The story so far and the case of the missing report

[JohnK]

My wife was diagnosed with liver metastases (secondary liver cancer) in June 2011. She was told it was stage 4 (terminal). Her original brush with Cancer was with bowel/colon cancer in 2006. She had a resection (part of her bowel taken out) and we were told they had got all of it and it was unlikely to reappear. She had annual colonoscopy checkups just to make sure. In 2008 a lump was found in one of her breasts. She had a lumpectomy and a lymph node removed and Chemo and Radiation treatment followed. She lost all her hair. This was really awful for her. One morning I found her in floods of tears in the bathroom cutting her hair off with electric clippers she had secretly bought. The sight of clumps of hair on her pillow horrified her. It had fallen out at night. But the Chemo and Rad seemed to work and her hair grew back. Again we were told because it had been caught early, that it was unlikely to reappear and that she should be okay. The advice was far too sanguine. It was when she went for her annual colonoscopy in May 2011 that alarm bells started to ring again. She had a violent reaction to drinking the prep they give her. Her GP also noticed she was retaining fluid and sent her for an X-ray which revealed an enlarged liver. She was referred back to a medical oncologist at Canberra Hospital who had been seeing her every 6 months or so. An urgent CT scan and blood tests revealed the worst: stage 4 Liver Cancer and her liver functions were dropping. Her oncologist wanted to admit her that day but there were no beds available in the oncology ward. We ended up going private in order to get immediate treatment. There was initial confusion over whether the primary cancer was breast (which is more virulent) or bowel/colon. They were going to start the treatment with the assumption it was breast but at the last moment the biopsy came back indicating Bowel Cancer as the primary. Treatment was delayed for a day when they got in the right chemo drugs from interstate. Those two weeks were the worst of my life as my wife fought the combined effects of the cancer, chemo, low resistance levels and a failing liver. She survived but it was a close run thing as she drifted in and out of consciousness punctuated by hallucinations (a failing liver plays havoc with electrolyte levels on the blood I discovered later) and very high temperatures. Chemo proper started soon after she had recovered. She was on a three weekly cycle and the CEA tumor markers showed a steady decline for 6 months. The side effects were pretty awful however with violent sweating in the days after Chemo and slowly developing neuropathy in her hands and feet. The worst thing however was that the dying liver tumors gave rise to regular bouts of infection (at least this was the eventual diagnosis) that would necessitate a week-long stay in hospital on an antibiotic drip. My wife’s general health improved slowly however, so much so she was able to return to work part-time by last September. This had a real positive effect on her and up until last December she was in better spirits and enjoying better health than at anytime since May 2011. Then in December 2011 (just in time to ruin Christmas) we learnt the tumor markers had risen. The chemo was coming to an end anyway and in January there was a discussion about switching to one of three new treatments (Folfiri + Avastin, Folfiri + Centuxumab, or if she was suitable Sirtex Spheres). The advice was to go with the first and hold the SIR Spheres in reserve. That is what my wife decided to do. At the same time my wife’s oncologist order a new CT scan. More about that scan later. The Folfiri has not worked. It knocked around her white blood cells (resistance to infection) so much that each cycle had to be delayed by a week and the tumor markers, after showing an initial decline, started to rise dramatically. On Monday this week the decision was made to stop the chemo (she was too anemic anyway) and to have an angiogram and MAA scan to see if she is suitable for the SIR Spheres treatment. As part of the assessment process I had to gather together copies of my wife’s two most recent CT scans (one from Jan 2012 and another requested on Monday this week). On Thursday she had the angiogram and MAA scan and I took the discs of the two CT scans along for the specialist to look at. After reviewing the material and doing the angiogram (but before the MAA) the specialist ‘s whole attitude seemed to change. He seemed much more reserved and cautious about whether my wife was a suitable candidate for the SIR Spheres. We are still waiting on a decision but as we left I was given back the CT scan discs and the initial report on the angiogram. The envelope with the discs was now unsealed and being a naturally curious person I looked at the printed reports that were with the discs. Perhaps it was a mistake. I was horrified by what I learnt. The Jan 2012 CT scan report, which we have never seen and has never been discussed with us, noted that the liver tumors had increased in size. Some of them are over 10cm x 8cm. But the worst comment was that there were 5cm nodules in both lungs and that they were likely to be cancers. This was complete news to me. The CT she had on Monday confirmed the January report and said that the sizes were if anything larger. The angiogram report simply said tumors filled 80% of one side of the liver and 60% of the other. How could the tumors have become so big so quickly? I will make sure my wife does not see these reports. The question however is why weren’t the dire nature of the findings of the Jan 2012 CT scan conveyed to us in some shape or form? The answer I think is because the place of my wife‘s Chemo treatment was shifted from Canberra Hospital to Calvary Hospital at the time of the January 2012 CT scan. I suspect the report is sitting in her old file at Canberra Hospital. I say this because I remember her oncologist asking at a recent consultation whether my wife had had a CT scan recently. The oncologist was searching through the file at the time. I now suspect she was looking for that report and it was not there. Perhaps knowing what was in the January 2012 report wouldn’t have made any difference to the decision to start the Folfiri treatment back in January. But one thing is for sure: whoever was responsible for getting all the relevant information together on my wife’s records needed to be more on the ball. We are now waiting to hear what the decision is about the SIR spheres.

