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Life after breast cancer: what happens now?

October 7th 2015 / Ayesha Muttucumaru Google+ Ayesha Muttucumaru

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This year, The Estée Lauder Companies UK Breast Cancer Awareness Campaign asks the difficult and overlooked question of, ‘What happens afterwards?’ We spoke to a renowned psycho oncologist to find out

According to Cancer Research UK, one in eight women will get breast cancer in the United Kingdom. However, thanks to treatment advances, increased awareness and scientific breakthroughs, 87% of these women will survive at least five years or longer and many have a realistic prospect of cure. A positive step in the right direction, the effect on those diagnosed and their loved ones is as far-reaching as it is hard to articulate into words - differing from person to person from the physical to the functional and social to the psychological. While the focus on the prevention, treatment and cure of cancer in previous campaigns has been of paramount importance for the cause, one question that has often been overlooked is, ‘what happens afterwards?’

This year, The Estée Lauder Companies UK Breast Cancer Awareness (BCA) Afterwards Campaign looks to shed light on this very topic. Ranging from treatment-related side-effects to adjusting to a return to ‘normality,’ one study of 3,300 long-term survivors (two years post diagnosis) showed that 47% suffered from anxiety and a fear of recurrence.

Fronted by breast cancer survivor Paula Beetlestone, who was diagnosed in May 2013, the campaign looks to provide a source of inspiration and strength for all those affected by the aftermath of the disease. Paula told us, “The ‘Afterwards’ is something that is little spoken about, and it came to me as a bit of a shock as it was a real mental rollercoaster. I didn’t give ‘afterwards’ the same mental and physical focus as I gave myself during treatment and instead tried to throw myself into normality to show friends and family that I was better after they’d been so supportive. Yet, I often found (and still find) elements of my continual recovery harder than when I had the focus of routine treatment, partly because the symptoms are much less visible. This means that women in remission often shoulder the anguish of breast cancer silently, and I’m supporting The Estée Lauder Companies’ UK Breast Cancer Awareness campaign ‘Afterwards’ to encourage the sharing of experiences and advice.

“Speaking about my experience, during treatment and beyond has been really beneficial for me, as people will only be able to know how and when to help if you let them know that everything’s not completely rosy.”

The campaign coincides with the book publication by The Estée Lauder Companies of ‘Afterwards: Reflections on Life Beyond Breast Cancer,’ - a collection of tips and advice created to provide support to all breast cancer ‘survivors’: those who have recovered or are still having treatment for metastatic disease, as well as the friends or family members that love, or have loved and lost, someone to breast cancer.

What can those affected by breast cancer expect to happen afterwards? We asked Professor Lesley Fallowfield, Professor of Psycho Oncology at the University of Sussex for her advice and expertise on the side-effects - both on body and mind.

What most commonly affects cancer survivors following remission?

According to Professor Fallowfield, “It is really important to emphasise that thanks to scientific breakthroughs, a majority of women who get breast cancer have a realistic prospect of cure and (87%) of surviving beyond five years or longer. Yet many cancer survivors and those close to them are living with the after effects of cancer and its treatment, which can include both physical and psychological difficulties.

“Surgery has improved dramatically and is less radical and disfiguring, but about 1 in 10 women do have arm problems such as swelling, pain and numbness. Following surgery, radiotherapy can also cause some difficulties with arm mobility although the skin rashes seen in the past are now less common. Chemotherapy can cause a plethora of side-effects such as hair loss (which occasionally never regrows), nausea and vomiting (which is less of a problem now with modern anti-sickness drugs), troubling soreness and loss of feeling in the hands and feet, and in younger women a premature menopause with all that that entails. We are much better now at helping patients during this period of intensive treatment but many will experience an exhausting fatigue that may continue for many years. If women have certain types of tumours they may require long-term hormonal medication. This can cause hot flushes, night sweats, sleep disturbance, joint pains, vaginal dryness and sexual problems as well as fatigue. It is so important to let women know that not all these problems are experienced by all patients, and that there are plenty of things that good cancer centres will offer them that help.

"Psychologically, most commonly, there’s the fear that comes from being brought closer to your own mortality and the very real and terrifying prospect that the cancer might return. In fact, nearly half of long-term survivors (two years post diagnosis) suffer from this fear that their cancer may come back. What they need to know is that there are still many other treatment options available it cancer does return and that many women with even advanced disease do continue to live long and good quality lives."

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How about loved ones, family and friends?

“Emotions of family and friends oscillate wildly between shock, sadness and anxiety - many feel at a loss to know what to do to best help their loved ones,” says Professor Fallowfield. “Caring for someone while also trying to maintain work responsibilities and perhaps fulfil the other role demands of a family can be exhausting for them. Some acknowledge feeling resentment that they have been placed in this situation and then guilty and scared that their loved one might die. Fortunately there are some helpful support lines available from the cancer charities and online forums where people can off-load and share tips and advice. The 'Afterwards: Reflections On Life Beyond Breast Cancer' book provides some poignant and inspiring quotes from patients and families on their feelings.”

What can help overcome these difficulties?

“What works for one woman may not work for another as we’re all different,” says Professor Fallowfield. “‘Afterwards: Reflections On Life Beyond Breast Cancer’ features wise words of women and men who’ve been touched by breast cancer in different ways, and includes their own ways of coping through their diagnoses, treatment and beyond. It illustrates the different ways that women and their loved ones can live well during and after a breast cancer diagnosis. The benefits of gentle exercise are compelling, be this walking, yoga or pilates. Some reappraise their lives completely and alter priorities – who needs a clean kitchen floor when the sun is shining outside?”

Is there anything that is still lacking in terms of support for women and men following cancer?

“Although the outlook for anyone with breast cancer is undoubtedly better than it was 30 years ago, significant numbers of patients are still unable to capitalise on the survival improvements brought about by better diagnosis and treatment due to anxiety and depression which has remained constant over the past three decades,” says Professor Fallowfield.

“We need individualised support services rather like the individualised, targeted treatments for breast cancer that women receive. The needs of women with more advanced disease remain rather unaddressed compared to those at earlier stages of the disease which seems wrong. Also because it is rare in males, the problems men with breast cancer face are largely unheard.”

What can we do to support the campaign?

Supporting the broader global BCA Campaign, The Estée Lauder Companies’ UK Afterwards Campaign looks to spread awareness of the disease, encourage people to donate to Breast Cancer Research and empower women, men and families around the world to help defeat the disease through a universal call-to-action - to share all the meaningful ways they take action by posting a photo, video or message on BCAcampaign.com or on Instagram or Twitter using #BCAstrength. In the UK, they are asking people to share the meaningful ways they take action Afterwards specifically.

This call-to-action could be encompass a number of practical steps though with regards to the early diagnosis of the disease. According to Elizabeth Hurley, Global Ambassador for The BCA Campaign since 1995, who lost her grandmother to breast cancer, “After her death, I wanted to do my part to honour her, and help spread the message that catching the disease early can hugely increase the chance of successful treatment, and that’s why I’ve supported The Breast Cancer Awareness Campaign since my first meeting with Evelyn. I hope people everywhere learn just how impactful each and every action can truly be in bringing us closer to a world without breast cancer. My action is to get a mammogram each year on my birthday and encourage women around the world to do the same.”

After speaking with Dr Fallowfield, hearing how extensive the after-effects of breast cancer can be and how many people's lives it's touched, it's a cause definitely worth supporting not just this Breast Cancer Awareness month, but all year round too in our opinion.

To read the book or watch the making of the advert, visit bcacampaign.com.

Follow us @getthegloss and Ayesha @Ayesha_Muttu.

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