Tests, investigations and surgery

Various tests are used to diagnose lymphoma and to assess its aggressiveness and spread. While initial tests may reveal lymphoma, further tests may be needed to determine which of several types of Hodgkin or non-Hodgkin lymphoma it is. Patients with lumps or enlarged lymph nodes usually have a biopsy. This involves removing part or all of a lump under a general, or sometimes a local anaesthetic, to examine the cells under a microscope. Occasionally people may have cells taken from the lump using a needle (although a more definitive biopsy is still usually required after this). A CT scanner or ultrsound may be used to guide the needle. 

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The apparent urgency with which tests were done could be alarming. One woman was worried to hear her surgeons discussing how quickly her biopsy should be delivered to the laboratory. A woman recently diagnosed explained that not enoughmaterial was taken from her first biopsy so a second was done under general anaesthetic leaving her with numbness around her jaw which she hoped would disappear in time. 

People whose only enlarged lymph nodes are in the abdomen or chest may need more extensive surgery under general anaesthetic to obtain a biopsy. Once opened up, more tumour may be found than initially suspected. A man who had expected to have one lump removed from his neck was told by his surgeon, “I went on and on finding more”. Another man had 'a mass of tumours' removed from his abdomen. A woman whose chest lump was biopsied was left with damage to the nerves and muscles of her arm (this is not a typical outcome).

A man whose disease recurred at the top of his spine had an operation to remove an affected vertebra and biopsy the tumour. A woman who was initially diagnosed in the 1980s had an operation called a staging laparotomy to find out how far her disease had spread, which included removing her spleen (scanning has significant improved since then and this is not done today). A man with persistent tonsillitis had his tonsils biopsied during a tonsillectomy. One man's lymphoma was wrapped around one of the vertebrae in his spine causing the bone to go soft and disintegrate. He had surgery to remove the entire tumour and the affected vertebra and to reconstruct his spine using a metal cage. Using surgery as treatment for lymphoma is extremely rare unless it has caused complications such as bowel obstruction.

It is common for lymphoma to affect the bone marrow (the jelly-like substance in the middle of bones) so the bone marrow may be biopsied by inserting a needle into the hip bone to take a sample. It is usually done under local anaesthetic although some people had it under a general. Many people feared that this would be worse than it was - one man postponed having it for several days, although the actual test was not too painful. While some people described the test as momentarily painful, for others it was extremely painful despite the local anaesthetic. Some said they could hear and feel the pulling and pushing of the needle in their hip bone. Those who glimpsed the needle were alarmed by the size and some wished they hadn't looked. Some people were offered gas and air or a sedative to relax them before the procedure and make it less uncomfortable. The pain was usually brief and most described only mild discomfort after the anaesthetic wore off; standard painkillers relieved it. 

Further investigations include blood tests, x-rays and scans (MRI, CAT or PET). An MRI scan involves lying still on a couch inside a metal tube that is open at both ends. The machine is noisy and some people feel claustrophobic and find the experience unnerving or frightening. Several people said that their experience of a CT or CAT scan was better than they had expected because the doughnut-shaped scanner caused less claustrophobia than the MRI tube. One man likened it to passing through a washing machine. People may be asked to starve for a few hours before a CT scan, but for many people the worst aspect was having to drink large volumes of a bitter tasting fluid and having an injection that leaves a strange, warm, wet feeling (as if they had emptied their bladder). People also had to resist the urge to empty their bladder until after the scan. Some received an injection instead of, or as well as, a drink. People were unnerved by both types of scan and found it difficult to lie still and follow instructions about when to take breaths. However, some of the people we talked to who had PET scans were given diazepam (Valium) to make them relax so they could lie still (though this is not standard practice); some said they were not very aware of the procedure and one even fell asleep because the room was dark.

In addition to being used to make the initial diagnosis, tests like these may be used during and after treatment to determine its success, and during routine follow-up, as well as to investigate suspected recurrences. Other investigative tests undergone by people we talked to included: throat swab, electrocardiogram (which is used to check for problems with the electrical activity of the heart), lung function test, bronchoscopy (to check the airways), endoscopy (a test to look at the inside of the body – most commonly the digestive system), bone scans, lymphography (to look at the lymph nodes but it is rarely used now) and an HIV test. Echocardiograms (heart scans) are also commonly done.

Test results can take days or weeks to arrive and even a short wait is often difficult. A woman said that waiting two weeks for her biopsy results had been worse than any of the treatment. Some people had been told what the results might show or reassured that lymphoma was treatable, while others had been left in the dark. The stress of waiting was sometimes compounded by results not arriving at the promised time. A few people were unconcerned while waiting for their results because they didn't think anything was seriously wrong: one went on holiday, another almost forgot to get the results.

Last reviewed February 2016.

Last updated February 2016.

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