In a few weeks time I shall have my 18th cancer birthday – a coming of age. I have had cancer for over 25% of my life (just). Although some experiences which cancer patients face have passed me by there are many which remain strong in memory. Some are confined to sarcoma, so I am something of a specialist.
Last week I had my latest check-up – all clear once again. It is hard to explain the sense of relief this brings. Those who do not know what it is to live under seemingly constant threat cannot imagine the tension and anxiety that dominates the days before a check-up. My last treatment is now three and a half years ago (thoracic metastectomy). It took time to recover and get going again, and then I was hit by back problems. Now I have diabetes and other niggling issues to address, so its not an easy downhill run.
I talked about this check-up anxiety (often known as scanxiety) with Dr Mike Leahy, my consultant. Mike has looked after me for twelve years, has managed recurrent diagnoses, helped and advised on many issues, but has never had to treat me. He is a medical oncologist and his training and scientific knowledge primarily concern drugs to treat cancer. Sarcoma throws up some of the most challenging situations, disease like Ewings sarcoma, rare tumours with few (if any) effective treatments, cancers in young people, so the challenges are many. He has been working with members of the team at the Christie Hospital on the anxiety issue as part of a pilot project (Christie PlanBe) looking at the holistic needs of patients with advanced disease. The aim is to develop and teach strategies for self-management and it was heartening to find that some of the strategies I have developed for myself are included and are working for others too.
We also talked about the recent paper in BMJ by retired oncologist Dr Peter Wise and some of the responses he has had. My feeling is that this paper gives an accurate view of what is happening worldwide. The debate comes down to the issue of the patient choice between chemotherapy for advanced cancer and ‘something else’. Too often the ‘something else’ is no treatment, so patients naturally choose chemotherapy. Doctors in healthcare systems which pay them for providing treatment don’t get paid if there is no treatment, so they are quite happy about this decision. In the NHS they get their salary regardless of the decision so there is a trend, and I believe it is a growing trend, to make it clear to patients that symptomatic treatment (sometimes called palliative care) is an appropriate alternative to chemotherapy for advanced disease which is incurable. Painting this in a positive way, while retaining the balance with treatment which patients and families often mistakenly regard as curative, is not easy. There is evidence from studies in Holland that patients and their families cling to false hope. Doctors have to recognise this and find ways of communicating prognosis in a sensitive manner. Patients also want to keep contact with consultants they know when they take this decision, so the role of oncologist as palliative care specialist is evolving.
I have met and worked with many oncologists in my 18 years. Mike has a special place as “my” doctor. That experience builds perspective and he gives an important depth to my understanding. I recognise in oncologists clever people with a high motivation and commitment to patient benefit. Ultimately this is uncompromising in the face of evidence. Importantly the evidence is now steadily tilting the balance away from chemotherapy where the prognosis is poor and oncologists are thinking hard about how they act in this changing environment.