Living with and beyond cancer

Living with recurrent or advanced cancer

The primary aim of treatment for cancer is to cure it. Unfortunately this is not always possible, in which case doctors aim to achieve remission (where no signs of the disease can be detected), control its spread, or relieve its symptoms. These different aims depend on how big the cancer is at diagnosis and whether it has spread to other parts of the body. In general the earlier cancer is diagnosed the more successful treatment is likely to be.

Some types of cancer are typically diagnosed at an advanced stage when curative treatment is unlikely to be successful. Others are currently incurable and managed with regular or continuous treatment (see ‘Living with chronic or slow growing cancers of the blood). Even when initial treatment achieves remission the cancer may recur later in the same place or elsewhere in the body. The likelihood of recurrence varies between different types of cancer. Some people believe that if cancer returns they will die, but this isn’t necessarily true, treatment for a recurrence can often achieve further remission and some people experience multiple recurrences and remissions.
 
Several people we spoke to had experienced a recurrence of their cancer between 11 months and 10 years after their original diagnosis. Some people had more than one recurrence, and said that they had managed to enjoy life in between episodes of illness and treatment.
A man had been shocked when he developed cancer in his lungs four years after his pancreatic cancer diagnosis, but said that it hadn’t been as traumatic as the first time. Barry said he never thought his penile cancer would recur after having treatment when in his 50s, but when it recurred ten years later he said the prospect of having his entire penis removed was far less devastating than it would have been before and he would rather be alive without a penis than dead.
 
Sometimes a recurrence is detected by a blood test or scan conducted as part of routine follow-up before the person is aware of symptoms. In other cases, patients present their symptoms at or between routine check-ups. Sometimes the symptoms are the same as those experienced before the original cancer diagnosis, so are easily recognised, or they may be different.
It is not always easy for doctors to know whether symptoms presented to them are due to a recurrence of the cancer or to something else. A woman who experienced vaginal bleeding said her doctors had not at first suspected a recurrence of her ovarian cancer. When a man who’d had lymphoma developed a shoulder pain his GP attributed it to a trapped nerve. A woman developed a different type of leukaemia from the original one she had and it took her doctors a while to work out what was happening. Some leukaemias and lymphomas can change over time, and a woman whose non-Hodgkin’s lymphoma had originally been slow growing had a recurrence of a more aggressive type.
The same kinds of tests are used to diagnose potential recurrences as for the original cancer, such as blood tests, scans, or surgical removal of part (biopsy) or the whole of the tumour. Occasionally investigations are unsuccessful or cause complications. A woman whose ovarian cancer recurred for the second time had a tube with a camera on the end inserted through her abdominal wall (laparoscopy) to look at her abdominal organs; unfortunately her bowel was temporarily damaged by the procedure. When a man developed cancer in his lungs after pancreatic cancer his doctors attempted to look inside his lungs with a bronchoscope twice without success.
The same types of treatments are used for recurrences as for the original cancer and will depend on the type of cancer and where it has recurred. Surgery is often the first treatment given for ovarian cancer but one woman we spoke to only had a hysterectomy when her disease recurred the second time because of confusion about whether she’d had already had this done. Several women whose ovarian cancer had recurred had operations to bypass or remove bowel blockages. A man who had been in remission from testicular cancer for two years had a lump removed from his neck, and a woman had a lymphoma removed from her leg.
There are many different chemotherapy drugs or combinations of drugs that doctors can use to treat cancer, and new drugs are being tested all the time in clinical trials. Several people we spoke to had chemotherapy for a recurrence as part of a clinical trial. Some had several courses of different chemotherapies one after the other because their cancer didn’t respond at first. A woman with recurrent ovarian cancer agreed to chemotherapy although it was risky because she had kidney failure; the treatment made her critically ill but she is recovering and now only using complementary therapies. A man whose lymphoma recurred after 11 months chose chemotherapy over treatment to alleviate symptoms because of promises he had made to his family. David (Interview 78) had radiotherapy as well as chemotherapy for his recurrent pancreatic cancer, and another man had a stem cell transplant.
Some people who had experienced one or more recurrences had achieved remission again, one man was waiting for test results to find out whether his treatment had worked, and others were still in treatment. A few had been told that the level of a tumour marker (a substance that may be produced in the body in response to the presence of a tumour) was rising in their blood or that they had a currently inactive tumour, but that no treatment was needed yet. Others were resting between treatments.
 
Cancer treatment isn’t always successful and some people had to reconcile themselves to knowing that their cancer would not be cured and they may not live much longer. Sometimes the cancer had been advanced at diagnosis and treatment had never resulted in remission. Some people were considering whether it was worth having further treatment that was aimed at cure. Once this so-called ‘active’ or ‘curative’ treatment ends, people may receive palliative treatment aimed at relieving symptoms of advanced disease, such as pain, and making them as comfortable as possible as they approach the end of their life.


Last reviewed August 2015.

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