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Pros and Cons of stopping Herceptin treatment
Pros
- 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.
Cons
- 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.)
Conclusions:
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.
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| Sunrise at Llandudno by Anne Morgellyn |
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