Jacqui's Story

March 6, 2018

In April 2016 I had ovarian cancer. It was an incidental finding. This is my story.

It was found when I had a hysterectomy and removal of one ovary for what had appeared to be a haemorrhagic ovarian cyst. They are associated with endometriosis. I had never had any symptoms of endometriosis until I started to experience heavy, frequent and prolonged periods at age 48.

I put it down to being peri menopausal at first. But it persisted. I was bleeding heavily for 6-8 weeks at a time, and flooding with any vigorous movement. I became very iron deficient and felt as if I was wading through cement every day. So tired. So I went to my GP thinking I might have fibroids. I had no pain at any stage. I just wanted a hysterectomy and some iron tablets! She referred me for an urgent ultrasound. This was the crucial factor that probably saved my life. She didn’t make assumptions, she made me promise to go privately if I didn’t get an ultrasound appointment in 2 weeks. I did that. I hadn’t even been scheduled in the public system after 2 weeks. The ultrasound showed an ovarian haemorrhagic cyst. No fibroids. So I searched all the reputable academic literature on haemorrhagic ovarian cysts. I’m a Practice Nurse. I know where to go to get the best information. It’s not Dr Google. It’s Pub Med and the Cochrane Group and google scholar. I read that there is a small chance that these cysts are associated with ovarian cancer. But it’s very small. It wouldn’t be me. It was. They found a clear cell carcinoma of the ovary, next to the cyst , thankfully still encapsulated within the ovary, but just beginning to emerge. If I hadn’t paid for that scan my story might be very different.

For 3 weeks I could get no answers from anyone. Clear cell carcinoma is a rare, aggressive form of ovarian cancer and it is chemo resistant. It is so rare that no one was willing to give me any specific information. I live in a rural area. The hospital is an hour away, the nearest tertiary hospital is 4 hours away. I came up against a brick wall. I had to wait for the next multidisciplinary meeting where they would discuss my case over a teleconference. That took 3 weeks. I did my own research. It was very inconclusive. There was so little information on clear cell carcinoma because it’s so rare. It’s not studied on it’s own. I read a lot of studies about advanced ovarian cancer because that’s what’s been studied the most. I just wanted to know where I stood. Nobody would tell me. On reflection I’m pretty sure that’s because no one knew. But it was so hard waiting for an answer.

Finally they scored me as a stage 1. I was to have extensive restaging surgery to remove the remaining ovary, Fallopian tube, appendix, omentum, lymph nodes and have a peritoneal washout. Then they would check it all for tumour cells. Still I could get no specific information about the risks and benefits of surgery; what overseas best practice was, because no one I spoke to knew. The most helpful advice I had was from the gynaecological oncology specialist nurse who could advise me what to expect regarding post op complications. So I did my own research again, and came up with a whole lot of questions and no one to answer them. I wrote them down and had 5 minutes just before I went to theatre to ask the surgeon. It was the first time I had ever met him. He answered all my questions, but I had no time to process it before walking into theatre and thinking I would just have to trust them.

The no chemo thing really bothered me. The studies I had read involving high grade ovarian tumours all suggested they had protocols where chemo is offered as an option. None mentioned clear cell carcinoma specifically, but clear cell carcinoma is a high grade tumour. I had questions. I needed to talk to an oncologist. They declined to give me a referral. I had a stage 1a chemo resistant tumour , completely removed. End of story as far as the surgical team were concerned. But the literature was telling me different. I needed to see an oncologist. In the end I had a complete meltdown at the surgeon, my pile of academic articles in my hands. He accused me of being hysterical and random googling . I showed him the printouts. I told him they were all published articles from Medical literature. I got my referral. 

The oncologist was completely reassuring. She went through the literature with me and we talked about which overseas protocols New Zealand oncologists follow and she said if she thought I would get the slightest benefit from chemo she would give it to me in a flash. I trusted her. It felt like such a relief to trust someone’s opinion. She had listened and taken me seriously.

Next month I complete my 2 years of close surveillance. I’m clear. This part of my life is almost gone. I know how lucky I am to have had the insider knowledge to navigate the system. To anyone who is at the beginning of this, here is what it distilled down to for me. Never assume. Always ask questions. Ask to be referred straight away to the gynaecological specialist nurse at the hospital where your surgery will take place. She will be the best source of information. Push as hard as you can to speak to the surgeon. The resourcing is so bad in gynaecological oncology that this may not happen unless you insist. And number 1 is pay to have your initial ultrasound quickly. It could make all the difference.

Unfortunately if you have few financial resources, live rurally, belong to a demographic that has poorer health outcomes in general, are not offered any kind of support ( I was offered none at all), you’re probably going to find this stuff completely overwhelming and just too hard. But just remember, get your referral to the specialist nurse straight away. They can help you navigate the whole thing.

Kia Kaha.

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