Emmaline's Blog

News from the CT machine (plus DNA analysis)

I had a CT scan yesterday and the results aren't great (nor are they terrible, I should add). Some aspects of this are a bit speculative, because the 'baseline' scan we were working off was from December. Over the summer I had a break from treatment and went to Mossy Point, and during that time there was the possibility (so we said in advance) that the radiotherapy was still reducing the tumours, and also the possibility (we say in retrospect) that all the tumours were growing and multiplying.

This absolutely does my head in: knowing that I can feel as well as I've felt for several years, blissed out on family and landscape and harmonious togetherness while my tumours grow and multiply. And then I come to chemo, the thing that is so hard to endure, and that is the time when things are at least somewhat more stable, if not actually repairing.  

Anyway. Data. A lesion in my lung has increased from 0.9 x 0.9cm to 2.2 x 2.2cm, other lung tumours have increased slightly and there may or may not be a new one forming at the base of one of my lungs. The main tumour in my liver has increased from 9.5 x 11.1cm to 11.8 x 13.7cm. There's half a dozen other tumours through my abdomen, some in lymph nodes, some next to (and inseperable from) major veins and arteries. There's one entirely new tumour, 2.3 x 2.8cm and a whole list of bumps and blurs that are "suspicious for tumour thrombus ... suspicious for peritoneal spread" etc. There's even a lesion in my kidney that is "suspicious for metastatic involvement", so now I have "worsening of the pulmonary, hepatic, renal metastases and nodal disease", plus a list of new lesions, and sites that are probably bone metastases. 

 Cross-sectional image of the largest liver tumour, looking from my head towards my feet.

Cross-sectional image of the largest liver tumour, looking from my head towards my feet.

Of course it all made me cry, made me furious, made me question the value of this chemo drug. But we do have another source of data, which is a chest x-ray from my first round of chemo this year, and although it's not a perfect comparison (different angle and method) the tumours look distinctly bigger on that x-ray than on the December scan, so medical consensus is that it's likely that a lot of this growth took place over the summer and that it's worth persisting with the chemo for another two rounds, then scanning again. It's important to give the Ifosfomide a proper chance, because it's the last of the frontline treatments. There's a lot of other possible treatments, but they're less likely to work. So two cycles. That's all I'm holding in mind at the moment. 

The next piece of news is that we asked for my original biopsy to be brought to Peter Mac to look for DNA mutations that might be targetted by newer cancer drugs (a 'somatic panel mutation analysis'). They tested for a very long list of known-to-be-meaningful mutations with no results. The only mutation that was detected was at TP53. TP53 was explained to me as a kind of quality assurance gene that checks that things are going well or forces cells into a suicide program if there are problems. It's thought to be hard to have cancer at all without having a mutation to TP53 and no tumour can be targetted by developing a drug particular to TP53 because it is ubiquitous thoughout the body. So my oncologist said that basically the test showed that I have cancer. I'm glad to have done these tests, for thoroughness, and I'm glad that it was possible to have the tests done, even though they are so far out of the ordinary for my kind of sarcoma. It shows that this hospital can pull out some pretty advanced techniques if you ask. But in practical terms, there's no outcome for me.

Note: there's a list of somatic mutations in cancer at: 
http://cancer.sanger.ac.uk/cancergenome/projects/cosmic/