Tests

Some tests are for diagnosis ( the biopsy being the ultimate) and some are to assess how far the disease has spread - for example you may need a scan even if the cancer is discovered in the glands in the neck. Doctors and nurses were usually very kind to young people 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.

Realised that there must be something seriously wrong when the man doing the ultrasound suddenly stopped being jolly.

Young people did not always understand what the tests were for, or what would happen. One girl said "I was having all this 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, 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’.) Tumours occur in different parts of the body and some tumours are more accessible than others.

Explains the different stages (I to IV) of Hodgkin's lymphoma and describes the tests that confirmed the stage of his disease.

It took a few months and several tests before he was diagnosed with Burkit's lymphoma.

Had a biopsy quite quickly but waited 3 months for treatment because his rare cancer was hard to identify.

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.
 
Diagnosis with leukemia involves many blood tests as well as bone marrow tests and spinal fluid tests. Many teenagers had had scans - CT, PET, bone or MRI scans - at diagnosis stage and throughout treatment. 

Talks about his blood tests and his lung test he had before radiotherapy.

Describes her biopsy, which was done after a CT scan showed a 'big lump'.

Explains what happened when he went for a 'bone marrow' biopsy.

Going for diagnostic tests can be time consuming, especially for those who had to travel to another city for specialist tests and scans. Many of those interviewed were still going to school everyday 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 is are adequate white blood cells, especially neutrophils, enough platelets and a normal haemoglobin. Others include heart and lung tests, kidney tests and hearing tests to check that the young person is well enough to have their treatment. No-one would have chemotherapy 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.

Describes his first CT scan and how the strange warm feeling (from the injection of the dye in his groin) made him think that he might have wet himself.

Describes what it is like having a PET scan.

An ophthalmologist (eye doctor) recommended an MRI scan after doing various visual tests.

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 after the test, which some young people found very difficult.

Felt nauseous after a general anaesthetic so had his next lumbar puncture under local anaesthetic.

Had his lumbar punctures and intrathecal operations under sedation.

Some forms of cancer need you to be treated by having a 'bone marrow' transplant. This is because your treatment with chemotherapy and/or radiotherapy may need to be so intensive that it destroys the cell making part of your bone marrow (these cells are the ones that go to make up your blood). Before starting intensive treatment you may have some of your own bone marrow cells 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 your treatment when all your own bone marrow may be 'knocked off' - you are then given back either your own stored bone marrow cells or those of the matched donor.

Describes having a bone marrow transplant and being in strict isolation afterwards.

Last reviewed April 2010.

Last updated April 2010.