This weekend, I’ve just spent a really helpful, encouraging and uplifting weekend with 43 other women, all under 45, all undergoing treatment (or maximum 3 years on from treatment) for breast cancer. The weekend was provided by Breast Cancer Care “the only UK wide charity providing care, information and support to people affected by breast cancer”. When first diagnosed, the resource pack provided by the charity was really helpful in helping me (kind of) get my head around what was going on – and they deal only with evidence-based research.
They deal with all age groups, but know that for younger women, you’re often 20 years younger than anyone else in your treatment centre, and have very different issues such as work, fertility, etc. to deal with – so they bring ‘Younger Women Together‘ – and seeing others who have been through, are going through, or are about to go through the same as you really helps … so many tips on how to deal with e.g. my upcoming chemo. If you’re under 45, undergoing treatment, I highly recommend it!
- 1 Friday, 24th November
- 2 Saturday, 25th November
Friday, 24th November
We arrived at Holiday Inn, Manchester on a chilly morning. After registration, welcome, ice-breakers and an early coffee-break it was the time of the first of three sessions (I really liked the fact that there was lots of space for socialising – or a rest if you need it – fatigue being a known side-effect of cancer treatment!).
One of the other guests had a wig (and scarves) to pass on, see that to the right … actually looks quite like my hair beforehand! To give a sense of the content, I’m sharing some of my notes…
Medical Update – Management of Breast Cancer in Younger Women
- Around 60,000 women are diagnosed with breast cancer every year in the UK.
- 20% of those are under 50. 4,928 cases were under 45 last year (nearly 3,000 in the 39+ age group).
- There are over 200 different types of breast cancer, but most are invasive.
- Treatment plans are very different depending upon a range of factors – a lot of current trials are investigating if patients are over-treated (with e.g. chemotherapy).
- It seems that younger women are more likely to have Grade 3 cancer.
- NICE guidelines were last updated in 2009, and are due to be updated next year.
- Chemo brain does affect a number of people, have to learn to make adjustments: make lists, de-stress, ask people to email requests as won’t necessarily remember.
- Bones may be affected – may need to consider calcium and Vit D (Oct-Mar) supplements + weight-bearing exercise. DEXA scan = not common unless a family history of osteoporosis.
- Some advice on living with the fear ‘of it coming back’: keep note of ‘anything new + persistent’, 1 year post-radiotherapy will be ‘new normal’
- 2/3 of breast cancer is self-detected, though will be yearly mammograms with scans used for symptoms.
- Most breast cancer is ‘bad luck’ rather than explicit factors.
Break Out Groups: Menopausal Symptoms (rather than breast surgery/reconstruction, or relationships and communication)
- There’s not enough research on the menopause and it’s impact on life/work in general, and even more so for chemically induced menopause (though my colleague Prof Carol Atkinson is working on this within a business context).
- As menopause is chemically induced, will come with sudden, severe symptoms (tied to the medication).
- Oestrogen positive cancers = doesn’t mean an abnormal amount of oestrogen, but the cells like feeding on it – need to limit this.
- People typically feel vulnerable as adapting to a new sense of self, see The Daisy Network.
- Will be 2 years post-chemo before likely to be considered post-menopausal.
- Herbal remedies are suggested in the first place, though not anything with phyto-oestrogen in it (red clover, black cohash, soya supplements *in food it’s OK), and obviously no HRT.
- Glucosamine, rosehip, fish oils are good for joint pain; Sage in high doses is good for hot flushes, and Evening Primrose Oil for mood swings. Taking supplements is cumulative, so try one at a time, allow 6-8 weeks to see if improvement in symptoms.
- Complimentary practices: acupuncture (hot sweats), aromatherapy (wellbeing), hypnotherapy, massage (relaxation) and reflexology (stimulate energy)
- All drug options have side effects, but if menopause symptoms are bad, then ask for them.
- Drink a lot of water, consider Chillow and Knicker Magnets.
- Relax, distract yourself, yoga, counselling, CBT, exercise, and make yourself a priority.
Wellbeing Session: Mindfulness (rather than laughter therapy)
- This was a very practical session in which we undertook mindfulness exercises, including breathing, body scans. If I could remember the names of them, I’d look on YouTube, but included mention of the Headspace App that I’ve been using for last couple of months.
- We also undertook mindful eating with a chocolate button or Minstrel, as I’ve done in the past with Beyond Chocolate, and a reminder that it’s useful to seek to undertake a couple of mouthfuls of mindful eating to consider if what you’re eating is really ‘hitting the spot’, before you go off seeking something else.
- There was a recommendation when concentrating on the body to ‘feel it’ rather than just ‘thinking about’ different parts of the body.
