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Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

Overview

Even if your oncologist tells you that you are “cured,” there is always the possibility of a recurrence or that another cancer will appear. Although a recurrence or a new cancer are treatable, it is best to avoid them if possible.  Use your experience as a spur to do your best to help prevent your colon from developing another polyp or cancer. It may take thought and work in the beginning, but it gets easier as time goes on.

If there is no evidence of disease: Even if your oncologist tells you that you are “cured,” there is always the possibility of a recurrence or that another cancer will appear. As stated by Dr. Mark Pochapin, the noted colorectal specialist:

“Cure" is a tough word when we're talking about cancer. No one knows if cancer is ever really cured. But it is sometimes pushed back so far it never grows again. We call that "remission" or "long term survival." Your chances of surviving for a long time depend on the stage of your cancer and how successful the treatments are. Obviously, the lower the stage and the less the cancer has grown, the better the odds. Still, no one can confidently predict any of those things. Your best bet is to fight as hard as you can and live every minute to the fullest. 

It may take thought and work in the beginning, but it gets easier as time goes on.

To learn about what to expect and what to do about it, see:

Follow Up Visits and Tests

When treatment was finished, you should have received a colorectal cancer follow-up plan If you didn’t get a plan, it is never too late to ask your cancer doctor for one or to get one from a nearby Survivor clinic at an NCI certified cancer cente offsite linkr. Your insurance is likely to cover these services.

A follow-up plan includes dates for follow-up appointments with your oncologist(s), tests you should take, and symptoms to watch for. The timing of  doctor visits, as well as what happens during those visits, varies depending on the treatment you had, your particular health situation, and other individual factors.

Prepare for follow up visits with your doctors. 

  • Keep track of follow-up appointments in whatever way works for you. People have been known to keep track in a diary, on a wall calender, on a computer or on a smart phone.
  • Keep track of your symptoms, if any. Survivorship A to Z provides a Symptom Diary 
  • Keep an ongoing list of questions and concerns. Survivorship A to Z provides a Prioritizer to help you keep track. Add to your list a question about getting a cutting edge treatment by joining a clinical trial. Even if you are in complete remission, there may be clinical trials of agents that may prevent recurrence of colorectal cancer. If you are in partial remission, there may be trials which are aimed at preventing cancer growth. Also ask your oncologist for the statistical odds that your cancer will recur as long term survival rates. Keep in mind that the response will be about what happens statistically, not what happens to any particular individual – particularly you. Also keep in mind that a recurrence is not necessarily a death sentence. A recurrence can be treated. (To learn more, click here) However, this information can be useful for planning purposes, particularly financial planning. To learn more about the meaning of statistics, click here. 
  • Check your health insurance to find out how much of each follow-up visit is covered and how much you will have to pay. For information about understanding your policy, and how to maxmiize use of it, click here
  • Know what doctors mean when they say where you are with respect to cancer. For tips, click here.

If results from an exam are negative, or if liver lesions or lung spots appear, keep in mind that only further testing or a biopsy is definitive. 

If side effects become worse than anticipated or last longer than expected or if any of the symptoms listed in the section of this article about when to call your doctor appear, do not wait until the next exam to contact both your oncologist and your primary care doctor. Don’t worry about being called a “worry wort” or some such. It is much better to err on the side of safety. This is your life we’re talking about.

If you have more than one doctor

  • Continue to see your primary care doctor and other specialists. Your primary care doctor is charged with overseeing your entire medical condition, helping you keep your system in maximum disease fighting shape, and for being on the lookout for health conditions. It may be difficult to accept, but other things can happen. As you learned with colorectal cancer, the earlier you catch a medical condition, the better.
  • Make sure your oncologist and other medical specialists keep your primary care doctor up-to-date. For a list of information that should be in your medical file with your primary doctor, click here. 
  • If you haven’t already, decide which of your doctors is in charge of your overall health. It could be your primary care doctor, a gastroenterologist or one of your oncologists. Be sure he or she agrees to the position. Remind each doctor you see after each visit to report notes about each appointment to your primary doctor. If you are keeping your own copy of your medical record (which we recommend that you do), a copy should be sent to you as well.

