Tamoxifen or Tamoxibollox

 

Our discussions about Tamoxifen and other hormonal treatments for breast cancer are among our most commented upon.

    In medical circles, Tamoxifen is described as ‘well tolerated’, particularly in comparison to harsher treatments like chemotherapy and radiotherapy.  Very often, once our active breast cancer treatment finishes, we are then sent off into our futures with a packet of pills. The message we are given is that we are now “well” and we can carry on with our lives. Our experiences point to a very different reality.

    There is substantial evidence to support the effectiveness of Tamoxifen and aromatase inhibitors (Letrozole, Anastrozole, Exemestane) in preventing a recurrence of breast cancer. These drugs work by eliminating estrogen from the body, thus providing protection against estrogen fed cancers. It’s important to bear in mind that there are many different types of breast cancer, and each of us will have her own individual treatment regime. For those cancers that are not estrogen receptive, such as triple negative breast cancer, there is no equivalent ongoing drug, which can leave those not taking medication feeling unprotected and vulnerable. 

    We are struck by the struggles that some women experience on adjuvant hormonal therapy, with some of us suffering significant adverse side effects. What baffles us is not only the lack of support and information available for women prescribed these treatments but, for many, the lack of recognition given to the cumulative impact of these effects on our quality of life. Since many of us are now given hormonal treatments for 5, maybe even 10 years; that, we agreed, is a long time to be taking tablets that make us feel so unwell. 

    For those of us who tolerate these drugs well, there is a significant comfort factor in knowing we are doing all we can to prevent the recurrence of cancer, although it needs to be remembered that taking these tablets can be a daily reminder of breast cancer.  For those of us who suffer side effects that compromise their quality of life, this can present a huge challenge. The list of side effects is varied and long and may include: menopausal symptoms such as hot flushes and bone, joint or muscle pain, mood swings, fatigue, weight gain, vaginal dryness and impaired cognitive function to name but a few. Many women reported feeling below par all the time, and unable to fully enjoy life as a result. As a lack of estrogen may affect bone density, this needs monitoring and is a further worry. 

    For some of us, the side effects are so bad that we cannot tolerate these treatments, and so in consultation with our oncologists, we experiment with different versions of the medication, and we try to address the side effects with counteractive treatments. But this happens over months, even years, at a time, and the longevity and relentlessness of it all becomes mentally challenging. For a few of us, there comes a point where we just feel so awful that we decide not to continue taking the drugs. 

    The difficulty is that, for these women, there just isn’t enough help in managing the side effects. Our appointments are few and far between and all the while we are expected to be fully functioning members of society – we are employed, we are mothers, we are partners, we are carers, we are volunteers - so how are we meant to maintain all that when coping with terrible side effects every day? It is a shame that women give up these drugs without being given enough proper support, which may enable them to feel better and find that they can keep going after all.

    How we asked, does Tamoxifen work, and how does it impact on the brain?

    Naz explained that Tamoxifen inhibits the absorption of estrogen to cells that would otherwise be nourished by this hormone, especially brain cells which need estrogen for healthy cognitive functioning.

    She told us that there is evidence that frontal and temporal structures of the brain are affected most. These areas are involved in everyday memory, our executive functions that enable us to ignore distractions to focus, switch between tasks and update information in working memory.

    Tamoxifen, Naz explained, has also been known to interrupt “neurogenesis” which refers to the process by which the brain forms new neural connections and re-generates itself.

    Naz told us that overall, research conveyed the simple message that Tamoxifen can contribute to impaired cognitive function. While the evidence can be mixed at times, the general story conveys a similar message in both post and pre-menopausal women.

    We know that the brain shows under-activity in areas that support healthy cognitive functioning when active treatment ends, but then at times it has shown over-activity to recruit resources that are needed to support daily functioning. Ultimately, more research is needed to see what we can do to keep the effects of Tamoxifen and/or Aromatose Inhibitors on cognitive function to a minimum.

    In terms of the impact on our cognitive function, the above explanation translates to the following symptoms: a foggy brain, forgetfulness, poor concentration, lapses in attention; many of us experience slow processing speed and difficulties in relation to retaining information, particularly our short-term memory, our 'working memory' by which we mean holding one task or piece of information in our mind while completing another task, and, with our 'executive function' which is 'the CEO of the brain' because it involves those skills which allow us to set goals, plan and get things done.

    Sometimes our mistakes are small and we laugh at ourselves, but more often our confidence gets undermined and we worry about our ability to function, that we might be seen as incompetent at work or that we are poor company.