patient care perspectives
Counseling Newly Diagnosed Patients With Gastrointestinal Stromal Tumors
Educational efforts and counseling by physicians and support staff can help to manage patient expectations and provide emotional support to newly diagnosed patients with gastrointestinal stromal tumors (GIST). Frequent visits at the beginning of treatment can be helpful in preparing for the journey ahead.
“Our jobs as oncologists are to guide patients through this period of shock and worry and to prepare them to fight their disease.”
A new diagnosis of cancer is a life-changing event. A lot of stress and emotional turmoil go along with a diagnosis of any type of cancer, as this is a very difficult time in a patient’s life. This diagnosis requires patients to make changes in how they go about their daily lives; for example, they have to allocate time away from work for office visits, imaging studies, and lab tests, among other appointments. The initial few months after receiving any diagnosis is not only an emotional roller coaster but also a physical roller coaster due to the changes one experiences within their body.
Our jobs as oncologists are to guide patients through this period of shock and worry and to prepare them to fight their disease. During this time, we need to focus on making sure that patients get everything that they need, including the proper scans, mutation testing, education about treatment options and costs, and additional resources.
A lot of skill goes into tailoring the treatment and supportive care of individuals with GIST. In the very beginning of treatment, I see patients about every 1 to 2 weeks. This frequency helps patients to develop a real understanding of their symptoms and how to manage them.
The constellation of symptoms that someone has is very individualized. We teach patients about how to manage these symptoms, and we determine whether we can alter the dose, timing, or frequency of their medications to help manage adverse events. We may also provide supportive medications, such as antidiarrheal and antinausea agents, to help manage the side effects of treatment. Fortunately, many of the side effects of treatments for GIST are short-term and reversible. We also have many patients with GIST who have been on treatments for years. For these long-term patients, we tailor a scan and lab schedule pertinent to their disease, and we make sure that they have continued access to their medications.
The most challenging time is when patients are progressing and have new symptoms. At this time, we discuss new drugs, what it means to switch drugs, and the possible effects of treatment switching on disease progression. We may also discuss possible enrollment in clinical trials. The GIST community is very well organized, and there are many GIST support and patient advocacy groups that we may recommend, such as the Life Raft Group and GIST Support International, among others.
Custers JAE, Tielen R, Prins JB, et al. Fear of progression in patients with gastrointestinal stromal tumors (GIST): is extended lifetime related to the Sword of Damocles? Acta Oncol. 2015;54(8):1202-1208. doi:10.3109/0284186X.2014.1003960
Fauske L, Hompland I, Lorem G, Bondevik H, Bruland ØS. Perspectives on treatment side effects in patients with metastatic gastrointestinal stromal tumour: a qualitative study. Clin Sarcoma Res. 2019;9:6. doi:10.1186/s13569-019-0116-3
Fauske L, Hompland I, Lorem G, Hall KS, Bondevik H. Striving towards normality in daily life: a qualitative study of patients living with metastatic gastrointestinal stromal tumour in long-term clinical remission. Sarcoma. 2020;2020:1814394. doi:10.1155/2020/1814394
Macdonald N, Shapiro A, Bender C, Paolantonio M, Coombs J. Experiences and perspectives on the GIST patient journey. Patient Prefer Adherence. 2012;6:253-262. doi:10.2147/PPA.S24617