Get screening tests recommended by the American Cancer Society. They are described in a section below.

Drugs

  • Comply with drug regimens. Do not take a drug holiday without talking with your doctor first.
  • Save money when purchasing drugs. Store and dispose of drugs safely.
  • Ask whether you should be taking vitamins and supplements such as the ones described in the vitamins section of this article.  If so, which brand does your doctor recommend? 
  • For a primer about drugs, including purchasing and tips for complying with a drug regimen, click here.

Protect the future

While it’s not pleasant to think about, there is no guarantee that your colon or rectal cancer will not return or that another cancer will not appear or that something else will not happen. You can help to heal optimally, help prevent another cancer occurrence, maximize your body's fighting ability, and help feel in control on a daily basis by living an expanded cancer prevention lifestyle. A cancer prevention lifestyle doesn’t take the place of medical treatment. Such a lifestyle does make treatments more effective and help prevent recurrences.

Examples of a cancer prevention lifestyle include the following: To learn practical information about each of these tips, click on the tip.

  • A healthy diet. (To laern about a cancer prevention diet, click here.)
  • Get rest by pacing yourself during the day and sleeping at night.
  • Regular exercise  
  • Relieve pain.
  • Avoiding smoke – both smoking and second hand smoke.
  • Reduce exposure to carcinogens (substances that can cause cancer)
  • Maintain proper weight
  • Being alert for symptoms that COULD indicate a return of your cancer
  • Don’t give up on hope.

We strongly recommend that you look at the rest of the factors that are part of a cancer prevention diet and lifestyle. Some of the tips are likely to surprise you. Please click here

And…

  • Talk with your doctor about whether you could have a gene that makes you a likely candidate for colorectal cancer. If you have the gene, inform your brothers and sisters and ask about having your children tested.  Existing sites help educate people about the risks involved, and what to do about them. For a list, click here. offsite link
  • Now that you’ve been dealing with the medical system and hopefully recognize how helpful knowledge is to getting what you need, take a few moments to think about what to do if there is a medical emergency, or how to continue medical care if there is a natural disaster. In case you need it in the future, keep in mind that Survivorship A to Z provides information about how to maximize time in a hospital, including staying safe.
  • If you have left over drugs or supplies that you no longer need such as wig, consider donating them or at least disposing of drugs properly. (For information, click here)
  • If you haven’t already, now is the time to assure that you keep control of your medical care even if something happens and you become unable to speak for yourself. The documents you’ll need to think about are called Advance Healthcare Directives and Advance Mental Health Directives. They are free and easy to execute. While you’re at it, write a Will if you don’t have one, or check your existing will to be sure it is up-to-date. For information, see the documents in To Learn More.
  • While treatment may be long over, medical expenses may still linger or new ones may be incurred. See: How to Maximize Use Of Your Health Insurance, Colorectal Cancer Finances)  and How To Deal With A Financial Crunch. While you’re at it, write a Will if you don’t have one, or check your existing will to be sure it is up-to-date. For information about wills, click here  

NOTE: Call your doctor right away if you have symptoms listed in If These Symptoms Appear, Call Your Doctor.”  

Vitamins and Supplements To Consider Taking

The following supplements and vitamins have proved to be useful in reducing the likelihood of a recurrence of colorectal cancer. Ask your oncologist and primary care doctor about taking them before taking any vitamins or supplements (or over-the-counter drugs).

  • For women: at least 1,200 milligrams a day of calcium may reduce the likelihood of a recurrence and minimize the number of polyps if it does return. (Calcium is not recommended for men because it can increase the risk of prostate cancer).
  • 400 micrograms of folic acid when not taking cancer treatment.
  • Up to 800 IUs daily of Vitamin D if you do not get exposure to sunlight or enough Vitamin D from your diet.

