Helen's Speech

It is hard to believe that a year has passed since I last stood here and spoke at this event. The past year has been an absolute eternity for me and I will enlighten you on this shortly.

In Australia, one woman dies of ovarian cancer every 10 hours. A rather frightening statistic I’m sure you would agree – and one that is even more confronting when you are faced with this diagnosis. Ovarian cancer is referred to as the silent killer because it is often found in the late or advanced stage, giving women only a 5-year survival rate. The prognosis is obviously much better for women if it is found early and that is why we need to support the OCRF in their endeavour to find an early detection test and to raise community awareness.

To give you a little background about myself, I am married with two children aged 15 and 11 and I work as a Speech Therapist in a rehabilitation hospital. In August of 2009, I had a radical hysterectomy to remove bilateral ovarian tumours, which were literally the sizes of oranges. To this day I remain quite perplexed that these were not picked up earlier by either my doctor or myself!

I had been experiencing abdominal pain for 12 months prior and my symptoms, which included pain with sex, occasional bloating, fatigue and changes in bladder and bowel habits were perhaps too readily dismissed as being consistent with other common ailments. Some of these included irritable bowel syndrome, anomalies with the menstrual cycle, pre-menopausal signs and even a possible psychological condition.

I believe that most of us are in tune with our bodies and I knew that something was not quite right. I am by no means unique in this regard and I have encountered many women who tell me a similar story about their symptoms being missed because they are so similar to more frequently occurring conditions. Last year I met a 17 year old girl who told me that her doctor had attributed her severe abdominal pain to her period. She was only 15 when she was diagnosed with ovarian cancer. This is why we need to support the efforts of corporate partners like NAB  - to assist the OCRF in finding an early detection test.

At this point in time there is nothing definitive for women to ask for in the way of a test. A trans-vaginal ultrasound will reveal and ovarian pathology but you cannot get a diagnosis until the tumour is removed. A CA-125 blood test is often touted as a detection test for ovarian cancer but in actual fact – it is only a blood marker that is sensitive to changes in the peritoneal area. For instance, this can be elevated in a woman who has endometriosis and it is therefore not a reliable test for ovarian cancer on its own. Surprisingly there are many women who do not understand that a pap smear does not detect ovarian cancer – it does not even look at the ovaries.

I was quite fortunate that when I had my surgery, my tumours were classified as a borderline ovarian cancer. This is a less malignant type of ovarian pathology and I didn’t need to have any further treatment, which was obviously a huge relief. I went back to work and other than dealing with the surgical onset of menopause I got on with my life.

That all changed in January of 2010 – whilst I was on holiday in Phuket – I began once again to experience abdominal pain that was reminiscent of the earlier pain. I have to tell you that I could feel that something was amiss. After a couple of months waiting to see various specialists and a barrage of tests and surgical procedures, I was absolutely devastated to find out that I had a reoccurrence of the tumours. I had multiple nodules on my abdominal wall. When my surgeon showed me a picture of the nodules, I could appreciate why ovarian cancer has often been described as someone throwing a handful of rice into your abdomen. He advised that it would be almost impossible to surgically remove it all. I was told that best practice was to commence an intensive and aggressive course of chemotherapy.

This involved six vey long and seemingly endless cycles of chemo over the last 4 months. I am honestly astounded that I am now standing here on the other side of that horrendous experience. There are times when I questioned my ability to persevere with the treatment. In addition to the standard intravenous chemo – I also had intra-peritoneal chemotherapy – which delivers the chemo directly into the abdominal space via an infuser port attached to my ribs. This was extremely uncomfortable and warranted overnight hospital stays. This chemo causes painful abdominal distension requiring strong pain relief. Also, the chemo directly bathes the nodules and organs in the immediate vicinity and as it is so toxic you need to have 24-hour intravenous hydration to assist the kidneys to flush it out. As you can imagine this was a very challenging time not only for me but also for my family. You are literally facing your own mortality and it doesn’t help to have such poor survival statistics for this disease.

Being a gynaecological cancer; ovarian cancer is so invasive on every possible level; from the diagnostic tests to the surgical management of the disease and the follow up examinations. For women who have not started a family, it is even more devastating because it robs you of the chance to have children. Also, don’t underestimate the impact of a hysterectomy on your identity as a woman regardless of whether you’ve had children or not. I know that I really struggled with this and found the whole menopause issue very confronting.

I was officially chemo free on Father’s Day and am relieved to inform you that the chemotherapy was successful and it appears that the nodules have been eradicated and my markers have returned to normal. Whilst I feel satisfied that I have done all that I can with regards to treatment it is hard not to think of this disease as an ever-present stalker on my back. I am certainly looking forward to re-immersing myself into my life and whilst I know that there are no guarantees I will endeavour not to dwell on that.

To reiterate, it is absolutely imperative that we find an early detection test so that the prognosis and the management of this disease can be improved in order to give women a better survival rate and even a complete cure if found early enough. We need to actively support sponsors of the OCRF, such as the NAB, without whom we would not be able to make inroads into the necessary research. We also need to continue to raise community awareness about this disease.

Finally, we need to remember that ovarian cancer affects everyone, male and female, because without at least one healthy ovary – a child cannot be born.