back to reality and where do we go from here?

After all the excitement of the extended birthday weekend, it's back to reality with a bump today.  


Poor Jack is suffering badly with the after effects of yesterday's half marathon run to raise money for Cancer Research. However, in spite of the very limited amount of training he managed to fit in in the lead up to the race, he still managed to finish in 1 hour 41 minutes (not far off a personal best) and well within the top 20% of runners, according to the unofficial timings posted today.  Still waiting for news of how much money he raised....


We are both getting  somewhat anxious about this week's hospital appointment, when we will find out what Leo, the cancer, has been up to these last three months.  Although we promised ourselves that we would go armed with a list of questions about treatment options, we still haven't sat down together to prepare.  I think we've been putting it off because it means facing up to the reality of Steve's situation, which is a very sobering thought after such an enjoyable weekend. Perhaps the best way for me to organize my thoughts on each of the options we need to discuss is to think aloud in the blog.  If you want to know more about my understanding of the treatment options, read on. If not, come back on Thursday for news of what happens at the hospital.


The bottom line is that, at present, there is no known cure for mesothelioma;  treatments are aimed at extending and improving quality of life.  All the research we have come across so far seems to indicate that the most effective way of improving survival rates is tri-modal therapy - a combination of surgery, radiation and chemotherapy. Today, I'm going through the surgery option....


There are two surgical approaches: extrapleural pneumonectomy (EPP), which is the complete removal of the affected lung, the pleura, diaphragm and covering of the heart (pericardium).  It goes without saying that this is a major operation: two weeks in hospital then 6-8 weeks to recover. Steve recalls his Oxford doctor saying that some people never really get over the operation.  Indeed, 5-10% patients die during or just after the operation.  It seems that's one of the major reasons the Oxford team don't favour this option. 


In any event, the operation isn't suitable for everyone. The patient must be fit enough to walk up two flights of stairs without getting breathless (no problem there for Steve) and the meso must be at an early stage - not have spread into the lymph node or any other areas outside the affected lung. When last assessed, Leo was in one lung.  However, the only way to tell if the lymph node is affected (as far as I know) is by an invasive procedure that itself carries risks. The Oxford team don't think these risks are worth it.


After all that, there is no guarantee that the operation will remove all the cancer cells for the simple reason that the tumour is diffuse rather than a self-contained lump.  And microscopic asbestos fibres can still be left behind in the body to start the process all over again.  More reasons why the Oxford team don't favour this approach.  However, studies in USA and Australia have found that this type surgery can improve survival rates and it is used more widely in other parts of the UK, including St Barts and by the University Hospitals Leicester, which is a centre of excellence for mesothelioma.  The reasons for this may be something we ought to probe in more detail at the appointment.   


The other surgical option is a pleurectomy/decortation (PD), which can help control symptoms caused by the build up of fluid in the lung and can help relieve chest pain. Although a major operation, it can be done by keyhole surgery leaving three small wounds each about a 2 cm long. These provide the surgeon access to take away as much of the meso as possible by removing the the outside covering of the affected lung (the pleura) on one side of the chest only. It means a hospital stay of a week or so, then another 4-6 weeks to recover. 


When last assessed, Steve did not have any fluid on his lung and he is not suffering with chest pain at present.  Unless or until that changes, there doesn't seem to be much point pursuing this option at present. 


However, an article published in the journal of the European Association for Cardio-Thorasic Surgery reports on a study which reviewed three decades worth of surgical experience. This study found that the longest survival rates (a median of 26 months) were observed in patients who underwent PD, followed by both chemotherapy and radiotherapy, regardless of whether the disease was advanced or patients surgically less fit.  Given a choice between EPP and DP, the latter is would therefore appear to the preferred option.  


According to another study published in the medical journal Lung Cancer (December 2009) the overall median survival rate for patients who under went DP, followed by chemo and radiotherapy, was 30 months compared to 18 months in the general meso population. Which appears to confirm the benefits of the tri-modal approach.


The statistics make horrible reading for someone who is fast approaching nine months since diagnosis, so you can understand why we are getting a bit twitchy. However, we remind ourselves that the median survival rate statistics take no account of age, fitness and general state of health, type of mesothelioma (there's more than one!) or stage reached when diagnosed. Can't be ignored, but ought not to be be applied crudely to an individual.  


Tomorrow's blog will be about radiotherapy and much shorter - I can almost hear you heave a sigh of relief!