Also consider taking an aspirin each day. Research shows that aspirin helps to prevent colorectal cancer. Keep in mind that aspirin can result in gastrointestinal bleeding which can be serious.

NOTE: Also consider using complementary therapies such as massage to ease stress. 

If These Symptoms Appear, Call Your Doctor

If any of the following symptoms appear, or if symptoms occur that are not on the list but you are concerned anyhow, contact your doctor without delay. (See the document in “To Learn More.”) Let your doctor decide whether a symptom is important.

  • Back pain for two days.
  • Bleeding from the rectum (either dark or bright red blood).
  • Continuous abdominal pain, bloating or fullness.
  • Bowel movements as follows:
    • Constant urge to have a bowel movement, even after you just had one
    • Stool quality or color changes
    • Excess mucus secretions that accompany a bowel movement
  • Constipation that is ongoing that does not respond to laxatives or other remedies described in our document about constipation. (link to A1413)
  • Coughing
    • Coughing that doesn’t go away after three days.
    • Any coughing that produces green or yellow sputum.
  • Diarrhea that is ongoing despite management tips which you can find by clicking here.
  • Dizziness
  • Eyes or skin seem yellow or suntanned
  • Fever more than 100.5 degrees , or shaking chills.
  • General malaise or fatigue or lack of appetite for more than a few days.
  • Headache.
  • Nausea or vomiting that is ongoing. (To learn management techniques, click here)
  • Neck stiffness
  • Night sweats
  • Pelvic pain
  • Severe chills
  • Trouble breathing: call 911.
  • Urine
    • Blood in the urine
    • Decreased urine flow
    • Difficulty urinating
    • Burning or pain while urinating
  • Weight loss that is unexplained

NOTE:

  • Report all unanticipated changes in your health to primary care physician as well as to your oncologist. The symptoms could relate to your cancer or to something else entirely.  An update by fax or email will do.   
  • If you experience fatigue, work with your doctor to try to determine the cause. For example, fatigue could be a symptom of:
    • Depression: A psychologist can help improve functioning, especially one knowledgeable about the impact of cancer. Psychotropic medication may also help.
    • Hypothyroidism: Thyroid tests usually done routinely may not be specific enough for people with cancer treatment in their medical history. If thyroid problems are suspected, a specialist known as an endocrinologist will be able to accurately diagnose and treat them.
    • Anemia: A simple blood test can determine iron deficiency anemia. Some people may need iron supplementation. A change in eating habits may help.
    • Heart problems.
    • For tips about dealing with fatigue, click here.

To Learn More

Follow Up Visits & Tests For Colon and Rectal Cancer

Follow-up visits with your oncologist will continue.  The timing of  those visits, as well as what happens during those visits, varies depending on the treatment, your particular health situation and other individual factors.

As you review the following, keep in mind that blood test results generally vary from lab to lab. Exams can result in a false positive or false negative. Only additional testing or a biopsy is definitive.

At the least, a follow-up visit usually involves:

  • A review of your medical history
  • A thorough physical examination including a rectal examination (insertion of the gloved index finger into the rectum)
  • A discussion about your symptoms since the last visit (our Symptoms Diary can help keep track of symptoms from visit to visit. The push of a button turns the information into an easy to read graph. Click here 
  • Taking blood for blood tests such as the CEA or CA19-9 blood test. 
  • The doctor will likely order some follow-up tests. Common follow-up tests include:
    • Colonoscopy  (often recommended six months to one year after surgery)
    • Barium enema (a series of x rays of the colon or rectum that are taken after the patient is given an enema containing a contrast medium (usually barium sulfate). The contrast medium generally is described as tasting like chalk. Air can be instilled into the colon along with the barium contrast medium to further define structures of the large bowel and rectum.  Barium enemas are frequently replaced by a colonoscopy.
    • Chest x-rays 
    • If symptoms warrant, a CT scanMRI, or Ultrasound
    • Many doctors order a PET scan for the early detection of recurrent colorectal cancer.
  • A discussion period  to discuss with your doctor:
    • Your progress
    • Your questions and concerns. We provide a prioritizer to help you keep track of questions and concerns. A button reorders your entries before the appointment according to your priorities. For information about how to effectively work with a doctor, see “To Learn More.
    • The doctor’s concerns

NOTE: If results from an exam are negative, or if liver lesions or lung spots appear, keep in mind that only further testing or a biopsy is definitive.