[SILLY]

I have heard so many stories of such mix-ups. There is no excuse if double checks are done . By now systems ought to be in place to overcome human error. It's bad enough dealing with illness without dealing with mistakes which should noy occur. All the best coping with your wife's illness.

[purpleangels]

Hey there! Can I suggest you get in contact with Professor David Morris at St George hospital in Sydney. He is the GREATEST!! And a 'liver man'...... My husband has a rare cancer and Prof has been THE BEST, MOST supportive and smart man we have come across on this journey..... PA

[JohnK]

Thanks purple angels and SILLY for your kind advice and words. Well we have a decision about the SIR Spheres and it is not good. We had a meeting with my wife’s oncologist this morning and were told the told tests she had last week indicated she would not be a suitable candidate for the SIR Spheres treatment (too much leakage to the healthy parts of her liver). It was a difficult conversation. Somehow I was expecting this outcome remembering how the specialist’s whole manner changed after the tests last week. We were told they would go ahead if my wife wanted to (they are clearly running out of options) but the strong advice was against it. A strong woman my wife and although clearly upset by the news (she had been hoping/expecting the treatment would go ahead) she understood it was far too risky to proceed. Goodbye SIR Spheres. What do we do now? The oncologist is clearly concerned about liver failure and the last LFT is not good. We were not told in so many words but the implication was that my wife was approaching so sort of tipping point. Completely stopping treatment was mentioned. My wife said she was not at that stage yet and was not yet ready to give up. Try another form of Chemo (it will be the third)? The problem with this is that her white blood cell-count (WCC) is so low that they are hesitant to start again. Apparently there is an expensive drug that can lift the WCC but it is not on the PBS and costs $1000 a dose. My wife’s oncologist is going to see if she can get it as part of a trial. Gawd it is awful when apart from everything else you have to worry about the cost of treatment and/or depend on charity. As soon as my wife’s WCC is up they will start the new Chemo (didn’t take notes this time and cannot remember its name). It has some risks (don’t they all) and nasty side effects (my wife knows only too well about that) but what else can we do. Fingers crossed. When we got home there was a phone call from my wife’s sister who lives interstate. She is going to fly up to visit on Easter Sunday. That is nice, lifted both my wife’s and my mood for the moment. And I baked her a cheese soufflé for dinner (eggs and cheese being among the few things she enjoys eating now). Only my second ever so soufflé and it turned out well if I say so myself. (Tried to attach a photo but it didn't work).