Some tests are for diagnosis (such as a biopsy being the ultimate) and some are to assess how far the disease has spread - for example a scan may be needed even if the cancer is discovered in the glands in the neck. Doctors and nurses were usually very kind to the young people we interviewed who were having tests. When possible young people were able to have one of their parents with them - to hold their hand, distract them with talk or crossword puzzles, or reassure them about what was happening. Sometimes it was only during the initial tests that young people became aware that there was something seriously wrong with them.

People didn't always understand what the tests were for, or what would happen. One girl said, "I was having all these things done to me, and I didn’t really understand what they were doing" (Interview 08). Others were frustrated when nobody told them that their test results had come back, which sometimes caused days of unnecessary worry.
Tests to discover the diagnosis
Initial tests are likely to include blood tests and x-rays. If the tests suggest that something is wrong, then further tests, including scans and biopsies (when tissue samples are removed to be tested), may be needed to help the doctors to make a diagnosis. These tests are also used to clarify the position and spread of the cancer, and so establish the ’stage’ of the cancer. (See also ’Hearing the diagnosis’.) Cancers occur in different parts of the body and some cancers are easier for doctors to access than others.

Different tests are used to diagnose different cancers. Surgical biopsies were used to obtain small amounts of material from lumps in the body that are suspected to be tumours. These biopsies are then examined under a microscope.
A diagnosis of leukaemia involves many blood tests, bone marrow tests and spinal fluid tests. Many of the teenagers we interviewed had scans - CT, PET, bone or MRI scans - at diagnosis stage and throughout treatment. 

Going for diagnostic tests takes up a lot of time, especially for those who had to travel to another city for specialist tests and scans. Many of those interviewed were still going to school every day and kept busy with school work and revising for their GCSEs or A level exams. Others were worried but found it difficult to ask questions at this stage. Few thought that it could be cancer. 
Tests and procedures before and during treatment
Before any course of chemotherapy a blood test would show that there are adequate white blood cells, especially neutrophils (to fight infection), enough platelets (needed for blood clotting) and a normal haemoglobin level (enough red blood cells). Others include heart and lung tests, kidney tests and hearing tests to check that the young person is well enough to have their treatment. And further chemotherapy is not given without having a blood test to confirm that their bone marrow had recovered from the previous course of chemotherapy. During treatment tests such as lumbar punctures (LPs) and scans are important to show whether the cancer is responding.

Tests for the cause of infections, or to locate infections, are common for all cancer patients. Chest x-rays are sometimes used for chest infections and ultrasound scans of the abdomen are sometimes used to find fungal infections.
Lumbar punctures (LPs), where a needle is inserted into your back, between your vertebrae into the fluid surrounding your spinal cord, are sometimes used throughout treatment to find out if cancer cells are present in your spinal fluid and to give regular injections of chemotherapy into the spine, to treat cancer cells and to prevent spread of the cancer to the brain and spinal cord. 
Lumbar punctures are done under local or general anaesthetic, or what some called ’happy gas’ and there were different opinions about which was preferable (some people get nauseous after a general anaesthetic while others much prefer to be ’knocked out’). After a lumbar puncture it is necessary to lie still for a few hours, which some young people found very difficult.

Some forms of cancer need to be treated by having a 'bone marrow' transplant. This is because treatment with chemotherapy and/or radiotherapy may need to be so intensive that it destroys the cell-making bone marrow (these cells are the ones that go to make up blood). Before starting intensive treatment some bone marrow cells are extracted via a needle, for later use. Otherwise someone else's bone marrow (a matched donor who may be a brother or sister or relative or just someone from the general public) may also be used. After treatment when all the bone marrow may be 'knocked off' - people are then given back either their own stored bone marrow cells or those of the matched donor.

Last reviewed November 2014.

Last updated November 2014.


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