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Meeting the needs of younger women with breast cancer

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Breast cancer is the most common cancer in women in the UK: 13,000 women died from the disease in 2001. The majority (80 per cent) of women diagnosed are over the age of 50 (it is presumed that the average age of the menopause is 50) and the lifetime risk of developing the disease is one in nine (Cancer Research UK, 2003).


VOL: 99, ISSUE: 42, PAGE NO: 20

Lisa Grosser, is younger women’s breast care nurse, Breast Cancer Care, London


Breast cancer is the most common cancer in women in the UK: 13,000 women died from the disease in 2001. The majority (80 per cent) of women diagnosed are over the age of 50 (it is presumed that the average age of the menopause is 50) and the lifetime risk of developing the disease is one in nine (Cancer Research UK, 2003).



There are various risk factors for developing the disease, although the two most common are increasing age (as you get older your risk increases) and a family history of the disease (although this accounts for only up to 10 per cent of all cases) (McPherson et al, 2000). Box 1 provides an overview of the estimated age-related risk of breast cancer.



Younger women with breast cancer
‘Younger women’ is a term that is usually used to describe women in their 20s and 30s. There is also evidence to suggest that women who consider themselves ‘younger’ should be included in this group (Dunn and Steginga, 2000). In addition, some research on ‘younger women’ has included those aged up to 45 (Hassey Dow, 2000a; Thewes et al, 2003).



A sense of isolation is a key issue for many premenopausal women following a diagnosis of breast cancer. For women in their 20s and 30s this sense of isolation can be further compounded by the rarity of such a diagnosis, as there are only just over 2,000 women diagnosed with breast cancer in this age group each year (Cancer Research UK, 2003).



For women who are diagnosed with breast cancer during pregnancy (about 1-2 per cent of all cases of breast cancer (Dixon et al, 2000)) the sense of isolation can be even greater.



Research suggests that younger women are more likely to experience emotional disturbances (Northouse, 1994). They face an uncertain future and are at a greater risk of experiencing anxiety and depression. Women diagnosed at a younger age can also experience a significant sense of loss, whether this is related to health, opportunities, choice or control (Roberts et al, 1997).



Having breast cancer can be more difficult for premenopausal women. These women are facing a life-threatening illness with perhaps little experience of life (Roberts et al, 1997).



Furthermore, they may be making decisions about their life well before they had intended to do so, and at such a young age they may not yet have developed the life skills necessary to help them do this (Mor, 1994).



Other factors can add to the stress of a diagnosis of cancer. Alongside the diagnosis and treatment of their cancer, some women are likely to have other responsibilities, such as study, work or children to look after. For women who have children, breaking the news to them can be a great cause for concern (Barnes et al, 2000).



A diagnosis of breast cancer under the age of 40 suggests that there may be an underlying genetic link (British Association of Surgical Oncology (BASO) Breast Speciality Group, 1999), although being diagnosed in this age group does not necessarily mean an abnormal gene will be identified. It is estimated that 33 per cent of women who are diagnosed in their 20s and 22 per cent of those in their 30s will have an identifiable gene (Claus et al, 1996).



Whether or not there is a family history of breast cancer can impact on a woman if she is a mother or is planning to have children after treatment, as she could potentially pass on the gene.



For someone with a family experience, or a known family history of breast cancer, there can be the added distress of being reminded of a relative’s illness.



Reproductive health is another area of anxiety for younger women diagnosed with breast cancer. Not only will they be concerned by a diagnosis made during pregnancy, they may well be anxious about the possibility of having a child after treatment.



They may have to face difficult issues surrounding their fertility and the possible side-effects that treatment could have on fertility.



Breast cancer during pregnancy
A woman who is diagnosed with breast cancer during her pregnancy or up to 12 months after the delivery of her child is termed as having breast cancer during pregnancy (Petrek, 1994).



Some women may feel there is a connection between their pregnancy and breast cancer but there is no evidence to suggest that this is the case (Hoover, 1990).



