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?

Weekly Discussion Summary ~ Coping with Tamoxifen and other Hormonal Treatments

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.

Weekly Discussion Summary ~ Hormone treatment brands

“I was shocked at the difference a brand could make.”

In our discussion this week we explored the apparently wide-spread but largely unreported experience of some women in relation to the way that differing brands of hormonal treatments can lead to a significant increase or decrease in particular side-effects. 

While Tamoxifen is often described as a ‘well tolerated’ treatment, particularly in comparison with harsher treatments like chemotherapy and radiotherapy, it is not helpful to view hormonal treatments as the ‘soft option.’ Our members – women with primary or secondary breast cancer – regularly report a wide range of debilitating side effects including joint and muscle pain, hot flushes, disturbed sleep, impaired sexual health and, as we know from a previous discussion, impaired cognitive functioning. What is less recognised is that very many of us find that these side-effects increase, or decrease, depending on the brand.

Our experiences as a group were wide ranging and varied, both in terms of the named generics we had been offered, and the way we responded to them. Generally speaking, the main brands of Tamoxifen used by us were manufactured by RelonChem, Wockhardt, Genesis and Teva. 

As we shared our differing experiences, a picture emerged where many of us had noticed specific and unpleasant side effects due to changes in our brand, but also that these effects varied considerably between us. For instance, some of us might find one brand made us feel so sick that we could not take it, another really caused us to experience vaginal soreness, or yet another caused an unbearable increase in our hot flushes. Although no one brand stood out as being preferred by the majority of us, what was clear was the significant impact on us of changing our brand of medication. Whether this is because we become tolerant to certain brands after a time, so it's the chopping and changing that affects us, or whether it's the make-up of the brands themselves that affects us, is unclear. 

Those of us taking Aromatose Inhibitors like Letrozole, shared similar effects, although here a huge variation in cost also plays a part in availability and willingness to prescribe. A few of us shared that we experienced no discernible changes between brands, but for the vast majority of us, these variations had a negative impact on our health and wellbeing and in a few instances, these side-effects could make the difference between continuing with our hormonal treatment and stopping it. It was also clear that anyone struggling to manage side-effects should consider changing their brand to see if it is easier to tolerate.

Given the effectiveness of hormonal treatments, and the increasing longevity of prescribing regimens, we felt that our experiences needed to be taken more seriously by medical professionals.    

A few of us found our pharmacists and GPs sympathetic to the variations in our response and that they were willing to try to help us to source our preferred brand. Others reported finding that our experiences were completely dismissed, or, that we were told that it was simply not possible to source one brand on a regular basis. Sometimes despite the support of both GP and pharmacy, particular brands become unobtainable for no apparent reason. 

In the absence of research, some of us had developed our own theory for the wide variations in side effects, even going as far as listing brand ingredients to use as a basis for comparison. The most common hypothesis among us was that different manufacturers use different fillers, for coatings for instance and it might be possible that that these different ingredients subtly affect the way that the medication is being absorbed by our bodies, leading to significant changes in our tolerance to side-effects.

Interestingly, this phenomenon - whereby patients experience a tolerance to one brand of medication - seems to be more widely accepted in relation to other conditions, for example treatments for epilepsy and even HRT, where members reported having more success in obtaining continuity of brand.

As far as we were aware, there is no standard protocol in place in relation to the brand of medication we are prescribed. Indeed, several of our pharmacist members very helpfully explained that GP’s are trained not to specify a generics manufacturer (although some do) due to the expectation that there is no difference between generics brands, and that most of us won’t be aware when an off patent drug is prescribed. Quite reasonably – on the face of it at least – the expectation from the NHS is that pharmacies should be using the cheapest brand at any given time to protect our cash-strapped health service, which then also makes it difficult for pharmacies to offer their patients any continuity of a particular brand. 

Many of us did not know that even if our Oncologist specifies a particular brand – for instance if we request it due to intolerable side-effects – that it is actually our GP, as the person in primary care, who is responsible for our prescribing. Finally, some of us (hesitantly, because the focus of our group is the psychological impact of breast cancer, not politics) expressed concern about the possibility that Brexit may cause supply difficulties which in turn may mean that we may increasingly face being given different brands of generic than we are used to.

We would like to know why it is that different brands have different effects across individuals? Why it is that ingredients are different across brands? Our resounding conclusion was that this is an area where more research and information is needed.

