Assistance Needed to Find a Colorectal Surgeon for a Cancer Patient
I’m sharing this here from [r/cancer](https://www.reddit.com/r/cancer/) in hopes of getting some guidance: I’m trying to assist my friend who is currently battling cancer. Here are her details: she is a 68-year-old woman, 5'4” tall, weighing 100 lbs, residing in Maryland, USA. She has no history of smoking and is currently taking Imatinib to treat a stage 1 GIST tumor. Approximately 20 years ago, she was treated for non-Hodgkin's lymphoma. After being diagnosed with the GIST tumor in February 2023, she has been undergoing treatment for about two years. The tumor is situated in the ascending part of her colon, measuring around 6cm x 8cm x 3cm according to a recent MRI. Additionally, there are four lesions found on her spine at locations L1, L2, L3, and T4. Follow-up tests, including bloodwork and a PET scan, suggest that the lesions are not related to the GIST; initial assessments point towards non-Hodgkin's lymphoma. She underwent a biopsy for two spinal lesions last week and is currently waiting for those results. Blood tests show that the GIST hasn't spread to her bloodstream, as Imatinib seems to keep it contained. With the tumor growing since February 2025, it’s imperative she finds a colorectal specialist. Her oncologist, along with other medical professionals, insists on the necessity of a surgeon with expertise in colorectal procedures, but this has proven to be a significant hurdle. She had an appointment at Sloan Kettering where the surgeon expressed that the tumor’s size exceeds his usual limits and he declined to operate. Although she has the option to switch to a different surgeon at the same facility, gaining approval for this transition appears to be a lengthy and cumbersome process, compounded by her oncologist's endorsement which she believes could take weeks. My friend has reached out to MD Anderson, where they have assigned her a surgeon; however, he is not a colorectal specialist. Traveling all the way from Maryland seems daunting if it's not the correct fit. Despite her attempts to communicate directly with MD Anderson to clarify this, she often ends up speaking with a scheduler who is unable to provide the needed assistance. Although she has left messages for a social worker there, she’s yet to receive a callback. I must say, their customer service seems quite responsive, and she does have an in-person appointment scheduled for April 21. Still, she is anxious about ensuring she connects with the right surgical expert. Previously, when she sought help at Fox Chase near Philadelphia, they informed her that they lack a colorectal surgeon, which her oncologist strongly advised against. Furthermore, he’s also not recommending Dana Farber for reasons unclear to me. She has not explored Mayo Clinic yet. Interestingly, her oncologist referred her to Fox Chase even though they don't have the necessary specialist, which raises concerns about the referral process given how busy everyone is. Is there a way her oncologist can facilitate the search for a colorectal surgeon, perhaps by contacting MD Anderson directly? My friend is overwhelmed by the effort of making numerous phone calls, navigating through the red tape. Is it truly as complicated as it seems to change surgeons at Sloan Kettering? The initial surgeon clearly doesn't want to take on her case. From the medical literature I’ve reviewed, it seems that the GIST tumor should have been addressed sooner, which is alarming. I'm eager to help streamline the search for a colorectal surgeon, as this currently appears to be the main obstacle. However, I am not a medical professional. Thank you for any insights you can provide!
Answers (1)
3/28/2025, 12:30:49 PM
OpenHealth AI
It sounds like your friend is facing a complex situation with her GIST tumor and is feeling overwhelmed by the search for an appropriate colorectal surgeon. Here are some main points and actionable suggestions to assist her:
Main Points
- Finding a specialized colorectal surgeon is crucial for treating her GIST tumor effectively due to its size and location.
- Navigating referrals and appointments can be frustrating, especially when dealing with multiple healthcare providers and facilities.
Explanation
Colorectal surgeons have specific expertise in dealing with colorectal tumors, including GISTs. Given the tumor's growth and her medical history, it’s essential to connect with a qualified specialist quickly. The complexity of changing surgeons and coordinating care can add to her anxiety, but there are steps that can be taken to streamline the process.
Next Steps
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Facilitate Communication with Her Oncologist: Encourage her to have a candid conversation with her oncologist about the urgency of finding a colorectal surgeon. The oncologist may be able to help directly contact potential surgeons or advocate for her case with MD Anderson or another institution.
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Explore Other Health Facilities: If options like the Mayo Clinic are available, it may be beneficial to inquire about their colorectal surgeons, as they often have multi-disciplinary teams that can quickly assess complex cases.
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Follow Up with MD Anderson: Since she has an appointment scheduled, it would be helpful for her to prepare specific questions regarding her surgical options. If she can, she should ask to speak with a colorectal specialist directly upon her arrival or request a referral to one during her visit.
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Consider a Patient Advocate: Seeking assistance from a patient advocate or social worker (whether at MD Anderson or through local cancer support services) can help navigate appointment scheduling, referrals, and address concerns on her behalf.
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Keep Records: Encourage your friend to keep an organized record of her medical history, test results, and any communications with healthcare providers, as this can help expedite discussions with potential surgeons.
Acknowledgment
It’s commendable that you are supporting your friend through this challenging time. The search for the right surgical care can feel daunting, but with focus and persistence, it is possible to find the right support. If feelings of overwhelm persist, remind her the importance of taking breaks and self-care amidst the stress.
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