Being diagnosed with cancer is always a shock, though I must admit I took it pretty well. Maybe because I was already prepared for it as when I researched the symptoms that led me to seek out a specialist, I knew it was either Cancer or Gallstones. I was really hoping for the Gallstones.
I knew I had cancer and that it was very bad as soon as looked at my CT scans which I had done in the morning. By the afternoon my doctor called that he needed to see me straight away. I already knew why. Few days later I had a colonoscopy and a biopsy. For a split second I was greatly relieved when my colorectal surgeon said that the biopsy was negative. Unfortunately he added that he probably got a sample from a benign polyp and he was 99% sure that I had cancer. He sent me for a liver biopsy and recommended an oncologist.
Liver biopsy came back positive for adenocarcinoma, and my first meeting with an oncologist followed. To his credit, he was very honest and said without treatment I had maybe two months to live as my liver already started to fail. I was told I had a fist sized tumour near my appendix, and that the cancer spread to surrounding lymph nodes and a small tumour on the left side of the colon. The biggest problem were the extensive mets in the liver, with perhaps over 70% of the liver mass taken up dozens of tumours of all sizes. The CT scan reminded me of swiss cheese.
The oncologist said that surgery was out of the question at this time and recommended I start palliative chemo straight away and look at possible surgery later. I did not realize at the time what palliative chemo meant. Now I know that its systematic chemo till first line fails, followed by second line and when that fails…. death. The average survival is 16-36 month.
One of the questions I asked whether he cured anyone with stage 4 mcrc. He said NO. I then asked whether he knew of anyone that was cured. Again the answer was NO. At that point I realised that I had to find a different path as without a possible colon and liver resection there was no light at the end of the tunnel. Later I gave the same question to 8 other oncologists, and the answers were always NO and NO.
The first oncologist I saw was running a clinical trial comparing Tivozanib and Avastin. He was good salesman and I was the perfect candidate for the trial. He argued that using tivozanib would leave Avastin as a second option down the track. Tivozanib also had better safety data and phase one trial showed an improved PFS (progression free survival). I was told that the level of care would be better as well with a dedicated nurse following my progress. It sounded good so I agreed to join the trial. I was ignorant at the time, but after I educated myself I pulled out of the trial. This is a long story and will dedicate another post to the topic. The moral of the story is “beware of clinical trials”.
All in all I was decimated. No hope for a cure, 2 months without treatment, 12-36 months with chemo, and I was warned that 10% do not respond to Folfox 6. (What I did not know at the time is I would fall in the 10%, but that too is another story.)
Dealing with oncologists, is a challenge in itself and you really have to take things firmly in your own hands. Do not take their advice as be all and end all. Always question everything, get multiple opinions and push to get what you need done. I will expand on this later.