How To Deal With Ongoing Or New Symptoms

Summary

It is possible that the physical and mental effects of chemotherapy or radiation will continue  - or new symptoms may show up. For example:

  • If you have been experiencing erectile dysfunction, it is likely to continue. To learn the steps for dealing with erectile dysfunction, click here
  • If you had radiation or chemotherapy, fatigue may continue.  For coping techniques, click here. Depression may be ongoing or recurrent.  Click here  for information about coping with depression. Click here for information about coping with holiday depression.
  • You may even experience post traumatic stress disorder or a tingling or pain in your hands or feet (peripheral neuropathy).
  • If you had chemotherapy, it is not unusual for a reaction known as "chemo brain" to continue or even to show up after treatment ends. For information about coping with chemo brain, click here
  • If you had radiation, a condition known as “radiation recall” may appear.

If any lingering effects interfere with your life or seem severe, contact your cancer doctor or other health care provider.

NOTE:

  • Report all unanticipated changes in your health to primary care physician as well as to your oncologist. The symptoms could relate to your cancer or to something else entirely.  An update by fax or email will do.   
  • If you experience fatigue, work with your doctor to try to determine the cause. For example, fatigue could be a symptom of any of the following conditions:
    • Depression: A psychologist can help improve functioning, especially one knowledgeable about the impact of cancer. Psychotropic medication may also help.
    • Hypothyroidism: Thyroid tests usually done routinely may not be specific enough for people with cancer treatment in their medical history. If thyroid problems are suspected, a specialist known as an endocrinologist will be able to accurately diagnose and treat them.
    • Anemia: A simple blood test can determine iron deficiency anemia. Some people may need iron supplementation. A change in eating habits may help.
    • Heart problems.

More information about this subject is contained in the Main Article in "To Learn More."

Screening Tests Recommended By The American Cancer Society

For women: 
  • All women should get an annual Pap test or every two years using the liquid-based pap test.
  • Women age 20 – 39: get a clinical breast exam.
  • Women starting age 40, get a yearly mammogram
Men:
  • Starting at age 40, get a rectal prostate exam.
  • Starting at age 50, discuss with your doctor whether to be tested for prostate cancer. Research has not yet proven that the potential benefits of testing outweigh the harms of testing and treatment. If you are African American or have a father or brother who had prostate cancer before age 65, you should have this talk with your doctor starting at age 45.

Where Are You Now? What Doctors Say And What They Mean

 “You’re cured” or “You’re in complete remission”:   Both of these expressions mean that your doctor cannot find any cancer. They do not mean that you are cured for good. Get a Colorectal cancer follow-up plan from your doctor – and keep to the appointments and tests described in it. Early detection of a return makes positive treatment results more likely. (For information about follow-up plans, see the document in To Learn More). 

 “You’re in partial remission”:  

  • The tumor(s) responded to treatment. The tumor is either smaller or stopped growing. The tumor is not eliminated completely.
  • Speak with your doctor and other specialists to find out if there is another treatment you should be taking.
  • At the least, get a cancer follow-up plan from your doctor. (For information about follow-up plans, see the document in To Learn More).

 “The cancer is unchanged”: 

  • The tumor did not decrease, but is no longer growing either. 
  • Speak with your doctor and other specialists to find out if there is another treatment you should be taking. Ask about cutting edge treatments that are only available through a clinical trial. At the least, get a cancer follow-up plan from your doctor. (For information about clinical trials and follow-up plans, see the documents in To Learn More). 

