Recent CT Results -- What should I ask for? Been having every 6mos since they showed up a little over year ago....

Understanding Your Situation & Next Steps

I can see you're navigating a challenging situation—you have imaging findings that appeared about a year ago, but your care team is taking a "watch and wait" approach. Let me help you understand what's happening and what questions to ask.

1) Your Recent CT Results & What to Ask For

What I'm Understanding: You have CT findings that have been present for about a year, but your PCP won't refer to oncology without a biopsy, and your surgeon recommended waiting another 6 months. This creates a frustrating gap where you're being monitored but not actively evaluated by a lymphoma specialist.

The Clinical Framework (How Doctors Think About This):

According to NCCN Guidelines for Marginal Zone Lymphomas, when imaging shows potential lymphoma findings, the standard approach involves:

• Biopsy and pathology confirmation - This is the gold standard for diagnosis
• Biomarker testing - Once tissue is obtained, doctors look for specific mutations and characteristics that guide treatment decisions
• Imaging interpretation - CT scans show where disease might be, but tissue diagnosis shows what it is

The challenge you're facing is real: your PCP is correct that oncology typically wants tissue confirmation before taking over care, but you're also stuck waiting without specialist input.

Specific Questions to Ask Your PCP:

1. "What specifically do the CT findings show? Can you describe the size, location, and characteristics of what was found?" (This helps you understand if these are lymph nodes, masses, or other findings)

2. "Given that I had indolent follicular lymphoma in the past, could this be recurrence or a new finding?" (This matters because recurrent disease vs. new disease affects urgency)

3. "Would you be willing to refer me to an oncologist for a consultation even without a biopsy yet?" (Many oncologists will see patients for evaluation and help determine if/when biopsy is needed)

4. "If a biopsy is needed, what type would you recommend—excisional (removing whole lymph node), core needle, or other?" (Different biopsy types have different recovery and tissue yield)

5. "What are the criteria that would make you feel comfortable referring me to oncology without a biopsy?" (This clarifies what threshold needs to be met)

---

2) Surveillance Every 6 Months—Is This the Right Interval?

What the Guidelines Say:

According to NCCN Guidelines for Marginal Zone Lymphomas, surveillance imaging recommendations depend on your disease status:

• After remission (complete response): Surveillance imaging may include chest/abdomen/pelvis CT no more than every 6 months for 2 years. After 2 years, imaging is done as needed (not routinely)
• For asymptomatic patients: Imaging may be considered, but should be discussed with your care team about whether it's appropriate for your specific situation

Important context: These guidelines assume you've already been diagnosed and treated. Your situation is different—you have imaging findings but no confirmed diagnosis yet.

Questions to Ask About Your Surveillance Plan:

1. "Since I don't have a confirmed diagnosis yet, what is the purpose of these 6-month CT scans? Are we looking for growth, stability, or something else?" (This clarifies whether you're being monitored for progression or just tracked)

2. "How long should we continue 6-month imaging if nothing changes?" (This addresses whether there's an endpoint to this surveillance)

3. "If the findings remain stable over the next year or two, would we move to less frequent imaging?" (This aligns with standard practice)

4. "Are there any symptoms I should watch for that would warrant earlier imaging or specialist evaluation?" (This empowers you to recognize warning signs)

5. "Would it make sense to get a second opinion from a lymphoma specialist about the imaging findings and surveillance plan?" (This is completely reasonable and often helpful)

---

What You Should Know About Your History

Your background is important context:

• Indolent follicular lymphoma (2010) - This is a slow-growing type of NHL
• New findings appearing ~1 year ago - Could represent recurrence, transformation, or a new primary lymphoma
• Stable on imaging for ~1 year - Suggests slow growth or stability, which is reassuring

According to NCCN Guidelines for Follicular Lymphoma, when patients have a history of indolent lymphoma and new findings appear, the key question is: Is this the same disease recurring, or something new? Only tissue diagnosis can answer this definitively.

---

Recommended Next Steps

Priority 1: Get Specialist Input

• Request an oncology consultation (not necessarily a biopsy yet) to have a lymphoma specialist review your imaging and history
• Frame it to your PCP as: "I'd like a specialist's opinion on whether these findings need biopsy now or if continued monitoring is appropriate"

Priority 2: Gather Your Information

• Request copies of your CT reports (not just images) - get the radiologist's written interpretation
• Request your 2010 pathology report if possible - knowing what type of follicular lymphoma you had helps determine if this could be the same disease
• Ask for comparison between your recent CTs - are the findings stable, growing, or shrinking?

Priority 3: Clarify the Plan

• Get a written summary of the surveillance plan: what imaging, how often, for how long, and what would trigger a change in approach
• Understand the decision criteria for when biopsy would be recommended

---

Important Boundary

This information is for educational purposes only. Your specific situation—whether you need a biopsy now, how often to image, and what specialist to see—requires your healthcare team's evaluation. However, you absolutely have the right to:

• Ask for specialist consultation
• Request clear explanations of the surveillance plan
• Seek a second opinion
• Understand the reasoning behind "watch and wait"

The fact that you're asking these questions is exactly right. Engaged patients who understand their care get better outcomes.

---

This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.