Managing side effects of Endocrine Therapy: BRiC's Collective Voice

 

Is it too much to ask?

A recent Sunday discussion looked at the side effects of endocrine (hormone) therapy for those of our members with hormone positive breast cancer. Drugs such as tamoxifen, zoladex and aromatise inhibitors (such as anastrazol, exemestane, letrozole) are used to prevent recurrence or spread of cancer after a primary diagnosis or as part of ongoing treatment for those who live with secondary breast cancer.

Naz shared a research article published this month in the scientific journal Lancet Oncology which had reviewed the evidence for approaches to manage side effects. The article pointed out that hormone therapy causes a significant impact on quality of life and to adherence to medication. They feel that there should be an aim for breast cancer patients to be returned to pre-cancer quality of life and emotional/social function. Further, it was felt that this could only be achieved by careful management of side effect of anti cancer treatments. Members do not appear to receive much support to achieve this aim, with many being given a prescription for tablets to take for 5 or 10 years and then sent away with no further follow up.

Side effects can substantially affect our quality of life but stopping the medication could have an adverse impact on cancer survival. One article cited in the article found that 16% of pre-menopausal women stopped taking the medication due to side effects. Some of our members felt that side effects made them miserable with impaired quality of life but felt they had no follow up and that some felt their concerns were not taken seriously by medical teams. There seems to be a feeling that we should be grateful to have had our breast cancer treated and that side effects were just part of keeping the cancer away. Some had very helpful GPs but others felt their family doctor did not have the expertise of the oncology team who made the initial prescription.

Many side effects were reported by our members. Some were commonly recognised in breast cancer leaflets - hot flushes, joint pains, sexual dysfunction and reduced bone density. There were many others: vaginal dryness causing pain during intercourse, low mood, cognitive impairment (this often had a significant impact on work and home life), poor quality sleep and thinning of hair, nails and skin. For some, the joint pains were so severe, they struggled to walk.

As always, our members offered advice on what had helped them the most. Clearly there were some pharmaceutical prescriptions given by a doctor but there were also non-pharmaceutical options too. Many found a more holistic approach helpful using mindfulness techniques. Yoga and Pilates were found to ease stiff and painful joints. Exercise was found very helpful at helping lift mood, help reduce the frequency of hot flushes and improve sleep as well as improving fitness. Some members like to run, others to walk, cycle or garden. Others found the use of dietary supplement helpful, although it is important to check with your doctor, pharmacist or specialist nurse to ensure there are no interactions with prescribed treatments.

Pain control was very important for those with muscle and joint pains. For some, simple pain killers such as paracetamol sufficed, for others pain control was much trickier - some had been referred to a rheumatologist and found this helpful. Acupuncture was also used, albeit with varying success. For many, however, they were left to try to manage pain in the absence of an oncology team. Sometimes a change in medication or a short break can make a lot of difference but these opportunities are not available in the absence of follow up support.

Sexual dysfunction was very common, especially after the rapid menopause brought on by breast cancer treatments. Many members felt it hard to talk to medical teams about such a deeply personal issue. Vaginal dryness symptoms can be addressed with a prescribed but other symptoms such as loss of sex drive were much harder to talk about and even harder to find treatment in the absence of an oncology team with access to a psycho-sexual counselling team.

Almost universal amongst our members was the lack of information about benefits of treatment and harm from side effects. This meant that there was little opportunity to discuss in depth how much the treatment would benefit them and at what cost. Without this, there is no informed consent for drugs to be taken for up to 10 years. More than one member described being sent off with no follow up and a box of pills.For those who still had regular oncology follow up, this was felt to be useful and a good opportunity to get help.

Our members know what they want and need to manage their symptoms:

To be heard and believed when we say our symptoms are a struggle for us

Access to ongoing oncology or breast cancer team support and follow up with a point of contact so we can report significant side effects and access treatment options.

Full information about benefits and risks at time of starting hormone therapy (not merely an information leaflet to take away and read)

Better understanding from our employers at the changes in our physical well-being and cognition.

Given everything we have been through and will continue to go through, surely it is not too much to ask for?

Unraveling the emotions behind grief and why do we grieve the loss of people we've never met: BRiC's Collective Voice

In a recent Sunday discussion we talked about grief, particularly about how we grieve for the loss of people we have never met, celebrities and public figures who we don’t know, but whose deaths cause many of us to feel profound grief.

Grief is a complex emotion and affects us all differently, but it is something which we all experience in some way. People often talk of grieving as a process, but it is not a linear path, there are twists, turns, surprises and bumps in the road. As a group of women who have all had a breast cancer diagnosis, we were aware that deaths caused by cancer often touched us the most, perhaps reminding us of our own mortality or causing us to think “that could be me”. One of our members said that once we have had a cancer diagnosis our ability to live a carefree life has been taken away forever; thoughts of death may become an everyday part of our lives. We all know that none of us will live forever, but cancer steals away our peace of mind and may leave us in a constant state of worry for whatever life we have left.

Some of us have been raised to keep their emotions in check, finding expressions of grief unnatural and making the process of grieving more difficult. Cancer deaths often touch us very personally, even if it is the death of a total stranger, it can be hard to explain to others how the death of someone we don’t know affects us so deeply and stops us in our tracks. There were others who felt unaffected by the death of strangers or celebrities; members talked of needing their energy and focus to be on themselves and their loved ones; having a cancer diagnosis is exhausting and sometimes there is just not enough strength in us to think about people we don’t know.

