The thing is, a borderline ovarian tumour (BOT) IS cancer.
Yes; it’s borderline.
No; it’s not the same as “typical” ovarian cancer (OC).
It’s got a low malignant potential; it’s slow growing and may or may not become malignant…
But many healthcare providers do (correctly) refer to it as borderline, grade zero, OC. And, from recent experience, insurance companies definitely do.
You see, it’s so weird. On the one hand, I’m a VERY STRONG advocate for calling BOTs BOTs. Because they ARE borderline tumours. BUT this seems to then work to alleviate some of our own fears as BOT ladies (ah! It’s “just” a BOT) and this also works to reassure friends and family (ah! It wasn’t cancer) and we all move merrily forward. The confusion is that this IS correct; a BOT is NOT the same as a typical OC diagnosis…. but this is where the continued confusion around the BOT naming game comes in.
From recent conversations with other BOT ladies – and being 9 months now since my diagnosis and surgery – I have some concerns about the ways a BOT diagnosis is received by both the woman experiencing a BOT diagnosis, and by family and friends. None of us want to dwell or self-pity ourselves re. our diagnosis and treatment decisions… and we ARE aware that we are fortunate it’s not typical OC as treatment involves surgery alone and prognosis is excellent BUT that rhetoric sometimes does more to undermine a BOT-survivor’s journey than it does to support it.
From some of the stories I’ve been hearing, it seems that the “it’s just a BOT, it’s not cancer” terminology has resulted in women NOT receiving the support they need from friends and family to deal with this emotionally and physically challenging diagnosis. Surgery IS major, often resulting in women undergoing a surgical menopause that takes a huge toll on your body – emotionally and physically. Follow-up IS scary. I feel fortunate; I have a super support network. But I don’t know if my diagnosis is properly understood… it’s not about fear-mongering but it is about asking people to take the time to understand a bit about this rare and confusing diagnosis.
The more engaged with this diagnosis I become, I STILL advocate for use of the BOT terminology. BUT people need to know what BOT is; that we do face 12 – 15 years of follow-up and uncertainty. That yes, with monitoring, if there’s a recurrence of BOT – or an occurrence of “typical” OC – that we’re in the best possible place; monitoring = early treatment… but that this IS shit scary and we have all had/are having MAJOR surgery, that – believe me – takes long to recover from fully.
I also think that people don’t like talking about hysterectomy and early menopause, and the associated discomfort many feel around knowing that someone cannot have (any more) children. I understand that it’s not an easy topic and I don’t expect everyone to start every conversation with “how’s that surgical menopause going?” or “I know you always talked about adoption, so you’re totally cool with this, right?” But I do think folk need to have a little read up to understand what this is all about. BIG hormonal changes ARE difficult to manage and get under proper control.
And, FYI: “a bit of oestrogen for a few months whilst things get back in balance” isn’t the answer. It’s oestrogen replacement until I’m in my early 50s at least. Those damned little sticky patches; one of the best medical interventions ever.
[And if you want to get all anti-HRT on me; don’t. I’ll be posting about why oestrogen replacement for young women who have experienced/are experiencing a surgical menopause is The Way Forward soon.]
Thanks to the 71 fabulous BOT ladies in our Facebook group for prompting this post.
Image is from http://doctorcatmd.com/wallpapers
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