Lizzie

I’d like to point out that if I had have been given full clearance surgery while this was at BOT stage – this would not be happening.

There’s been a lot of talk on here in the past few weeks about how scary menopause is, and how you should try to hang onto your ovaries.

While I’m not trying to be alarmist, THIS is the consequence of not having clearance surgery.

I have always been pro-clearance surgery. But I can not stress enough how vital it is to have it BEFORE sh*t goes wrong.

                                                                                     Lizzie, February 2017

Yesterday I heard the devastating news that Lizzie – a fiercely honest and inspiring health advocate, and active member of our borderline ovarian tumour (BOT) Facebook group – had passed away. 

Lizzie, a wonder woman of note, had received a mucinous BOT diagnosis (stage 1) in 2013, after having had a cystectomy to remove the affected tissue from her right ovary.  

She had requested completion surgery but was denied.  

She requested completion surgery several times.

In 2015, Lizzie experienced a recurrence – again in her right ovary – and had the affected ovary removed.  After pathology, Lizzie received a diagnosis of ‘typical’, low-grade mucinous ovarian cancer (OC), now at stage 2 – with cells found in the pelvic wall and pelvic washings.

At this time, Lizzie also discovered that a patch of ‘typical’ low-grade mucinous OC was found within the tissue that was removed in 2013.  She wasn’t told this information, only given the mucinous BOT diagnosis.

Whether her original diagnosis of BOT was a misdiagnosis (as can happen in around 20% of BOT cases) or whether her BOT then progressed to typical OC, we don’t know.  We also know that mucinous BOT (or typical mucinous OC) may have originated elsewhere – which is why women with a mucinous BOT diagnosis often have their appendix removed, and should be referred for a colonoscopy.

But the fact remains that evidence of typical mucinous carcinoma had been identified in 2013 and this was not reported to Lizzie.  

We consistently talk about the importance of being advocates of our own health.  But what happens if key information is withheld?   

Would completion surgery have prevented a stage 2 typical OC diagnosis in 2015? Perhaps. But, we don’t know.

Is BOT a precursor to typical OC?  The jury is out but evidence does suggest that this is the case.

This – as Lizzie herself pointed out – isn’t about being alarmist but it is about being informed.  Remember: BOT is, essentially, grade zero ovarian cancer. But don’t get caught up in the naming game.  Don’t get distracted with the “is BOT ovarian cancer?” debate. And – importantly – don’t underestimate the seriousness of a BOT diagnosis.  

A great prognosis, doesn’t make living with a BOT diagnosis easy.

BOT – with appropriate treatment and monitoring – has an excellent prognosis.  But BOT is grade zero ovarian cancer, and slower growing than ‘typical’ OC.  ‘Typical’ OC is graded 1 (low-grade), 2, or 3 (high-grade).  

We do know is that completion surgery IS the best treatment for the prevention of a BOT recurrence, or an occurrence of typical OC.  And Lizzie requested this numerous times.

We do know that regular monitoring – transvaginal ultrasounds – for AT LEAST ten years is key.

And most importantly, we DO know that we are the best advocates for our own health and our bodies are our business.  Lizzie had requested completion surgery but her team refused because – in Lizzie’s words –

…….. some absolute f*cking prat decided to prioritise my ability to make babies over my health.

Lizzie is a wonder woman.

Thank you, Lizzie, for your bravery,  honesty and continued awareness-raising.

I’m sorry we never got to meet in person, but Lizzie provided much laughter, compassion and honesty to our little online community.  Lizzie will be sorely missed, and always remembered.  

Whilst our Facebook group is a closed, private group for ladies diagnosed with BOT, Lizzie wanted this information to be shared. So I’ll leave you with Lizzie’s second-to-last post, made in early January 2017, and an image from her Facebook profile: F<CKCANCER. 

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Hi everyone.

I’ve had some devastating news today. What I thought was a chest infection turned out to be the progression of the ovarian cancer.

It’s now inoperable, and I will be starting aggressive chemo therapy to try and control it within the next weeks.

Whether or not it’s short term control, or long term control is unknown.

I’d like to point out that if I had have been given full clearance surgery while this was at BOT stage – this would not be happening.

There’s been a lot of talk on here in the past few weeks about how scary menopause is, and how you should try to hang onto your ovaries.

While I’m not trying to be alarmist, THIS is the consequence of not having clearance surgery.

My cancer was picked up less than 4 months after it developed, and this is still the outcome.

Screening tests are all well and good, but they may not be enough to save your life.

My oncologist thought it was safe to leave my left ovary. He was wrong, and once again I missed the very small window to have clearance surgery to make a difference.

I have always been pro-clearance surgery. But I can not stress enough how vital it is to have it BEFORE shit goes wrong.