at times, include radiation therapy, chemotherapy, or even surgery. Pain management is very important, as well as treatments aimed at reducing abdominal symptoms (such as constipation or bowel obstructions,) lack of appetite, anemia, and the anxiety and depression which can accompany an advanced cancer diagnosis.

You may wish to check out these tips for coping with terminal cancer; tips which others in this position have shared for issues ranging from dealing with relationships, to ways of finding and renewing hope.

Making a Decision about Hospice Care

Nobody wishes to bring up a discussion about hospice care. Cancer patients and their families both hope to protect the other by ignoring this discussion. Even physicians are reluctant to bring up the issue. What it's important to know however, is that choosing hospice care does not mean that you are giving up. With hospice care people are still treated. The difference is that instead of focusing on treatments to attack the cancer, hospice care focuses on treatments to control the symptoms of the cancer, and hopefully improve your quality of life.

Many people admit that after choosing hospice care they wish they had done so earlier. In order to receive hospice care, you will need a note from your doctor which estimates you have six months or less to live. If you live beyond the six months period, that's wonderful! You are never "penalized" for choosing hospice care too soon, and at that time you could choose to renew your hospice care for another six months if needed. Hospice care does not mean you are giving up hope, rather, you are choosing to hope for the best quality of life possible in the days you have left.

Bottom Line on Coping with Stage 4 Colon Cancer

Stage 4 colon cancer is frightening, and until very recently had a very poor prognosis. We have many more treatments available at this time, with even more available in clinical trials. This is wonderful in many ways, but unlike the past, people need to be a very active part of their cancer care team. In addition to having to make decisions about when to stop treatment, people have to learn about and consider taking part in clinical clinical trials—some of which have been changing the outlook for stage 4 colon cancer considerably. It's important to learn all you can about your cancer.

Take some time to learn about how to research your cancer online. Becoming involved in a colon cancer support community—ideally one in which you can communicate with other people coping with stage 4 cancer—not only offers a source of support, but can be invaluable in learning about the latest research on the disease. Before you hit "send" however, take a few moments to review how to use social media safely as a cancer patient. Oncology is changing so rapidly that is hard for any one physician—even one who specializes in colon cancer—to stay abreast of all the latest findings and treatment approaches. Some people who are living with stage 4 cancer, are alive only because of information they gained by being a part of one of these support communities.

It is also a time in which you need a team rather than a single physician. For those with stage 4 disease with oligometastases, your team may include a surgeon and a radiation oncologist along with your medical oncologist. Palliative care specialists are often called upon to help people cope with symptoms of the disease. Of course, the most important member of your cancer care team is you.

If you have chosen to stop treatment, expect people to respect your decision. This has to be your decision alone, and unfortunately, many people are begged by loved ones to continue treatment even when the side effects far outweigh any benefits. That said, reach out to your friends and family for support. Not everyone is comfortable being around a person with advanced cancer, and your relationships may change; some close friends moving farther away, and new friends becoming closer.

Most importantly, learn how to be your own advocate in your cancer care. Not only does it reduce your anxiety and help you to feel empowered in making your decisions, but sometimes can make a difference in outcomes.

Sources:

Inoue, Y., Imai, Y., Osumi, W. et al. What is the Optimal Timing for Liver Surgery of Resectable Synchronous Liver Metastases from Colorectal Cancer?. Annals of Surgery. 2017. 83(1):45-53.

National Cancer Institute. Colon Cancer Treatment (PDQ) – Health Professional Version. Stage IV and Recurrent Colon Cancer Treatment. Updated 04/21/17. https://www.cancer.gov/types/colorectal/hp/colon-treatment-pdq#section/_145

Nosher, J., Ahmed, I., Patel, A. et al. Non-Operative Therapies for Colorectal Liver Metastases. Journal of Gastrointestinal Oncology. 2015. 6(2):224-40.

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