“Your tumor is still growing”: 

  • The treatment did not stop tumor growth.
  • Speak with your doctor and other specialists to find out if there is another treatment you should be taking – including cutting edge treatments available through clinical trials. At the least, get a cancer follow-up plan from your doctor. (For information about clinical trials and follow-up plans, see the documents in To Learn More). 

“The cancer has metasticized”: During treatment, your doctor may learn that your cancer has spread beyond the initial site. Speak with your doctor and other specialists to find out if there is another treatment you should be taking – including cutting edge treatments available through clinical trials. For information about clinical trials, how to find them and how to assess them, see the document in To Learn More.”

If You Had Surgery

Follow-Up

After surgery, tests and imaging studies such as a CT scan, an MRI test or a PET scan are usually repeated every three months for a number of years, then six months for more years, than once a year or every few years.

Side Effects

After surgery for colorectal cancer, the following are common side effects and complications to be aware of. Keep in mind that there is no way to predict what symptoms a particular individual will have or to what degree.

  • Abdominal pain and cramping. Abdominal or pelvic supportive tissues can be stretched, constricted or weakened.
  • Bowel movements can be difficult or painful .
  • Damage to nerves can cause pain or bowel, sexual and urinary dysfunction.
  • Diarrhea. If you had the entire colon removed, there is no cure for diarrhea. Changes in diet may lessen the frequency or looseness of your stool. For everyone else, click here to learn how to cope with diarrhea.
  • Erectile dysfunction for sexual purposes. There are steps to take to minimize the effect of erectile dysfunction. Also keep in mind that sex is not the only means of intimacy.  To learn more, click here. 
  • Fatigue may continue for years after treatment. Fatigue generally at least continues for at least as long as the time between diagnosis and end of treatment. There are tips for coping with fatigue (For information about dealing with fatigue, click here.)
  • Fistulae may develop.
    • Fistulae are abnormal tube-like formations between 2 organs. 
    • Fistulae can be operated on.
  • Hernias at or near the incision site. 
    • A hernia is when an organ protrudes through the wall of the cavity which contains it. 
    • Hernias can be fixed with an operation.
  • Incontinence –  possibly involuntary urination or defecation or both. For practical information, click here
  • Internal abscesses can form. An abscess is a painful collection of pus that is caused by a bacterial infection.
  • Kidney infections
    • If not treated promptly, a kidney infection can permanently damage your kidneys or the bacteria can spread to your bloodstream and cause a life-threatening infection. 
    • Kidney infections can be treated with antibiotics. 
    • According to the Mayo clinic, symptoms include: Fever, Back, side (flank) or groin pain, Abdominal pain, frequent urination, a strong, persistent urge to urinate, burning sensation or pain when urinating and/or pus or blood in your urine.
  • Lymphedema could appear. 
    • Lymphedema is an accumulation of lymph fluid that may cause swelling in a nearby limb such as an arm or a leg (and sometimes elsewhere in the body). When the lymph fluid is unable to drain, it remains in the soft tissue of the lymph node or area where infections can develop. 
    • Lymphedema is uncomfortable and can also be unsightly. 
    • New medical techniques make lymphedema less likely to appear than previously. Still, it is advisable to do what you can to avoid lymphedema. For information, click here. 
  • Psychological issues such as anxiety and depression. (See the documents in "To Learn More.")
  • Scar tissue that immobilizes or obstructs bowels (adhesions).
    • There could be dysfunction of kidneys and ureters because of blockages caused by adhesions.
    • Symptoms from adhesions vary depending on the tissues involved. Adhesions can be painful.
    • In the gastrointestinal tract, bowel obstructions may occur. Mechanical small bowel obstruction can be the most severe effect of adhesions. Adhesions in the uterus and in the pelvis, and adhesions which block the ends of the fallopian tubes, can cause infertility and possibly other reproductive problems.

While the risk is small, there is an increased risk of developing a new cancer at the site which was operated on. This is just one more reason to do your best to live a healthy, cancer prevention lifestyle and to keep follow-up appointments.

