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:


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So, not knowing if/when might have to stop swimming, and as it’s #worldcancerday #worldcancerday2019 – I’ve done my #swimathon distance of 1.5km (max swim recently has been 1km)!! Rest of team doing end of March! #busylivingwithmets

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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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It’s #waitingroomfeet again today #worldcancerday – time to talk to the oncologist about chemotherapy etc …

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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!

Photo by Martha Dominguez de Gouveia on Unsplash

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