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Summary

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When colorectal cancer recurs, there are ways to help control the spread of the cancer and extend life while managing colorectal cancer symptoms without diminishing your quality of life. While all recurrences are treatable, there is currently no cure possible when the cancer has spread to distant places within the body. However, even then, life can be extended and quality of life can be improved.

The first thing your doctors will do is suggest tests to find out why the cancer recurred. For instance,

  • Was it a failure of the initial treatment in the colorectal?
  • Did the colorectal cancer go somewhere else in the body (metastasize)? (Note: when cancer metastasizes, it is still known by the name of the original cancer site because the cells are the same).
  • Is it a different cancer all together?

The tests and the doctors who will be involved will likely be the same as when a diagnosis of colorectal cancer was first made.  Tests usually include a biopsy  and imaging devices such as a CT Scan

Treatment options depend on how your first appearance of disease was treated. For example,

  • If you were treated with surgery alone, a second surgery may be recommended which is then followed by chemotherapy and/or radiotherapy.
  • If a second surgery is believed to be too risky, chemotherapy and/or radiotherapy may be recommended.
  • If only one organ is affected, therapy which targets that organ may be recommended.
  • If you were previously given chemotherapy, your oncologist may not consider it to be the best choice for treating a recurrence. Instead, a different drug is usually suggested.
  • If the tumor cannot be removed, combined chemotherapy and radiotherapy may be used to reduce the size of the tumor. Sometimes the combination reduces the tumor enough so that it can then be removed.

For a description of the available tests and treatments, and how to make a reasoned decision click here 

If standard treatments will not work, there are cutting edge treatments which are available through clinical trials (controlled scientific studies involving humans) or treatments available in other countries.

As you review the information about making a treatment decision:

  • Keep in mind the amount of time your doctor says that you have to make a treatment decision.  Use the time to get a second opinion and to do whatever research you want to do - including checking guidelines from the National Comprehensive Cancer Network (NCCN) (www.nccn.org offsite link), the suggestions from the treatment helper available through the American Cancer Society (www.cancer.org offsite link), and possibly hiring a firm to research alternatives and give you an opinion. 
    • A second opinion should be from an experienced, independent expert, such as one available at an academic center or a NCI designated Comprehensive Cancer Center. offsite linkor an educational institution. At the least, the opinion should be from another type of cancer doctor than the one who initially recommended a treatment. For instance, if you saw a medical oncologist (one who specializes in the use of drugs to treat cancer), see a radiation oncologist (a cancer doctor who specializes in the use of radiation for the treatment of cancer). This is so even if you already had surgery or chemotherapy. For more information about second opinions, click here
    • Free transportation is available if needed although you may not need to go yourself. It may be enough to send your medical record and slides of your cancer.
    • Second opinions are usually covered by health insurance.
  • Do not dismiss out-of-hand the option of “watchful waiting” because you are dealing with a recurrence. Doing no treatment now may be a reasonable decision. For instance, if you are having no symptoms or only mild ones that do not interfere with your daily living, and you have another health condition which is likely to end your life before the colorectal cancer. 
  • It is also your choice to stop trying to eliminate or at least minimize cancer. You can switch to care known as palliative care which is more about quality of life than cure. The choice about whether to switch to palliative care, and when, is totally up to you. There is no right and wrong. This subject is covered in our document: Nearing End of Life 

Discuss the treatment decision in depth with a urologic oncologist and your family.

Dealing with a treatment decision for a recurrence is subject is likely to be difficult emotionally. Some people prefer denial and don’t want to think about making a treatment decision. The difficulty with denial in this situation is that making no decision is actually making a decision: a decision not to treat. That is your right if that’s what you choose. We are only suggesting that you actually think about it and make a conscious choice.  (For suggestions about coping with emotions that surface, click here. 

 If you have questions about:

  • Paying for treatment, read Survivorship A to Z information about finances by clicking here.
  • Whether health insurance covers, and how to maximize use of your insurance, click here.  
  • Documents you need to execute in order to keep control over your medical care even if you become unable to communicate (which can happen to any of us regardless of our health), click here. 

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Clinical Trials 101

What Is Colorectal Cancer Recurrence?

Colorectal cancer recurrence is the return of cancer after treatment and after a period of time during which the cancer cannot be detected (a period frequently referred to as “remission”).

A recurrence may be in the area of the colorectal gland where it started or it could have spread to other parts of the body. Even if it shows up in other parts of the body, it is still known as colorectal cancer because the cells are colorectal cancer cells. When the original cancer spreads to a new place, it is called a metastasis (meh-TAS-tuh-sis).

A recurrent cancer starts with cancer cells that the first treatment did not fully remove or destroy. Some may have been too small to be seen in follow-up. This does not mean that the treatment you received was wrong. And it does not mean that you did anything wrong either. It just means that a small number of cancer cells survived the treatment. These cells grew over time into tumors or cancer that your doctor can now detect.

