In choosing a physician to treat your GIST cancer, you need to find a doctor with experience with gastrointestinal stromal tumor, someone you can trust to be up-to-date on treatment options. If you join our GIST Support International listserv, you can ask other GIST patients about their experiences with physicians in different geographic locations.
Interviewing a prospective doctor…
If you are considering working with a physician outside of an established GIST center, here are some questions to ask:
- How many GIST patients have you treated since 2000?
- Do you have a working relationship with a GIST center? For example, can you order my CT scans here, and have them routinely evaluated, not just here, but at a GIST center?
- Are you willing to develop a working relationship with a GIST center if you don’t have one now?
- How do you feel about second opinions? See Bev’s essay on Second Opinions.
- Are you willing, and do you have the time needed, to stay current on GIST treatment developments, since it is a fast-moving field?
- Will you be comfortable with a knowledgeable patient who wants to be involved in treatment decisions?
Discussing Details of Your Case: Here are some questions to ask your doctor at various stages of your diagnosis and treatment.
Pre-surgery Diagnosis: Often GIST is not diagnosed until after the tumor is removed. However, if your tumor looks difficult to operate on, or if knowing the diagnosis in advance would potentially alter the treatment plan, then a pre-surgery biopsy may be done. See Dr. Corless’ discussion of biopsies.
- What is my diagnosis?
- I want a copy of my pathology report (if a biopsy has already been performed,) and I want you to explain it to me. Was it positive for KIT (CD117)? Was the mitotic rate determined?
- I want to look at my scans and have you explain what you are seeing.
- Do I need additional baseline imaging studies prior to surgery?
- What surgery do you recommend? What are the risks & the expected results of this operation? How many of these surgeries have you done? What surgical options are available for me?
- Is this surgery consistent with NCCN guidelines?
- Should I take Gleevec pre-surgery to reduce scope of resection?
Post-surgery diagnosis: Pathology testing is normally done on the resected tumor, including measurements of proliferation (cell reproduction) such as mitotic count or Ki-67 proliferation index. At this point your diagnosis will be firmed up, and you need to discuss your next steps with your oncologist.
- I would like a copy of all of my reports to date, and for you to answer any questions I have about them. These reports include, but are not limited to: Surgery Report, Pathology Report, CT, MRI, XRAY reports, Hospital Stay Report. (Note, in the future, get copies of all of your reports as they are typed, and just add them to the top of your personal medical “file.” They will sometimes charge for copying reports after the fact, but not if you ask for them at the time.)
- Describe the surgical margins. Was any gross tumor left? Were the margins clear to the naked eye? Were the margins clear microscopically?
- Were any metastases detected during the surgery?
- Please go over the surgical pathology report and its findings, including the CD-117 results.
- What size was the tumor? What was the mitotic count? What risk group do I fall into based on size and mitotic count?
- Was there any necrosis?
- What portions of my gastrointestinal tract were affected by this surgery? How do I cope with changes to my GI tract? Do I need vitamin B-12 shots after gastrectomy?
- Do I need Gleevec now (post-surgery adjuvant treatment)? For how long? At what dose? Why do you recommend this?
- Should I get mutation testing performed on my tumor?
- How do we plan to monitor for recurrence? By CT? By other methods of imaging? How often?
- How often do I need bloodwork? Explain the results & what to look for. Dr. Charles Blanke has written an opinion about this for our site: link here.
What about adjuvant treatment options?
Several clinical trials are currently underway to investigate whether imatinib (Gleevec) can kill any remaining cancer cells after successful removal of the primary tumor, thus preventing recurrence. Hopefully we will get preliminary results soon from these trials. For long-term survival however, we will have to wait years to know if adjuvant treatment helps patients. “Adjuvant” just means “preventive” treatment: in other words, taking Gleevec after total resection of the primary tumor, with clear margins, when you are NED (No Evidence of Disease), in hopes of preventing recurrence or metastasis.
An expert should evaluate your case and make recommendations about your adjuvant use of Gleevec. Certain factors may make this decision easier. If you had a tumor over 6 cm in size, if you didn’t have clear margins, if your tumor burst, if you have a high mitotic rate (for GIST this could be as few as 6 mitoses per 50 high-power fields (6/50 HPFs), then adjuvant Gleevec may be a good option. Note that if your GIST was already metastatic at diagnosis, then, even if all known metastases were completely removed, use of Gleevec is NOT considered adjuvant and is clearly recommended.
I am on Gleevec and my doctor says my tumors are GROWING! What do I do now?
If you are not already being seen by an expert, you should find one NOW. Growing tumors (viewed by CT scan alone) may or may not mean that Gleevec is not working. Sometimes tumors increase in size on a CT scan, because they are swelling up due to liquification as they die. An expert may be able to tell the difference, or may order a PET scan. A PET scan is a useful (and expensive!) diagnostic technique that measures metabolic activity of tissue. PET, or the newer PET/CT combination scan can (in questionable situations, and used by the right radiologist and physician) be valuable when a CT alone is unclear. For the most part, CT is the diagnostic tool of choice, but at times, a PET is needed. If indeed, your tumors are not responding to Gleevec, an expert will help guide you to another drug such as sunitinib (Sutent) or to a clinical trial drug or drug combination.
Sometimes inexperienced physicians may advise a patient to discontinue imatinib if tumors start to show resistance, since this is standard practice for conventional chemotherapy drugs (take until progression). However, for targeted biological therapy drugs, the experts never discontinue one drug unless the patient is to begin a different drug, because discontinuation may lead to a flare of rapid tumor growth.
Will I die? How long do I have?
The hard truth is, yes, you might die. GIST is so unpredictable, and it can be a deadly, sometimes fast-moving disease, while other cases are much less aggressive, and may not come back for years, if at all. But, with the right doctors, who are staying current on GIST care, and who insist on proper follow-up scans, your chances of surviving this are EXCELLENT! New “targeted therapy drugs” are now there for us, beginning with Gleevec, and now, Sutent. Others are being tested already, and combination therapies may be the eventual goal. These drugs, (so far) do not “cure” the cancer, but they keep it at bay, manage it, so that you can live. Tumors often shrink dramatically with Gleevec. Sometimes, they simply remain “stable” and that is a good thing too. See the Treatments section of our website for information on current drugs as well as clinical trials.
Five years ago, the story for us was quite different. Regular chemotherapy did not work for GIST, and radiation was fairly useless. We died. It was just a matter of when. Today the situation is quite different, and with Gleevec and other drugs, our survival rates are dramatically increasing. There are a lot of reasons to hope. So be very careful when you search the web, as old (pre-2000) information on GIST may no longer be relevant. For one thing, prior to 1998, most GIST information was lumped in with other sarcomas, such as Leiomyosarcoma. GIST really only became a separate disease after 1998, and it was only considered differently in terms of treatment options after 2000. For another, the treatment options, as mentioned above, have changed dramatically, and indeed, are changing as you read this.
You may live many, many years, and your GIST may not come back for most of those years. However, sometimes it comes back very quickly, and with a vengeance, which is why it is so important to keep your own records, establish care at one of the expert facilities, have regular CT or MRI scans, and be able to move fast if this happens to you. We know that high-risk GIST usually comes back—but, it may take 1 month, or 30 years. Careful follow up is important for this reason, as acting quickly can save your life.