# Care pathway for GIST On this page you will find information about the different stages of examinations and treatment of GIST at HUS. ## [ From symptoms to diagnosis ](#from-symptoms-to-diagnosis) ## [ Diagnosis of GIST ](#diagnosis-of-gist) ## [ Treatment of GIST ](#treatment-of-gist) ## [ After treatments ](#after-treatments) ## [ Support and information ](#support-and-information) ## From symptoms to diagnosis Primary healthcare, such as a health center ### What are the symptoms of GIST? --- GIST (gastrointestinal stromal tumor) is a rare soft tissue sarcoma of the connective tissue in the gastrointestinal tract. Its symptoms and treatment differ from those of other soft-tissue sarcomas. GISTs grow in the wall of the gastrointestinal tract, usually from the outer surface of the tract toward the abdominal cavity. A tumor will often cause symptoms only when it has grown to a larger size. The most common symptoms are - gastrointestinal bleeding - anemia, or low hemoglobin - abdominal pain. Most tumors originate in the stomach or small intestine, but they can also be found anywhere in the digestive tract. ### The physician will refer you to HUS --- If a GIST is suspected during an examination conducted in primary healthcare, such as an abdominal ultrasound or a gastroscopy, the health center physician will refer the patient to HUS, typically to gastrosurgery. ## Diagnosis of GIST Comprehensive Cancer Center and other HUS facilities ### Your referral will be received at HUS, and you will be sent an invitation --- When your referral arrives at HUS, the specialist will review it, assess its urgency, and plan the necessary additional examinations. You will receive an invitation letter by mail and in the [Maisa Portal](https://www.apotti.fi/maisa/). The invitation will indicate when and in which hospital you will need to register, the procedure for which you have been booked, and instructions on how to prepare for coming to the hospital. ### Additional examinations for GIST --- To diagnose GIST, we need a tissue sample taken during an endoscopy or surgery, which we will send to a pathologist for examination. The appearance of the cells in a tissue sample, when viewed under a microscope, provides information about the tumor. The pathologist uses a special staining technique to look for a protein called KIT in the sample. In many cases, the tumor also contains a mutation in the gene that regulates the production of the KIT protein. This genetic mutation may be one reason why the tumor grows and develops. With targeted therapies, we can block the activity of the mutated KIT protein and, in the best-case scenario, achieve excellent, long-lasting treatment outcomes even in cancers that have already spread extensively. About 20 percent of GISTs do not have a KIT mutation, but they may have another mutation that makes them suitable for targeted therapy. Before surgery, we usually perform a computed tomography scan of the abdomen to determine the extent of the disease. ### Appointment with a physician and a nurse --- If you have a local GIST that requires surgery, you will be invited to a consultation with a surgeon. During your appointment, you will go over the surgical plan and the associated risks with the surgeon. You will also see a nurse if necessary. ## Treatment of GIST HUS ### Treatment of GIST begins --- Local GIST refers to a single tumor that has not spread to other parts of the body. We often try to operate it curatively. If the risk of recurrence after surgery is high and a KIT mutation is detected in the tumor, we can start drug therapy after surgery. The treatment consists of tablets to be taken at home. The goal of this treatment is to eliminate any cancer cells that may have remained in the surgical area but are not visible on imaging tests. Treatment typically lasts three years. Sometimes we use medication to shrink a GIST before surgery if the tumor is large when treatment is initiated. In this case, medication will continue for a total of three years after the surgery. The drug therapy (imatinib) is generally well tolerated. Side effects may include varying degrees of anemia, swelling of the eyelids, watery eyes, diarrhea, muscle cramps, fatigue, and nausea. We can help relieve symptoms with medication for nausea and diarrhea. ### Contact with the treatment unit --- A multiprofessional treatment team is in charge of the treatment of GIST. You can reach your treatment team in the [Maisa Portal](https://www.apotti.fi/maisa/)and by phone. You will find the contact information for the unit treating you on the invitation letter. - The Comprehensive Cancer Center helpline at 09 471 74900 is open Monday through Friday from 7:30 a.m. to 4:00 p.m. - If your condition deteriorates suddenly or your fever rises above 38 degrees Celsius, contact the 24-hour emergency Medical Helpline at 116 117 (toll-free) or the nearest hospital with on-call services. - In an emergency, always call 112. [ Contact information for outpatient clinics and wards (opens in new window, links to another website) ](https://www.hus.fi/haku?size=n_20_n&filters%5B0%5D%5Bfield%5D=content_type&filters%5B0%5D%5Bvalues%5D%5B0%5D=hospital-other-units&filters%5B0%5D%5Btype%5D=all&filters%5B1%5D%5Bfield%5D=search_content_type_label&filters%5B1%5D%5Bvalues%5D%5B0%5D=Toimipiste&filters%5B1%5D%5Btype%5D=any) ### Healing and follow-up --- After the surgery and administered adjuvant therapy, you will be monitored at the oncology outpatient clinic. During your follow-up care, you will undergo computed tomography scanning of your abdomen. We typically monitor your status for ten years after surgery. If the risk of tumor recurrence is very low or low, surgery alone is usually sufficient, and follow-up is either not needed at all or typically lasts only a few years. ### If the disease recurs or treatments do not help --- If a GIST metastasizes after initial treatment or is found to have already spread, surgery is generally not beneficial. In this case, treatment consists of medication aimed at slowing the progression of the disease. The first-line treatment for advanced disease is usually imatinib, which can remain effective for several years. If the disease progresses despite the initial medication, we can usually also use other targeted medications in tablet form. These effects are usually shorter-lived. Sometimes we also use radiation therapy to treat GIST tumors, and in some cases, we remove any remaining tumors through surgery. In advanced disease, the goal of treatment is to reduce the size of cancerous tumors and prolong the patient’s quality of life. ### Palliative care --- Good symptomatic treatment and psychosocial support are an integral part of cancer treatment. The Palliative Care Center provides help in the stressful life situation caused by the illness or cancer treatments. We provide help in treating difficult symptoms and offer conversational support. We will switch to a palliative care plan – that is, a plan focused on symptom management – when the focus of your treatment shifts from slowing the progression of cancer to managing symptoms. In this case, treatment aims to alleviate symptoms and, as far as possible, to ensure a good and active life with the illness until death. Typically, at this stage, your care responsibility is transferred to the palliative outpatient clinic or home hospital care in your area. [ Learn more about palliative care ](/en/patient/treatments-and-examinations/palliative-care) ## After treatments ### Follow-up at HUS ends --- Following surgery and adjuvant therapy for localized GIST, your monitoring will usually continue at HUS oncology outpatient clinic for ten years. ## Support and information #### Support for people with cancer and those recovering from cancer Getting cancer is a big life change. In addition to medical cancer treatments, the Comprehensive Cancer Center offers a range of support services. [ Learn more about our various support services ](/en/patient/treatments-and-examinations/support-people-cancer-and-those-recovering-cancer) #### Instructions and additional information for cancer patients Here you will find our patient guide and more information about cancer treatments. [ Read the instructions ](/en/patient/treatments-and-examinations/cancer/instructions-and-additional-information-cancer-patients) Updated: 15.06.2026