It is possible to develop a completely new cancer that has nothing to do with your original cancer. This doesn't happen very often. Recurrences are more common. If the cancer is not related to your first cancer, it is called a Secondary Primary Cancer.

How To Find Clinical Trials Or Treatments In And Outside The U.S.

Clinical Trials In The United States

  • When looking for a clinical trial, keep in mind that there is no one source which lists every clinical trial in the United States.
  • Before starting your search, pull together the information needed to determine eligibility. Survivorship A to Z provides a list in the document in "To Learn More." You do not need a doctor's referral to enter most trials.
  • To learn about all clinical trials that could work for you, search through the available databases. A good place to start on is through the Colon Cancer Alliance web site: www.ccalliance.org offsite link. Go to “About Colorectal Cancer”, then “Resources”, then “Tools” to locate the Clinical Trials Matching Service. For additional information, see the document in “To Learn More.”
  • Before entering a clinical trial, be an informed consumer.
    • Learn the questions to ask. For instance, learn about your costs. The drugs in a clinical trial are free for participants but you may have to pay some costs, such as for check ups. Costs you have to pay may be covered by your health insurance.
    • Survivorship A to Z provides a list of questions to ask before joining a clinical trial. See “To Learn More.”
    • Ask your doctor for his or her opinion.

If no treatments or clinical trials are available for your situation in the U.S.

It is worthwhile to at least explore what may be available outside the United States.

Be sure to study any out-of-the mainstream treatment carefully before pursuing it - particularly if it means not taking a mainstream treatment that could be helpful.

Keep in mind the difference between drugs and treatments which have been scientifically studied or are being scientifically studied, and treatments which have not been subjected to scientific scrutiny.

Watch for phony treatments that have no scientific credibility. This is particularly true if you are asked to pay for experimental drugs or treatments.

Out of the mainstream treatments are generally not covered by health insurance.

What Are The Chances The Treatment Will Work?

As you may suspect from your previous experience, the answer depends entirely on your situation. Factors that influence the answer include:

  • The type of colorectal cancer you have.
  • The length of time between the original diagnosis and recurrence.
  • The aggressiveness of the cancer cell type.
  • Your age.
  • Your overall health status.
  • How well you tolerate treatment.
  • The length of time you are able to take treatment.
  • The types of treatment you get.

Ask your doctor about your specific situation.

NOTE: If the treatment doesn't work, read the documents in To Learn More about palliative care and about hospice care.

What If I Don't Want To Go Through Treatment Again?

Recurrences can become exhausting and discouraging.

It is up to you to decide whether to go through treatment again. There is no right or wrong. It is your life and you are in charge.

Before you decide not to take a treatment, consider the following:

  • Check for depression. It may be the depression, rather than you, that is evaluating the situation. Survivorship A to Z provides a list of symptoms to look for, as well as suggestions for treating depression. (See "To Learn More.")
  • Speak with your religious or spiritual advisor.
  • Speak with your closest loved ones.

Keep in mind that even if there is no cure for your colorectal cancer, treatments can help prolong life and possibly turn your cancer into a chronic condition like diabetes.

NOTE: No matter what your decision, there is no reason to be in pain. Pain can be controlled and possibly eliminated. This is known as Palliative Care. If your doctor cannot control your pain, there are Palliative Care specialists with whom you can consult.

Other side effects of your cancer can also likely be reduced or eliminated with the use of traditional medicine or complementary therapies. Speak with your doctor.

Do Your Best To Eat Healthy

To help maximize your body’s fighting ability, eat healthy with an emphasis on plant sources.

There are a variety of sources to learn about a healthy diet which is generally referred to as a cancer prevention diet. The gold standard is provided by the American Cancer Society. To learn about the diet, click here

In addition, speak with your cancer doctor or a dietitician/nutritionist about a diet that works specifically for your situation, including additional vitamins and supplements. For instance, it is generally recommended to take an aspirin a day to help prevent colorectal cancer. 

According to Dr. Mark Pochapin, a gastroenterologist who specializes in colorectal cancer and author of WHAT YOUR DOCTOR MAY NOT TELL YOU ABOUT COLORECTAL CANCER:

“Keeping tabs on your daily caloric intake is important (for survivors of colorectal cancer), since eating too much food stresses the digestive system. There is some evidence showing that a high level of calories in your diet, regardless of whether the source is fat, carbohydrate, or protein, may favor the development of cancer. In other words, the more food that passes through your colon, the higher your risk. Most people should eat no more than two thousand calories a day – an amount that helps keep pounds from piling on, especially if you stay active and exercise regularly.”

“Drinking enough water each day (at least eight glasses of pure water) is vital to the health of your colon – and indeed to your entire digestive system. Water helps separate stool from the mucous lining of your colon, assists in stimulating the muscular movement of your intestines, and keeps material flowing through your system at a health rate.”  (To learn about pure drinking water, click here.)

Be cautious about claims that a particular diet, food or supplement can prevent recurrence. Look for scientific proof rather than anecdotal evidence. Check what you find with your oncologist.

