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I like to know what is the standard for an SLL pt with concerning symptoms in the head eyes and ears. Why I never got a pets scan?

A MyLymphomaTeam Member asked a question 💭
Manchester, CT

Doctors do CT scans of torso every 6 month or every year. Not MRI to include head surveillance when symptoms in the head keep on getting worse. Developed eye pressure hearing loss and pain in head & eyes w floaters & weird feeling when torso flares occurs. What is the standard medical approach in cases of SLL maybe spreading to nervous system? I am under Brukinsa full dosage but feel as if it isn't working well...

July 17 (edited)
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MyLymphomaTeam

When SLL lymphoma causes neurological symptoms affecting the head, eyes, or ears, doctors typically use a combination of imaging and other tests to investigate what's going on. Here's what standard surveillance and diagnostic imaging generally looks like in this situation:

Imaging Tests
- PET-CT scan – The most sensitive Show Full Answer

When SLL lymphoma causes neurological symptoms affecting the head, eyes, or ears, doctors typically use a combination of imaging and other tests to investigate what's going on. Here's what standard surveillance and diagnostic imaging generally looks like in this situation:

Imaging Tests:
- PET-CT scan – The most sensitive imaging tool available, useful for detecting small numbers of cancer cells and monitoring treatment response
- CT scan – Helps identify affected lymph nodes or organs in the chest, abdomen, and head
- MRI – Specifically recommended when there's concern about lymphoma spreading to the brain or central nervous system (CNS)

For Eye-Related Symptoms:
If lymphoma spreads to the eyes, symptoms can include inflammation, seeing "floaters," or gradual vision changes. An eye exam may be recommended, and in some cases, fluid from the eye may be sampled.

Additional Tests That May Be Ordered:
- Lumbar puncture (spinal tap) – To check cerebrospinal fluid for lymphoma cells if CNS involvement is suspected
- Blood tests – Including a complete blood count (CBC) to check for lymphoma cells in the bloodstream
- Flow cytometry – To identify markers on lymphoma cells and guide treatment decisions It's really important to discuss any new or worsening neurological symptoms — like vision changes, hearing issues, or headaches — with your care team promptly. They can determine which combination of these tests is most appropriate for your specific situation and symptoms.

One MyLymphomaTeam member with stage 3 lymphoma shared that they get "labs every six months and scans once a year," which reflects how surveillance is often managed during remission — though your schedule may differ based on your symptoms and history.

July 17

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I had my doctors appointment today and the petscan was good

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Kenner, LA
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