Jackie's story

 

Hi – My name is Jackie, and I was diagnosed with stage 3 breast cancer 7 years ago.

    Fear of recurrence is a reoccurring theme. I feel almost justified in my fears as it promotes vigilance and bodily awareness, but in excess, causes me stress and propels me into overthinking.

    My sister died with breast cancer, and this informs and exacerbates my fear. My fear is also grounded in my diagnosis which saw lymph node involvement, aggressive cell type and vascular involvement.

    I am afraid of the pain of recurrence, and how invasive treatments may potentially have adverse effects on the quality of life.

    My partner is my ‘go to’ support and manages to hold my fears, I can openly discuss choices with him, should progression occur, which is a blessing, as I rarely discuss recurrence with others, because I don’t want to alarm or distress friends and family.

    There are moments when I overcome my fear, especially when I feel well or rested and this gives me temporary respite and perspective, but then there may triggers, and I become trapped in anxiety.

    I recently came across a Japanese term called Shinrin – Yoku. Shinrin means forest and Yoku means bath. I love forest bathing – breathing in clean, fragrant air, sensing the stillness and sounds of nature. This sensory experience helps alleviate fear of recurrence and other anxieties too. It is not always available to me; in which case I try to find a moment of peace in my mind – however fleeting. 

    I have adjusted to and accepted fear of recurrence as part of my life now, with all its ups and downs, and enjoy being part of the BRiC community, which is a haven of reassurance and understanding.

Laura's story

 

Loosening Fear's Grip

As she turned around and looked again

What she could see had changed

No longer carefree, instead the big C

Cast its shadow and rearranged

The part of her mind that looks behind

And into the future too

Filled with regret, sadness and loss

Each day she felt fear as it grew

 

A lumpectomy followed, radiation took place

But still that wasn’t sufficient

A new tumour grew within the same breast

It was removed; she felt totally deficient

A new one was made but didn’t look like

The one the knife took away

The nipple and skin she’d had since birth

It wasn’t possible for them to stay

 

Three more years passed until the day

Her internal dread became real

Breathlessness, weight loss, silent fatigue

Fear became what she could feel

Horribly quiet and yet very loud

Signaling the spread of disease

Breast cancer cells had seeded themselves

She was never again to know ease

 

Unable to cope and a mental decline

Fear’s intensity broke her heart

Every day became an enormous challenge

She watched as her world fell apart

But here she still is, she eventually found

A new way to turn to the light

This is not a battle to be won or lost

Nor is it some kind of fight

 

Dignity, grace, courage and grit

They are present, breathing all of her soul

Her world is now seen through different eyes

She works hard to make herself whole

And although her time here will definitely be shorter

Nothing takes away her resolve

She chooses not to let fear hold her breath

Holding hands with others, she emerges and evolves.

Lucy's story

 

I think, this sums me up, in the fact that it is late at night and I am doing this in bed, because if I stop and sit, I start to think and the box that I don't want to open starts rattling. 

To be honest its the last thing I think about before sleep and the first thing I think about  when I wake up. 

Today has made this more real, sitting with a special lady in the final stages of secondary breast cancer, the fear that it could be me one day. 

How to sit with these feelings and live, can be extremely tiring, maybe that's why I try and pack in as much as I can? 

Sometimes the fear can linger, I long to be able to see my children, find partners, marry and be happy, that is my hope and so I live in the moment, well try to.

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?