Lovely meals were provided throughout, and we met in the bar before the evening meal in time to take advantage of 2-for-1 cocktails if we wanted to. Lots of conversation, some of it about cancer, treatment options, life decisions since, some of it more general random conversations that you’d expect!
Saturday, 25th November
It felt like an early start for 9am, despite going to bed pretty early the evening before, but more useful information
Services from Breast Cancer Care
- BCC exists to try and make life easier for those with breast cancer, and wanted to be sure that we were aware of the range of services, opportunities and freebies available to us – including the opportunity for those around us affected by our cancer to ring the helpline and talk to one of the nurses for up to an hour.
- Look out for the Macmillan rehabilitation programme/exercise on prescription
- Relate Macmillan give counselling (not just for couples!)
- Look out for ‘Muddy challenges’, Casting for Recovery, and the Honey Rose foundation (not Willow) for over 40s for a day out.
- Also Something To Look Forward To, and Ellie’s Friends.
Break Out Groups: Lymphoedema (rather than intimacy or fertility)
“Lymphoedema is a long-term (chronic) condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs.” NHS. The intention is to try and prevent lymphedema in the first place, but it can be managed if it happens.
- Not classified until long-term swelling (3+ months), is a lifelong risk.
- Look out for tightness, lack of flexibility, heavy arm, swelling, marking on the skin – the sooner that it’s caught, the better.
- Mild: compression sleeves, drainage exercises + skincare
- Moderate: Learn triggers such as e.g. flying (visible swelling).
- High: Refer to clinic where likely to be given tight sports bras (down a size to pressurise the swelling), and Kinesia taping.. try to get back down to moderate.
- Any cuts/damage to the arm that has had lymph nodes removed = cover in anaesthetic and if not improved 24 hours later, go to GP. Try and avoid mosquito bites (look out for bands on Amazon said one other guest), avoid sunburn, and care with sudden temperature changes.
- Most important tip is skincare – keep the skin moisturised so it doesn’t dry/crack. Will be taught lymphatic drainage techniques – do physio activities given after surgery until have full-range of movement.
- Exercise and weight management are key. Blood/lymphs have been cut in surgery and need to rejoin – start with light/low repetitions and build up. Listen to your body. Use thimbles if sewing, gardening gloves, etc… Avoid any skin splits… Recommendation is blood drawing/blood pressure should be done on the ‘good arm’.
- Are questions about jacuzzi/sauna use, whether to use, whether to leave arm out – no clear cut answer, but extra heat makes the lymph nodes more pro-active and puts pressure on the system.
- If get cellulitis, get treatment immediately (rash, red blotches, red streaks, pain, tenderness, swelling, fever, chills). Take antibiotics (and Drs will let you take pre-emptively prescribed antibiotics if going abroad). If arrives – mark with a pen, so can see how/where spreading.
- Swimming, yoga and tai-chi are all good – don’t over-repeat exercises, if tired – cool down & elevate the arm, don’t suddenly increase exercise intensity, listen for pain.
- Cording impacts lymphedema – like stretching out an elastic band = exercise.
Healthy Eating and Diet Myths
- Cancer is a multi-factorial disease, with no magic cure in diet, but diet has an important part to play in nutrition/recovery. Listen to dieticians, rather than nutritionists, etc. as dieticians are professionals with protected certifications.
- There are a range of steps that information has to get to, to get to a level that they will be provided on a clinical basis – e.g. current fuss about turmeric – is only on ‘animal research’ level of the following diagram, no problem with people eating it – wary about taking as a supplement:
- We’ll be sent a document linking to resources to check out the links people are likely to send us, the ‘good’ sources of information.
- Mediterranean diet recommended (over Western diet): wholegrains, oily fish, healthy fats, fruit & veg in natural forms, rice, nuts, pasta and fruit. Less red/processed meat (although red meat has other health benefits), salt, sugar and alcohol (whilst recognising that life does not need to be monk-like).
- Concerns about dairy are related to Mad Cow Disease in the 1990s – in the UK the extra hormones have been banned in cows (though not in the US)
- Need to ensure get calcium (700mg), and Vit D (10mg) – mostly from the sun, but take supplements Oct-to-Mar in the UK.
- There’s no scientific evidence of particular health benefits from organic food.
- Your liver/kidney provide excellent detoxing functions – so no need for juice detoxes, alkaline diets, sugar free, clean eating (causes disordered eating), antioxidants, vitamins/minerals in excess. Watch out for people like Belle Gibson who are targeting desperate/vulnerable users.
- Weight gain is at a societal level, so individual change is hard to do. Availability of food, injuries, treatment, office jobs, transport have all changed…
- Looks at weight management, not diets. Goal-setting, lifestyle, group support, look at lifestyle/NHS services, consider 5:2 diet (developed by BC patients), emotional eating (eat your feelings – see a psychologist for a referral)
- Fast weight loss = increased risk of infection, fatigue and low mood.
