Coping with Tamoxifen and other Hormonal Treatments
The topic for this week’s discussion was ‘Coping with Tamoxifen and other Hormonal Treatments.’
Our discussions about Tamoxifen and other hormonal treatments for breast cancer are among our most commented upon. We are struck by the struggles that some women experience and some of us suffer significant adverse side effects. It may be that for every woman who struggles, there are several who tolerate the drugs without problems, but we suspect these are few. 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 taking hormonal treatments for ten years (some of us for five), that, we agreed, is a long time to be taking tablets that make us feel unwell.
Very often, our active breast cancer treatment finishes - surgery, chemotherapy, radiotherapy - and then we are sent off into our futures with a packet of pills, and 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 and many of us feel far from well.
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 oestrogen from the body, thus providing protection against oestrogen 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 not oestrogen receptive, such as triple negative breast cancer, there is no equivalent ongoing drug, which can leave those not taking medication feeling unprotected and vulnerable.
Generally speaking, Tamoxifen is given to pre-menopausal women and AIs to post-menopausal women, as the drugs act on the body in a slightly different way, but we do find many older women commonly taking Tamoxifen so this is not a hard and fast rule.
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 oestrogen 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. 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 and support in managing the side effects. It is a worry that women give up the drug without knowing that they may be able to take action to feel better and find that they can keep going after all.
Our previous discussions focus on how we feel when taking these drugs, and our summaries are available on our website. There is also a specific piece on branding.
https://bcresiliencecentre.blogspot.com/2018/11/weekly-discussion-summary-tamoxifen.html
https://bcresiliencecentre.blogspot.com/2019/02/weekly-discussion-summary-hormone.html
What action can we take to help ourselves whilst on Tamoxifen or AIs?
Trying a different brand is often what it takes to settle the side effects, and sticking to one brand once we’ve found what suits us can also be helpful. This isn’t always easy as pharmacies tend to supply the cheapest option at the time, but it is possible with the help of a friendly GP and pharmacist who will specify and fulfil a brand named prescription.
Side effects may be more severe at first, so it’s worth persevering to see if they settle, but also we think that side effects may be cumulative with aromatase inhibitors as our body’s oestrogen becomes more and more depleted.
Hot flushes may be helped by a mild dose of an antidepressant, and some women have found acupuncture helpful.
Joint pain is helped by regular gentle exercise. Supplements may be helpful, such as magnesium, and we suggest consulting a medical professional before taking these.
Taking short breaks to allow the body to recover may be useful, again in conjunction with our GP or oncologist.
Our advice to anyone taking these drugs is not to suffer in silence, but to seek help. Speak to your GP and have a frank discussion. Groups like ours, we agree, can help hugely as we share tips and support each other with our issues.
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.
The Healing Power of Art
This week’s discussion explored the role of art and creativity in supporting our wellbeing following a diagnosis of breast cancer, highly topical in light of it being the 9th annual Creativity and Wellbeing Week.
Art is a powerful form of self-expression. Art is not about success, nor, can you fail in it. Art is about communicating with your inner self, your feelings and your thoughts, what is hidden inside you. Art and creativity can be a means to express and a means to reflect on what is difficult to talk about. We can use art and creativity to express our state of mind.
Even more intriguingly, art can gives us back some control in the face of significant turmoils. We can control what we sketch, craft, sculpt, knit, draw, sew, paint, or write.
Naz told us that art can be a form of therapy which comes with promising effects with post traumatic stress disorder, anxiety, depression and a host of other related emotional vulnerabilities. Art can be helpful to our emotions and to our coping styles. Art can also influence brain plasticity, the ability of the brain to grow in resilient ways, to form and strengthen pathways that can help us regulate our emotions.
While many see art and science as independent we see them as interlinked - art is about creativity and science about discovery. We need creative minds to make big discoveries!
We asked some of our amazing members if we could share their awe-inspiring creations. This is just one of a series so watch this space for more!
#BRiCMembers
#Creativity
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 page.
“Fear is part of us, just as having cancer is part of us.”
Resilience may be born from fear and vulnerability, if we can learn to embrace it, but when it comes to our cancer-related fears, how easy is it actually to befriend it our fear or turn it to our advantage?
