UNCERTAINTY

I returned on Monday evening from the South of France to an unsettling communication from my consultant, proposing to stop my Herceptin because he 'feels I may be cured of my disease and there is no real need' to give me Herceptin now because it can't treat the brain tumour - assuming there is any residual disease up there. Although he'd mentioned coming off treatment to me last year and I was expecting him to bring it up again, the letter threw me into a state of anguish, with the company of stress-reacting side effects - nausea, vomiting, dizziness, coming into play throughout the wee small hours. I spent a pretty nasty, emotional night, fuelled my the awful prospect of a summer spent in clinics and scanning rooms, when I'd planned to go for car and camping trips with my daughter. In the morning, however, I felt more peaceful and went into town to do some shopping. And suddenly a strategy presented itself: postpone the appointment until the summer's end to buy myself more time. I  wrote back to Dr W, indicating that I'd be willing to think about coming off in terms of 'a holiday' from Herceptin, with scans after 6 months or so, when my driving licence is to be reviewed, but stating my concerns about the possibility of recurrence and how I would be monitored if I did come off the drug. After I'd posted the letter and rung his secretary to book an appointment in late August, I felt I'd executed a sort of diplomatic appeasement.

This morning, I showed Dr W's communique  to my treatment nurse and she said I should proceed with caution. Two of her other patients had received a similar notice to quit and had had reacted by 'throwing their toys out of the pram': they are both continuing with their Herceptin. This was reassuring in the sense that it showed me I do have a choice based on precedent.  I had thought I was taking control of the situation by writing to Dr W but now I can't see the wood from the trees.

If anyone reading this has been put in a similar quandary after using Herceptin for seven years, please share your experience by posting to this blog. The Macmillan site has zero information on the forums, so I've requested that they start a new discussion group for Long-term Herceptin Users An American site I found had some exchanges about it, and the stories of recurrence presented a range from two months to four years. I'd done four years on Herceptin when the disease recurred in my brain. I know the brain mets could not be treated by Herceptin, but I am now thinking of the cancer travelling to other parts if I stop the drug because Dr W told me once that it was 'keeping it at bay in the body'. I know it can go to liver, lungs and bone - I've seen plenty of women in the chemo room to whom it had done just that.

The main thing that struck me about this latest development in my treatment plan is the question of security (maintenance on Herceptin) versus uncertainty (surviving without it). I think I can cope with uncertainty, but I am hopeless when it comes to making a decision. Since this decision concerns my survival, I want it to be an informed one so  I'll have to use these next two months to gather my own 'evidence' before I discuss it with Dr W in person.  It is easy to slide under the influence of a consultant, especially one who has saved my life twice.

Why do I feel so unnerved by all this, when he mentioned the word 'cure' ?

Trees at Sete by Cara Loukes