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.

Silent Tears, Hidden Pain ~ Nell

It came to my attention today while scrolling through Facebook that a wonderful and brave lady called Holley Kitchen had lost her battle with breast cancer. I watched the video she made at age 39 years when she was diagnosed with metastatic breast cancer. This had a profound effect on me and I felt that I wanted to share my own story.

In March 1989, I was working as a nurse in the hospital in my home town. I was 39 years old, married with two children. I had been a nurse since I had been eighteen and I really loved and enjoyed my work.

On the 28^th February 1989, while I was getting ready to go on night duty, I felt the lump in my left breast. It was central, right on the nipple. I didn’t panic, or scream, or shout. I called my husband upstairs as I needed to give his opinion - was there a lump or not? It felt hard and fixed and was the size of a 10 pence piece. My husband didn’t say a word. He just nodded and went back downstairs while I sat on our bed with my mind in a daze.

When I presented myself to the GP the following morning, he examined me. He didn’t think that there was anything to worry about but said he would refer me anyway, there was a breast cancer clinic taking place at our local hospital that afternoon. He telephoned and got me in as an emergency. By now, panic had set in and I kept feeling the lump every five minutes or so, willing it to disappear. Obviously it didn’t.

Sitting in the clinic, I began looking around at the other women and realised I was the youngest there. I had nursed many women with breast cancer but never one as young as me. I decided that I didn’t have cancer. I was far too young. This was going to turn out to be a cyst or something. I was going to be fine.

After being examined by the consultant, he decided to take some fluid from the breast and send it to the lab. This was on a Wednesday. I wouldn’t get the results until the following Monday. All of a sudden I was filled with such fear that I could hardly breathe. After a chat with the specialist nurse, I went home.

The days passed slowly. By Friday I was desperate to know one way or another. During Friday evening, the door bell rang. When I answered it, there was the breast cancer specialist nurse and my ward sister. And then I knew. I looked at their faces and I knew I had breast cancer. They were so kind they had come to tell me in the privacy of my own home. Whatever my reaction, it wouldn’t be seen by a clinic full of patients. I just asked what would come next. I was told to come into the ward for admission on the Monday morning. My surgery would take place the following day - March 6^th 1989. I didn’t ask what my surgeon would do and he didn’t tell me. After they left, I completely lost all self-control. My husband changed colour and seemed to age in the two hours it took me to calm down. Both my children were out with friends for the evening. My eldest was 18 years old at the time. My youngest was 15 years old and still clingy. I couldn’t turn around without her being there.

Lying awake in bed in the early hours of the morning, I knew I would have to tell them that day. It was then that the guilt hit me. What was I doing to my family? I was about to blow their happy world to bits. I was going to hurt them, to frighten them and worry them. How could I do this to them? I can tell you now, truthfully and honestly, that was the worst part of it all, watching the fear on their faces. Not being able to give them the reassurance that they needed. They were so upset, so frightened and I as their mother had caused it. My husband tried so hard to be strong for me but I could see the fear in his eyes.

When I was admitted to the ward, the Surgeon explained that as the tumour was in the nipple area of the breast, he wanted to perform a total mastectomy, with clearance of the axillary lymph nodes. These nodes would then be sent away for testing to see if the cancer had spread to my axilla (the lymph nodes under my arm). He wanted to take the whole breast as he was worried that the cancer would infiltrate my chest wall.

I was numb. I thought, this is real, this is happening. I tell you honestly, I was terrified. I didn’t ask any questions, in my mind it was over. I might die, sooner rather than later. And in the time I had left, I would rather live my life with one breast. To me my life would never be the same again.

They gave me a sleeping tablet that night. It didn’t work. The fear and blind terror kept me awake. How would my husband react when he saw my body for the first time? Would he still find me attractive? I didn’t think so. How could he? Mutilation was the word I was thinking of. I would be mutilated. I would never wear a swimsuit again. I would have to wear special bras. I cried and cried. I felt so sorry for myself. I didn’t have a positive bone in my body.

Morning came and I was prepped for theatre. Off I went, putting on a brave face for everyone.

You must remember this was 1989. Things were so different then. Today there is a fantastic breast care specialist unit in our hospital, reputed to be the best in Wales. Back then they did not have the facilities they have today.

