First, a bit of background. I have a liposarcoma in my mesentery. I am 62. I am a retired doctor. They say a little knowledge is a dangerous thing. Believe me, a lot of knowledge is a terrifying thing in this situation.
I had surgery two years ago. It had taken 3 months from my feeling a mass in my abdomen to having surgery. I went from one clinic to the next and one test to the next. At the time of surgery no one had any idea what it was that was being removed. It felt like The Alien. At times I felt like a snake that had swallowed an orange. When I turned over in bed the Alien slid from one side of my body to the other. When surgery came it was a relief. It went smoothly and I went home sore but relieved.
The surgeon said he would ring me with the results which were due around Christmas 2017. As it was the next thing that happened was an appointment arriving in the post. I went online and searched for the doctor’s name. My heart sank when I realised I was booked in the oncology department for the sarcoma clinic. As a clinician I had been on numerous ‘breaking bad news’ workshops. This, definitely, was not a recommended method. Once I got to clinic the diagnosis of sarcoma was confirmed and I was handed the histology report to read. I have read a lot of histology reports in my time and looked at a lot of slides down the microscope. Never in my life had I seen a report for something so wildly out of control as this. And the excision margin was 0.1mm. No safety margin at all. And impossible to improve upon as the tumour was sitting on a major blood vessel.
A further opinion at the Marsden confirmed the diagnosis. Undifferentiated/pleiomorphic liposarcoma. Further treatment was not advised. No options for surgery, no proven benefit from chemo, too difficult a position for radiotherapy. We agreed I would cross my fingers. But I also did some background reading. I realised what I had was very rare. Initially I could only find 12 cases in the medical literature. And one dog. Sadly, the dog got put down. That wasn’t an option I was planning on for myself just yet.
And crossed fingers worked brilliantly. I have had almost two fantastic years. Only three months after my surgery I went skiing. Which was great except I wrecked my knee on the first run of the first day. But a week in a chalet eating cheese and chocolate with a bag of snow (as an icepack) on my knee was very relaxing.
But last month just before my next CT was due I felt as if the Alien was back. A scan confirmed it. I hoped more surgery would give me another couple of great years. But, as the surgeon said, 'it's in a bad place'.
So now the Alien and I face chemotherapy.
