An ordinary visit to the oncologist

My oncologist is a very nice man. I asked near the beginning of my time as a patient of the Edinburgh Cancer Clinic always to be seen by him, rather than by either of his colleagues because he seemed more sympathetic and sensitive, more able to listen to me as a human being, less inclined see me as a disease. And call me old fashioned, but I like to have one physician keeping an overview of my case, I like to think that one doctor will more easily understand the specificity of my disease, and so better judge what the  medical options might be, under every turn in the progression of the disease. Nevertheless he is trapped in a very complex system, forced to do his best under restrictive circumstances. And underlying everything he says, there is never anything other than absolute certainty that the disease will progress, that the function of medical science is to manage the disease until such time as it is no longer manageable, after which palliation will be the only option. From the moment it was first diagnosed in September 2012, my cancer has always been malignant and aggressive, not something that will ever be cured. Any ideas I have harboured to be able to make the disease go away have been regarded with everything from polite skepticism to disdainful ridicule. I try not to be intimidated by the reductive determinism of medical science, and my oncologist makes this a little easier.

We met this morning, together with my partner, where we talked through the current state of the disease and the next medical options. It was a long and difficult conversation that revealed not much we did not already know. As I have mentioned in another post, the PSA value is rising again in spite of the influence of the medication. It is a slight rise, but it is possibly the first indication that the cancer has reached the next stage in the expected progression, that it is becoming resistant to the medication. It is changing from locally advanced metastatic prostate cancer to hormone resistant metastatic prostate cancer. There are of course new drugs available that I should now take. Firstly I should continue with the medication to which the cancer appears now to becoming resistant, in combination with another which I have had before, and to which the cancer became resistant over two years ago, and with a new one, which will work in a different way from the other two. Secondly there are assorted chemotherapies further down the line.

I listened carefully and asked questions sufficient for me to be able to understand why he believes what he believes, why the medical options are such as they are. Despite the fact that he is a nice man, he is treating me in the only way that the system will allow. His job is to treat my disease using drugs approved by an intimate elision of scientific methodology and dubious business ethics, within an underfunded institution of social health care that can do nothing other than categorise and reduce the experience of disease into a few variables that can be easily manipulated and managed.

Other issues were discussed, amongst which how to attenuate what medical science euphemistically calls the “side effects” – a phrase not unlike “collateral damage”  – of the medication, which are considerable. In this context, he mentioned a particular drug which sometimes works, but sometimes not, but nobody knows why or how it does work, when it does. In this context too, he said that it was a matter of trying stuff out to see if it works and to use what seems to help best. In this context also, assorted herbal remedies and tinctures that may or may not help were mentioned. Sage, black kohosh, dandelion root. For some men they work, for others not. From here, it was a short step to discussing whether or not any similarly herbal or “alternative” remedy might help in actually keeping the cancer at bay, some substance not produced by a multinational pharmaceutical conglomerate, that is not a combination of isolated patented single molecules, that is not first and foremost product, but rather a naturally occurring substance comprising many different elements and compounds. This part of the conversation was more difficult. It produced more heat than light and he had to think of his next patient, so he brought it to a close.

Just to be clear. What I am being offered is a combination of highly synthesised chemicals. These will temporarily keep at bay a disease that is progressing and that will continue to do so despite continuing medication. The medication will prolong my life and then I will die. And yet no research is being conducted, nor is it likely to be conducted into whether or not naturally occurring, multi-molecular substances, working in combination with each other, might be efficacious in the treatment of disease. All anecdotes about certain oils and tinctures are just that. Anecdotes. They do not meet the scrupulous criteria required by the health service, nobody within the system is going to fund any more systematic research which might produce more convincing evidence. The onus is on those who believe that something else might work to undertake or to persuade others to undertake research.

The profile of my disease is well documented now. The level of PSA in my blood doubles about every six weeks. I had it measured again today. Eight weeks ago it was 3.9, which means I would expect it to be about 9 now. Etc. If I were now to start taking any kind of “alternative” substance, and if there were to be any deviation from this six week doubling time, I wonder if there would then be reason to believe that the substance in question is having any kind of effect on the progression of the disease?

As far as I am concerned this is an open question. It remains to be seen. Even if medical science is not prepared to address this question, I am. It is my life. I would rather try stuff out to see what works, on the assumption that there is no inevitability to the trajectory of this disease. After all, what do I have to lose? And it is exactly what medical science does. The only difference is the source of the stuff being tried out.

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