A great prognosis doesn’t remove the difficulties of living with the associated diagnosis.
With appropriate treatment, a diagnosis of a borderline ovarian tumour (BOT) has an excellent prognosis.
BOT – grade zero ovarian cancer (OC) – is normally treated with surgery alone.
BOTs are slow growing, so chemotherapy is of no use [i.e. it’s not needed].
Surgery, however, is radical, often involving a “full pelvic clearance” and resulting in early onset, surgical menopause – and a bunch of associated challenges.
Even after surgery, long-term follow-up is needed and the risk of recurrence (no matter how small) doesn’t disappear. And neither does our fear.
I think we – and our healthcare providers, family, friends, colleagues – need to find a way to describe our diagnosis – and our experiences living with it – that doesn’t underplay it. Of course we mustn’t overplay it either: comparatively, it’s a pretty great ovarian cancer diagnosis to own.
But the diagnosis, the treatment, the surgery – and the associated consequences [surgical menopause especially – more on that coming in another post], along with the monitoring, and the accompanying waiting and worrying are often sidelined: by our healthcare providers, by us, and – as a result – by others.
Collectively, we focus on the “excellent prognosis”.
That’s ok; we do have an excellent prognosis.
I’m sure I’m not the only one who has celebrated a BOT diagnosis: I was told to prepare myself for 5 year survival after my surgery as it was presumed to be stage 2c typical OC.
But I was then told WOO-HOO IT’S BORDERLINE (i.e. stage 2c grade zero ovarian cancer).
It’s crazy.
And I feel incredibly grateful.
But 2.5 years later I’m realising I’m exhausted.
I’m exhausted from always saying “it’s only BOT” and for using this to reassure family, friends, colleagues and myself.
I’m exhausted from telling myself that I shouldn’t be worrying – that I don’t have a diagnosis that justifies me worrying about every ache or strange sensation. I’m currently feeling wonky: my hormones are out of whack, menopausal symptoms are flaring, I’m not sleeping, my iron reserves are shot, I’m tired and dizzy and faint. My brain fog is worse than ever.
I’m exhausted waiting on my six monthly check up; it’s the first time it’s been six months (initially I had a monitoring visit every 3 months, then every 4). I’m supposed to be relieved, I think, that I’m doing ok and have been “upgraded” to less regular visits. But I’m realising that the anxiety about what might be going on inside my body since my last check up is perhaps more exhausting than more regular follow-ups. Maybe I should ask for a downgrade.
I’m exhausted by the confusing information, the limited research, the conflicting advice about BOTs.
I’m exhausted by the lack of clarity about what BOTs are, or aren’t.
The challenges of this exhausting diagnosis are shared amongst many other BOT ladies that I’ve engaged with.
I’ve written about this before.
Because we say “it’s only BOT”, we don’t feel we deserve to worry or complain.
Because we say “it’s only BOT”, our friends and families don’t always know that we need support [disclaimer: my friends and family are bloody brilliant].
Because they say “it’s only BOT”, our healthcare providers don’t always provide the best support. [disclaimer: my gyane-oncologist is flipping fantastic]
Perhaps – with practice – we do become better at living with our diagnosis. But I’m not sure that we can ever completely master it.
The fact is, it’s a challenging diagnosis, in spite of its excellent prognosis.
And it can be really hard to talk about.
jozi-ovari 