Memorandum submitted by the National Association
of Laryngectomee Clubs
Head and neck cancer has a huge impact on quality
of life. Although advances in surgical technique are improving
functional outcomes, mortality has not improved for decades.
NALC is aware that Laryngeal Cancer is seen
by many as a lifestyle disease, and is concerned that research
indicates little funding being available for head and neck as
a whole, this would indicate that head and neck cancer has a "low
medical and cultural status in society". Progress in reducing
the numbers of head and neck cancer cases and improving quality
of life for survivors is surely dependent on research into all
possible causes of laryngeal cancer. Clearly, a large amount of
research into new more effective therapies is required.
NALC is concerned: that alongside the high profile
anti-smoking information, research based information is not available
into other probable causes. NALC feels that information directed
to primary care practitioners, and the general public, should
contain that evidence to ensure that improved rates of early diagnosis
occur. NALC's sincere hope is that head and neck research will
be given equity with the more high profile cancers, leading directly
to preventative measures directed at reducing laryngeal cancer
numbers, or better outcomes as the result of earlier diagnosis.
NALC feels that clearer indications of the numbers
involved should be sought with laryngeal cancer once in every
13 years, however, recent research would indicate that the overall
picture of numbers and thus demographic mapping is a good deal
less clear. It would also seem logical to patients to include
other Primary Care practitioners in any awareness campaign. NALC
also feels that statistical evidence and mapping of cases could
if used effectively to pinpoint areas of concern. Research based
on these findings could then be a positive base on which to base
case reduction proposals.
NALC some years ago leafleted all GP practices
in the United Kingdom with the green leaflet, to enable GP's to
have the then latest information on symptoms. Annex A lists symptoms
considered important today.
NALC feels that it is urgent that research is
undertaken to ascertain whether patients in categories listed
in Annex B could be considered at high risk, and whether screening
should be introduced for patients from these categories.
Treatment in the United Kingdom, following early
diagnosis mainly focuses on radiotherapy, whilst NALC is aware
of the benefits achieved by pin pointed targeting of tumours and
the use of chemotherapy, we would welcome alternative treatments
especially those ensuring larynx preservation.
Recently Professor Hirano was able to demonstrate
to the Voice 2000 conference, the benefits that lasers used in
conjunction with cold knife surgery may provide, especially were
the cancer to return. At present further treatment of carcinomas
in an already irradiated area is not possible.
Laryngeal Cancer is a survivable cancer, 90
year old Laryngectomees are not unknown, with more research into
the causes, and the use of that knowledge to aid prevention, together
with the introduction of more advanced techniques in treatment
it should be possible to achieve not only a noticeable reduction
in the number of cases but perhaps more importantly a vastly enhanced
quality of life for survivors.
Were additional resources to be made available
for:
more advanced "alternative means
of communications"; and
a greater public awareness of neck
breather resuscitation, Laryngectomees lives would be vastly improved.
NALC is grateful for the opportunity afforded
by the committee to provide evidence of cancer treatment for Laryngeal
Cancer in the United Kingdom, from the patients perspective.
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