Contact your cancer doctor if:

  • You experience any of the above conditions and the tips provided in related documents don’t help.
  • If any of the conditions are so severe that they interfere with your daily living.
  • Unexpected symptoms appear. Also let your primary care doctor know about these symptoms in case they do not relate to colorectal cancer.
  • You experience any of the symptoms listed in the section:   “If These Symptoms Appear, Contact Your Doctor.” 

If You Had CyroSurgery

Experience with cryosurgery is still limited so the longer term results are not fully known. 

Side effects which are currently known are as follows. Keep in mind that there is no way to predict what symptoms a particular individual will have or to what degree.: 

  • Incontinence: Incontinence has been reported in only a tiny percentage of men who had not had prior radiation. Men who had prior radiation had an approximately 50% change of having some degree of incontinence after the procedure. Urinary control generally improves for most men.
    • For an exercise to help with urinary control, click here. 
    • For practical ways to deal with incontinence, click here
  • Erectile Function: If erectile dysfunction occurs, it may be temporary or permanent. There are techniques to treat erectile dysfunction. Click here

NOTE: Do not delay contacting your doctor if you experience any of the symptoms listed in the section:   “If These Symptoms Appear, Contact Your Doctor

If You Had Radiation

Tests

Tests and imaging studies such as a CT scan, an MRI test or a PET scan are usually repeated periodically.

Side Effects

After radiation treatment for colorectal cancer, the following are common side effects and complications to be aware of. Keep in mind that there is no way to predict what will happen with any particular individual.

  • Abdominal pain.
  • Blood counts may remain low for years.
    • Medications are available to raise red and white blood cell levels.
    • If white blood cell count is low, do what you reasonably can to avoid infection. To learn how, click here. 
  • Bowel cramping and intestinal blockages can continue for a long period of time. For some people, it is permanent.
  • Diarrhea. 
    • If you had the entire colon removed, there is no cure for diarrhea. Changes in diet may lessen the frequency or looseness of your stool. 
    • For everyone else, click here to learn how to cope with diarrhea. 
  • Fatigue may continue for years after treatment. 
    • Fatigue generally at least continues for at least as long as the time between diagnosis and end of treatment. 
    • For tips for coping with fatigue, click here.
  • Fertility may recover years after radiation, or it may never recover.
  • Hair
    • The hair on your head will not be affected by radiation for colorectal cancer. However, with radiation treatment to the pelvis, there may be a thinning out of the hair on your lower abdomen or pubic area or you may lose hair entirely.
    • If you do lose hair, it will generally not grow back. If it does, it may be a different color or texture. 
  • Incontinence is not usually a long term effect of radiation therapy. There may be some difficulty in urination, including pain and increased frequency. For practical ways to deal with incontinence, click here. 
  • Neuropathy 
    • Neuropathy shows up as pain, burning, weakness or numbness in the hands or feet 
    • Neuropathy may continue for weeks or months. If you had platinum based therapy (for example, Oxaliplatin), neuropathy may continue for years. 
    • For information about neuropathy, and what to do to help cope, click here
  • Psychological issues such as anxiety and depression may appear short term or long term. For information and tips about each issue and what to do about them, click on the link.
  • "Radiation recall" may cause the treated area to become sore. If you receive chemotherapy in the future, you may experience “radiation recall” depending on the specific drug used To learn about radiation recall, click here.
  • Skin change
    • The radiated area may continue to be sensitive for a good while. 
    • If the color and texture of your skin change, your doctor can let you know if it will revert to closer to what it was before the treatment .

Men

  • Erectile function: 
    • If you experience erectile dysfunction during treatment, it may continue. Erectile dysfunction can go on for 2 – 5 years. For a small percentage of men, it may become permanent. 
    • To learn about erectile dysfunction and what can be done about it temporarily or permanently, click here
  • Orgasms:  After radiation therapy, there may be a change in the orgasmic ejaculate sensation (how you feel when you cum).
    • The ejaculation is often described as different than that was encountered prior to the treatment.
    • There will be ejaculation of seminal fluid.  However, there will be a permanent decrease in semen volume.

