Leukaemia

Treatment-induced infertility

Some leukaemia treatments can impair the production of sex hormones, eggs and sperm. In particular, high dose chemotherapy or total body irradiation (TBI) given as preparation for a stem cell transplant, will do this, resulting in temporary or permanent infertility and other symptoms including hot flushes, impaired libido, weakness and tiredness. Women may have a premature menopause with the risk of osteoporosis. Hormone replacement therapy (HRT) may be offered to relieve menopausal symptoms but it is not suitable for all women.

Several people told us that infertility was not a problem for them as they didn't want children or had already completed their family; some had already been sterilised. Most people were warned about possible infertility before starting any treatment that might cause it. However, Ian, aged 35, was in intensive care when his acute leukaemia was diagnosed, and high dose chemotherapy was started immediately, so he wasn’t told about infertility until afterwards.

Dianne, who was childless and aged 50 at diagnosis, had not been warned about infertility before starting treatment and was shocked when her consultant explained it when she started having hot flushes (see clip below). Some women said that although they had been warned about possible infertility, it had not been made clear that they might experience an early menopause.

Men whose treatment may make them infertile are usually invited to ‘bank’ some sperm samples before it starts. This is often done in a different part of the hospital but men who are already in their own isolation room may be invited to do it there. The samples are frozen and stored for possible use in the future. Treatment for acute leukaemia usually starts as soon as possible after diagnosis, so men who wish to bank their sperm have to do so quickly at a time when they are still in shock from learning the diagnosis. Aley said his treatment was delayed by two days so he could bank his sperm.

It is less easy for women being treated for leukaemia to preserve their fertility. It may be possible to store some fertilized eggs (embryos) using sperm from a partner, so they can be re-implanted into the womb later. It may also be possible to freeze unfertilized eggs but the success rate with these is lower than for embryos. However, collecting the eggs takes a few weeks so this is possible only where it is safe to delay the start of treatment. Research is being done into the storage of pieces of ovarian tissue for later use, however, this procedure is still experimental and reimplantation of the thawed tissue may not be available at all UK hospitals. So far, only a few babies have been born using this method but the number is rising all the time.

Julie had a slice of ovarian tissue frozen but has not used it, in the 11 years since, as she does not want to go through hormone treatment that might be needed without a guarantee of success. Other women were given the option of freezing embryos, or were told about it, but didn’t do it.

Coming to terms with the risk of infertility can be difficult and people react in different ways. Some felt it was better to concentrate on treating the leukaemia first and to consider the possible infertility later. For men who had banked their sperm, knowing that they might be able to father a child later was comforting. Jim, aged 24, said it was strange not knowing whether he was fertile or not and that he would like to have children one day but would be happy to adopt if necessary.

Young women who had not yet started a family, and for whom egg or tissue banking was not an option, were more likely to weigh up the benefits and risks of having treatment because of a strong desire to have children later. Many said that after their treatment was over they wanted to have the same life choices as everyone else. Ann, aged 33 at diagnosis, had just got married and debated with her husband and a nurse whether she should have a stem cell transplant that would definitely make her infertile. She eventually decided there was no point in having a child if she might not survive to bring it up.

Some women experienced a profound sense of sadness or loss when they became infertile during treatment, even if they had not been planning (more) children. Other people didn’t always understand why losing their fertility was so important to them when they were facing life-saving treatment choices.

Several women started the menopause during or after their treatment. Elizabeth’s periods stopped during interferon treatment but she has never had menopausal symptoms. Julie had terrible hot flushes and, after having a blood test to confirm she was menopausal, she was put on Hormone replacement therapy (HRT). Elaine was put on HRT before developing any menopausal symptoms. Elsa has hot flushes despite taking HRT and doesn’t know whether they are caused by her illness or the menopause.

Infertility has varying effects on people’s lives and relationships. Women who would have liked children often envied friends and family who had them. Some developed close relationships with other people’s children and became an ‘auntie’ or godparent to them. Ann said that her inability to have children might have been a factor in her subsequent marital breakdown. She and her husband had never considered adoption but she has no regrets as she has nine godchildren who she spoils more than she could her own. Julie went on to marry a man who didn’t mind her infertility. They considered adoption but decided against it. (See more on experiences of infertility).

The biological therapy imatinib (Glivec) does not cause infertility but there is some evidence that it can damage a developing fetus. Therefore people were advised not to get pregnant or father a child while taking it. Some women would have liked to get pregnant but were reluctant to take a break from imatinib in case it caused their leukaemia to recur. A 40-year-old woman who had been taking the drug for 8 years envies her friends who have children and regrets not having pursued the possibility of getting pregnant. A woman in her 30s considered the risks to the fetus were small so didn’t try to avoid pregnancy while in a relationship, but it didn’t happen.

Similarly, Glyn was warned that he should not conceive a child while taking lenalidomide (Revlimid) because birth defects were possible.

Last reviewed: August 2015.
Last updated: August 2015.

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