This week we discussed fear, that most primitive and powerful of human emotions which drives our instinct to survive.
Whether we have primary or secondary breast, we live with fear: women with primary breast cancer experience fear that our disease will recur. Women with secondary breast cancer fear spread or progression of the disease. For many, fear is our daily reality, and is as present as the air we breathe. Cancer-related fear feels continuous, sometimes we can put it aside, sometimes it can be overwhelming.
Fear, Naz explained, can fuel anxiety and can be a difficult emotion to regulate because it is so intense and raw.
Research shows that ignoring fear (by avoiding it or suppressing it), does not help us and can even lead to physical illness. Avoiding fear fuels the fire of this powerful emotion which will force its way to the surface in one way or another. In contrast, expressing our fears, though painful, can be a healthier coping mechanism.
Fear is hard-wired into our brains, so we are on the look out for danger and by helping us to act, it keeps us safe. Fear following a breast cancer diagnosis performs a protective function by helping us to identify threats to our health and by acting to protect ourselves. However, fear can also easily take over us, preventing us from fully taking part in life.
There was common agreement that we have all experienced a significant increase in fear as a result of cancer. Individually, the specifics of what we fear varies - we may fear treatment, which can make us poorly. We may fear the pain that the disease brings, or, we fear dying in pain. We fear relying on others to care for us. We fear hospitals, appointments and scans - so called ‘scanxiety’. Ultimately, we fear death. We fear not seeing our children grow up, or, not being here for their milestones. We fear leaving our families or our parents. At its most intense, we can feel totally overwhelmed and paralysed by fear.
The physical effects of fear can lead to debilitating physical symptoms - an upset tummy, hot and cold sweats, palpitations, headaches and even panic attacks. For some, fear increases symptoms like pain, confusing our ability to correctly interpret them.
Those of us who were already anxious shared how our breast cancer diagnosis can magnify it, sometimes leading to low mood and depression. Fatigue, caused by treatment, exacerbates our anxiety because we need to use vital mental resources to manage it, and the subsequent mental exhaustion sits on top of our physical fatigue causing us to feel like shutting down.
Cancer-related fear can spill over into other areas of our lives, making us feel generally anxious and fearful. Our thinking can become distorted, maybe we blame ourselves for our illness or feel guilty for others’ suffering. We worry that voicing our fears might give them substance and make them come true. Some of us believe that if we have survived something as traumatic as breast cancer, then we can survive anything. Some of us feel fearless, until a niggle, a scan reminds us of our vulnerability like a slap in the face.
For some, fear recedes with time. For others, it’s just as prominent as it was when we were first diagnosed. For a few, it gets stronger with time, as though we feel our luck will run out, especially around the so-called five year and ten year milestones. It emerged that many of us fear that the cancer is more likely to return the further on we are from diagnosis. We feel vulnerable without the reassurance of regular checks or when we are pushed back into the routine screening plans.
How do we cope with fear?
Some of us try to notice how it feels to move through and past our fear. Some of us try to build a safe, small world where fear is absent. Some of us look to those things that we can control, our diets, our lifestyle. Some of us use our fear to fuel our fire to live as well as we can for as long as we can. Fear enhances our gratitude and the feeling that life is precious. Some of us channel fear into doing things we have up until now been too scared to risk, taking ‘a what have I got to lose?’ attitude.
We all have days when the fear feels too much. On these days, it’s best to have some quiet time. It’s natural to fight negative emotion and put on that brave face, but acceptance is not the same thing as giving in. Although continuing on is the way many of us deal with it, we admit that it is exhausting.
Some of us shared that our anxiety has become anticipatory. We are fearful of fear, of how fearful we are going to be at some point in the future, leading to further worry. We can become stuck, asking what’s the point in doing anything when we might not be around to see it through? Some of us feel we make all our decisions based on this fear, but knowing this helps us decide to go against what fear is telling us and get on with living. Some of us fear living more than we fear dying, and we try to live each day as if it were our last, grasping each precious moment.
When we are going through active cancer treatment, we take a ‘one day at a time’ approach. With a goal to focus on, we only deal with each step ahead and can put aside our fears for the future. We focus on what we need to do to get through and for some this means being positive about the day to day and not looking too far forward or at the bigger picture.