If eating healthy is a big jump for you, don’t try to do everything at once. Set goals for yourself and do your best to keep to them. For example, add a vegetable to your normal lunch at least 4 days a week. Then a 5th day. Etc.

If you find you are not keeping to your timeline, revise it so you get the feeling of accomplishment while helping your health.

NOTE:  Studies show that we are influenced by the behavior of the people close to us. It is likely to be easier to eat healthy if the people around you eat healthy. Helping your family unit eat healthy is something positive that can come from your cancer experience.

Be Active. Exercise

Our document about Exercise describes the importance of exercise, how to exercise smart, how to find programs that could work for you and similar subjects. With respect to colorectal cancer in particular: 

  • Exercise may also help prevent recurrence of colorectal cancer. Recent studies show that lack of physical activity increases the risk of developing colon cancer. This is in line with other studies which show that people who exercise regularly have about a 30-40 percent reduction in their risk of contracting colon cancer. Physical activity improves quality of life and diminishes emotional swings.
  • If you have urinary incontinence, exercises known as Kegel exercises can help. To learn more, click here
  • You can exercise with an ostomy. (For more information, click here.)

If you have special needs, there are exercise programs designed for people with cancer throughout the country.

How To Keep Exercising Over Time

Exercise can be difficult to sustain over time. Think about techniques to help keep you motivated. For instance:

  • Set up a system that reminds you periodically of why you exercise. For example, a posting on your refrigerator, or an alert that pops up on your computer every few weeks.
  • Find a buddy to exercise with. (One of the advantages of classes or gyms for people with cancer is the company and support of people in a similar situation). Note that an exercise buddy is not necessarily the same as a cancer buddy. (To find a cancer buddy, go to the site of the Colon Cancer Alliance offsite link)

For more information about exercise, see the document in "To Learn More."

NOTE: Check with your doctor before starting new exercise or increasing current exercise levels.

To Learn More

More Information

Exercise For Survivors

Do What You Can To Prevent Unnecessary Infection

Infections lower your disease fighting immune system’s ability to fight disease.

A few techniques have been shown to greatly reduce the risk of infection. For instance:

  • Keep your hands away from your face - particularly around your mouth, nose and eyes.
  • Wash your hands regularly. When you wash your hands, use soap and water for the amount of time it takes you to sing Happy Birthday.
  • Wash your hands before leaving the gym and after being in other highly trafficked areas.
  • Eat a healthy diet - such as the cancer prevention diet described in the document in “To Learn More.”
  • Store, cook and handle food safely.

For more information, see the documents in "To Learn More."




Medications, Vitamins And Supplements

  • Before agreeing to take any drugs, learn about the risks as well as the benefits.
    • Survivorship A to Z provides questions to ask before agreeing to take any drug. 
  • Do what you can to avoid medical errors
    • Start by obtaining a readable doctor’s prescription. If you can't read it, neither can the pharmacist.
    • Check the drug you receive against the prescription and make sure it looks like you expect. 
  • Avoid overmedication
    • Overmedication is all too common.
    • Ask your doctor if a lower dose will do the same job - particularly for drugs you continue to take over time.
  • Carry a list of your drugs all the time. Emergencies happen. Plus the list will be helpful each time you see a doctor or fill a prescription. Survivorship A to Z provides a form List Of Medications. (Be sure to include all supplements, herb and vitamins as well as drugs).
  • Have each newly prescribed drug checked for negative interaction with other drugs you are taking. 
    • Do not assume that this will happen automatically. 
  • Over-the-counter medications, supplements and vitamins need to be treated as if they are drugs.
    • Just because they are sold without a prescription does not mean that there is no risk.
  • Take care if you use herbs, vitamins or other supplements.
    • Learn the pros and cons, as well as the risks.
    • Keep in mind that these products are not subject to FDA approval. Therefore, there is no guarantee about their safety or effectiveness. 
    • There is not even a guarantee that the same mix of ingredients will be in each bottle – even for bottles from the same manufacturer.
  • Do not let price be the sole factor in determining what drugs to take or where to obtain them.  
    • Free or low cost drugs may be available.
    • The drug manufacturer likely has a patient assistance program that is not just for poor people.
    • When choosing where to buy drugs, think about what  happens if you need a refill in an emergency.? 
    • Keep in mind that a pharmacist can be a very important part of your health care team.  If necessary, you may be able to obtain drugs for free or very low cost.
  • If the drugs currently on the market don’t satisfy your needs, there may be newer drugs to consider that are still being tested for safety. Access to these drugs is through clinical trials – controlled tests where use of the drug is medically monitored. It is essential that you be fully informed before entering a clinical trial.
  • Live with drugs wisely.
    • Comply with prescribed orders. Non-compliance can be harmful. Time tested tips help if you have difficulty complying.
    • Do not share drugs.
    • Store drugs correctly (not in a medicine cabinet in the bathroom).
    • Travel well with your drugs. Carry a copy of your prescription. Carry an extra supply in case you get delayed.
  • Stay open. The decisions you make regarding medical care and treatment may change over time.