Two days after my operation, the day came to change my dressings and for me to see the wound on my chest for the first time. When the bandages and packing was taken away, I looked down to see the left side of my chest was flat, with a wound running from my central chest to my axilla. It was held together by black cat-gut stitches and looked very red and angry. And I just looked down and felt nothing. This was the beginning of my trouble. I didn’t feel or show any emotion at all. I just blocked the whole thing out. Big mistake.

A nurse came to the house to change the dressings for a few days after my discharge from hospital. Three days later, when I was in the bath, I asked my husband to come in. When he saw my scar, he said “Was that what all the fuss is over, that doesn’t look too bad.” I went into meltdown, I screamed, I shouted, I cried. All the time stomping around the bedroom, shouting “I have been mutilated.” I collapsed on my bed and cried so much that I didn’t think I had any tears left.

The following day I was back in my shell. I was always smiling, laughing and being brave Mrs Wonderful. Oh yes, everyone thought I was great to come out of my operation full of the joys of spring. Eight weeks later I was back at work. I had the results of my lymph nodes biopsy and the cancer had not spread so I didn’t need any more treatment, just 3-monthly check-ups. When these were due, I would get my hair done and dress up like a model, full make-up on and nothing out of place. I would walk in with a big smile on my face. To them I looked the picture of health, brimming with confidence. Inside I was falling apart. This went on for years.

After surgery, I was given the drug Tamoxifen which I had to take every day and can bring on an early change of life. One of the side-effects is weight gain. In three years, my body image had changed dramatically. I had gained a lot of weight. I looked bloated. My remaining breast grew at an alarming rate, so undressed, I looked hideous. But still, the outside world saw only a happy, smiling, confident person.

Two years later, I had an implant fitted. The pain of the operation was pretty bad but I didn’t show anyone. Now instead of an empty space on the left side of my chest wall, I had a large, round, hard lump under my skin. It did nothing for confidence. I looked dreadful - with one sagging breast and one immovable, hard lump minus a nipple. Still, I pretended I was thrilled with the result and got on with things.

One night, during a night shift, I lifted a patient off the emergency trolley onto the bed and slipped two discs in my lumbar spine which I had to have removed. I was left with nerve damage. I was 49 years old. I never worked again. A couple of months later, I had to have my breast implant removed as it was working its way up my chest wall and was far too high. The second implant was not much better, I was still left lop-sided. Under my clothes I was a mess but I put on my happy face so no-one knew.

It was about this time that I began drinking heavily. I had reached rock bottom. I could not have gone any lower. But I was still dragging myself out of bed every morning and going through my routine. I had a check-list in my head: clothes - immaculate, hair - the same, house - immaculate. I was good, very good. No-one noticed. Not for years. My drinking continued and my health began to deteriorate. I was admitted to hospital to have yet another implant. I even had a few drinks before admission. At least this implant was a success.

By this time I was refusing to leave the house, only going if I really had to. My husband was as loving and supportive as ever. He did all our shopping after work and he didn’t even comment on my excessive drinking. He thought I had bad nerves. In fact I was drinking myself to death. I hated myself, my body was a mess. I put on a huge amount of weight so now my implant did not match my other breast which had grown.

Eventually, it all came to a head. My friend, a nurse, who was visiting noticed how breathless I was. She also noticed my swollen ankles and the next thing, she asked to see my stomach which was hard and swollen with ascites. She rang my GP who came out and the next thing was that I went into hospital as an emergency. The Consultant was amazing. They had caught me in time and as long as I never had a drink again, my liver would survive. It was by talking to my doctor that the true way I felt came out. I had been living a pretend life, and he said it had all started with my mastectomy. Pretending I was okay so my family and friends would not worry. He told me I had never come to terms with it. I hid it away as if it had never happened. 

Looking back, I realised he was right. Not once did I cry or talk to anyone about it. If people offered me sympathy and empathy, I would push them away. Getting out of the shower, it was easy to avert my eyes. When I cried, I did it alone, when the house was empty. Towards the end, I spent a great deal of time alone. Most of my friends stopped calling, my husband was at work all day. By now, my children had their own lives. And it suited me to be alone, I didn’t have to pretend.

