OCAM - Cold Turkey on Google

05 March 2016

Having obtained the diagnosis I found myself craving information about ovarian cancer and treatments, anything that would help me make sense of it and why I had it. Initially I refused to look up anything on the internet for fear of what I might find.  I did, however, feel I could read the hard copy literature published by Macmillan since it had been recommended by the healthcare professionals. Having started reading it apprehensively I soon realised it was okay. It was very factual, didn’t contain scary statistics about prognosis and was very mindful about highlighting aspects that may be relevant to some patients but not all. 

The Macmillan literature did present some stark facts about ovarian cancer risks that only served to throw up more unanswered questions. It said 85% of ovarian cancers occur in women over the age of 50 (I was diagnosed aged 39) and it listed factors thought to reduce the risk of developing ovarian cancer – all of which applied to me, and factors thought to increase the risk – none of which applied to me.  The opening sentence “the causes of ovarian cancer are not yet completely understood” felt comforting in a way.  

Ovacome, one of the ovarian cancer charities, has an initiative to encourage women and healthcare professionals to recognise the symptoms of ovarian cancer. As its centre piece is the acronym:

•    B for bloating that is persistent and doesn't come and go
•    E for eating less and feeling fuller
•    A for abdominal pain
•    T for telling your GP

For me the bloating was only noticeable three weeks prior to my diagnosis and the abdominal pain for even less time.  That aside, I still think there’s a considerable communication effort required to raise awareness of these symptoms, particularly because of their similarity to the symptoms of other ailments.  There are many reports of women who have experienced one or more of the symptoms for many months before being diagnosed.  As clichéd as it sounds, we know our bodies the best. If you have the sense something isn’t right then consult a health professional. With ovarian cancer and many other cancers, the earlier it’s diagnosed then the easier it is to treat successfully.  I’ve come to loathe references to ovarian cancer as the “Silent Killer” on the grounds that all too often it’s not diagnosed until it’s well advanced – that makes a great read when your living with a diagnosis but sadly it’s true.

Post-surgery my surgeon advised the cancer could have been growing for between 12 and 18 months based on the size of the tumour and the typical growth rate. I find myself thinking back over that time, living a carefree life not knowing what was growing inside of me.  I start to think what might have contributed and what could I have done differently.  I try to stop those thoughts – it’s unlikely I’ll ever have the answer and anyway it doesn’t change my diagnosis.  There is the possibility that my cancer is caused by genetic factors (5 – 10% of ovarian cancers are caused by a faulty gene), although based on family history I’m not perceived as being at high risk of a gene fault. I’m awaiting genetic testing, primarily to understand any genetic risks facing my younger sister but also because treatment for certain types of cancer and other illnesses can be tailored to gene mutations (genomics). 

Several months on I’m still very cautious about what I Google in relation to cancer. Whenever a cancer-related piece in the news jumps out at me, I can’t help but read it but always give myself a pep talk beforehand about everyone being different. Despite this I find my eyes are frantically scouring the article for any references to survival or mortality rates.  Only recently did I come across an update on drug developments on an ovarian cancer website which referred to the prognosis for ovarian cancer patients as ‘bleak’ – not something I would have handled well in the few weeks post diagnosis.

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