My Mediastinal Germ Cell Cancer Story

Sarah, Mediastinal Germ Cell Cancer Survivor

On Monday 1st July 2019 my life radically changed forever.

I woke up struggling to breathe and my face and neck were swollen beyond recognition. I phoned my dad and asked him to drop me at my GP surgery and drop the kids off at school.

I refused to leave the waiting room until I could see a doctor. I knew something was seriously wrong with me.

The GP sent me to A&E, where a chest X-ray revealed a large mass. I was then sent for a CT scan, which showed I almost certainly had some kind of cancer in my mediastinum.

It was pressing on my blood vessels and caused Superior Vena Cava Syndrome. I was admitted and began a high dose of steroids. A biopsy was performed. The doctors thought it was probably lymphoma, perhaps thymoma and a small chance it was a mediastinal germ cell tumour.

It was a germ cell tumour. The biopsy only found germinoma, but later on down the line my bloods would show it was a mixed tumour.

I had one round of Etoposide and Carboplatin chemotherapy, then four rounds of BEP. In January 2020 I had surgery to remove the last bit of the tumour, which had shrunk substantially. Only teratoma remained and it was removed with clear margins.

I was deeply traumatised by chemotherapy and am still living with the damage it has caused my body. I have chemotherapy induced peripheral neuropathy and can no longer walk far or unaided. I’ve slowly learned to write again, but my hands are severely damaged. I also have tinnitus and a very painful keloid sternotomy scar.

I’ve been cancer free for almost three years now. A year before I was taken ill, my mum died of stomach cancer, four months after diagnosis. Our family has been shattered by cancer. I longed for my Mum and I longed to be well enough to look after my own children.

I’ve never been able to find another woman who has had the same cancer as me.