For women with secondary breast cancer, every scan and appointment brings fear of progression. Many of us fear that signs of progression will not be picked up in time. Fear can also be a force for enjoying life, for living in the moment, for not sweating the small stuff. Saying ‘I’m ok, right now’ and being content with that. Fear can drive us to seek out ways of helping ourselves to be well, as we look for different options and information to help us live well.
If we can accept our fear, breathe it out, use it to energise us, then it can be a force for change, for action, for engaging fully with all of our emotions. Information and knowledge can be empowering, and understanding our emotional responses can help us to equip ourselves to cope. Some of us allow a period of fear every now and again, wallowing in it for a limited time before we pick ourselves up and get on with it. Others plough through the fear, knowing that worry won’t help any situation, and let the fear simmer in the background. It won’t go away, but it doesn’t have to hinder living a full life.
Building resilience can help us to stop hiding away from life, giving us the energy and will to face the world despite our fear. Fear is part of us, just as having cancer is part of us.
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 the Facebook page.
Post Traumatic Growth
“We think of resilience as toughness, but it is not. It is sensitivity, it is the ability to shape and grow into a new being.”
This week’s discussion explored post traumatic growth, a concept which refers to the possibility of 'growing' and learning from the trauma that we have endured as a result of (any) cancer diagnosis - we re-evaluate our priorities, our values, and find a deeper gratitude and appreciation for life.
We thought about the way that our experience of primary or secondary breast cancer had changed us. Many of us felt our lives had changed positively, for example, we have a greater appreciation for who we are and ‘our lives' feel 'better', 'richer' and more meaningful. Overall, there was broad agreement that we had discovered a new and deeper appreciation for many of life’s simple pleasures, things we had taken for granted before our diagnosis, maybe being in nature, or, in the company of our families or good friends.
Some of us felt we were kinder, more self-compassionate, wiser and empathetic. We stop “sweating the small stuff.” We become more assertive, more confident and less apologetic. We shared examples of speaking up, setting boundaries in a stressful work environment, changing and leaving toxic jobs, or toxic relationships. Some of us had developed new interests and skills; maybe we had found ourselves wanting to learn and study or we had found ways to express our creativity, perhaps taking up new interests. Friendship and the chance to make new friends was particularly valued as an opportunity for pleasure and growth.
Many of us shared that we had reconnected with our values, perhaps finding a greater appreciation for 'normal life', home and family, whilst others had experienced a shift in values, perhaps becoming more adventurous or willing to take risks. We open ourselves up to new experiences, doing new things, including things we have never before had the courage to do.
Resilience, Naz told us, is a concept that is derived from growth post trauma. We think of resilience as toughness, but it is not. It is sensitivity, it is the ability to shape and grow into a new being. A being that is not like the ‘old’ person we were, but where we find an acceptance of the changes, the losses that we endure as a consequence of our trauma. Naz told us that she finds it helpful to see vulnerability as an opportunity, a platform to fly from and to explore what we can make of the changes, the restrictions and the fears, to find what we can reclaim.
Not surprisingly some of us felt more cautious about attributing gains to our experience of cancer - particularly, but not only if our losses are still raw and painful. We reject the idea that cancer is a gift or a teacher. We all know that there is nothing positive about any cancer diagnosis and its impact on us is profound, and for many of us, long lasting. It takes courage to face out trauma, and we need to do this in our own time. Here at BRiC, we do not turn away from the harsh realities of our experience and our treatment. We know all too well that we are tired, fatigued, and our cognitive functions are running low. We also recognise the ongoing challenges women with secondary breast cancer face. Could we, some of us wondered, be at risk of placing unrealistic expectations on ourselves to 'grow' and learn from trauma in light of these challenges?
As one of us has said before, there is a crucial difference between recognising that we can come through the crisis of cancer, resilient and strong, and, coming to the view that we are resilient and strong because we had cancer. It is what Naz termed, the ‘clever me’ which is inside each of us and can turn the experience around to our advantage. Even though we have less control as a result of our breast cancer, we can use that vulnerability as a stepping stone to take back control where we can. It is even possible that post traumatic growth might help us, it might make our journey through trauma easier.
