T’other day I was given a gift that, like all the best pressies, I didn’t realise I needed but now I don’t know how I’ve got by without. It’s not your usual gift and the gifter was someone I’ve never met IRL but, similarly, I don’t know how I’ve got by without.
I was video chatting with the phenomenal @fanny_mcphee when she gifted me the power of (if).
We were talking about breast cancer recurrence after a primary diagnosis, as you do. Also known as secondary, stage 4 or metastatic breast cancer, it is often cited that 1 in 3 women diagnosed with early breast cancer will go on to develop advanced breast cancer, which is incurable.*
This was just one statistical jetsam in the pink tsunami of information that I drowned in the first October after diagnosis. I was physically sick when I read it and I know from others that they too have found it a distressingly triggering stat when they first learn of it.
1 in 3 couldn’t be right, right? That’s a third! That means that even though I’ve made it through the cancer treatment trilogy (chemo/surgery/radiotherapy or, as one of my specialists described it “having the kitchen sink thrown at you”) it could come back. And it couldn’t be cured; I would need treatment for life.
I won’t get an R-Rating from my team.
They don’t use the term remission because they can’t guarantee that treatment-resistant micro cancer cells aren’t burrowed elsewhere in my bod’ waiting to replicate into recurrence. I had an excellent response to neo-adjuvant chemo. Not the much hoped for pathologic complete response, but I was told that considering my invasive lobular subtype (ILC) was multi-centric and multi-focal the results didn’t get much better than mine. My subsequent skin-sparing mastectomy and radiotherapy mean that I (currently) have an NED status: no evidence of disease.
However, since I learnt of the 1 in 3 recurrence risk, I suffix my NED with a silent ‘yet’. I’m NED(y).
My internal conditional (yet) comes in different caveats. If someone asks my prognosis - I know, how rude! - or if I’m cancer free it takes the form of (at the moment) or, as in the earlier paragraph, (currently). It’s a kind of mental self-preservation to ward against the fear of a potential recurrence, but it’s not particularly self-serving for the psychological well-being of now.
ILC is known as the ‘sneaky’ cancer because it can be difficult to detect with imaging, but also because it can lurk dormant and tends towards late recurrence. I don’t want to live under the power of (yet) teetering on the precipice of something that may never happen, for the rest of my life (or until recurrence). I’ve done my treatment-time and want to be liberated from the limbo-land that I existed in then.
This all came burbling out to @fanny_mcphee, or Allison as she's known IRL, when she asked if I’d thought about how I’d feel if I was 1 of the 3. I, as I do, rambled on. Allison, as she so sagely does, gently nudged me to tweak my thinking: “what if it was an ‘if’ instead of a ‘yet’?”
That connected to my core and I cried with the relief of it. ‘Yet’ implies that something will happen – it’s just a matter of time. But an ‘if’ may never happen.
Such a simple switch, such a powerful shift: to the power of (if).
Gifted by someone whose (if) has become the reality of living with incurable breast cancer.
So from now on I’ll be invoking the power of (if) and living in the privilege of the what-ifness of being 1 of the 2 in 3 who has no evidence of incurable breast cancer.
Cos sometimes it’s dawn when it looks like dusk.
* When I asked my oncologist about the 1 in 3 stat she said that it doesn’t necessarily relate to Australia as no comparable research has been undertaken here around recurrence, and it is a statistic that relates to the UK and the US. Diagnosis stats for breast cancer in Australia (1 in 8 trending towards 1 in 7) seem to align with the UK & US, so it seems that it could be surmised that recurrence rates would be similar (and/or any difference negligible percentage-wise), but it would be great to see research around recurrence rates for Australia. Saying that, I really thought that I had seen the 1 in 3 stat on an Aussie website but can’t find it now. And I’m not about to contradict my medical onc as she’s a bit of a guru!
It's worth noting that Australia has one of the best breast cancer survival rates in the world and, while the number of people being diagnosed is increasing, the number of people dying from breast cancer is decreasing.
Check out BCNA for resources to help manage the fear of recurrence.