I spent three weeks in the hospital, with plenty of time to talk to various health professionals and plenty of time to think. This was 6 years ago and I haven’t had a drink since. I am well and feeling great. I have learned to love myself and my body. I look at my mastectomy scar and think of it as a battle I won. I didn’t deal with my breast cancer at all, I shut it out. It was the worst thing I could have done.

I am 27 years post-op this month. I have come a long way. I am disabled now due to the nerve damage in my spine but I am happy and at peace with myself and my body image. I have got my self-respect back. But most importantly I don’t keep things to myself anymore. No man or woman is an island we all need someone at sometime.

  

A - Z of my year with breast cancer – just for fun…… ~ Tracey

A – is for Apple everything – iPad, iPhone, iMac! Don’t know what I would have done without them all. Also for crazy curly Afro hair – seriously it’s just growing out and I’m going to look like a member of the Jackson Five if it doesn’t calm down soon! And Adventures yet to happen!

B – is for Boob – just hope to have a matching pair at some point! Blue Butterflies, Blankets, Bed and Beach! love the beach – I need to get there soon! Blogging and Blogs! Both writing mine and reading a lot of other amazing people’s blogs really help.

C – is for Cuddles with Clover, Coconut, Chocolate, Candles, Cake, Cinderella (my favourite fairytale) and Courage – you need a lot of this with cancer!

D – is for Doggies and Daffodils – both make me so happy!

E – is for Eating, Exercise and E-bay – all of these make me feel good!

F– is for Friends and Family as I couldn’t be doing this without all of your support and help. Also cosy Fires, Fairytales – love a happy ending, Facebook, Flowers, Florida (as you know we hope to get back there – always good to have a dream!), Faith that I’ll get better, but also Fear of the unknown.

G – is for God (I really hope there is one and he can get me through this) and Garden because it makes me happy!

H – is for HER2+ and Herceptin – bad as it is, I’m also lucky I can have this treatment. Crazy Hormones too! But best of all Happiness and Holidays!

I – is for injections – lots – I am like a human pin cushion and my veins ache! Also for Implant of new boob, and Italy as we hope to visit!

J – is for Juicing! Beetroot and spinach literally saved my bloods last year!

K – is for Keep smiling even when it’s really bad and Keep going. Kindness that has been shown to me and my family, and for Kale – which is helping to keep my bloods good – it’s amazing!!

L – is for my Love of Life – cancer does that to you! and of course Lemons! I am totally addicted to lemons – and they’re meant to be good for you too!

M – is for Mermaids, Miracles, Music, Massage, Muga Scans, Making Memories and of course my lovely March Marvel 2015 gang! love you girls!

N – is for NutriBullet and New – as in new me, new boob, new way of thinking, just new!

O – is for One step and day at a time! It’s the only way to do it now! Also for Odd – I feel and look odd – I’m an ‘even’ person so this is difficult for me!

P – is for Phil (my hubby – he’s been amazing), Positive thinking, Pizza and of course Photos and Pictures!

Q – is for Quilts – to keep me busy! always good to have a hobby and to give the children a keepsake.

R – is for Reading, Relaxing and Resting.

S – is for Swimming which helps me to cope with the pain, Sunshine which never fails to cheer me up and warm my bones and Strength to deal with this.  Also Sewing, Socks to keep my feet warm, and Spinach which I eat every day like Popeye!

T – is for Tattoo – which I hope to get to decorate my new boob, and for Turkey – what an amazing family holiday we had there!

U – is for Universe and the Unknown – cancer makes you think a lot!

V – is for Vows, which we hope to renew on a nice beach – not sure when or where yet though!

W – is for Warm (it helps with the pain), Work which I love and gives me a bit of normality and routine and of course Weddings! I love a wedding!

X – is for X-rays and scans – all sorts – have to have lots of these!

Y – is for Yoga which helps the mind, body and spirit – everyone should try!

Z – is for Zoladex – bit of love and hate here but it has allowed me the option of having other medication to keep the cancer away so it has to be on the list.

Z is also for Zombies! ha ha.  May sound crazy but we’ve just started watching the Walking Dead.  I hate horror movies but this is absolutely brilliant! It reminds me that things could always be worse (bit like watching Sky news too!) – you see the world could be over run with Zombies chasing us which is much worse than cancer!! I also love the special effects – really should have worked in the movies!

You can read more about Tracey's experiences at her blog:

https://battleofbritten.wordpress.com/