Our discussion highlighted the importance of avoiding a prescription or a blanket definition that applies to everyone, and we should instead strive towards our own path. Post-traumatic growth does not mean that we will be entirely free from the painful memories of what has happened to us. Our experiences and grief and the challenges we face are part of who we are, not something to be pushed away. But, we can talk to ourselves kindly, and we can learn to accept and understand the significance of our experiences and feelings in ways that validate our responses so that we live our lives more meaningfully. We can learn to see ourselves, and I mean, really see ourselves, in all our flawed and imperfect beauty.
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.
Last week for our discussion we offered a challenge to our members, who are all women who have had a primary or secondary diagnosis of breast cancer: to describe yourself in three words, but when picking your three words try to be kind to yourself. For many of our members this was much more difficult than it sounds. So we suggested trying to think of three words our very best friend would use to describe us, or even actually ask a friend.
Rather than writing the usual summary, the very talented Anita took the words we came up with and produced this beautiful word cloud.
We suggest that when you're being hard on yourself, look at the words your friends used to describe you. Then take them. Embrace them. Accept the truth in them.
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.
“Fatigue, we agreed, is not the same as being tired.”
In this week’s discussion we explored fatigue, a common and debilitating side-effect of treatments for primary and secondary breast cancer.
Fatigue, we agreed, is not the same as being tired. It’s a relentless feeling of living in a barrel of treacle, typified by feelings of exhaustion and burnout - physical and mental. Fatigue tells us we are muddling through on empty, our resources depleted, our energy all used up. Sleep and rest does not replenish us. Fatigue may be sudden, constant, or come in waves.
Coping with fatigue is difficult. Many of us find it hard to acknowledge that we can no longer do as much. For some fatigue is mild, for others it’s severe. Fatigue hits some of us now and again and is a minor irritation. It can stop others from working, socialising and they feel constantly unwell under its weight.
Insomnia seems a common feature of fatigue. As we become overtired, we worry about not sleeping as we lie awake. We worry that we won’t be able to work, we worry that our families will see us as shirkers, we worry that friends will get fed up with us for turning down invitations or leaving the party early.
Many of us are learning to pace ourselves. We plan fewer activities on a daily basis and schedule in times for rest. In a world where being busy is highly prized, it can be hard to slow down to our own pace. Working full time can mean me time, social time and family time is squeezed as it takes every ounce of our energy to hold down our jobs, and there’s nothing left for anything else. We don’t do as much as we used to, as much as we would like, leading to feelings of guilt and a loss of self-esteem.
Many of us noticed that the fatigue caused by surgery, and/or radiotherapy and/or chemotherapy seems to lessen over time. But after active treatment has ended, menopausal symptoms can feed into our exhaustion, either from early or treatment-related menopause, or, from taking hormonal treatment. The effects can be long lasting.
Those of us with secondary breast cancer, whose treatment is ongoing, often have a level of fatigue that is very debilitating and may be an continuous problem requiring specialist support.
Many of us have experienced the ‘boom and bust’ cycle where we feel great and do loads, only to crash afterwards and be forced to take time out. We suddenly feel totally wiped out and there’s nothing we can do except stop and rest.
The spoon theory - there’s plenty of information on this on the internet - is useful, but although it helps us understand and validate our symptoms and gives us some language with which to articulate it for others, we still feel frustrated by the times when we just can’t push through, keep going, have a little nap and then feel fine again.
Many of us described fatigue as a tiredness that is not relieved by a good night’s sleep. It can be a weariness of body but also a heaviness of mind. This, we wondered, may be because our anxiety and fear is using up the brain’s resources and our usual cognitive processes are impaired. This, coupled with the fear and vulnerability that accompanies a cancer diagnosis, decreases our ability to bounce back from low mood. Our brain is preoccupied with the mental trauma and cannot lend as big a hand to our physical recovery as we might like. Keeping our brains active, even when we are forced to rest, may be helpful here.
Activities can help us to manage fatigue, besides adequate rest, include physical exercise and mental relaxation. Some of us can go to the gym or go for a run, others prefer a gentle stroll in nature or a yoga session. We like to find absorbing things to do to settle and calm our minds, such as reading or creative crafts. Eating healthily helps, and avoiding sugar and quick release carbohydrates which can lead to fluctuating blood sugar causing energy highs and lows. There are courses, books and apps to help us understand cycles of fatigue and this understanding can bring an awareness which can be helpful.
