Memories of Max - A Father's Story

Chapter 14 - Cancer Echoes

Paula, Sara, and I were haunted by cancer echoes after Max died. All three of us had symptoms which gave us real reasons to suspect that we too might have cancer. We had lived through false alarms, we were aware of the pitfalls and yet despite this, in each of these cases we had reasons to expect the worst. There is always the retreat into the fact that this must be a psychological reaction to Max's death. This was not the case. These fears were not based on vague symptoms, they were based on lumps and blood and very real physical evidence. Two of us were admitted to hospital for tests. This happened long ago, but given the same symptoms again, I would still have the same concerns.

Let me go back to the revelation that Max was a cancer prone child. During Max's treatment Sara and I discussed the incidence of family histories of cancer with one of the consultants to see if there was any possibility of hereditary genetic involvement.

In the course of the discussion she told us that it was possible to test for an abnormality in a tumour suppression gene called p53. This gene acts within the body to prevent cells from multiplying uncontrollably. If this gene becomes damaged then one of the many brakes for runaway cell growth has been removed and can lead to the formation of cancer. This test might confirm one of the known mechanisms which gives rise to cancer prone children.

The consultant then told us that she had no intention of testing for this gene. I was shocked. One of the unanswerable questions which every parent has is "Why my child?." Here we were being told of a possible answer to this question and now it was being denied. She gently and carefully explained this paradox.

"There are enormous implications in the results of this test which you have probably never even considered. First let me outline the ethical and moral implications. If the test proves positive, you and we are in no better position regarding Max's well being."

"It will not change his treatment and it will not improve his chance of survival. All that will have been achieved is the realisation of yet another piece in the complex jigsaw puzzle of Max's cancer. It is just information and the only benefit will be to satisfy your curiosity. "

"If we had a treatment which could target this gene then that would be another matter. A treatment may arise in the next ten years given the rapid advances being made in genetics, but at present there is none and thus no benefit to be gained from performing the test. That is the view I give you as a doctor treating your child."

"There are however further repercussions if the test proves positive. If the test is positive then there is a chance that one or both of you as parents could be carrying the same defective gene. If this were the case then this would mean that theoretically you too have a high chance of developing cancer before you reach older age. But this is the chance of developing cancer. It is not certainty. What is gained with that information? The immediate and very human reaction to a positive test for Max would be for both of you to undergo the test. If that then proved positive for either of you then you would view it as an apparent death sentence. Again this is just information. Nothing would have materially changed, but your outlook on life would be severely damaged. And to what purpose?"

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