How to use the Symptom Checklist section of the patient Pathways Forms. Building your own Pathways Guide book can help you track and determine your individual thyroid cancer treatment as you progress from newly diagnosed to long term survivor.
One of the issues thyroid cancer patients often face is being told their symptoms have nothing to do with their thyroid hormone replacement (TRH) therapy. Patients may find it hard to clearly define their symptoms or to associate them directly to a specific event or point in time such as surgery or medication changes. Even physicians may tend discuss their response to therapy in terms of how a patient “feels” rather than objectively evaluating signs and symptoms and ruling out causes. This can result in a patient being prescribed additional medications, such as beta blockers or anti-depressants when their TRH therapy is not dosed at appropriate levels to avoid symptoms from side effects.
Though often used interchangeably, a sign refers to something which can be observed or measured such as a rash or a reported lab value. Symptoms are the subjective experiences reported by the patient, such as “brain fog” or “tired”. Applying a numeric score to a symptom , when compared against a baseline, can validate the symptom and bring it into the realm of being a useful diagnostic indication.
Why do this?
- Using a scored symptom checklist provides context for both you and your provider.
- You can establish a baseline, either pre–diagnosis/surgery or when your response to therapy was optimal, — your personal best, — then track changes from that baseline.
The Symptom Checklist includes the most common signs and symptoms related to THR reported by thyroid cancer survivors and is based on validated Quality of Life (QoL) outcomes. You can personalize the list from the included QoL risk factors study list.
To help you get started:
- Download and print a copy of the Symptom Checklist here
- Look for the signs/symptoms which apply to you
- Date and score your “baseline” when they were at 0 or 1 (your personal best)
- Start dating and scoring your current signs and symptoms.
- Use the comment section to further define and personalize your checklist — specific tasks, activities or tests which describe symptoms more specifically.
- Use the lower section to record your medication dosing and laboratory results.
Why is it important for you to be specific about your symptoms? You live with your self every day and know how your symptoms shape your health and your life. Your physician may only see you for fifteen or thirty minutes a few times a year and must rely on training, experience and your lab results. The checklist provides an additional objective tool that can not be dismissed out of hand. Some examples of using comments to be specific:
- “I’m falling asleep at work.”
- “My hair is falling out and I filled a zip loc baggie to show you.”
- “I can’t concentrate to [grade papers, follow a conversation, fix dinner…]”
- “I used to be easy going but now get [angry, upset, on edge] about any little thing.”
- “I used to [run, work out, garden] for [miles, hours, days…] but I can’t do this now.”
- “My [A1c, cholesterol, heart rate, blood pressure] was perfect before [surgery, dose change…] and I never needed medication for it before.
The Symptom Checklist is flexible and can be as unique as you are while enhancing communication with your physician.
We need to treat your thyroid cancer but you have a life to live also.