Claire's story

 

So, I’m not really sure how this is going to go.  FEAR is a big word, and there are so many fears – writing this could go well or could cause lots of tears.  Let’s try …

    My name’s Claire and I am now 61.   My journey with Breast Cancer began in 2010 when I was 47 and I found a lump.  Mum had been diagnosed the year before, so I sort of knew what to expect, but that didn’t stop the fear.  Once we knew for sure, the next fearful moment was telling my children and also my parents who had already been on this journey only recently.  Mum was really pragmatic, “you’ll be fine” she said.  Fast forward through the fear of surgery, then the terrifying fear of that first chemo session and onwards through the unknown radiotherapy.  A year later, I’m done, or so I thought.  Little did I know how my life would be changed.  There followed 9 years of Tamoxifen and the yearly worry of mammogram results.

    

    In 2019 I had a cold and lost my voice. This didn’t resolve and led to several GP visits, different medications, an x-ray and finally a trip to see an ENT specialist.  All through this, I don’t think I really considered it could be the return of Breast Cancer.  No-one had mentioned symptoms like this – I had thought it would come back in my boobs, or show as pain in my hips or back – that was all that had been suggested as a cause for concern.  Anyway, the specialist discovered my vocal chord wasn’t working properly.   “We need to do a CT scan in case” she said. “In case what?” said I.  It was then that I started to think Cancer and the fear was real.

    I certainly wasn’t prepared for it.  Thankfully my husband came with me when we were told.  This is it, never known fear like it.  Fear of death was REAL.   Fear of treatment, fear of telling family IT was back.

    I’m 5 years on and doing well, living with cancer.  However, the fear is real and is always there.  Sometimes I can push through, sometimes I get very teary, sometimes grumpy.  The scans every 4 months make me feel sick.  A real physical, gut wrenching sick.  As time moves on, I guess I should feel more secure, and at times I do, but waiting for the scan results brings such a mix of emotions and fear is a huge one. “What if” is probably the biggest. Everything seems to revolve around the results of that one scan. The fear is real.

Ruth's story

 

Ten years ago, Ruth was diagnosed with Stage 1, Grade 2 Invasive Breast Cancer following a mastectomy for extensive DCIS (Ductal Cancer in Situ). During those 10 years the physical (medical and surgical), mental and emotional consequences of diagnosis and treatment have been significant. Despite 10 year of NED (no evidence of disease), the realisation that no one can ever tell you that you are cancer free and that the cancer will never come back has hit hard. It’s always there …

Always there

 Your are always there with me

Through the good times and the hard

We have been through so much together

I lie in bed at night and you speak to me

I’m at work and you pop into my head

I’m with friends and you are sitting on my shoulder

Some days you feel further away

But others you surround me, fill me … and scare me

 Fear of cancer recurrence, you will be with me forever but I will not let you overwhelm.

Coping with Endocrine Therapy Effects

 

We looked at how our ladies cope with endocrine (hormone) therapy, which is used as an adjuvant treatment for those with hormone positive breast cancer. Drugs such as Tamoxifen and Zoladex along with aromatase inhibitors, such as Anastrazol, Exemestane and Letrozole, are used to prevent local recurrence or further 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 in the scientific journal Lancet Oncology which had reviewed the evidence for approaches to managing side effects. The article pointed out that hormone therapy causes a significant impact on quality of life which then affects adherence to medication. It also said 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. Our 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.

 

    Outcomes cited in the article found that 16% of pre-menopausal women stopped taking the medication due to side effects. Sadly, some of our members experienced side effects that 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 our breast cancer treated and that side effects are just part of keeping the cancer away. Encouragingly, some had very helpful GPs, however, others felt their family doctor did not have the expertise of the oncology team who made the initial prescription.

 

    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 is not 100% effective and they can also act as a daily reminder of our breast cancer diagnosis, which can be psychologically challenging.

 

    Of the many side effects that were reported by our members, some were commonly recognised in breast cancer leaflets - hot flushes, joint pains (for some, the pain was so severe, they struggled to walk), sexual dysfunction and reduced bone density. But there are also lots more - 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.

 

    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, for example, 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 spend time gardening. 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 moisturiser 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.

 

 So, to round up and conclude; what action can we take to help ourselves whilst on Tamoxifen or AIs? 

 

·       Trying a different brand can often 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. 

