Moving on after treatment for colorectal cancer
For some people with colorectal cancer, treatment may remove or destroy the cancer. It can feel good to be done with treatment, but it can also be stressful. You may find that you now worry about the cancer coming back. This is a very common concern among those who have had cancer. (When cancer comes back, it is called a recurrence.)
It may take a while before your recovery begins to feel real and your fears are somewhat relieved. You can learn more about what to look for and how to learn to live with the chance of cancer coming back in Living With Uncertainty: The Fear of Cancer Recurrence.
For other people, the cancer may never go away completely. These people may get regular treatments to try to help keep the cancer in check. Learning to live with cancer that does not go away can be hard and stressful. It has its own type of uncertainty. Our document, When Cancer Doesn't Go Away, talks more about this.
Even if your treatment ends, your doctors will still want to watch you closely. During these visits, your doctors will ask about symptoms, do physical exams, and order blood tests or imaging studies (like CT scans or MRIs). Follow-up is needed to watch for treatment side effects and to check for cancer that has come back or spread.
Almost any cancer treatment can have side effects. Some may last for a few weeks or months, but others can be permanent. To some extent, how often you have follow up visits and tests will depend on the stage of your cancer and the chance of it coming back. Please tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them. Use this time to ask your health care team questions and discuss any concerns you might have.
It is also important to keep health insurance. While you hope your cancer won't come back, it could happen. If it does, you don't want to have to worry about paying for treatment. Should your cancer come back, our document When Your Cancer Comes Back: Cancer Recurrence helps you manage and cope with this phase of your treatment.
Medical history and physical exam
Your doctor will likely recommend getting a history and physical exam every 3 to 6 months for the first 2 years after treatment, then every 6 months or so for the next few years. People who were treated for early stage cancers may need less frequent exams.
In most cases, your doctor will recommend a colonoscopy within a year after surgery. If this is normal, it should be done again in 3 years. If that exam is normal, then future exams should be done about every 5 years.
Whether or not your doctor recommends imaging tests will depend on the stage of your disease and other factors. CT scans may be done regularly, such as once a year, for those at higher risk of recurrence, in the first 3 years after treatment. People who had tumors in the liver or lungs removed might be tested even more often.
Blood tests for tumor markers
Carcinoembryonic antigen (CEA) and CA 19-9 are tumor markers - substances found in the blood of some people with colorectal cancer. Tests for one or both of these are helpful for some patients. Doctors often check levels of these markers before treatment begins. If they are high at first and then go down to normal after surgery, they can be checked again when you come in for follow-up. If the tumor marker level goes up again, it can be a sign that the cancer has come back, and tests may be done to try to locate the site of cancer. Tumor markers tend to be most useful in the first 2 years after treatment, when the cancer is most likely to come back.
If the cancer does recur at some point, further treatment will depend on where the cancer is found, what treatments you've had before, and your health. For more information on how recurrent cancer is treated, see the sections "Treatment by stage of colon cancer" and “Treatment by stage of rectal cancer” in our document Colorectal Cancer. To learn more about dealing with a recurrence, you may also want to see our document, When Your Cancer Comes Back: Cancer Recurrence.
For patients with a colostomy or ileostomy
If you have a colostomy or ileostomy, you may feel worried or isolated from normal activities. Whether your colostomy or ileostomy is temporary or permanent, an enterostomal therapist (a health care professional trained to help people with ostomies) can teach you about the care of your colostomy or ileostomy. You can also ask the American Cancer Society about programs offering information and support in your area. For more information, see our documents Colostomy: A Guide and Ileostomy: A Guide.
Seeing a new doctor
At some point after your cancer is found and treated, you may find yourself in the office of a new doctor. It is important that you be able to give your new doctor the exact details of your diagnosis and treatment. Make sure you have this information handy and always keep copies for yourself:
- A copy of your pathology report from any biopsy or surgery
- If you had surgery, a copy of your operative report
- If you were in the hospital, a copy of the discharge summary that the doctor wrote when you were sent home from the hospital
- If you had radiation treatment, a copy of your treatment summary.
- If you had chemo or targeted therapies, a list of your drugs, drug doses, and when you took them
- Copies of imaging studies such as CT scans, MRI scans, or PET scans. Often these can be placed on a DVD
The doctor may want copies of this information for his records, but always keep copies for yourself.
Last Medical Review: 06/05/2012
Last Revised: 01/17/2013