Talking generically about what happens in Facebook groups when there is a secondary diagnosis, is a mix of (I know from past year), a feeling of frustration that you’re unable to do much for the person except cheer them on, and also a fear that it might be you next. In some ways, at least I can stop wondering if I’ll get secondaries, although there is going to be a whole period of readjustment to ongoing scans, etc. And if you’re bored of me talking about cancer, just imagine how fed up I am with it all – I tried to express a bit of that frustration and how people can help last week.
This morning’s appointment had originally been planned for a couple of weeks ago, as a follow up to see how I was doing after ‘finishing treatment’. Once the new tests started flagging up problems, it was delayed, so could be combined with looking at new treatment.
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I hoped that I’d find out all the new treatment plan today, but it’s more complicated, so was a reasonably long consultation – in fact in two parts, because the histology results came back after they’d disappeared to get my ‘(Not) Fit For Work’ note signed (I’m only signing off for the rest of this week, as work are prepared to be very flexible about what I end up engaging in – I am still doing valuable work for the university, even if it isn’t exactly what I was hired for – just reminding myself not to feel guilty about this – it’s not exactly a small thing I’m dealing with!)
What am I dealing with?
I had great help from ladies in the secondaries Facebook group in making sure I had the right questions to ask this morning – I sent a photo of planned questions, then added a few more. One that I hadn’t realised, was that the cancer (which is metastatic, in that it is a breast cancer cell that has escaped, rather than a new primary (different) tumour), can be a different receptor type – so responds to different drugs. So my breast cancer tumour was Oestrogen and Progesterone positive, but Herceptin negative. This (tiny) tumour is Herceptin (HER2) positive (so triple positive) – which was a little unexpected – but does happen sometimes (wonder if it’s that s***ing 10% again). Talking to Suzanne on the way home, she said her oncologist 4+ years ago was saying that there are an increasing number of Herceptin cases being picked up, and they were researching why, potentially related to people being more breast cancer aware, picking up earlier tumours, which may be HER2+, and that as they grow they mutate into negative. We don’t know, but interesting theory.
Anyway, I have much to read:
- Herceptin used to be only licensed to be given with chemotherapy, so I started getting ancy again with this, although now it can be given on its own (subcutaneously).
- The most effective drugs for HER2+ however, are denosumab (injection) and pertuzumab (intravenous – boo), and these do need to be given with docetaxel chemo (I had the gentler Paclitaxel weekly last time, but it’s not an option for this) (see Macmillan on the triple combination). ‘Tax’ doesn’t come with nausea, but it does come with fatigue (and I may have to consider the cold cap again .. worth it ‘just for 3 sessions’) – I’d have to have at least one round, on a reduced dose (it’s measured according to bodyweight), and then we’d go from there. The ‘tax truck’ is normally expected to hit 2-3 days after treatment I think, and lasts for a couple of days? One of the other drugs- I think the denosumab – likely to make me feel like I have flu the first couple of days, on the first round, but often future ones are given without problems. If I have chemo, then my port will go back in.
- There needs to be more discussion about the benefit of having chemotherapy, because I’m doing well at the moment (despite the fatigue), and it’s harsh, but (on the NHS?), they can only be given with chemo – I think even if I react badly to first chemo I can carry on with the other drugs so long as I’ve had one. So, oncologist is off to speak to his colleagues about that.
- Oncologist is also off to speak to his colleagues at the Christie about radiotherapy (to kill the cancer cells) – there’s some standard radiotherapy might be given, but also the option of stereotactic radiotherapy through the CORE trial (no, I don’t know what stereotactic means!), which apparently I AM eligible for because they are treating this as a new tumour (although it may have been there all the time, and in reacting to the treatment, it has now shown up. He’s not involved in the trial so doesn’t know the exact details – appointment for that should come through in next 2 weeks at the Christie, although it’s a randomised trial, so who sees what I’ll get. Stereotactic is clearly seen as the better, so if you’re the praying type, pray I randomly get allocated that! Once radiotherapy is completed, there’ll be another review.
- I’ve got a filling being removed/replaced on Wednesday (woo-hoo), and also have a letter for the dentist to check, as the bone drugs may affect my teeth (hurrah – I would quite like to keep what people say is my ‘nice smile’)…
- I will be having a whole body MRI scan at the Christie some point soon – it’s a long scan (possibly an hour) – and that’s likely to be every 1-4 months, increasing gaps so long as it’s stable. There’s no contrast required for this we don’t think, so no cannula (phew – I’m taking the small wins!)
- I’m staying on the Zoladex and Exemestane – at least for now.
- Yes, I have to get rid of my back massager, hold on going into any spa til we know treatment plan at least, and gym = nothing strenuous/no weights – just manage the back well basically.
The prognosis is still the same, positive, long-term, managed as a chronic condition (as diabetes is), with lots of monitoring, and if bits come back – treat them or cut them out as they come back.
What am I doing?
So since Wednesday, I’ve been off work, to give my brain some time to process – anticipating ‘going back’ on Monday – although I’m doing a lot of my work from home. I cried a lot first few days, went out on Saturday and had a blast with some other breast cancer women/upgraded my phone, Sunday I felt very low – but a couple of phone convos helped that. Today I’m feeling rather resigned to it all – hoping not chemo, but as that sounds like the best option, trying to come to terms with that.
- Trying to keep up my #REDJanuary #YourGoTRI and general gym/swim/Pokemon
- Brain’s not working amazingly, although talked to work, and just done a pre-record for BBC World Service on India/WhatsApp.
- Debating starting stripping wallpaper because it’s a mind-absorbing task but not one that I need to understand complex reading (apart from the above, obvs), or writing!
- Onto book 2 of Robert Galbraith (aka JK Rowling)
- Dentist Wednesday, Maggies Friday, cousin poss coming to visit Sunday…
- Stopped sleeping tablets and trying to readjust and find spaces to rest…
I’ll be back to see the oncologist Monday 2 weeks to hopefully make decisions about chemo, etc. and maybe know what’s going on with radiotherapy by that point.
I’m hoping to still be able to go to various things that I’ve signed up for – that treatment can work around them – as they recognise the long-term/mental health aspects of this! I’ve also managed to get myself on to a Breast Cancer Care ‘Younger Women Together with Secondaries’ event for 8/9 March (the one for primary cancers was excellent).
So, thanks for cheering me on, appreciate the many prayers (for strength to get through this, rather than miracles TBH), patience with my blogs, checking in, offers of help (seriously if anyone wants to come help strip wallpaper this week – very welcome – it’s the ‘achiever’ in me!)… and:
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.