Borderline, feels like I’m going to lose my mind

There are times when only a blast of 1980s Madonna will do. In relation to borderline ovarian tumours (BOTs), Madonna really does say (sing) it best: “Borderline, feels like I’m going to lose my mind”.

Why am I losing my mind this time? From the global network of over 100 fellow BOT survivors that I’m connected to, I remain frustrated at how many of these incredible women struggle to receive the support they need from family, friends and – sadly – employers.  This, it appears, is down to the “but, is-it-real(ly)-cancer-?” dialogue that is often associated with an attempt to explain a BOT diagnosis.  

I feel incredibly fortunate; my people get it.  However, those I’m not so close to – who I’ve not had a chance to sit and explain things to – don’t quite get it.  Perhaps it’s because we’re all scared of the C word so we prefer to think of it as a tumour that – once removed – will cause no further harm or worry.  It also seems common to revert to a strange hushed voice when discussing “lady-bits” and all things associated with a hysterectomy (including the inability to now manufacture a baby biologically), often resulting in a less than satisfactory explanation of surgical treatment.

I know that at the time of my diagnosis I was a real advocate for using the term “borderline ovarian tumour”; it reassured me, my family, my friends.  And rightly so – a BOT is not the same as “typical” ovarian cancer and has an excellent prognosis, normally treated with surgery alone.  However, I’m starting to re-think this.  A BOT is, essentially, a grade 0 ovarian cancer (typical OC is graded 1, 2 or 3 depending on how aggressive it is).  It requires extensive surgery and long-term, regular monitoring.  Recurrence is not improbable.  And, whilst if there is a recurrence it’s likely to be another BOT, the possibility of an occurrence of “typical” OC remains.  My current gynae-oncologist is clear: she refers to me as an ovarian cancer survivor whom she will continue to monitor closely.  She dislikes the term BOT as she feels that it’s not taken sufficiently seriously by (non-specialist) healthcare providers.  

Linked to this, Target Ovarian Cancer has released some new guidelines for young women with ovarian cancer; BOTs are mentioned specifically and this is definitely the best material I’ve come across that targets younger BOT ladies. 

This guide is for younger women who have been
diagnosed with ovarian cancer. It’s been written
by health professionals and experts, and was
developed through consultation with women who
have had ovarian cancer. 

The guide is helpful not only for BOT ladies, but for their family and friends – especially as it lists BOTs and this can help with some of the tension many with a BOT diagnosis experience relating to the ever-complex ‘is-it-real(ly)-cancer’ dialogue that often ensues.  

I still think we BOT ladies could (should) produce something tackling the BOT diagnosis specifically, that deals with the ‘is-it-real(ly)-cancer’ tensions head on.  All BOT ladies – along with our family and friends – should feel comfortable in talking about the realities of a BOT diagnosis without being told we’re overreacting and being hysterical.  Hysteria went out of fashion long ago (no wandering wombs here, thank you), and so should BOT-shaming.