Contact your cancer doctor if:

  • You experience any of the above conditions and the tips provided in related documents don’t help.
  • If any of the conditions are so severe that they interfere with your daily living.
  • Unexpected symptoms appear. Also let your primary care doctor know about these symptoms in case they do not relate to colorectal cancer.

Also contact your cancer doctor if experience any of the symptoms listed in the section: “If These Symptoms Appear, Contact Your Doctor” 

If You Had Radiation Seed Treatment (Brachytherapy)

Most radiation is given off during the first 3 months after the procedure. Most side effects are experienced during that period of time. 

The seeds are left in permanently, but lose some energy every day until all energy is gone. The seeds do not transmit rays outside your body. 

Follow Up Tests 

Tests and imaging studies may include a CT scan, an MRI test or a PET scan

Side effects 

Following are side effects which are common with radiation seed treatment. Keep in mind that there is no way to predict what symptoms a particular individual will have or to what degree.

  • Diarrhea:  
    • Persistent diarrhea after radiation is common. 
    • If you had the entire colon removed, there is no cure for diarrhea but changes in diet may lessen the frequency or looseness of your stool. 
    • For everyone else, click here to learn how to cope with diarrhea.
  • Erectile function
    • There are remedies for erectile dysfunction. For information, click here.
    • Also keep in mind that sex is not the only form of intimacy. See “To Learn More.”
  • Fluid retention: 
    • The build-up of fluid in the legs and elsewhere in the body may signal lymphedema  - swelling of a body part due to lymphatic fluid that cannot move. 
    • Less commonly, a build-up of fluid could also signal heart, liver or kidney failure. 
    • The build-up of fluid in the abdomen or chest may signal a recurrence of disease or a recurrence of disease. 
    • If your doctor gave you instructions to follow for reducing the possibility of lymphedema, follow those instructions for the period indicated. To learn about lymphedema, click here.
  • Hair loss. 
    • Sometimes hair loss in the radiated area is not evident for months until the hair that is there falls out and new hair does not grow. 
    • Hair loss due to radiation does not regrow.
  • Psychological issues such as anxiety and depression may appear short term or long term. For information and tips about each issue and what to do about them, click on the link.
  • Urinary symptoms
    • The risk of long term incontinence is extremely low.
    • To learn tips for dealing with incontinence, click here.  

NOTE: Do not delay contacting your doctor if you experience any of the symptoms listed in the section:  “If These Symptoms Appear, Contact Your Doctor

If You Had Chemotherapy

Tests

Tests and imaging studies such as a CT scan, an MRI test or a PET scan are usually repeated periodically.

Side Effects

After chemotherapy treatment for colorectal cancer, the following are common side effects and complications to be aware of. Keep in mind that there is no way to predict what side effects any particular person will experience.

  • Abdominal pain and cramping.
  • Blood counts may remain low for years.
    • Medications are available to raise red and white blood cell levels.
    • If white blood cell count is low, do what you reasonably can to avoid infection. To learn how, click here.
  • Bowel cramping and intestinal blockages can continue for a long period of time. For some people, it is permanent. 
  • “Chemo brain” 
    • Chemo brain is a general fuzziness in thinking and recall.
    • Chemo brain may continue from during treatment, or it may show up. Chemo brain will likely go away, although for some people it is permanent. 
    • For information about how to reduce the effect of chemo brain, click here.
  • Diarrhea. If you had the entire colon removed, there is no cure for diarrhea. Changes in diet may lessen the frequency or looseness of your stool. For everyone else, click here to learn how to cope with diarrhea. 
  • Fatigue may continue for years after treatment. Fatigue generally at least continues for at least as long as the time between diagnosis and end of treatment. To learn tips for coping with fatigue, click here.
  • Fertility: may improve over years following treatment, or it may never recover. For information about fertility, for men, click here. For women, click here.
  • Neuropathy 
    • Neuropathy is pain, burning, weakness or numbness in the hands or feet
    • If you had platinum based therapy (for example, oxaliplatin), neuropathy may continue for years. For information, click here.
  • Psychological issues such as the following. For information and tips about what to do about each issue, click on the link.

