Date of diagnosis: 23rd May 2016
Age at diagnosis: 46
Country: Australia (Gold Coast)
I am: a wife to Tony and a mother to Jack who is ten. He is a clever, funny little boy who brings us both so much joy every day. We love getting away for day trips exploring in the 4WD and weekends camping on the beach.
I have a job I love working as an office receptionist for a pharmaceutical firm. They have been nothing but extremely accommodating to my needs and time off during treatment.
I am very lucky also to have such a supportive husband, our families, and a wonderful network of friends.
When I was diagnosed I started OvariCare which is a non-profit that provides support packages to women recently diagnosed with ovarian cancer.
Before I was diagnosed with low-grade serous ovarian cancer: I had been feeling unwell for a long time and couldn’t understand why. I was struggling some days just to get through the day. I had very little energy and felt so sluggish, it was depressing. I had been to see a couple of doctors but was told the same thing: watch what you eat, lose weight, reduce your stress, exercise more and increase your fibre.
I had also been feeling full and bloated with some abdominal pain and discomfort, and I was having alternate bouts of diarrhoea and constipation. I was convinced that I had irritable bowel syndrome, or that maybe a food intolerance was causing my symptoms. Nothing was making me feel any better.
The day I was diagnosed: I received a phone call. I had just dropped my 7 year old off to school and was on my way to work. It was my doctor wanting to discuss the results of my recent scan. Later that day they told me I had stage 3C ovarian cancer. The cancer was advanced and had spread to my bowel and stomach and there were some spots on my liver. After my diagnosis things started happening very quickly. I didn’t really have time to fully get my head around the fact that I had cancer, and that I was in for the fight of my life.
My ovarian cancer treatment: At first I had chemotherapy, which shrunk my tumours, then extensive abdominal, and bowel surgery which included a radical hysterectomy to remove the visible cancer and then more chemotherapy after surgery. Just before Christmas 2017 the cancer returned. My tumour tested negative for 170 genetic mutations which ruled out targeted therapies. I had more chemotherapy which did not work and in mid 2018 I developed a blood clot in my lung. I have also tried three different types of hormone inhibitor therapies.
I tried further chemotherapy which was ineffective and in November 2018 faced the difficult decision of a second major surgery.
The surgery took 10 hours and they were able to remove 98% of the cancer. Unfortunately the surgeons had to remove most of my bowel and I was left with an ileostomy bag. This has been quite challenging, making it difficult to maintain weight and I struggle with dehydration.
This February (2019) I received the devastating news that my ovarian cancer had returned very quickly and as well as having more extensive scattered growth throughout my abdominal area, the disease has now spread to my mouth under tongue, breast lymph node and neck.
I have exhausted all traditional treatments and have now learnt, that without further treatment, and at the rate that the disease is spreading, my remaining time could be a matter of months, not years. At this stage though I am very lucky to be on a waiting list for an immunotherapy clinial trial and we are hopeful of a positive outcome.
How your donations would impact me: Research is the only thing that will keep me alive to see my child grow up.
I have come to accept that this disease will never disappear, but I need to get into a clinical trial, to keep on top of this insidious disease, not the other way around.
Jack needs his Mummy and I simply cannot bear the thought of not being here for him.
What I would say to every woman: We all know our own bodies and what is and is not normal for us. If you are not happy with an initial opinion, and your symptoms persist, seek another opinion. Until there is better screening available for Ovarian Cancer, many women will continue to be wrongly diagnosed or be diagnosed at a late stage.
What I would say to another woman with low-grade serous ovarian cancer: I often read other posts and would think how lucky I am to have options. But now I find myself on the other side with limited options and fading hope. The reality of our disease is that most of us will eventually get to the stage where existing treatments fail. Where we become so utterly vulnerable and reliant on research. Do what you can now to support researchers and help them find better answers. Maybe then they’ll have the solutions when you need them.
– Nicole Brown