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• ·       Side effects may be more severe at first, so it’s worth persevering to see if they settle, however, we also think that side effects may be cumulative with aromatase inhibitors as our body’s oestrogen becomes more and more depleted. 

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• ·       Hot flushes may be helped by a mild dose of an antidepressant, and some women have found acupuncture helpful.  

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• ·       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. 

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• ·       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.

Lymphedema

 

“Compression sleeves are an essential part of management to avoid it moving up the stages”

 

Lymphoedema is a side effect of breast cancer treatment. It is the build-up of lymphatic fluid which is no longer able to drain properly due to the lymphatic system being damaged during surgery or radiotherapy. Once it has developed it is a life-long condition but the earlier it is identified, the better it can be managed. Sadly, awareness and treatment appear to be a bit of a postcode lottery.

 

    Many of our ladies suffer with this in varying stages, with some developing it straight after surgery and others have seen it occur years after active treatment has finished. Although it is most commonly seen as swelling in our arms, it can also affect our breast and trunk area. The fluid is best dispersed by wearing compression garments and specialist massage. Swimming is also a great exercise to keep the swelling under control.

 

    Some told of experiencing cellulitis, which is particularly dangerous if not treated effectively as it can easily lead to sepsis. NHS-issue compression garments are quite unsightly, especially if you have to wear the sleeves during the daytime, although it was mentioned they are now produced in different colours and patterns, which is an improvement!

 

    The general view of our discussion participants was that there is not enough awareness or emphasis on lymphoedema before surgery and not enough support once diagnosed. Treatment of the cancer takes priority over any meaningful thought of our future lives. Although we are grateful for receiving cancer treatment, it can damage our bodies permanently in so many ways, and we should be made completely aware of those issues right from the start. More research is needed to understand the exact triggers that lead to lymphoedema as, at the moment, we are all given the same basic advice, yet only some of us go on to develop the condition.

 

    Many breast cancer survivors don’t get to sail off into the sunset, happy and cured. There is an extensive list of side effects and things that can go wrong once active treatment has finished. Serious issues that we need ongoing support with, in order to live a full and active life, on top dealing with possible recurrence or a secondary diagnosis. How can we become resilient and self-reliant if we aren’t given crucial information about our own bodies?

Anita's story; BRiC's BCAM 24 Project

 

Ten out of Ten

This year’s breast cancer awareness month will be particularly…what? Special? Important? Poignant?  I’m not sure of the words to use to describe reaching my ten year milestone.  All those dates etched forever in my head:  recall letter on bonfire night, diagnosis on remembrance day, surgery on the first day of December.  With numerous scans, biopsies and changes of plan as I got on the roller coaster that no-one wants to ride.  Just as my life plan was falling into place: early retirement, voluntary work I loved, my children doing well. By Christmas I was recovering, awaiting radiotherapy which was delayed by 7 weeks due to a wound that would not heal. My birthday in February, my first radiotherapy appointment.

 

    It was done, they said.  Go off and live, they said.  Well I tried and life continued full force as my youngest son left home on his travels and then my mother died, she who had held my hand every step of the way through treatment. To say I was lost was an understatement. I had no job to provide structure to my day, no children at home to care for. I had my disabled difficult grieving father to look after, I had letrozole which turned me into an old woman overnight, and I mourned not only my mother but also my pre-cancer self.  The me who had energy and enthusiasm, the me who knew how to have fun. I couldn’t keep up with my friends anymore, I was always tired, I didn’t know how to move on. 

    

    It seemed I was expected to pull together an ambitious bucket list and to throw myself into life with renewed vigour and appreciation. I practiced gratitude, I knew I was lucky, but I didn’t feel it. I just felt listless and overwhelmingly sad. And afraid.

 

    Afraid at four in the morning when I can’t sleep and the silence deafens me with its taunts, this can’t go on, it will come back and get you, you’re not worthy of a long life, you don’t deserve good things, it will come back, it’s only a matter of time.  Afraid at every lingering ache and pain, the natural progression of growing older, each check up and doctor visit, surely they’ll find it this time? That little mutant cell that one day will divide and conquer.  Afraid that my body will let me down as it let me down before and so it repeatedly lets me down as my fear triggers the freeze response. My anxiety, crippling me with terror and self-loathing, leading to a craving for safety that glues me to my cosy arm-chair. Sometimes I am unable to leave my home as the world out there is just too scary and I am overwhelmed by even the simplest tasks and decisions.