Contact your cancer doctor if:

  • You experience any of the above conditions and the tips provided in related documents don’t help.
  • If any of the conditions are so severe that they interfere with your daily living.
  • Unexpected symptoms appear. Also let your primary care doctor know about these symptoms in case they do not relate to colorectal cancer.
  • You experience any of the symptoms listed in the section:   “If These Symptoms Appear, Contact Your Doctor

If You Had Chemotherapy And Radiation Treatment Together

Tests

Tests and imaging studies such as a CT scan, an MRI test or a PET scan are usually repeated periodically.

Side Effects

After combined chemotherapy and radiation treatment for colorectal cancer, the following are common side effects and complications to be aware of. Please keep in mind that there is no way to predict what side effects any particular individual will experience, or to what degree.

  • Abdominal pain and cramping .
  • Diarrhea. If you had the entire colon removed, there is no cure for diarrhea. Changes in diet may lessen the frequency or looseness of your stool. For everyone else, click here to learn how to cope with diarrhea.  
  • Fatigue may continue for years after treatment. 
    • Fatigue generally at least continues for at least as long as the time between diagnosis and end of treatment. 
    • To learn tips for coping with fatigue, click here.
  • Psychological issues such as the following. For information and tips about what to do about each issue, click on the link.

For additional side effects which could result from chemotherapy, click here. For effects which could result from radiation treatment, click here.

NOTE: Do not delay contacting your doctor if you experience any of the symptoms listed in the section:   “If These Symptoms Appear, Contact Your Doctor”

What Five Year Survival Means

5-years used to be an indication that people were “cured” of cancer because so few people lived that long after a diagnosis. With people living longer and longer these days, the 5 year mark has lost much of its significance.

Today, 5-year survival rates are used by medical scientists as a simple measure that allows them to compare outcomes of different treatments. They are also used by doctors to discuss a patient's prognosis in general. 

Surviving 5 years after treatment is an encouraging landmark. The longer you survive, the better your chances of remaining cancer free. However, 5-year survival has no medical significance as such.

If Treatment Didn't Work

If there are still signs of colorectal cancer, don’t give up.

The higher the number of the stage at diagnosis, the more likely you will need more than one treatment to get rid of cancer.

If you underwent chemotherapy, there are other drugs available and other combinations of drugs. You can also try cutting edge treatments available through Clinical Trials. To learn about clinical trials, click here.  

If the cancer cannot be eliminated completely, you can still live for years – enough time for another treatment to come along from the world’s constantly improving medical system. For more information about advanced cancer, including factors to consider when thinking about ongoing treatment, click here

Even if you had a second opinion before, this is a good time to get a second opinion from the best. (Most health insurance pays for second and even third and fourth opinions).

  • Consider getting an opinion from a NCI certified comprehensive cancer center. NCI centers use a multi-disciplinary approach in which a team of doctors with different backgrounds review your case. If travel is difficult, you may be able to send copies of your medical records. Since pathology reports may contain errors, you will need slides of your cancer which are easy to obtain. To locate a NCI comprehensive cancer center, click here offsite link.
  • Free transportation may be available. Click here.
  • The hospital or the American Cancer Society may have free lodging available. To contact the American Cancer Society, call 800.ACS.2345

Redouble your efforts to lead a cancer prevention lifestyle including eating well, exercising and getting appropriate rest. For more information about a cancer prevention lifestyle, click here. Also take the other steps described in the summary of this document to maximize your body’s fighting ability.

Never, never give up hope.

NOTE:  If your doctor gives you a short life expectancy, keep in mind that unless you are in the last week or so of life, it is only an estimate based on statistics. Statistics are about what happens to large numbers of people based on what has happened – not what will happen with current and new medical technology – much less what will happen to any particular individual.  To learn more about statistics, click here.