- Final message: Enjoy your food! So, I think Beyond Chocolate falls within the latest dieticians guidelines!
Exercise with Leanne Livsey
- There’s a whole load of physical and psychological impacts of breast cancer (including reduced cardiovascular fitness, fatigue, bone loss, weight gain/loss, limited range of movement, insomnia/restlessness, depression, body image, anxiety, social isolation, self-esteem, etc.)
- Evidence has shown that exercise doesn’t worsen fatigue in treatment, and post treatment, it helps. Particularly light cardio-aerobic exercise, endurance and stamina building sports – e.g. walking, cycling, swimming. Will see reduction in body fat and growth of lean muscle.
- The 3 Ps: Plan (ensure that it’s enjoyable as well as can do it); Prioritise (Even if 5-10 mins day); Pace (start slow)
- Return to daily exercise as soon as possible (everyone’s different, so can’t put set guidelines for cancer patients, like national guidelines: 30 mins x 5 week). Break it down into 10 min chunks if necessary. If it feels too hard/heavy slow it down as the benefits are just below this (even for fit general population). Should be breathless but able to hold a conversation. 2 x week try and incorporate muscle building exercises. Look at pilates/yoga, dancing, resistance training, gardening, housework – whatever you enjoy/need to do – it’s movement… do it in TV advert breaks if you want! Listen to your body! Look at Let’s Get Moving for ideas near you…
- Watch out for pain, dizzyness, fatigue, nausea, breathing…
- Those undertaking 3-4 hours brisk walking per week = seen a reduced recurrence (all ages, weights, stages)
- Avoid swimming, gardening, etc. 24 hours post-chemo, and care with isometric exercises as risk of lymphedema – if do e.g. hold a plank, shake out arms to move fluid around.
- At the end we were given the Macmillan Move More guide if wished: we’d done the ‘Chairacise’ from the DVD in session (fun, and doable – now need some Thermabands!)
Breast Cancer as a younger woman – a personal perspective
This was a really powerful session with Kelly Short (You can watch Kelly’s story on How to Look Good Naked), demonstrating that there is life after cancer (including a recurrence). Life doesn’t just go back to normal post-treatment – there are physical and emotional scars (and the emotional take longer to heal)… the regular treatments stop, the cards stop coming, friends & family sigh with relief that it’s all over, people try and rub your head as the hair comes back, and people ask when you’re going back to work ‘as normal’. This is when the reality often hits…
Kelly talked about being given the ‘gift of time’ throughout treatment, and every time she felt well enough, was determined to do something nice, although she felt her ‘chains to the hospital’. She wasn’t sure how to move forward, but can’t go back… felt body was mutilated, found journal writing cathartic, and taking part in the show with Gok Wan (with support from Breast Cancer Care) showed her that no-one else can magically improve things – have to ‘pedal yourself’ – and the programme really challenged how she thought about herself, not believing compliments (people tend not to say anything if they don’t like it).
Kelly has found a joy in swimming, tends to buy normal (but high end) swimwear, and add prosthesis pocket. Was a regular traveller, and someone who thought it was frivolous to own e.g. a random pair of shoes, but learnt that actually these things have a benefit in how you feel. She got out of bed every day throughout treatment, even if just to change pyjamas. Encourages people to try any/all kinds of post-surgery bras, and even some normal bras can be worn by going up a cup-size.
Doctor told her that most things heal themselves within 10 days, so helped with the feeling of ‘my back hurts, it must be cancer’, etc. If worried, go and see GP. When the recurrence came, assumed it meant a death sentence, but found that she had the emotional tools from last time, and that the physical experience this time was very different (so an appreciation that cancer is very different for everyone), made the most of it, and travelled still (used InsureWith, as instead of £1500 for week’s cover, was £75, and still uses as the staff understand rather than blame everything on cancer, etc.).
Gok told her that one day she’d be grateful for the scar – and finally yes – because it means she’s still alive. Chooses to focus on what cancer gave her (took things away, but about your focus). See this BCC campaign. Write letter to body, expressing any feelings that it’s let you down. Less planning, more living in the now. Cancer not a definition, but a part of life – we’re who we become because of our life experiences (see Lisa Cherry – Soul Journey).
Gratitude: Express it
Guilt: Let go of it (for other’s affected by own cancer)
As a final note, I had excellent conversations with many people, there were tears, laughter, experience-sharing, including the notion that there’s not necessarily an ‘epiphany’ from cancer – but it does tend to make things that were already ‘wrong’ no longer seem a good fit, and more appreciation for the good (including jobs).
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.