All.Can Patient Survey

28 Deborah * (United Kingdom) I had random abdominal pain, which the GP thought was a kidney infection. When antibiotics didn’t help, I was referred to gynaecology at my local hospital. They weren’t expecting me when I arrived, and were very rude. I was in so much pain, and they thought I was making it up. The whole experience was horrendous. It took about a month to work out what it was, when I eventually had the right scan. The doctor said, ‘There’s a mass near your kidney. There’s nothing we can do about it now – it’s Friday night. Don’t worry about it. Go home and we’ll be in touch next week.’ He wrote my discharge summary, which obviously the patient isn’t supposed to read. It said I had a 10cm tumour – potential lymphoma. I read that in the car on the way home with my children. That’s how I found out that things were not good. The scan was in July, and I had to wait until the end of November before I had surgery. I have a very aggressive form of cancer and to have to wait so long for surgery was completely unacceptable. It took them three months to get all the scans in order because it was the summer holidays. I had one appointment with my surgeon and the letter was never sent to me. I got a phone call about five days after my diagnosis, asking why I wasn’t at my appointment. The letter arrived three days after the appointment was supposed to happen. At that point, you feel like it is the end of the world. Ten weeks after my surgery, I had another scan. The disease had spread to my bones. They found other tumours, including one in my liver. I had further major surgery. Then I read about a new drug and proactively referred myself to a medical trial. Surgery is the main option for sarcoma, but you get to the stage where they cannot keep operating. I had to demand to see my oncologist. I never met her before that point – maybe if I had met her after my first surgery, my cancer might not have metastasised. Anyway, they were trialling the new drug at a hospital in another city and I asked if she could refer me. It took a while to get onto the trial. I would have started chemo a lot earlier if I had stayed at my first hospital, but it was definitely a good decision. When you have a rare cancer, you’re going to have to travel. It’s just what you do to get the best treatment. I was more than happy to go where I was referred. Patient stories 1 | Swift, accurate and appropriately delivered diagnosis