| 7th March 2016
In spring 2015, I was diagnosed with breast cancer and treated in one of the main public oncology centres in the UK. Come early 2016, I am ‘cancer free’ and on long-term hormone therapy to reduce my risk of recurrence. So what has it felt like and what does it feel like now?
At diagnosis, I was told that in addition to treatment, I would be given hormone therapy, one pill a day for the next 5 years or longer, to lower my risk of recurrence. Considering the initial problem and how I felt then on hearing the diagnosis, taking one pill a day seemed like a piece of cake! I just wanted to get rid of the tumour and never to be in this situation again.
I read booklets from Macmillan Cancer Support and Breast Cancer Care on tamoxifen, the medicine I was prescribed, and I read how well-established and effective it is. Shortly before taking the first pill, I decided to research women’s experiences of tamoxifen in online forums.
I was surprised at the anxious and frustrated comments on how debilitating the menopausal symptoms that tamoxifen induces can be. I also followed links to sites commenting on the black box warning for womb cancer. I started to have second thoughts about taking it.
I was just through radiotherapy and I felt I was coming out of a tunnel, back to normal life. I wanted to forget all about this episode in my life and to enjoy myself. The negative voices on forums started to affect me, and to have a nocebo effect on me. Thinking of taking that first pill made me anxious. I had been told to start therapy within a few days of completing radiotherapy, and I needed to decide fast if this was for me.
I also had chats about it with other people with cancer and my relatives, and I occasionally heard the argument that nutrition can replace ‘toxic’ long-term hormone therapy. Somebody said, ‘I trust my broccoli’, and this stayed with me. I just did not know what to do.
In the end, I decided to take hormone therapy for two reasons.
Firstly, discussions on forums highlighted that there were three manufacturers of tamoxifen in the UK, and only one of them was selling a version of the medicine that is ‘gentler on women’, with menopausal symptoms that feel less severe and interfere less with daily life. I decided that I would try tamoxifen for six months if I could find that brand. After visiting several pharmacies that were not prepared to order the right brand for me as they had contracts with other manufacturers, I found a pharmacist who could meet my request.
Secondly, I decided that nutrition alone could not protect me. I hear the message from cancer support charities loud and clear that nutrition does contribute to reducing risk of recurrence, and I believe in it. This does not mean that nutrition is an alternative to medicine. In our culture, having cancer feels like being pushed into the battlefield unprepared. I needed to build my ‘firewall’, a moat to barricade myself against further harm. In the mindset I was in, I rationalised my decision to take the medicine: if there are side-effects, it works. I turned the initial issue into reassurance.
I believe that taking the brand I wanted has a placebo effect on me. Six months into hormone therapy, I feel relaxed about taking that pill. I feel that the side-effects are mild, and I am learning to manage them. I also plan yearly checks for other possible side-effects I worry about. Most importantly, I feel less anxious and I am starting to think medium-term again.
Also, I have found a ‘treatment buddy’ to team up with, another person who has cancer and also needed the reassurance of an occasional nudge to take our medicines as prescribed. This has worked well and we have adhered to our treatments.
In the end, the possible consequences of not taking our medicine properly scares us, and the combination of having a buddy and the threat of negative consequences is hopefully going to keep us motivated for a few years!
As a person with cancer, I have needed more than medical treatment to live through the experience and to move forward. For me, undergoing treatment was reassuring. Moving forward has felt more of a hurdle than I had anticipated.
Cancer support charities have provided me with amazing psychological support. Also, I have attended ‘Moving Forward’, the support programme from Breast Cancer Care run in association with Macmillan Cancer Support and healthcare professionals. I needed to understand my feelings, feel more peaceful, and strengthen my motivation and positive thoughts. The programme facilitators put perspective on our anxiety and concerns, and provided useful tips. I found three things they said most helpful:
Yes, surgery has changed my body. Yes, I have mild side-effects from treatment and might have some more in the long-term. Yes, I have mild fatigue and slower reflexes. Yes, I have the occasional low mood. Yes, taking my pill everyday keeps me in the past and does not help me to move on.
However, we discussed the work of Dr Peter Harvey, specialist clinical psychologist: ‘After The Treatment Finishes, Then What’, and I have realised that what and how I feel is common.
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Simon Young Director and Head of Commercial at Blue Latitude Health gives an engaging speech on the customer-centred future of medical information at Novartis ICE Innovation Day
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