 

    I have lived like this for ten years. Has it got easier? Yes and no. I have found new things to do that bring me joy, I am busy and yes, I am thriving. I made many new friends through having breast cancer, but there is also the sadness, so many BRiC ladies no longer with us, only four out of six on my HOPE course still here. I often ask Why not me?  What did I do that has allowed me to go on with my life while others have had theirs cut short. I feel undeserving of such good fortune.  I feel it will be my turn next, and soon.

 

    I’ve achieved that ten out of ten as I’m still here. But in terms of zest for life, I’m only at around 7 at best. I may have more good days than bad, but the bad days attract a minus score. Mostly I smile and fake it til I make it. When you and I meet -  if you and I meet as I may not make it to your event - you won’t guess, and I won’t tell. Cancer has a lot to answer for.

Miranda's story (BRiC BCAM 2024)

 

DX primary 2012 secondary 2019.

A letter to my 2014 self. 

Dear Miranda 

I'm so proud of the way you have navigated your treatment last year. Look at you now! Looking fabulous, back running, back at work! I see that you are really scared of the future; fearful to lift your head above the parapet, cautious of planning anything more than a few months ahead. That's ok you know. 

    You have had a horrible shocking diagnosis, debilitating invasive treatment and now all the appointments have stopped! It's scary and lonely. You don't understand why you're just having an annual mammogram and not being scanned to check for spread. What if it comes back? 

    Right now you have the chance to comfort yourself with statistics. 7/10 people don't get secondaries. I promise you that whilst fear will sit with you and shout loudly at times, the next ten years will hold joys you can't imagine; weddings, travel, grandchildren, friendships. Refuse to let fear steal those things. Fear doesn't change anything. 

    

    I'm sorry to say that whether you are full of fear or not, you will have a secondary diagnosis in 5 years time. The statistics will no longer be in your favour and the fear will darken and sometimes morph into terror. 

    I can also tell you that those sweet joys will still be there. Aren't humans incredible that we can be scared and joyful at the same time? Come on then, face your fears, name them, claim them as yours and go and live your one beautiful life with love and hope in your heart. 

Love from your older self xxx

 

Vickie's story (BRiC BCAM 2024)

 

Name: Vickie Age: 45

What’s happened so far: Primary diagnosis in May 2020, treated with lumpectomy, sentinel lymph node biopsy and radiotherapy.

    Followed by a local recurrence in November 2023, treated with single mastectomy, more lymph nodes taken, Zoladex and Exemestane.

    Since my initial diagnosis, 4 years ago, fear has been an unwelcome but almost constant companion. Much like tuning in a radio, sometimes it crackles away in the background as white noise, but other times it is sharp and dialled up. It is distressing and impossible to ignore.

    When I was first diagnosed, I felt comforted by statistics. My cancer was low grade, had not reached my lymph nodes and when I couldn’t tolerate the side effects of Tamoxifen, it was considered “safe” for me to go without. Being pre-menopausal there weren’t any alternatives that didn’t throw me into immediate menopause and I was told that would be a drastic move for my grade and stage of cancer. All of it was a traumatic shock, and, as I clung on to my lifestyle and commitments, my fear was based on “what if it comes back”. In retrospect I think that fear was masked by hope - from the statistics and reassurance I had received.

    Having then been given my diagnosis of a local recurrence, the percentages that had provided hope no longer held me in a safety net. This has made me realise that even a small chance is still a chance and I have just become part of the statistic that everyone dreads. Again, I’m considered “lucky”. Still no sign of metastatic progression - my lymph nodes are even clear. Only this time my life has been truly derailed.

    Of course I am terrified of progression and dying, I mean, who isn’t? However, I’m also stuck in a surreal limbo, which makes me afraid that, although I may ultimately survive (for which there should be gratitude), I could be left failing miserably at every turn. Alongside a realisation and acceptance that I’m not trying to return to normal, as normal doesn’t exist any more. Will I lose my job? How will I pay the bills? Will I ever feel any better? I am not the same person I was before this nightmare started, so how do I rebuild myself when nothing makes sense anymore? 

    I don’t know who I am, or what I’m aiming for. My cognition and physical abilities are limited. Fatigue rules. I am no longer capable of providing for and protecting my family. This is the exact situation I feared in my imagination 4 years ago, and now it is a reality. The thing that makes me sad is that I am putting in more effort than ever, at work, at home, in my relationships, but achieving far, far less and I don’t know how long I can keep that up before I completely burn out.