#my problem was diagnosed five days ago with the only treatment being a hysterectomy

[thefandomlesbian]

Tackling the very real possibility that I feel like I'm dying and healthcare in America has decided my life isn't worth the time expenditure of what it would take to save me

[jozi-ovari]

It’s a new year and I’m still confused (about BOTs)

It’s a new year - and two and half years since my diagnosis and surgery. 

Despite trying to keep up with new research findings and trying to become gynae-oncologist-pathologist-surgicalmenopause literate, I still get confused about the confusion about BOTs (borderline ovarian tumours). 

And, frustratingly, I watch - through our ever-growing (closed) Facebook group - newly diagnosed BOT-ladies going through the same confusions.  

The problem with BOTs:  they’re not well understood; they’re not properly researched; and, there’s no clear consensus on what they actually are.

The result? Confusion.

Unsurprisingly, all of us diagnosed with BOTs have access to different information, to different insights, and to different treatment recommendations; these different ‘facts’ create anxiety, tension and (sometimes heated) debate between those of us with the same diagnosis.  Who should we trust?  Who is right?  What is the best treatment? Is BOT cancer? When you’ve been told one thing by an “expert” medical provider and then someone else from another part of the world with the same diagnosis as you tells you the opposite from their “expert” medical provider, it’s overwhelming.  In fact, it can be downright terrifying.  

What we do know is that BOTs are grade zero ovarian cancer.  This means that they are tumours with low malignant potential (LMP) and therefore unlikely to progress to ‘typical’ ovarian cancer.  However, they can progress to ‘typical’ OC (graded 1, 2 or 3 - with grade 3 being the most aggressive form).  Some evidence suggests that BOTs are precursors to ‘typical’ OC.  But, to make sure that things don’t become too straightforward, this - like much about BOTs - is contested.

So are BOTs cancer or not?  Yes; they are.  BUT, these grade zero cancers aren’t the same as grade 1, 2 or 3 ‘typical’ OC.  I’ve written about the challenges of our diagnosis - particularly in relation to what we call it - before, and re-reading this old post holds true today

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.

We also know that BOT recurrence - or, indeed an occurrence of ‘typical’ (grade 1, 2 or 3) OC - is more likely to happen AFTER five years from your initial diagnosis.  This is the case even if (like me) you have undergone radical surgery (also know as “completion surgery” - horrible term).  So, 2.5 years “in the clear” is bloody brilliant, but let’s not forget that follow-up is recommended for 12 - 15 years.

Image via basketgirl

In trying to find some helpful words for newly-diagnosed BOT ladies joining our global Facebook group (now 259 members!!!), I was going back through some of my old blog posts.  And this post about my own journey that I wrote in January 2016 resonates as much today as it did a year ago.  It’s long;  I’m re-posting part of it below.....

After surgery it was explained that the tumour was more extensive than originally indicated on the ultrasound and CT, that I had lost a fair bit of blood during surgery, and that the tumour had spread along my pelvic wall and rectum - non-invasive implants.  My omentum was inflammed, but no implants were found. The radical hysterectomy was a success but my incision ended up at 34cm in order to get all the tumour out.  My surgeon indicated I should anticipate a stage 2c ovarian cancer diagnosis and - when I asked - was given a five-year prognosis.  I was anticipating chemo and fixed on getting strong enough post-surgery to start.  Several days later,​ however, I​ was told I fell into the 10% of ovarian tumours that are borderline, and given​ a stage 2c serous borderline ovarian tumour diagnosis​.​ ​ I was told that there would be no need for further treatment but long-term, regular monitoring. The diagnosis of a borderline ovarian tumour (BOT), whilst incredibly fortunate is also incredibly confusing.  And this has been my​ biggest challenge.  More about this on my blog: http://jozi-ovari.tumblr.com/

Associated with this confusing diagnosis - which is confusing not only for the owner of the diagnosis, but also her friends, family, colleagues, medical team, and wider society (including life insurance underwriters) - is an unfortunate situation:  through not wanting to scare others (and, perhaps, ourselves) a BOT diagnosis feels like something to cling to; it is not the same as typical ovarian cancer, it has a much better prognosis and is often successfully treated with surgery alone.  We use this terminology to reassure ourselves that it’s all OK.  To a great extent, this is true - particularly where completion surgery has been undertaken (i.e. no fertility sparing, a difficult choice for younger women who are planning to become pregnant) but it is cancer.  A BOT is technically a grade 0 ovarian cancer.  Regular follow-up is required for 12 - 15 years (longer, I think but there are insufficient longitudinal studies to help here).  And it can reoccur and occurrences of typical OC do sometimes take place.  For some ladies, the initial BOT diagnosis was incorrect and it is later found that they did in fact have a low-grade ‘typical’ OC, requiring further treatment, including chemo and radiation.  But this diagnosis leaves many BOT ladies in the dark: it’s difficult to obtain support, difficult to talk about.  We are very aware that a BOT diagnosis is different to a typical OC diagnosis and many of us have felt out of place in joining online support groups for ovarian cancer.  In an attempt to address some of this, I started blogging and started to compile research relating to BOTs.  It’s not complete, but it’s a start.  I can (try to) put my position as an academic and my research skills to good use: I can access the journal articles and attempt to summarise the evidence and share with others.  I can make use of my social capital and ask my global network of medically-qualified friends and colleagues to help me better understand.  With another BOT lady (who I met through the Macmillan ovarian cancer online support group) a (closed) Facebook group was set up in September 2014.  Today, there are 144 members from across the globe.  Through the group, we try to share the best evidence relating to diagnosis, treatment and follow-up.

In addition to confusion around diagnosis, it isn’t easy to know how to talk about issues relating to undergoing an early menopause and the associated symptoms, debates relating to oestrogen replacement and - more recently - the decision to take a drug to assist my brain in overcoming menopausal-mayhem at 36 years of age.   I’m not sure if it’s that others don’t listen or if it’s that I don’t know how to talk.  The Facebook group has been an incredible source of support:  we are all strangers but we share something personal; we discuss our ups and downs, and have a forum to ask those embarrassing questions that we don’t know where else to ask.  

I have also struggled with the ways in which the most common response to my experiences is associated with my position as a single woman who has not created, gestated and delivered my own child: I find this difficult to speak to, but have written about it.  Personally, I’d like the focus to be on my luck in my diagnosis and rapid surgery and that I am fortunate enough to be able to access great follow-up treatment​; this is ​not the case for all women globally.  I’m celebrating the fact that I was fortunate enough to be able to have parts of my body removed that may have limited my life and that, as a result, the future - whilst unknown - looks bright.

And the future?  As confusing as it remains, it still looks bright.