Although the small intestine makes up the largest part of the gastrointestinal (GI) tract, small intestine cancers are rare in the United States. In fact, they account for fewer than 1 in 10 cancers of the gastrointestinal (GI) tract, and fewer than 1 in 100 cancers overall.

The American Cancer Society estimates for these cancers in the United States for 2018 are:

• About 10,470 people in the United States will be diagnosed with some type of small intestine cancer.
• About 1,450 people will die of small intestine cancer.

Cancers of the small intestine tend to occur more often in older people. They are most often found in people in their 60s and 70s.

Visit the American Cancer Society’s Cancer Statistics Center for more key statistics.

It’s important to have honest, open discussions with your cancer care team. Ask any question, no matter how minor it might seem. For instance, consider these questions:

When you’re told you have a small intestine cancer

• What type of small intestine cancer do I have? How might this affect my treatment and outlook?
• Where is the cancer located?
• What is the stage (extent) of my cancer, and what does that mean for me?
• Will I need any other tests before we consider treatment options?
• Will I need to see any other types of doctors?
• If I’m concerned about costs and insurance coverage for my diagnosis and treatment, who can help me?

When deciding on a treatment plan

• How much experience do you have treating this type of cancer?
• What are my treatment options?
• What do you recommend and why?
• What is the goal of the treatment?
• Should I get a second opinion? How do I do that? Can you recommend someone?
• Based on what you’ve learned about my cancer, what is my outlook?
• How quickly do we need to decide on treatment?
• What should I do to be ready for treatment?
• How long will treatment last? What will it be like? Where will it be done?
• What risks or side effects are there to the treatments you suggest?
• Will treatment affect my daily activities?
• How likely is it that the cancer will come back after treatment? Is there anything I can do to lower this risk?

During treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but getting answers to the ones that do may be helpful.

• How will we know if the treatment is working?
• Is there anything I can do to help manage side effects?
• What symptoms or side effects should I tell you about right away?
• How can I reach you (or someone from your office) on nights, holidays, or weekends?
• Do I need to change what I eat during treatment?
• Are there any limits on what I can do? 
• Should I exercise? What should I do, and how often?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?

After treatment

• Are there any limits on what I can do?
• What symptoms should I watch for?
• What type of follow-up will I need after treatment?
• How will we know if the cancer has come back? What should I watch for?
• What will my options be if the cancer comes back?
• Where can I find more information and support?

Along with these sample questions, be sure to write down any others you want to ask. For instance, you might want information about recovery times so that you can plan your work or activity schedule. Or you might want to ask about clinical trials that might be right for you.

Keep in mind that doctors aren’t the only ones who can give you information. Other health care professionals, such as nurses and social workers, can answer some of your questions. To learn more about speaking with your health care team, see The Doctor-patient Relationship.
 

For some people with small intestine cancer, treatment can remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer coming back. When cancer comes back after treatment, it is called a recurrence. This is a very common concern if you've had cancer.

For some people, the cancer may never go away completely. They may get regular treatments, such as chemotherapy, radiation therapy, or other therapies to try to help keep the cancer in check and to help relieve symptoms. Learning to live with cancer that doesn't go away can be difficult and very stressful. It has its own type of uncertainty. 

Follow-up care

Whether you have completed treatment or are still being treated, your doctors will still want to watch you closely. It’s very important to go to all follow-up appointments, as small intestine cancers can sometimes come back after treatment.

Some treatment side effects might last a long time or might not even show up until years after you have finished treatment. Your doctor visits are a good time to ask questions and talk about any changes or problems you notice or concerns you have.

Exams and tests 

During your follow-up visits, your doctor will ask about symptoms, examine you, and may order blood tests or imaging tests like CT scans. Your visits will likely be at least once every few months at first. The time between visits might then be extended over time if there are no signs that the cancer has returned. 

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include: 

• A summary of your treatment
• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of the cancer progressing or coming back?

If you have (or have had) a small intestine cancer, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of small intestine cancer or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of small intestine cancer progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the cancer comes back

If cancer does recur, your treatment options will depend on the location of the cancer, what treatments you’ve had before, and your current health and preferences. For more information on how small intestine cancer is treated, see Treatment Choices for Small Intestine Cancer (Adenocarcinoma), Based on Tumor Spread. 

For more general information on dealing with a recurrence, see Understanding Recurrence.

Can I still get another type of cancer?

Unfortunately, being treated for cancer doesn’t mean you can’t get another cancer. People who have had small intestine cancer can still get the same types of cancers that other people get. In fact, they are at higher risk for certain types of cancer. For example, they have an increased risk of other digestive tract cancers, especially colon cancer.

Because of this, it’s important to do what you can to lower your cancer risk, such as not smoking, staying at a healthy weight, staying active, and eating a healthy diet. And be sure to talk to your doctor about which cancer screening tests are right for you. 

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. To learn more about this, see Coping With Cancer.