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Research project: A longitudinal cohort study of joint and muscle aches, pains and stiffness in women with primary breast cancer

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Breast cancer affects one in nine UK women and almost two thirds of newly diagnosed women are now likely to survive for at least 20 years. A greater proportion of women with early BC are now receiving adjuvant therapy. The limited research evidence suggests that joint pain may be experienced by three quarters of women following primary BC treatment.

Joint pain may cause or contribute to patients stopping treatment: an online survey conducted by Breast Cancer Action found that 30% of respondents reported that they had discontinued aromatase inhibitor (AI) use due to adverse effects, of whom 47% did so due to joint-related problems.
Little research has focused specifically on joint pain JAPaMS after BC treatment. One reported that 82% of a series of 51 women taking AIs reported joint pain and 73% reported joint stiffness, with 66% attributing these symptoms to AIs [14].

Given the lack of research it is not surprising that the causes of JAPaMS following early BC treatment are unclear, and that no underlying disease pathology has been described. Although these symptoms can be caused by ageing and/or the menopause, there is some evidence to suggest that they are specific to or aggravated by primary BC treatment. In patients receiving adjuvant chemotherapy or hormonal therapy, these symptoms may occur as a direct effect of treatment, interactions between treatments or as a consequence of treatment-induced premature menopause. Oestrogen deprivation has been suggested as a possible cause. In postmenopausal women AIs lower oestrogen levels to virtually non-detectable levels. Although oestrogen has no specific known effects on articular structures that would protect against joint pain, it influences inflammation and neural processing of nociceptive input. AIs have been reported to cause joint pains and muscle stiffness, but the extent of this not been formally investigated.

Joint pain is an important issue because it causes distress but also because it may impact on women's functional ability: this has not been investigated. They may also be confused with metastatic disease symptoms and so cause worry. At present, women without metastatic disease can be told that their joint pains are not due to cancer, but not what the causes are or what to do about it. Patient discussion fora suggest that women do not find this information adequate. The lack of evidence about how hormone treatment impacts on joint pain may contribute to inadequate side-effects communication in breast cancer which, it has been argued, is stopping patients making informed judgements about proposed treatments.

In summary, joint pain is commonly described in early breast cancer, but has been the subject of little research. A better understanding of the natural history, the relationship to the impact of a cancer diagnosis per se and to adjuvant treatments, and of the impact on women's lives is needed to better equip health professionals to support patients and to enable them to provide more accurate information to inform treatment decisions, and to develop effective interventions.

1) To establish the natural history of joint aches, pains and muscle stiffness (JAPaMS) over time in women being treated for early breast cancer 2) to investigate whether and how the prevalence and natural history of JAPaMS differs in women receiving adjuvant therapy for invasive early breast cancer from that in women following treatment for ductal carcinoma in situ (DCIS) 3) to explore the impact of JAPaMS on quality of life (QoL) in women with invasive early breast cancer 4) to explore their impact on functional ability 5) and to undertake an exploratory analysis of how the natural history of JAPaMS differs between adjuvant treatment groups. Study findings will be used to educate health professionals about the natural history and impact of these under-researched and under-treated symptoms, better equipping them to support patients and enabling them to provide more accurate information to patients to inform treatment decisions. Findings will inform future research into both the causes of JAPaMS in breast cancer and into effective interventions.

Project team

Professor Julia Addington-Hall
Dr Deborah Fenlon, Senior Research Fellow
Dr Peter Simmonds, Consultant Oncologist
Dr Jo Clough, patient adviser

Project funder

Breast Cancer Campaign

Associated research themes

Breast cancer
Cancer survivorship

Related research groups

Complex Healthcare Processes
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