Searching for Expertise in Unknown Primary Cancer
Patient Profile: - Age: 66 - Gender: Male - Height: 5 feet 6 inches - Weight: 150 pounds - Ethnicity: Caucasian - Duration of symptoms: 6 months - Geographic location: San Francisco Bay Area, California Current Health Status: - Diagnosed with Cancer of Unknown Primary (CUP) - Managing diabetes, on chemotherapy Objective: In pursuit of a specialist or medical facility that focuses on CUP. I am currently receiving chemotherapy at UCSF, where I am content with the treatment team. However, I am also interested in exploring additional avenues that might assist in identifying the primary cancer source and offer guidance on further therapeutic strategies based on their expertise. I have contacted MD Anderson, but the earliest appointment they could offer me is in February. I also reached out to Memorial Sloan Kettering (MSK), and they appear promising, but I’m eager to know if there are other options available—perhaps the Mayo Clinic or specific specialists known for this condition? My ideal candidate would possess a "House-like" investigative approach, meticulously working to uncover the underlying issues. I understand that this kind of expertise might seem out of reach, but I am feeling quite desperate. Medical Background: This case involves CUP with metastasis to the bones, potentially originating from the upper gastrointestinal tract. Both colonoscopy and endoscopy results have returned normal. Imaging scans were clear as well. Unfortunately, a biopsy could not be processed using Tempus due to bone decalcification complications. A liquid biopsy has indicated a specific mutation that could be targeted if chemotherapy fails to deliver results.
Answers (1)
9/9/2025, 1:01:52 AM
OpenHealth AI
It's understandable that you are seeking additional expertise in managing your Cancer of Unknown Primary (CUP), especially given your current health situation and treatment challenges. Exploring options for specialists who can take a detailed, investigative approach is a wise strategy.
Understanding Your Situation: CUP can be particularly challenging because the primary tumor is not identifiable, which complicates treatment options. It's encouraging that you are currently receiving care at UCSF, but reaching out to other renowned institutions can also provide new perspectives and potential therapies.
Next Steps:
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Contact the Mayo Clinic: The Mayo Clinic has a strong cancer research program and specializes in complex cases. You can request a consultation for CUP through their website or by calling directly. Inquire if they have a faster appointment timeline, especially given your circumstances.
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Seek Additional Centers of Excellence: In addition to MD Anderson and the Mayo Clinic, consider reaching out to:
- Johns Hopkins Hospital: They are well-known for cancer research and treatment.
- Cleveland Clinic: They have a multi-disciplinary cancer team focused on difficult-to-treat cancers.
- Sloan Kettering Memorial Cancer Center: Since you have already contacted them, try to expedite the appointment by explaining your situation clearly.
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Exploring Clinical Trials: Look for clinical trials specifically targeting CUP or related types. Platforms like ClinicalTrials.gov can be useful to find ongoing studies that might be open for enrollment, which could provide access to innovative therapies.
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Liquid Biopsy Consultation: Consider seeking specialists who focus specifically on liquid biopsy results. These experts can help you understand the implications of the mutation found and guide you through possible targeted therapies if chemotherapy is not effective.
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Continue Engaging with Your Current Team: Since you are content with the care from UCSF, make sure to communicate your findings and decisions with your providers there. They may have insights or connections to additional specialists or resources.
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Mental and Emotional Support: Managing a condition like CUP can be emotionally taxing. Seek support groups or mental health services if you feel overwhelmed. Connecting with others facing similar challenges can provide comfort and insight.
Remember, you are not alone in this journey, and seeking multiple opinions is essential for making informed decisions. Keep advocating for yourself, and stay persistent in finding the care that best suits your needs.
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