Letting Patients Share in Treatment Decisions

Over the past few years I have had to make three major decisions regarding cancer and a gall bladder condition.

The first was prostate cancer. I had a very high PSA in my mid 40s and after multiple biopsies the cancer was found. I did get patient education material and spent close to a month digging through the internet. The end result was that I decided on surgery, which was my first thought. The tumor ended up being on the lower tip of the prostate, which is why it was so hard to find. That difficulty provided time for the tumor to grow to the point where I also needed radiation.

In this situation, the earlier the cancer was diagnosed the earlier I coiuld have had the surgery and I could have avoided radiation. That would have been lower costs and easier treatments.

The second was a cancer in the parotid gland, where radiation is indicated. Because this is the worst radiation given I decided to have surgery - first to get the cancer out and then to get a better indication of what the problem was. It ended up that I was able to avoid radiation. I also got the cheapest alternative, and the easiest on the patient.

The last problem was less than a month ago. Severe nausea and a trip to the surgeon who previously cared for my wife. Within 20 minutes we had a confirmed diagnosis of a gall bladder stone, a decision to have surgery and the time for the surgery set.

In the three situations only the prostate cancer resulted in a patient pamphlet - and it was the longest to a decision.

What I've learned from my experiences (and my wife's) is that it can be far more informative to get the cancer out and look at it under a microscope. That way you, as a patient, can make a more informed decision.

If you're talking about an old man with prostate cancer then surgery might not be indicated. If you are talking about a woman with breast cancer that has spread too far to address with surgery then it might not be indicated. If, however, you are talking about a patient who has an early cancer and is able to handle the surgery then I believe it should be presented as the option that may provide the best treatment information as well as the one approach that will remove the discovered cancer from tahe body.

On a different tack, as a 70 year old male, I am rather interested in prostate cancer. This is one case where I did make a decision, but quite a different one that suggested in the article, and I believe it is one I should not have had to make.

In the US, men are typically given PSA tests and a lot of prostate cancer is detected. In Europe, they do not give the PSA test unless there is a reason. There are a number of consequences of this policy. One is that men in the US are faced with the decision mentioned above. Another is that there are many more treatments (per 1000 men) in the US than in Europe. What is the result of these two different policies? The mortality rate (please don't mention survival rate which is the wrong statistic in this case) is somewhat better in European countries. In addition, the side affect of the treatment frequently lowers the quality of life for the patient. It seems clear to me that we give PSA test primarily because physicians in the US get paid for treatment, and this is the policy that leads to the most treatments. I have forbidden my doctor to order PSA test for me. This is a decision that should be made by a policy board if we had one, not by each patient.

BTW here are mortality rates for all cancers:

Per 1000 people the US has 321.9, Australia 298.9, Canada 296.4, France 286.1, Austria 280, Sweden 268.2 Finland 255.4, and the UK 253.5.

Well, I sincerely doubt that the vast majority of people are able to make informed decision about complex medical procedures even with aids. I don't consider myself stupid or uneducated (I have a PhD in math), but whenever I discussed such matters with my physicians, I went with their advice. I wouldn't have taken their advice on an algorithm for factoring integers. If I thought they were not competent, I would have switched doctors.