Lymphoma

Treatment decisions

As a result of much research the treatments for many types of newly diagnosed lymphoma are now standard and few choices are needed. Decisions between various courses of action are more often needed when treating lymphoma that has not responded to first-line treatment or has relapsed.

Many people said they had been offered no treatment choices or had felt there had been no choices to make. People commonly said that, in any case, they trusted their doctors' expertise and went along with their recommendations, questioning nothing. First impressions could be important - one man had been so impressed on first meeting his specialist that he would have done anything he suggested. Many said they would do whatever their specialist told them if they thought it might cure their illness or relieve their pain; some followed the professional advice 'to the letter'.

Several had felt no involvement in decisions, which a team of doctors seemed to have made 'behind closed doors'. Some people said they would have preferred more involvement, even if only in the practical details, such as when to schedule the treatment.

Some people had felt involved in treatment decisions because their specialist had explained the various options. However, they often felt unqualified to make choices and would defer to their specialist's expert knowledge and follow the recommended treatment plan. One woman said, 'decisions were not made without me, I think I could have at any time queried a decision, changed a decision, and I did feel totally involved in the process'. Another said, 'I felt completely as if this was a treatment partnership. I was never bullied or bludgeoned.' A man said he felt 'the decision was always his', and another 'was happy with the way decisions were taken'.

Some people had raised concerns about aspects of their treatment plans with their specialist, had disagreements or refused certain procedures. One man asked his specialist about possible damage to his heart from treatment that might stop his flying career, and his desire to have more children. These issues were then considered when treatment decisions were made with his specialist. A young woman who had radiotherapy to her groin said she didn't want to be made infertile so her doctors did an operation to move her ovaries out of the treatment field. Another refused to have her pleural effusions drained on admission to hospital as an emergency because she felt so exhausted, and had it done later. 

No one we talked to said that they had refused treatment that might cure them. One woman was told she needed chemotherapy but was asked whether she wanted it and when she wanted it to start, to which she answered, 'Well yesterday, you know, just do it'. Another woman had expected to be given the choice of refusing treatment, but later was glad that she hadn't been.

A few people had been explicitly invited to make choices, including those whose disease didn't need immediate treatment but could be monitored (see 'Watch and wait') and those whose disease had relapsed. However, being offered a choice of high dose chemotherapy with stem cell support or not was often seen as 'no choice' since the chances of survival were much greater with this treatment than without it. 

People with relapsed disease who had already had several different conventional treatments were sometimes offered the choice of trying treatments that were new or experimental at that time. These included intravenous fludarabine, a mini transplant (see 'High dose therapy and stem cell transplantation'), rituximab or 90y-ibritumomab tiuxetan (Zevalin) (see 'Immunotherapy'). One man, who suspected that doctors are rather set in their ways and do not like patients to have ideas about their treatment, persuaded his doctors to give him Zevalin after having found out about it himself. The same man has since been offered the choice of having an experimental type of transplant that uses stem cells from the umbilical cord of a newborn baby.

Other people were given the choice of taking part in clinical trials designed to test new treatment regimens against standard treatment. In most trials, to avoid bias a computer randomly allocates volunteers to the different treatments being compared. This means that volunteers cannot choose which treatment they will have, and some will not know which treatment they are having. One man took part in a trial to examine whether taking vitamin D affects the length of remission and doesn't know whether he took the vitamin or a placebo. He later had two low doses of radiotherapy as part of a trial comparing this with standard intensive high dose radiotherapy. His tumour had shrunk after treatment so he and his specialist believe the new regimen, which brings the benefit of fewer hospital visits, must be working. Another man was in a trial investigating the ability of a drug called epoetin alfa (Eprex) to boost red blood cells; this drug is now used routinely. A woman took part in a trial investigating whether MRI scans can predict patients' response to chemotherapy. Some people who were not told the results of their trial would have liked to know.

Some people knew that they had not been invited to take part in clinical trials either because some aspect of their case made them ineligible for a particular trial or because there weren't any relevant trials being done at the time. Although she wasn't in a clinical trial, one woman said that the results of her treatment were being monitored for research purposes because she was unusually young to have a type of non-Hodgkin lymphoma called Mantle Cell.

Last reviewed February 2016.

Last updated February 2016.

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