It can be devastating receiving the news of a cancer diagnosis during what should be a happy and joyous time. The sense of loss may be considerable.



Some women may feel as if the opportunity to bond with the baby has been taken away as a result of the treatment or its side-effects. For example, a woman may be unwell during chemotherapy and unable to care fully for her child.



Although a termination of pregnancy is not usually indicated, it may be recommended if the woman is in the first trimester or if the disease is extensive (Hoover, 1990). On the other hand, some women may feel that it is the best option for them.



Preserving fertility
The potential loss of fertility can be an issue for a premenopausal woman especially if she has not yet started or completed her family. Although the specialist’s primary focus is to treat the individual’s breast cancer, for some women retaining their fertility will be their principal priority.



However, it is important to realise that retaining fertility will not be a priority for all women. For some, their focus will be on getting through their treatment (Surbone and Petrek, 1998).



How treatment affects fertility
The options for treating breast cancer in women are:



- Chemotherapy;



- Ovarian ablation;



- Tamoxifen.



Chemotherapy is the treatment most likely to affect fertility. Before starting chemotherapy there can be considerable uncertainty as to whether infertility will be temporary or permanent.



Ovarian ablation can also lead to infertility. This treatment stops the function of the ovaries and can be achieved in three ways: radiotherapy or surgery to the ovaries or by monthly injections of goserelin (Featherstone et al, 2002).



Goserelin, a luteinising hormone-releasing hormone agonist, works by limiting the release of luteinising hormone from the pituitary gland and results in oestrogen suppression (AstraZeneca, 1999). With goserelin, ovarian function returns once treatment ceases, however, both radiotherapy and surgery result in permanent infertility.



The hormone therapy tamoxifen does not directly affect a woman’s reproductive function, although the age at which she starts treatment can be significant (Burstein and Winer, 2000). For example, if she begins taking the drug during her late 30s, after taking it for the recommended five years, she may have already undergone or started her natural menopause.



For women with breast cancer the options for preserving fertility are limited and are generally only available to those under the age of 40, who are not yet experiencing a natural decline in their fertility.



Some individuals may opt for a chemotherapy regimen that contains fewer anthracycline agents, which are more likely to cause permanent infertility. For example, such a regimen may include FEC (5-fluorouracil, epirubicin and cyclophosphamide) or AC (doxorubicin and cyclophosphamide), which are less harmful to the ovaries (Burstein and Winer, 2000).



Some women may decline chemotherapy altogether (Surbone and Petrek, 1998). However, research demonstrates that women diagnosed with breast cancer under the age of 35 are more than likely to retain their fertility following chemotherapy, whatever regimen is used (Reichman and Green, 1994).



There is some evidence to suggest that medically shutting down the ovaries prior to chemotherapy, using goserelin and continuing for the duration of treatment, may protect them. However, this treatment is not routinely available and further research is needed in this field (Burstein and Winer, 2000).



In vitro fertilisation (IVF) can be used as a way of preserving fertility in relation to the side-effects caused by chemotherapy. However, IVF is only possible prior to the start of treatment and not once treatment has been started or has been completed.



If a woman with breast cancer would like to undergo IVF in order to harvest her eggs for a later date, then her chemotherapy will usually be delayed by about one month. IVF may be contraindicated in women with an oestrogen receptor-positive breast cancer, where the disease grows in the presence of oestrogen, due to the hormones involved (Surbone and Petrek, 1997).



There are two other procedures in the field of reproductive research but these are still in their early stages. These are:



- Egg freezing, which has recorded only a few live births;



- Ovarian tissue biopsy, which has yet to achieve any live births (Schover, 1997).



Premature menopause
A premature menopause is one that occurs before the age of 40 (Burstein and Winer, 2000). Whether this is temporary or permanent will depend largely on the treatments the individual receives as well as the age of the person. The symptoms can include:



- Hot flushes;



- Thinning hair;



- Vaginal dryness;



- Short-term memory loss;



- A lack of energy, either temporary or permanent.



