Friday, 24 August 2012


 I went to the oncology clinic on Wednesday, prepared to defend my case against coming off Herceptin,  waited forty minutes till I was called, then sat with my daughter in the consulting room, waiting for the knock upon the door. It opened to reveal a junior doctor, struggling with the bulging file that holds my notes. She introduced herself, shaking my hand and explaining that she was doing her oncology rotation. She asked if I'd been having any problems.
'No,' I said, 'But...'
'Do you check yourself regularly for lumps?'
'Do you mind if I take a look before you go?'
'Not at all,' I said, unbuttoning my blouse.
'We were expecting to see Dr Wheatley,' Cara weighed in. 'My mother has been really worried about this all summer. She's been really anxious.  She thought she had to stop it....'
'Dr Wheatley wrote to me in June,' I explained. 'He asked  me to make an appointment to see him to talk about coming off Herceptin.'
   The young doctor sought refuge in my notes. 'These are what I've just been looking at -  October last year...tolerating Herceptin well...continuing with treatment...six monthly review in clinic....'
'My last clinic was this February,' I said. 'Then Dr Wheatley wrote to say  that he'd been reviewing my notes and to ask me to bring the October clinic forward so he could talk to me about stopping my treatment. He said he wanted to book me in for some scans before he did anything. I've thought it over,' I added, handing her the list of pros and cons. 'Perhaps you could give him this? It says I don't want to come off Herceptin.'
'He's here,' she said, confused. 'I'll just go and ask him.'
   Five minutes later she returned with the message that I could carry on with Herceptin if I wanted to. It was just a suggestion, that's all.
'Great,' I said. 'So I carry on as before and you'll write me a new script?'
  She looked doubtful but gave me a slip of paper for the receptionist to book an appointment in six months' time.
  Cara and I stood up to go. I wanted to quit while I was ahead. As we opened the door, we saw Dr Wheatley walking down the corridor, his back to us.  He rounded the corner, out of sight.
   'Bizzarre,' I said, 'But I got the outcome I wanted.'

Stonewall at Sete by Cara Loukes

Sunday, 19 August 2012


A Significant Consultation looms this Wednesday, when my consultant will talk to me about coming off Herceptin after seven years but continuing with Tamoxifen and/or starting me on any other chemo concoctions should the disease recur.  These are the notes I drafted to take to the Sunrise Clinic at The Royal Cornwall Hospital, along with my daughter and former partner, who are coming with me for moral support (fingers crossed).

Pros and Cons of stopping Herceptin treatment

  1. Possibility of cure after initial diagnosis (March 2005) - although the advanced disease was then deemed in clinic to be incurable but treatable, endorsing a current statement on the Breast Cancer Care website: 'A diagnosis of secondary breast cancer means that the cancer cannot be cured, although it can be treated and controlled, sometimes for years.' (BCC website 3.8.2012).

      2. Freedom from three-weekly cycle of treatment at home enabling greater social movement and possible reduction of on-going side effects - slow hair regrowth, fatigue, runny nose, nausea, etc though I suspect that these are more likely to be the result of brain tumour treatment.

  1. Likelihood of recurrence: I have found no statistical information about incidence of recurrence in the UK, although a US website (Her2) reports recurrence ranging from four months to four years. My disease returned four years after first diagnosis (March 2005) in the only area undefended by on-going Herceptin treatment - my brain. Since I felt increasingly well in the first four years on Herceptin, I conclude that my physical deterioration since the second diagnosis (brain mets in March 2009) is largely due to the treatment I had over the course of that year: surgery, steroids, radiotherapy, and heavy doses of antibiotics to treat my meningitis. I believe that, had I not been on Herceptin throughout that long and invasive treatment, my weakened physical condition would have slowed down my recovery because Herceptin was still controlling the disease progression in my body. I have seen some reports, suggesting that patients on Herceptin did slightly better when undergoing treatment for a brain tumour.

    2. Need for more scans, clinics, etc after stopping treatment
        Increase in trips to the hospital for scans and tests would impact on my current work and family       commitments, as well as expose me to further radiation.

    3. Negative effects on family/personal life:
    I am a lone parent with responsibility for my daughter, aged 17, who is about to embark on her A level course. Her scholarship at boarding school has enabled her to circumvent the worst of my treatment and side effects over the past seven years, especially the effects of the brain tumour on my general condition; but she is still dependent on me and anxious about my stopping treatment – as, frankly, I am myself. I don't want my anxiety and uncertainty about this change to sabotage her objectives – gap year, university, etc., nor do I want to risk recurrence of the disease which would make me ill again and further reduce my ability to take on work to support myself and my daughter.

    4. Psychological effects: While on Herceptin, I have been able to manage my anxiety very well, largely because of the regular monitoring by the Home Care nurses and three-(now six) monthly hospital clinics. I am very concerned about losing this regular and reassuring contact with clinicians since I have absolutely no confidence in the shambolic care offered to cancer patients in the community. When he finally discharged me after five weeks in hospital, the neurosurgeon told me to 'cut out the middle man' in future since the GP had misdiagnosed my brain tumour as 'labyrintitis', in spite of my Herceptin nurse's requests that he pay me a home visit to see my worsening condition for himself.
 I have no confidence in the local Macmillan service either, although I understand that they are the service for cancer patients in the community, paid for and delegated by GPs in Cornwall. I requested a visit from a Macmillan nurse in Feb 2009, when my condition was worsening, but, like the GP, she too dismissed my concerns, stating that I was 'just a bit depressed'. I have always been able to approach my cancer treatments in a positive spirit with the ongoing support of the home-care nurses and the hospital. Herceptin enables me to live with the idea of survival; stopping it means a return to uncertainty.

Another cause for worry is the locum/Out of Hours service, Serco, which recently failed four of the essential standards of care, including the supervision of GP's joining the service, some of whom had allegedly not completed their medical training ('Cornwall GP service Serco 'not meeting essential standards' (BBC news report 18 July 2012.)


Since the Herceptin has controlled the disease in my body for seven years (pending further scans this autumn), my overall assessment of the proposed change is that I would risk more by coming off the treatment than staying on it at for at least another year so I can continue to support my daughter and hold on to the Home Care nurse support, which reports regularly to the hospital, notes any changes in symptoms/side effects, and thus maintains well-met standards of care. The latent and case-specific nature of my cancer has always implied uncertainty (for me) about a cure, so my preference is for controlling it prophylactically with a drug that has so far enabled my hold on life. I understand that other women with advanced disease have remained on Herceptin after being treated with it for longer than me, which raises still further questions and doubts about my being advised to stop now.


Sunrise at Llandudno by Anne Morgellyn