The wonderful folk at Ovarian Cancer Action are looking for ladies who are willing to share their stories as part of their ongoing public ovarian cancer campaign, particularly in relation to ‘speaking up’. I thought it would be good to try to get some BOT stories shared…. so here’s my attempt to (keep on trying to) speak up…. [well, it’s what I’ve mailed in response to the question that they sent me ]
Can you think of a time during your cancer journey where you’ve either held back on speaking up (perhaps you felt embarrassed, or maybe you felt you were wasting someone’s time) or where you felt you weren’t listened to? (Maybe you kept mentioning symptoms but felt as if nobody was listening – could be friends, family of drs/nurses)
For me, this has related to my experience post-diagnosis and surgery – which all happened within a few days in the UK in July 2014. I’m originally from the UK, I’ve been based in Johannesburg, South Africa for the past 12 years where I’m an Associate Professor at Wits University. I’m regularly in the UK and my diagnosis took place there during a research fellowship I was undertaking in London. My diagnosis was, in fact, incredibly fast. If anything, I had been the one who wasn’t listening (literally) to my body. I had put off seeing anyone about increased gas and bloating – assuming it would all pass – but, after a weekend camping in coastal Suffolk and complaints from my tent-mate (my brother) about my excessive (impressive) flatulence, I did go and see a GP. I guess my brother is really the one to thank for my diagnosis. My GP indicated she thought it was IBS but I was not convinced and had been exploring symptoms online before my appointment (google “excessive wind and bloating” it doesn’t take long for various ovarian-associated ailments including polycystic ovaries and ovarian cancer to come up). Thanks to Dr. Google, I requested a CA125 test. I wasn’t really thinking cancer but did wonder if I had polycystic ovaries based on my skilful googling. My GP did listen to me: she thought that it was unnecessary and that I had no symptoms to justify the test but that if it would make me feel reassured, she would order the test (she was running several blood tests anyway). If she hadn’t listened to my concerns and had decided against the CA125 test, I’m not sure what would have happened. A few days later – five days after my 35th birthday - she called and told me my CA125 was 2,257. It should be under 35. This was a Friday. I had an ultrasound the following Monday that indicated a high malignancy alert. I then underwent a CT scan and another ultrasound on the Wednesday and had surgery the following day, undergoing a radical hysterectomy and omentectomy. As I am based in South Africa, I have a medical insurance plan and this was what allowed for such a rapid journey to surgery whilst I was in London.
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.
jozi-ovari 
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