Menopause: Our Experiences and Coping

We've had some heated discussions on Menopause, its impact on us and how we deal with its effects. Our discussions have revealed that chemically induced menopause through breast cancer treatment affected those of us who were in our 30s and 40s as well as those of us who’d experienced a natural menopause prior to diagnosis. What was agreed on was that the severity of a chemically induced menopause was much greater than a naturally occurring one. For those of us who’d already experienced menopause there was a chance to be affected by it yet again.

    A running concern through our comments revealed the lack of communication from our medical teams about menopausal effects, or how to manage them. We were to research the effects of treatment induced menopause ourselves and seek help on how best to manage the symptoms which are at most times debilitating. There were very few who reassuringly had more manageable symptoms. Many of us were grateful to support groups like BRiC who provided some information on how to address the symptoms.

    Menopausal symptoms are challenging and can be debilitating. BRiC members discussed a vast range of symptoms affecting our quality of life: from vaginal atrophy and dryness, lack of libido and sexual dysfunction threatening our ability to maintain intimacy, to brain fog, forgetfulness, joint pain and cramps, as well as fatigue and hair loss, weight gain and let’s not forget hot flushes and insomnia… the list continues.

    For many of us such symptoms persist for years post active treatment mainly sustained through endocrine therapies such as Tamoxifen, Anastrozole and Letrozole. The impact of such symptoms adversely affects our workability with many of us reporting that we’ve either had to scale down, take early retirement, or change jobs to less-demanding ones. Our self-esteem is affected and our confidence diminished in the workplace, with some of us reporting we felt dumb and stupid (something also pointed out by family members). A radically induced menopause with full blown symptoms can leave us emotionally and physically shattered and increase our vulnerability to anxiety and depression.

    We discussed the possibility of supplements aiding in the management of menopause, though these were organic developments not necessarily prescribed by our medical teams. Some of us mentioned Vitamin D and Calcium with Magnesium, as well as cod liver oil. Any supplements taken should be discussed with our medical teams we noted. Some of us mentioned that acupuncture has helped and many emphasised the positive effects of exercise and diet, though shedding weight even with a balanced diet and much exercise was a challenge for many. The benefits of exercise are long documented and research from BRiC shows that challenging our brains in adaptive ways can help with brain fog improving cognitive health. With research documenting a causal role for cognitive function in protecting against anxiety and depression, this self-management tool can only empower us with the control that cancer has so cruelly taken away.

    Unfortunately, unlike cancer-free women, HRT is NOT really an option for us as it can fuel recurrence and increase our chances of secondary breast cancer especially if our original diagnosis was hormone related. In fact some of us wondered if our diagnosis was fuelled by HRT in the first place. In addition, most women who are not affected by breast cancer do not know that HRT is NOT an option for us, so some comments on how HRT can help us may come across as insensitive. The fact is that there are no simple solutions for us.

    No one symptom of menopause affects us in isolation, the symptoms are very much linked providing a difficult environment to function healthily at best of times. Our emotional, sexual and cognitive health are all interlinked as our bodies work in harmony. A collective threat to our basic functioning is damaging and our members' experiences clearly demonstrates the emotional and physical pain they endure. This calls for an urgent need for measures to systematically address menopausal effects, longer term. A link suggested by one of our admins: Dr Caroline Humber, provides some useful information as a starting point, but more needs to be done: https://flipbooks.leedsth.nhs.uk/LN001794.pdf

Weekly Discussion Summary ~ Coping with Fatigue

"Many people confuse 'fatigue' with 'tiredness' but it's not the same. Fatigue is the invisible legacy of breast cancer."

Our discussion this week focused on fatigue, a significant side effect of many of the treatments of breast cancer. Fatigue affects our ability to work, relationships, family life and our social lives. Many of us described only just being able to keep our head above water in terms of doing the essentials in our lives, with no energy left for ourselves. Others shared that they have to make daily choices - a game with the children or making dinner from scratch - they can’t manage both. Some women give up work, others reduce their hours, but not everyone can.

Our discussion included women with primary and secondary breast cancer. For the latter, ongoing treatment means their fatigue is continuous and may go in cycles alongside treatment regimes which will never finish.

For many, the support they received from family and friends whilst going through active treatment falls away once treatment ends, but fatigue remains and can worsen. Many of us felt unable to explain our fatigue to others and find family and friends are impatient with our need to rest, change or cancel plans or not join in as much as we used to. We often look well but fatigue is invisible and can continue for many years and is sometimes overwhelming.

