Unicorn blood

When Jen started first-line chemotherapy just on two years ago, one of the drugs was a bright red substance (in liquid form) known as epirubicin. I was curiously reminded of a scene from the first Harry Potter book, when Harry sees a dark figure in the Forbidden Forest drinking the blood of a slain unicorn

Only one who nothing to lose, and everything to gain, would commit such a crime. The blood of a unicorn will keep you alive, even if you are an inch from death, but at a terrible price. You have slain something pure and defenceless to save yourself and you will have but a half life, a cursed life, from the moment the blood touches your lips.

From then I thought of chemo drugs as 'unicorn blood'. The immediate side-effects for Jen were very unpleasant, especially the nausea, vomiting, constipation and tiredness. With the second-line paclitaxel, she had the progressive neuropathy in fingers and toes. This latter drug actually costs thousands of dollars per month, which we fortunately didn't have to pay within the public health system.

But more seriously still, these kind of chemo treatments carry a small risk of cardiac failure, around 1 percent. In most other situations that would be a crazy risk to take, but here Jen's median life expectancy was less than 18 months. The chemo drugs had perhaps a 70% chance of working, and might then give us some extra months. It didn't seem a difficult choice to make, and indeed I'd estimate that Jen did buy herself four or five months because of the effectiveness of her second-line chemo treatment. Here at least one is balancing the risk of two things of the same kind.

Last month I read an article in the paper about a new book by a Melbourne oncologist, which discussed the different choices that people might make for treatment. An elderly person might forego late-stage treatments and accept that they might die sooner. A woman with children might say "Every day is another day with my kids. I'll take whatever you've got". That was Jen's attitude. It seems strong and defiant, but the choice is never that simple. Jen had a few times towards the end of her five months of chemo when she didn't think she could do it anymore and face the growing side effects. If there's one place I'd acknowledge genuine bravery as being a factor in cancer treatment, it would be there.

Jen's choice to have radiotherapy after second-line chemo was a more complex one. On the one hand the primary tumour could continue to grow and cause serious problems. On the other hand the radiotherapy itself could affect Jen's quality of life. It was at this point very difficult to get good estimates of the risks, even from the specialists, which was very frustrating. Some doctors thought one shouldn't have treatment to avoid a problem that hadn't yet happened. As you'll know if you're followed this blog for a while, Jen's choice led to serious burns from radiotherapy that put her out of action for 2-3 weeks. In between high doses of pain killers and frequent changes of dressings, she couldn't even be that 'present' for the boys.

Such choices between uncertain outcomes of different kinds are most difficult e.g. life expectancy vs quality of life. The best mathematics one can muster doesn't address the key question: what value does one put on each outcome? In a small way it resembles the way economists try to express everything in terms of dollars, so they can compare outcomes in a common way. I don't think we human beings are very good at these choices.

An even tougher choice faces women who have a family history of breast cancer, or who carry one of the known breast cancer genetic mutations: should they only have regular checkups, or should they have surgery to avoid breast cancer altogether? Surgery has an immediate cost in pain and recovery, but it increases their chances of seeing their children grow up to be adults, something Jen has lost. Jen's sister has just had a double mastectomy, and is recovering really well - thank you, God - so she's made her choice. But the nature of these decisions is that everyone balances the outcomes and the risks differently. The website pink hope http://www.pinkhope.org.au/ is valuable if you're facing that issue.