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Sadie's Story: Germ Cell Ovarian Cancer

May 2023, I was laying on a beach soaking up the sun when I noticed my lower tummy was hard and swollen. Putting it down to something I ate, I carried on as normal for a few days.

I knew I had a dermoid cyst (I'd had a scan a year earlier) so I booked in for an emergency ultrasound scan a few days later. By this time I had a 14cm mass on my left ovary and was referred for an MRI. Two days later I was admitted to hospital with excruciating pain, unable to urinate or keep any food or liquids down.

A further scan revealed that the mass had grown a further 5cm in 4 days... now 19cm! I looked 6 months pregnant! I was told that the only thing that grows this quickly is usually cancerous. I refused to believe that, I was only 33! However, 2 days later I was informed by the doctor that they thought I had a germ cell tumour and that if I had both ovaries removed I wouldn't be able to have HRT and would immediately go into surgical menopause. I chose to go ahead and had an abdominal laparotomy, removal of both ovaries and both fallopian tubes.

By the time of my operation my tumour was the size of a honeydew melon! The reason it was so big was that it had bled internally. Hopeful that it was now all removed, I could go about normal life again. I was told 3 weeks post op that I had a grade 1a Germ Cell Immature Teratoma, and due to the rarity of my cancer my case was discussed at the national germ cell MDT meeting and a decision was made for me to undergo 3 cycles of BEP chemotherapy.

In August 2023 I began BEP chemo, the regime was that each cycle was 21 days. I'd have chemo on days 1-5, 8 and 15. I am currently in cycle 2. I shaved my hair prior to treatment and have now braved the bald.

Thankfully my blood cancer markers are all looking normal, my tumour markers have fallen from 3349 to 2! I will need to undergo a full hysterectomy once chemotherapy is over but for now I am so grateful that I will once again get to do normal life. Never did I think cancer would affect me so young, and if I'm honest it probably still hasn't quite sunk in.

The biggest shock for me is that there are no routine tests for ovarian cancer, I have always had smears/ STI checks etc but none of them would determine any issue with ovarian function. My advice to anyone would be to always listen to your body!

You can ask for specific blood tests and ultrasound scans. I knew there was something not quite right, but never in a million years did I think it would be cancer.


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