If you have advanced gastrointestinal stromal tumor (GIST), you may not know anyone else with the disease. This may leave you with a lot of questions about what life will be like with this rare cancer of the GI tract.
Advanced GIST can impact your work, relationships, or ability to do everyday things. But there are steps you can take to manage the mental and physical challenges that may come your way. Work with your cancer care team to make the most of your treatment.
Facing Physical Challenges
Advanced GIST is considered a chronic cancer. That means the tumors may never go away completely. And you’ll likely need ongoing treatment to try to keep the cancer at bay for as long as possible.
Drug therapy for advanced GIST and the cancer itself may affect your body in different ways. Tell your doctor about any symptoms or side effects that bother you. Your supportive care team is there to help you feel better during or after treatment.
Here’s some of what you might face:
Fatigue and cognitive changes. It’s common for people with advanced GIST to feel really tired. You may also have trouble remembering things or thinking clearly. This can be a side effect from treatment or a symptom of the disease itself.
Tumor symptoms. Advanced GIST affects everyone in a unique way. How you feel may depend on things like your age, where your cancer has spread, and if you have other health problems.
Physical symptoms of gastrointestinal stromal tumors may include:
- Loss of appetite
- Tiredness
- Stomach pain
- Weight loss without trying
- Blood when you throw up
You may also have:
- A feeling of fullness after eating small amounts of food
- Bloody poop
- Bowel blockages
- Trouble swallowing
Treatment side effects. There’s no cure for advanced GIST, but the disease is treatable. You may need surgery to remove tumors followed by targeted drug therapy.
Treatment may ease symptoms caused by your tumors. But the meds used to curb cancer growth may affect your body in some unwanted ways.
Side effects depend on which medication you take. But along with fatigue, you may get:
- Upset stomach
- Swelling around the eyes
- Watery eyes
- Diarrhea
- Muscle cramps, especially in the hands and legs
Targeted therapy for advanced GIST may also cause:
- Fluid retention
- Changes in your skin and hair
- High blood pressure
- Mouth sores
- Loss of appetite
If you have a lot of treatment side effects, your doctor may decide to change the dose or type of medication you take.
Managing Mental Health Effects
Advanced GIST is a life-threatening illness, and your diagnosis may bring on some big emotions. You may have uncertainty about life with cancer or fear that the treatment won’t work. You may worry about how your family life or other relationships may change.
There’s no “right” way to feel about cancer. And it’s important to know that help is out there when you need it.
Some steps you can take to manage your mental health may include:
Share stress with loved ones. It’s normal to want to handle as much as you can on your own. But try taking a “we” approach to your cancer care. That’s when you and your loved ones help each other manage the stress of life with cancer.
Connect with the cancer community. GIST is a rare kind of cancer that not a lot of people have. But there are ways to connect with people who know what you’re going through.
Here are a few places you’ll find online support:
- GIST Support International’s GIST Community
- CancerCare’s GIST Patient Support Group
- Life Raft Group’s GIST Mentor Program
For general cancer support, visit the websites of the American Cancer Society or Cancer Support Community. There, you may find virtual groups or in-person meetups in your area.
Get professional help. You may have symptoms of anxiety or depression that are too big to handle on your own. Ask your doctor if you should talk to a psychiatrist, psychologist, or cancer counselor. A mental health professional can help you figure out if medication, talk therapy, or both are right for you.
Lifestyle Changes to Make
Things may not be the same after you’re diagnosed with advanced GIST. But there are some healthy steps you can take to adjust to life with cancer. Those might include:
Change your diet. Advanced GIST or its treatment may affect how you digest food or absorb nutrients. As a result, you may need to adapt how and what you eat or drink. If you’re not sure where to get started, ask your doctor to refer you to a dietitian who works with people with GI cancers.
Here are some things they might suggest:
- Eat smaller meals more often.
- Limit sugary food and drinks.
- Take certain vitamin and mineral supplements.
- Use digestive enzymes.
You may also need to limit certain fruits and vegetables. Plant-based foods are good for you, but you could get balls of undigested fiber (bezoars) in your gut if you’ve had surgery to remove part of your stomach. Ask your doctor if this is something you need to worry about.
Stay active. Aim for at least 30 minutes of movement most days of the week. Work with your doctor to find a workout routine that’s safe for you.
If you have cancer, studies show regular exercise might:
- Give you more energy
- Lower your anxiety and depression
- Boost your mood and self-image
- Lessen symptoms like fatigue, nausea, pain, and diarrhea
Rest when you need to. You may find that you need to take breaks more often during the day or cut back on how much time you spend doing certain activities. You’ll also want to make sleep a priority. Aim for 7 to 9 hours of shut-eye a night.
Adjust your work schedule. Many people with advanced GIST keep working during treatment or after surgery. But you may need to avoid early starts or work fewer hours. Talk to your employer about what you need. The Family and Medical Leave Act (FMLA) may give you certain job protections.
Control what you can. Life with cancer can be unpredictable. You might find some peace of mind if you come up with some short-term goals or routines you can plan for. That might include things like going to work, preparing for a trip, doing something fun, or learning a new skill.
Give up unhealthy choices. Your odds of some kinds of cancer go up if you drink alcohol, smoke, or use other tobacco products. Ask your doctor to refer you to an alcohol or smoking cessation program if you need extra help to cut back or quit.
Outlook and Future of GIST Treatment
If you have advanced GIST, there’s at least a 53% chance you’ll be alive 5 years after your diagnosis. But it’s hard to predict how this cancer will affect you. Things like your age, overall health, and how well you respond to treatment all play a role in your survival rate.
Standard chemotherapy and radiation therapy don’t work as well on GIST tumors. But there are a growing number of targeted therapies approved to treat this kind of cancer. You may have more treatment choices in the future.
For now, let your doctor know if you’re interested in joining a clinical trial. Those are studies where you can try out new drugs that aren’t available to the general public yet. You’ll find more information about trials for GIST cancer through ClinicalTrials.gov or GIST Support International.
