At a Loss for What to Do (23F)
Over the past eighteen months, I've been dealing with swollen lymph nodes that have been characterized as having a neoplastic appearance. Additionally, I have been experiencing B symptoms, such as persistent fevers and excessive sweating during the night. In November, I underwent a fine needle aspiration (FNA) after a rapid increase in size and a new formation of a lymph node located on my jaw. Unfortunately, the results were inconclusive and a cell block could not be performed. Complications arose when I was informed that an excisional biopsy was scheduled; however, my primary care physician altered the procedure without prior discussion, opting for a different approach instead. Since this change, my doctor has taken no steps towards obtaining a diagnosis and simply intends to monitor the situation every six months, or if any alterations are observed. I attempted to seek a second opinion from another physician in the same practice, but all inquiries were directed back to my primary care provider. Finding a different doctor who accepts new patients and my insurance within the vicinity has proven to be fruitless. At this juncture, I genuinely feel uncertain about my next steps. I have undergone comprehensive testing for infectious diseases, all of which returned negative results. There are no underlying autoimmune conditions present. Additionally, I am undergoing tests for gastroparesis due to my ongoing struggles with eating, which often results in vomiting or dry heaving after every meal. A recent abdominal CT scan was normal without any alarming findings. Any advice on how I should proceed would be immensely valued!
Answers (1)
2/13/2026, 2:10:44 AM
OpenHealth AI
It's understandable to feel overwhelmed and uncertain given your complex medical situation. You're dealing with persistent symptoms like swollen lymph nodes, fevers, and night sweats, combined with difficulties in communication and diagnosis from your healthcare team. Here’s what you can do to move forward:
Key Points:
- Recognize and Address Your Concerns: You have valid worries regarding the lack of clarity in your diagnosis and treatment plans.
- Self-Advocate for Care: Steps for securing a second opinion or better communication with your current doctor.
- Manage Symptoms: Effective ways to cope with your current symptoms, especially the eating difficulties.
Explanation:
Your swollen lymph nodes and B symptoms deserve thorough investigation, especially since changes in size and the inconclusive results of your previous biopsies raise concerns. It's frustrating that the approach to your care has not aligned with your urgency for answers. Even though your infections and autoimmune conditions have been ruled out, persistent symptoms need continued attention.
Next Steps:
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Ask for a Detailed Discussion:
- Arrange a dedicated appointment with your primary care physician where the focus will be solely on your concerns. Prepare a list of your symptoms and specific questions you have regarding the biopsy and future steps. Knowing exactly what you want to discuss can help guide the conversation.
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Request a Referral:
- Politely insist on getting a referral to a hematologist or oncologist who specializes in lymphatic disorders. Express the urgency of your situation clearly, as specialists may have differing protocols from a general practitioner.
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Consider Virtual Care Options:
- If finding another doctor locally is difficult, explore telemedicine options. Many specialists now offer virtual consultations, which can sometimes bypass insurance limitations.
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Symptom Management:
- For your eating issues, maintain hydration, and consider smaller, more frequent meals that may ease the vomiting. Keeping a food diary may help identify any specific triggers. If your symptoms persist, discuss symptom-specific therapies, including potential medications that can help with nausea.
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Stay Informative:
- Keep a log of any new symptoms or changes in your current symptoms. This can be valuable when you do get the opportunity to speak with a healthcare provider.
Additional Self-Care:
- Engage in stress-relief practices like mindfulness or gentle exercise, as anxiety can heighten physical symptoms.
- Connect with support groups or forums online where you can share experiences with others facing similar health challenges.
Remember, your health and peace of mind are paramount. Taking proactive steps and seeking clarity will empower you in navigating this difficult situation.
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