Patient / Carer Stories

My first cancer experience was twenty years ago but, although there have been many improvements in cancer care, patients continue to echo many similar communication issues. I had been told repeatedly there was ‘nothing to worry about’. False reassurances had left me vulnerable: at worst I was expecting an operation for haemorrhoids. So when the diagnosis ‘carcinoma of the anal canal’ was delivered as the surgeon’s opening sentence, it achieved maximum impact. There was no support, no information about sources of support, no written information about my cancer or about the aggressive treatments I was to undergo.

I was told there were three options for treatment, since the cancer had not invaded the muscle. Two days later, without any further tests or examinations, an oncologist told me there were two options for treatment, ‘since it has invaded the muscle’.

Information continued to be ‘tailored’ and drip-fed throughout treatment: questions were answered with questions, half-truths, or evasiveness (shouldn’t be, shouldn’t do…). I was told, ‘we’re not 100% sure the treatment will work’, when I knew my GP had been told my chances of survival were 50/50. Lack of acknowledgement of my true situation left me with unmet needs and severe, unaddressed pain. The fight for truth and open information became more stressful than dealing with cancer. Well-meant paternalism destroyed trust when I most needed it, and the cumulative effect had a lifelong psychological impact.

In contrast, the diagnosis of breast cancer, seven years later, was delivered by a specialist breast surgeon in a thoughtful and considerate manner. I had finally been referred to the breast clinic after finding a lump in my breast 5 months earlier. The results of a clinical examination, mammography, ultrasound and fine-needle aspiration were fed back to me - but only after he had opened the consultation with, ‘I’m afraid the results are not quite as we’d hoped.’ Although I wanted him to give me the diagnosis as quickly as possible, this opening sentence gave my mind a moment to accept the very real possibility that yes, indeed, I did have breast cancer, despite my GP’s late referral, and only then after I had obtained a second opinion. Mammography had shown nothing, but fine needle aspiration had shown ‘something suspicious’. The surgeon could also draw on his experience and take into account my medical record showing a previous cancer, hormone replacement treatment taken for 10 years, my age, 57, and the position of the lump.

The impact of this news was far less than that of the first cancer diagnosis, and not just because I was aware of the possibility, but mostly because of the professional way the news was communicated to me. I felt this doctor had undertaken communication skills training and knew more than clinical expertise was needed to be a good doctor. He knew how to reduce the harm such news might cause.

The positive side of my first cancer experience was that it changed my life: I trained in RSA counselling skills and learned how to support people with cancer and how to deal with their emotions, rather than distance myself - something I felt my doctors at that time were unable to do. I helped start a support group and began speaking out about what needed to change. One thing led to another, I was asked to give presentations, wrote articles in medical journals, worked alongside health professionals in cancer network user partnership groups and in national organisations.

In 2008 my book, Nothing Personal, disturbing undercurrents in cancer was published. I wrote it as a learning tool for health professionals, as well as an aid for patients and carers. Discussion sections throughout look at how each event had made me feel, with suggestions for what needed to change, backed by research references for better practice. In 2008, Macmillan Cancer Support hailed it as ‘a landmark for the patient voice’; in 2009 it was given as a prize by the Royal College of Nursing and was a winner of the Medical Journalists’ Association Open Book Award.

Mitzi Blennerhassett

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