So, today has been a funny day… it’s #WorldCancerDay, so social media is full of extra content encouraging us all to be vigilant in looking for symptoms of any kind of cancer, and to keep focusing on funding to be able to provide more treatments. My (new) cancer if I’d had it 10-12 years ago would have been ‘I’m sorry, there’s not much we can do longterm’, whereas now there are a range of very good treatment options… so I carry on seeking to live with metastatic cancer.
My team at Manchester Met Uni are taking part in a Swimathon for Cancer Research UK and Marie Curie Care. As I was going to an appointment with oncologist today, to discuss chemotherapy, I decided it was an appropriate day to stretch myself and do my share of the Swimathon early (as if I have chemotherapy I won’t be allowed to swim – infection risk). I’ve been getting up to 40 lengths reasonably frequently, so 60 lengths (1.5k) was my stretch target today … and I made it:
This afternoon it was back into the waiting room at Stepping Hill – thanks Suzanne for your company – and we’d settled in for a long wait, when we got called in only 30 minutes late!
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The appointment was relatively fast, because apparently I am ‘an unusual case’, with HER2 not in my original tumour (despite the extra DISH test), and now showing in the new tumour (which is definitely a metastatic tumour) – so there are lots of conversations and no 100% obvious route for treatment. They are now looking for more information from my original tumour, and my spinal biopsy cells – with them being subjected to the FISH test at the Christie.
So, today, there’s no changes in the systemic treatment – I will continue with the Zoladex and Exemastane, and tomorrow I will sign up for the CORE trial, and then find out if I’ve been put in the 50% for stereotactic radiotherapy (with a wait), or 50% with standard radiotherapy (which means we get going). Essentially they want to get rid of as much of the tumour on my spine as possible (they’re not expecting to eradicate it, but to control it), and that treatment is in process of happening, before anything else happens.
Once that has completed, we start looking at more systemic treatment, such as chemotherapy – which they’re still keen not to give me as I’m looking pretty well, so there may be an option to just give me Herceptin. There will be a lot of discussion, and I am expected to be an active participant in this – now I’ve been told about the gold standard drugs that come with chemotherapy, obviously I want them, even if I don’t want the chemotherapy – but happy that lots of things are being discussed – and they’ve clearly got my health as a whole in mind – and want to do best for overall treatment and wellbeing.
There is no change in prognosis, but as the hormonal treatments have already shrunk the tumour, that take the pressure off other treatment… so I see the oncologist again in 3 weeks. I was hoping that by end of this week I’d know what my plan was – instead – sit with the uncertainty and lack of control a little longer, knowing at the heart of this is a desire to not over-treat!
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; second edition in process) 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.