Lip Biopsy for Suspected Sjögren’s: A Result-Discussion Script

If you have had a lip biopsy while being assessed for Sjögren’s, you may be waiting for a clear answer before telling family what is happening. At the result appointment, start by asking the clinician to explain what the report contributes to your assessment.

Open with the question you came to answer

You could say: “I would like to understand whether you can make a diagnosis now. What did the biopsy tell you, and what information are you still waiting for?”

Ask for the report to be explained in ordinary language. If the clinician uses a term you do not recognize, ask what it means for your own assessment before moving to the next question. You can request a copy to take away.

The biopsy samples small salivary glands beneath the lining of the lower lip. The tissue goes to a laboratory for examination under a microscope.¹

A useful follow-up is: “Can you show me which part of the report describes the finding, then explain how you interpret it alongside my symptoms and other results?”

Ask whether the sample answered the question

Northern Care Alliance explains that a sample can contain too little suitable gland tissue, even when a good amount of tissue was taken. The surgeon cannot always identify this during the procedure.¹

You could ask: “Was there enough suitable tissue for the laboratory to assess? If the sample was insufficient, what does that mean for the information we have?”

Then ask the clinician to explain the proposed next step and its purpose. If another procedure is suggested, ask about its benefits, risks and alternatives for you. Do not decide from an unfamiliar phrase in the report that you need to book another biopsy.

Bring the other results into the conversation

Try: “Which symptoms and other test results are you using with this biopsy? Could you explain how they fit together, including anything that remains uncertain?”

Bring the questions you wanted answered before the procedure. If you have noticed a change since the referral, describe it to the clinician. If a result from another service is missing, ask who will obtain it and whether a further discussion needs arranging.

You do not have to supply your own interpretation of the laboratory findings. A description of what you have experienced and the questions you want answered is enough to start the discussion.

Leave with a named next step

Before the appointment ends, ask: “What happens next, who is responsible for arranging it and when should I expect to hear?”

Write down the contact details for a missing result or appointment. Ask whom to approach about ongoing symptoms while the assessment continues. If a diagnosis is made, ask for a separate explanation of the care plan and the support available to you.

Is It My Breath? includes a red-flag list and visit script. Use the visit script to organize your questions and leave room to record the clinician’s explanation. Explore the breath and mouth playbook.