Explaining fatigue to others who expect us to be ok now that our cancer is behind us - and for some of us, many years behind us - feels impossible and some of us have given up trying. We just smile, say we’re fine. We decline a night out because we know that if we go, we’ll feel awful, struggle to stay awake and maybe we won’t make it to work the next day because it will just be too much for us.
We find comfort in knowing that fatigue is a common experience and that many women suffer from it. This helps us to feel that we are not “weak” or “feeble” for needing to slow down.
Exercise can help, but it needs to be gradually increased, especially for those with severe symptoms. Many of us who are fit and active still describe experiencing fatigue, and others make the effort to exercise, not to improve fatigue but because we know it is good for our health. Showing self -compassion and not beating ourselves up if we can’t exercise can help us to manage the gap between our expectations and our reality. We do our best. Here is where we share our true resilience. We know we are all different and there is no one right way to improve our wellbeing.
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.
Useful articles:
https://www.psychologytoday.com/gb/blog/turning-straw-gold/201606/pacing-the-chronically-ill-person-s-best-friend
Stress and Breast Cancer Risk
Our discussion this week focused on stress and whether we believe it has had an impact on our breast cancer, both in the original diagnosis and in ongoing incidents of recurrence or metastasis. In line with mixed evidential research, our experiences varied.
For some, a general observation that our current busy stressful lifestyles may contribute to a cancer diagnosis is convincing. Stress may lead to a lowering of the immune system, an eat-on-the-run poor diet, little time to exercise and poor sleep. Severe stress may lead to generalised anxiety or other psychological disorders. We know that not looking after ourselves physically affects our state of mind and our wellbeing suffers when we are overwhelmed and under pressure.
But if stress causes breast cancer then everyone who is stressed would get it wouldn’t they? They don’t.
However, Naz told us that recent research is increasingly convincing in showing that higher levels of stress are predictive of an enhanced risk of getting breast cancer - reminding us that “risk” is not the same thing as “cause.”
We pondered over the specific stressful events that may have contributed to overall poor health - the loss of a loved one, losing a job, financial pressure, not coping at work, problems with children - the list is endless and varied. Some of us were asked about stress by our medical teams, which alerted us to question whether there could be some link. Many of us are convinced that our own personal stress was a contributing factor in their breast cancer diagnosis. A few don't believe there is any link.
A cancer diagnosis in itself is a stressful event, and may lead to prolonged stress during treatment and beyond. Relationship problems are common, as is financial hardship. Many of us reported feeling more stressed in general than before our diagnosis, due to the mental and physical challenges we face. A number of us reported that our diagnosis came after a period of high stress, once the stress was behind us. A diagnosis after retirement or redundancy from a stressful job is not uncommon.
Many of us have looked back on our lifestyles pre-cancer to see what might have ‘caused’ it - this helps us to make sense of what’s happened, and although we know that it’s nonsense to blame ourselves, we do seek the answer to ‘what did I do to deserve this?’ At the end of the day no one cause is proven. It makes common sense to take care of ourselves and looking after our own wellbeing becomes paramount for many of us. Minimising stress may be one of the choices we can make, but for many it may not be possible to keep stress levels low as life throws all sorts of stressful events at us over which we have no control. How we react and deal with these events is within our control to a certain extent, and this is where self-care comes in. One example might be in returning to work following our treatment: it is possible to adopt a new approach, to set boundaries and decide to put ourselves first rather than allowing our work to overwhelm us. The problem is, it’s really difficult to do.
Some of us have attended courses on dealing with stress and these can be very helpful. Exercise, getting enough sleep, eating well, mindfulness, yoga and meditation can all facilitate wellbeing, and it’s when we are very stressed and all our usual self-care routines go out the window that we need these the most. When we are stressed we feel out of control, and sometimes small acts that allow us to feel more in control can really help, perhaps a ten minute walk or three minutes of deep breathing. Finding ways to minimise our stress can help us to feel that we are doing our best to prevent a recurrence or spread of a primary diagnosis, and to stay stable and prevent progression of a secondary 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.
