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.

Oncologist Appointment

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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It’s #waitingroomfeet time again. Time to find out what the treatment plan is. #cancersucks #busylivingwithmets

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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:

 

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Much reading. #cancersucks. New tumour IS metastatic Breast cancer in my spine, but weirdly is Herceptin positive, unlike my first one. #stage4

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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.

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:

Photo by Drew Hays on Unsplash

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