A long-term complication associated with a permanent premature menopause is a decrease in bone density, which can lead to osteoporosis.



These symptoms can make a woman feel old before her time and as if her youth has been taken away. Not only can these symptoms interfere with day-to-day tasks like work, study or playing with children, they are also related to an altered body image and to sexual problems (Schover, 1997).



It is also worth noting that the menopausal side-effects of breast cancer treatment can be more severe in premenopausal women than postmenopausal women receiving the same treatment (Tish Knobf, 1996).



Pregnancy after breast cancer
Women are generally advised to wait about two years after a breast cancer diagnosis before trying to conceive. This is due to the increased risk of the cancer returning during this period.



However, it is important to remember that these recommendations are only guidelines and some women may choose not to follow them (Surbone and Petrek, 1998; Hassey Dow, 2000b).



For some women pregnancy after breast cancer treatment is a positive step towards putting the cancer behind them. However, others may be concerned that pregnancy will cause the cancer to return, despite there being no evidence to support this theory. They may also fear the treatment may affect any future children (Hassey Dow, 1994).



If a woman has undergone radiotherapy as part of her treatment, the breast that has been treated will not grow and expand during pregnancy in the same way as her other breast. This is due to fibrosis caused by the radiotherapy and the uneven development can result in an altered body image.



However, breastfeeding is still possible. Although a woman may be unable to produce enough milk from the affected breast, it is still possible on the untreated breast (Hassey Dow, 2000b).



Permanent infertility
Following treatment for breast cancer, permanent infertility is diagnosed when menstruation has not occurred for a 12-month period.



Regular high blood levels of follicle stimulating hormone (FSH) are required to confirm the diagnosis (Tish Knobf, 1998). Biopsy of ovarian tissue can also be undertaken although this is not necessarily required (Abernethy, 1997).



Permanent infertility can be devastating to a woman during an already difficult and traumatic time.



Infertility can also increase the risk of developing sexual problems and specialist intervention, for example by a counsellor, may be necessary (Schover, 1997).



Breast Cancer Care is the UK’s leading provider of information, practical assistance and emotional support for anyone affected by breast cancer.



The Lavender Trust at Breast Cancer Care is a fundraising body that was specifically set up to provide services for younger women with breast cancer.



The younger women’s breast care nurse (the only post of its kind in the UK) is available to meet the support and information needs of premenopausal women with breast cancer as well as promoting these needs on a wider level, for example to health professionals.



In addition, there is ongoing development and evaluation of the services. Others services include peer support and telephone support groups.



A two-day pilot forum has also been held for women who are no more than two years into their diagnoses. Participants were given the opportunity to voice concerns about their diagnoses.



Analysis of the feedback resulting from these sessions revealed the need for:



- Peer support;



- More information and support (both specific and generic) from health professionals;



- Better communication between health professionals.



Interestingly, these issues are very much in line with The NHS Cancer Plan, which looked at possible ways of improving care for people with cancer (Department of Health, 2000).



Implications for future practice
Both the outcomes of research undertaken to focus specifically on younger women with breast cancer and feedback from the forum run by the Lavender Trust show that younger women diagnosed with breast cancer can have specific issues and needs that may not be met.



These findings clearly have implications for future practice. Sharing and exploring the issues raised and adapting patient care can potentially improve the experience of these women.



Breast cancer is not commonly found in premenopausal women, particularly those in their 20s and 30s. Therefore, women with breast cancer in this age group can experience a great sense of isolation. Not only are they facing a life-threatening illness as younger adults, they are still planning their lives and futures, something which breast cancer can interfere with.



It is important to realise that as health professionals we are in a unique position to be able to help address the unmet needs of these women. This in turn contributes positively to improving their well-being.



- This article has been double-blind peer-reviewed.



Breast Cancer Care



Kiln House



210 New Kings Road



London SW6 4NZ



Lavender Trust at Breast Cancer Care or call 020 7384 4617

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