The fatigue we experience isn’t just general tiredness, it can be debilitating and is not resolved by a good night’s sleep. Fatigue affects our ability to concentrate and our mood. Many reported feeling frustrated at being unable to focus, and irritable with those close to them, tearful and over-emotional. Fatigue is exacerbated by the fact we find it difficult to get a good night’s sleep, whether disturbed by menopausal hot flushes, anxiety or the fact that being overtired can in itself inhibit restful sleep. A minor illness like a cold can knock us for six. Some of us experience pain (that in itself is tiring) along with side effects of pain alleviating medication.

We shared tips on coping with fatigue and a few common themes emerged, one of them being extra rest. Planning ahead to ensure that rest time can be fitted around other activities is important, and we often have to prioritise rest time over and above socialising. This can make it hard to keep up with 'normal' activities and leads us to feel isolated, especially as we feel people expect us to 'get back to normal.'

We heard that pacing and planning to manage energy can be key to avoid a 'boom and bust cycle' - you wake up feeling good, determined to make the most of your energy, you rush around doing all those things you've been putting off... and then crash. You're exhausted. It can help to plan in a rest day before and after a big day out, a party or family activity, or ensuring a quiet weekend follows a busy period at work. Those lucky enough can schedule an afternoon nap, or rest, others catch up on sleep at weekends. Some go to bed early in the evening, which for those at work may make us feel like we have no life.

Exercise can also help (though it can be hard to feel like exercising). Many described their strength and stamina improving by gradual increases in activity. Others described being energised by exercise, for some that means a walk round the block in their lunch hour, for others a dance or yoga class or perhaps a park run.

A diet that’s low in sugar can help, because it reduces fluctuations in energy, with vitamin supplements, as supported by their oncologist or GP, were also recommended by a number of women.

Learning to delegate and to accept that we can't do everything - at home or work. Cut corners and take short cuts, ask older children and partners to help.

Another suggestion is to take up a quiet absorbing hobby, crafting perhaps, or knitting and crocheting. Meditation and mindfulness also helped some of us to feel more at peace and less exhausted, and lowering anxiety levels helps us to sleep better at night.

So many of us are mourning our pre-cancer energy levels, our pre-cancer fitness levels and cognitive sharpness. Fatigue affects both body and mind, and adjusting to new levels and the corresponding lowering of expectations takes a lot of hard work. This, of course, contributes to fatigue, and many of us struggle with our own expectations as well as the expectations of others.

We were comforted by the fact that we realised we are not alone, and, knowing that fatigue is very commonly experienced following a breast cancer diagnosis.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a private message via facebook https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Supplements?

Is there a role for supplements following a diagnosis of breast cancer?

Our previous discussion on diet highlighted controversial scientific, as well as lay, views about the role of specific diets in cancer prevention, progression and treatment. Naz told us that the literature shows that there is a similar level of disagreement regarding the role of specific supplements when it comes to targeting cancer. Evidence from clinical trials showing direct causal links between the effects of some supplements/treatments on cancer are weak or non-existent.

However, as Naz explained, this does not mean that we should rule out theoretical ideas based on these links. The effect of supplements on general health is also debatable, whether herbal or chemical. While there is general knowledge that certain compounds are healthy and can boost our immune systems, evidence based trials to prove their efficacy are scarce or have not been able to produce replicable results.

Where does this controversial, and sometimes overwhelming evidence leave us?

Our discussion, which included women with primary and secondary breast cancer, highlighted our hopes for better health, irrespective of the evidence, because we want to feel better and we want to support our physical well-being. Controlling what we eat and ensuring that we are providing our bodies optimum nutrition is an obvious way forward to help both our physical and our mental health.

Many of us described wanting to re-build our strength and immune system following debilitating treatments and continue to suffer short-term and long-term side-effects such as fatigue and pain. Janet summed up how many of us felt:

'It makes sense to me that our cells require optimum nutrition to work properly.....'

Hormonal treatments, and early menopause, impact on bone health and many of us took calcium as well as Vitamin D, under the supervision of our GP. Vitamin D3, we heard, was thought to be most beneficial. Vitamin C, magnesium, iron and probiotics were other popular choices, as well as Omega 3 and tumeric. Some women had sought advice from Nutritional Therapists, or done considerable research to educate themselves on this subject. Others had attended workshops at their local cancer support centres or said they were wary of taking supplements and had instead adjusted their diet to try to ensure optimum nutrition.

Have you been using supplements? Do you find them helpful? We'd love to hear your views and experiences.