Like several members of HNChelp, Shrenik had a laryngectomy many years ago. He is now devoting much energy to raising awareness and providing support and inspiration to other cancer patients. I had the pleasure of meeting Shrenik and his wife last year. During a visit, from India, to the UK they attended some NALC meetings and made many friends.
Shrenik shares his story and some inspiring messages in a recent video.
In treating cancer successfully time is a vital factor. We know that in the UK late presentation is a significant problem, with patients delaying consulting a GP and reporting to A&E with advanced cancer.
The NHS faces massive challenges at the moment with both funding and recruitment which make it difficult to meet its targets. Recent statistics indicate growing problems in cancer treatment.
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Patient groups can help encourage early presentation by raising awareness and supporting local Be Cancer Aware campaigns
Chris Curtis became involved with The Swallows, based in Blackpool some years ago. In 2016 he organised a patient conference in Liverpool. It has now become a two day event, with one day for professionals and another for patients and carers.
This year the event is taking place in Nottingham, in November. There is an impressive list of speakers and it provides a great opportunity for head and neck patients in the North Midlands to both share their views and hear of the experiences of others.
I can recall a conference organised by the former North Trent Cancer Network Consumer Research Panel in 2012 which focused on the present and future of radiotherapy. It was clear that the demand was growing significantly and that a second site delivering RT was needed in the locality. Meadowhall or Doncaster were cited as possible locations. Early in 2017 it was reported that plans to deliver RT at Doncaster were being shelved for financial reasons.
Recently, The Swallows head and neck group have drawn attention to a petition seeking to ensure sufficient funding is provided for the delivery of RT across the UK.
The lack of resources devoted to RT result in delays in treatment and also patients having to travel large distances to obtain life-saving treatment. This is a petition that deserves our support.
More information is available from Action Radiotherapy , who have organised the petition.
Today, July 23rd the Government has decided to implement the JCVI recommendation
On Wednesday, the committee responsible for advising about vaccination programmes, the JCVI, changed its mind about extending HPV jabs to boys as well as girls.
From our perspective the work is not finished. Aside from the uncertainty about the response of the Government to the JCVI’s recommendation and its implementation, potential problems lie ahead in ensuring a high take up of the vaccination. Already there are groups and publications campaigning against the vaccination, even for girls. Hence we feel there is still much work for HPV Action and its members to do.
It looks likely that the argument to extend HPV vaccinations to boys has been won, according to the Daily Mail
The article states:
The Government’s Joint Committee on Vaccination and Immunisation (JCVI) had previously concluded it was ‘overwhelmingly’ unlikely that vaccinating boys would be cost-effective. Its conclusions were based in part on a flawed computer model that wrongly assumed HPV caused relatively few cancers in men. But earlier this month the committee accepted new evidence that HPV causes many more cancers in men than previously thought. In particular it causes up to five times as many mouth and throat cancers as had been estimated.
Last August, NALC responded to the JCVI, following their decision not to extend the programme to boys, and made the following comment:
We were surprised by the statistics about oropharyngeal cancer, in particular the low attribution figures of 12.4% (women) and 24.7% (men). Very much larger % are indicated in the Data for Head and Neck Oncology Report 10, published in 2015 by NHS England. It reported that over 70% of the OPSCC patients tested were HPV positive.
Now that they appear to have accepted the arguments of HPV Action and all parts of the head and neck community let’s hope there is a speedy implementation of the programme.
On Thursday we organised a second visit to the National Memorial Arboretum. Since our first trip there were many new memorials to see. Perhaps the most moving was the one from Sapper Support, a charity focused on PTSD, with the sculpture shown above.
Our enjoyment of the day was enhanced by the plentiful sights of nature with terns flying over the River Tame, the nesting coots and Great-Crested Grebes, demoiselle damsel flies in abundance and the Poppy Field in full bloom.
Previously, on Monday, we had a stand at Chesterfield Royal Hospital, with the dual aim of raising awareness of the early signs of head and neck cancer and fundraising for our group. As always there were many interesting conversations.
NICE has now published its updated head and neck cancer guideline. The update was prompted by Professor Hisham Mehanna’s research study PET-NECK. This study investigated the potential of monitoring patients using FDG PET-CT scans to assess lymph node involvement rather than carrying out an automatic neck dissection.
Professor Mehanna and his team deserve congratulations on their practice-changing study which spare patients from unnecessary surgery.
NALC, as it has done for every NICE committee on head and neck cancer, provided the lay members of the committee.
ACCORDING TO THE BBC on 3/6/18:
About 70% of women with the most common form of early stage breast cancer can be spared the “agony of chemotherapy”, researchers say.
It follows trials of a genetic test that analyses the danger of a tumour.
Cancer doctors said the findings would change practice in UK clinics on Monday, and meant women in this group could be treated safely with just surgery and hormone therapy.
As a matter of urgency, research is needed to find similar hormone treatment for patients with cancer at other sites, including head and neck, and if they will have similar benefits.