Diagnosis: What to Expect

The period between noticing something and being told what it is can be the hardest part of the whole experience. Knowing the shape of that process in advance makes it less frightening.

The usual path

1. First contact. A health centre, CHPS compound, polyclinic or hospital. The health worker takes a history and examines you.
2. Initial tests. Blood tests, an X-ray or an ultrasound, depending on the symptom.
3. Referral. If something needs a closer look, you are referred to a district, regional or teaching hospital.
4. Imaging. Ultrasound, mammography, CT or MRI, to see the area clearly.
5. Biopsy. A sample of tissue or cells is taken. This is the step that actually confirms whether cancer is present.
6. Pathology. A pathologist examines the sample under a microscope and reports the type of cancer and its characteristics.
7. Staging. Further tests establish whether and how far the disease has spread.
8. Treatment plan. A team decides, with you, what happens next.

Why a biopsy is unavoidable

No scan, blood test or examination can diagnose cancer on its own. Only looking at the cells themselves can do that. This is why a doctor who suspects cancer will not simply tell you that you have it — and why being asked for a biopsy is not the same as being given a diagnosis.

A biopsy usually involves a needle and local anaesthetic. It is quick. It does not make cancer spread — that is a persistent myth, and believing it is a real cause of delay in Ghana.

What staging means

Stage describes how far a cancer has spread. It is the single most important factor in what treatment is offered and what outcome to expect.

• Stage I — small and confined to where it started.
• Stage II — larger, or involving nearby tissue.
• Stage III — spread to nearby lymph nodes or structures.
• Stage IV — spread to distant parts of the body.

You may also hear about grade, which describes how abnormal the cells look and how quickly they are likely to grow. Stage and grade are different things.

Waiting for results

Waiting is genuinely hard, and it is worse when nobody tells you how long it will take. Before you leave any appointment, ask three questions: when will the result be ready, how will I receive it, and who do I contact if I have not heard? Write the answers down.

If you have not heard by the date you were given, follow up. Systems are busy and results do occasionally sit unread. Chasing is reasonable, not rude.

Costs and the NHIS

Cost is one of the most common reasons people stop partway through a diagnostic process. Some investigations and treatments are covered by the National Health Insurance Scheme and some are not, and coverage changes over time.

Ask directly, at each step: what will this cost, is any of it covered, and is there a cheaper route to the same answer? Health workers are used to this question. Do not disappear from the system because of a cost you have not yet asked about.

Questions worth asking

• What do you think this is, and what else could it be?
• What will this test involve, and what will it tell us?
• When will the result be ready and how will I get it?
• If it is cancer, what type and stage, and what does that mean?
• Who is coordinating my care, and how do I contact them?
• What should make me come back sooner than my next appointment?

Take someone with you. Ask them to write things down while you listen. You will not remember as much as you expect to.