On 18thSeptember 2018 I went back to the Royal London for a follow up for my blood clot. While I was there I’d arranged to see the doctors for an update on any biopsy results. And that’s when we were given the news. The biopsy showed that the mass in my spine was a metastatic adenocarcinoma. What that meant in non medical language, was cancer that had spread from somewhere else.
It may sound odd, but I actually felt some relief when I was told. WE HAD AN ANSWER! The months of pain I’d endured would finally come to an end because I’d be able to start treatment.
But of course, it wasn’t quite so straightforward. They didn’t know where the cancer had come from or where else it had spread, and until that was determined they couldn’t treat me. So more tests followed. First a PET scan, where you are injected with radioactive glucose which the cancer cells (and any other fast growing cells) suck up so they light up on a scan. The results of this weren’t great. There were a lot of areas lit up on my body; my spine obviously, my lungs, liver, womb, a patch on my thigh and my neck. Seriously! How was I even functioning?! I understood enough about PET scans to know that all of that may not be cancer and so tried to stay positive that there were other explanations. In fact, the womb was quickly ruled out as normal activity, which was a huge relief. I couldn’t get my head around how this could have been a gynaecological cancer when I’d so recently had a healthy pregnancy and birth.
The lungs and liver however, looked strongly like cancer when matched to the CT scan, and so I had to face the fact that I had a stage iv epithelial cancer in at least three places in my body. As the days ticked on, I became more and more fearful that I was going to be officially diagnosed with Cancer of an Unknown Primary. The problem with such cancers (which actually make up around 3% of diagnosis) is that is hard to make treatment very targeted. For me, it also made it impossible to get my head around WHY I had cancer, a question that must be on the forefront of every cancer patient’s mind.
Luckily though, ten days later we got (what I considered) good news! We met the oncologists at St Bartholomew’s Hospital and after about 30 minutes of discussion, the doctor told us results had come in that day which were strongly suggestive of bowel cancer. I almost cried with joy! I know, sounds odd, but this actually was an answer, and one that made a certain amount of sense to me. Of course it made us immediately start to question the previous diagnosis and why wider tests weren’t done two years before, but I really don’t think going over endless ‘what if’ scenarios is helpful, so I just tried to focus all my energy on the future and what we could do now. The interesting thing was that the scans didn’t show up anything particular in my colon. Had it been removed from there two years ago? Was the original tumour so small that they couldn’t see it? Or had my dietary and lifestyle changes, and gut clearing protocol I’d followed for my IBS actual got rid of the original cancer? We’ll probably never know, but I got some comfort from the fact that it wasn’t all over my colon, and felt I must already be doing some things right.
However, the pressing issue remained my back. In fact, the week before we’d met the neurosurgery team at the Royal London who’d fitted me with a fetching back brace (Oscar thought this was hilarious, his very own robot mum with buttons haha). They wanted to operate to stabilise the spine where the tumour had caused the collapse, and hopefully prevent any/more nerve damage where it was compressing the nerves to my arms/hands. As long as the oncology team were prepared to delay treatment until I was recovered, spinal surgery was planned for 3rdOctober. The oncology team were fully supportive of this as a first step. Whilst I specifically asked not to be given a length of life/ chance of survival prognosis, I did ask them to tell me if they thought I only had a matter of weeks to live, in which case I may act differently. Luckily they confirmed that this was not the assumption, and felt that, from what we knew, the cancer was not so fast growing that we couldn’t hold off on starting treatment until we had my back stabilised. Besides, there were some genetic tests they wanted to run, as if these were positive, treatment may have been quite different (they were negative).