For some the public outpouring of grief often seen when a celebrity dies, is uncomfortable and sits uneasily with them. Occasionally it is the similarity between the deceased and ourselves which causes grief – “he was the same age as me”, “her children are the same age as mine”, “they were married as long as my mum and dad”, “her diagnosis was the same as mine” – all these things can hit home and remind us of our own tenuous grasp on life.

We questioned whether what we feel when a stranger dies is actually grief, or is it empathy; fear; compassion; sadness; anger? Perhaps all of these emotions are part of grief, but we wondered if it is really the same as losing a loved one. Anger was an emotion many of us shared, particularly when we hear the words “died of cancer”, we are acutely aware that cancer is indiscriminate and such a cruel disease. It was interesting that the age of the deceased was pivotal for some members, feeling less sadness for those dying at an old age, but grieving deeply for those who die young; however this wasn’t the case for everyone, some members felt all deaths were equally distressing no matter the age of the person who dies.

Sadness for those left behind was an overarching theme, we acknowledged that part of grief is facing the future without someone. The sight of someone left alone after a lifetime with a partner can be heart-breaking to see. Sometimes when hearing of a death it reminds us of those we have lost and old memories can resurface, not all of them good. The death of parents was something many of us could relate to, for most bringing mixed emotions, sadness and loss, but happy memories and feelings of warmth; sadly, for others childhood memories were not so good and reminders of deceased parents brought painful memories. One of our members paraphrased Jamie Anderson saying: “Grief is just love with nowhere to go” and we all felt that grief for those we love and care about is usually much more powerful than for the celebrities and public figures. However, there were several mentions of times when the death of a celebrity has affected us deeply, sometimes taking us by surprise, leaving us distraught and feeling completely lost.

Grief is not one emotion, it is not simple and it is not the same for everyone, but one emotion which underlies grief is empathy, empathy for the person who has died, for their loved ones, for others around them. Empathy is a powerful emotion and enables us to make connections, even with people we don’t know personally. Grief and death are frequently taboo subjects but having a cancer diagnosis means we have all had to face the possibility of our own death, even more so for those of us with a secondary diagnosis; knowing we can express our fears in our private group enables us to share that burden. We can say “I’m sad about her dying because it could be me” without fear of being judged. It is important to understand that grief is a natural process, not linear and not time-constrained. People grieve in different ways and for different reasons, but each is valid.

The "Toxic Positivity" Effect

 

‘You’ll beat cancer if you stay positive’. This topic and its impact on our emotional well-being has been one of the most popular with hundreds of comments that hit close to our heart.

Our members have many a time heard the words ‘stay positive’, ‘a positive mindset will breeze you through chemo’, ‘You are so beating cancer’s arse’ ‘If you stay positive, you will get through this’, ‘You caught this early, you’ll be fine’, ‘You’ve SO got this’, ‘If anyone can kick cancer’s arse it is you’, ‘You’ve got the better cancer’. However, the reality of how these words make us feel is very far from positive.

What became quickly clear was a sense of how our feelings of fear and sadness due to cancer are minimised by others. We felt we were not allowed to be anxious, sad or fearful. A member said, ‘it shook me to the core’, and another saying ‘it was deeply painful’, when needing to smile whenever her cancer was mentioned. What we almost all agreed on was that the relentless positivity force hindered our ability to process the trauma that we had endured, minimising our emotions to meet the expectation of others, and this we found utterly exhausting and effortful.

Many of us felt that putting on our positivity cloak was a must for others around us as they would not be able to cope. This extended to immediate family, friends, and colleagues. Sometimes, we’ve had to apologise for not ‘coping’, amid not being allowed to grieve the losses we experience due to cancer.

There was a sense that we felt less positive whenever we tried to enforce this positivity, and so we’ve ended up being selective in our approach, censoring what we say to whom and pretending everything is fine and allowing ourselves the dishonesty to others when our feelings are not validated. This has meant we’ve lost friends and family members along the way.

The truth is that pretending that we are ok when we are not, is not a helpful line to take. We are not doomed and gloomed, we do have ‘positive’ days and we are hopeful and resilient, we want to survive to the best of our ability, and this is a really delicate point when it comes to secondary breast cancer. But the reality is that our fears can be very real to us. The sadness from the loss to our identity, and the side effects of treatment which linger on for years put us in a vulnerable position and can be limiting. In fact, we are not fighting cancer, but we are fighting the side effects of treatment. We acknowledged that embracing our difficult and upsetting feelings can help us experience a multitude of emotions that can only be beneficial longer term. We’ve learned that suppressing our emotions will backfire, validating them, and addressing them with appropriate tools can lessen the need for the ‘toxic positivity’ which we have found unhelpful.

An interesting point that emerged was a delayed experience of Post Traumatic Stress symptoms when we’ve in fact tried to be jolly and ‘positive’ through treatment. The reality of what has hit us has emerged later after a few years. This evidence shows that the inability to process the trauma that we have endured has led to a delayed onset of PTSD symptoms which isn’t the longer term aim of ‘being positive’.

We can refuse to be jolly and sunny when having sad days. We believe that a positive outlook is helpful of course but not the relentless optimism which can be blinding. We have learned that we can accept our vulnerabilities without resigning to them, and by embracing our emotions we are not denying them the attention they deserve.

We agreed that allowing us to ‘feel’ is to ‘empower’. A balanced approach to our emotional experiences will suit us better longer term. In fact, there is good evidence to show that one of the reasons behind depression is the inability to fulfil positive expectations. We do not want to feel depressed, we want to be able to thrive and grow from our trauma, so counter intuitively or not forcing the positivity cloak on can only increase the discrepancy between where we are and where we are expected to be.