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New therapies may offer better quality of life for laryngectomy patients

This post is prompted by an article, from the Mayo Press, which can be seen here    LINK

Alternatives to a total laryngectomy have been sought for many years. The motive has been to improve future quality of life for patients around speech and swallowing. Chemoradiotherapy preserves the voice but there are other functional issues, not to mention chances of avoiding a recurrence.

NALC has been supporting research and development of alternative strategies. Professor Martin Birchall, of University College London, has been a NALC patron for some years and he took part in the successful larynx transplant surgery on a patient  in the USA in 1998. Since then he worked for some years looking at the use of stem cells for organ regeneration and transplant.

My personal view is that much work remains before there may be a widely available alternative to a traditional  laryngectomy. The current options, as described  in the article, are unproven, expensive and require very specialized facilities.  One option not mentioned in the article is the development of an implantable soft robotic larynx, which is a current focus of Professor Birchall.

New RCSLT Guidance for Laryngectomy

The Royal College of Speech and Language Therapists (RCSLT) has published guidance on head and neck cancer for anyone who would like to find out how speech and language therapists (SLTs) work and help people with head and neck cancer.

SLTs have expertise in assessment, diagnosis, management and rehabilitation of voice, speech and swallowing difficulties resulting from head and neck cancer and its treatment.

The new guidance was developed by a working group of SLTs and covers the symptoms, treatment and the role of the SLT when working with people with head and neck cancer.

 

SLTs can also help patients who have had a total laryngectomy – the removal of the voice box. The RCSLT has published a position paper which sets out the role of SLTS working in this area, alongside a competency framework which reflects the guiding principles in laryngectomy care, to ensure safe and best practice.

Position paper                   LINK

Competency framework     LINK

 

 

The HPV Vaccination Reduces the Incidence of Cancer

The connection between HPV infection and cervical cancer has been known for many years. In 2008 a vaccination programme for girls was introduced to try to reduce infection and subsequent development of cancer. However HPV causes other types of cancer, not least head and neck cancer, which has seen a large increase in incidence in the last decade, attributed to HPV. NALC was a member of HPV Action, which campaigned to extend the vaccination programme to boys, and this was implemented in 2018.

HPV is a factor in the majority of oropharyngeal cancers, but not so much in other head and neck cancer such as laryngeal cancer.

Enough time has passed to look at how successful the HPV jabs have been, has the incidence dropped? A recent research study in Scotland has found strong evidence that the vaccination works very well.

Data for women born between January 1, 1988, and June 5, 1996, were extracted from the Scottish cervical cancer screening system in July 2020 and linked to cancer registry, immunization, and deprivation data. No cases of invasive cancer were recorded in women immunized at 12 or 13 years of age irrespective of the number of doses. If vaccinated later, more doses are needed for the same outcome.

Article Here

These excellent findings pose some important questions.

Cervical cancer presents at a younger age than head and neck, when will it be possible for some research to find if the vaccination has had a similar effect in reducing head and neck cancers?

How well is the HPV vaccination programme in schools going? What % of boys and girls are now receiving the vaccination? Since the Covid pandemic, vaccinations of all types have been subject to negative publicity, especially in social media.

As The Year Comes to an End

We held our usual monthly meetings in 2023, except for April (Easter) and August (summer break) at the Eyre Chapel, with Covid no longer an issue.

As well as supporting our own members we have responded to requests for assistance from Chesterfield Royal Hospital, the Cavendish Cancer Support Centre in Sheffield and various email requests.

Representatives from Severn Healthcare joined us for a couple of meetings. We learned about new laryngectomy prescription items and  there were wide-ranging helpful discussions around member concerns and questions posed to Paula Barnes, Severn’s SLT representative.

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Sadly we lost Rick Colley, a valued member for 6 years, and other members have faced challenging diagnoses. We devote time every meeting for members to raise their own concerns and hear the experiences of others.

We ended the year with the usual Christmas Social and lucky raffle winners are shown below.

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(Click to enlarge photos)

European Head and Neck Cancer Week

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The official head and neck cancer week runs from September 18 -23. The Make Sense Campaign, organised by the European Head and Neck Society, started in 2013.

Head and neck groups mark the week by raising awareness of the early signs of the range of head and neck cancers. Currently many patients present with advanced cancer and this lowers the chances of a cure significantly. Making the symptoms more widely known may help reduce this problem.

(Click to enlarge)

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World Head and Neck Cancer Day JULY 27

HNChelp has always been concerned to raise awareness around head and neck cancer issues.

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There are over 500,000 cases and 200,000 head and neck cancer related deaths globally each year.  With greater awareness of the signs and symptoms to look out for some of these cases are preventable.

The International Federation of Head and Neck Oncology Societies is working hard to showcase the importance of knowing all about these cancers and drawing attention to effective care and control of Head and Neck cancers. Too many head and neck cases are only diagnosed at a late stage which makes treatment and a cure very difficult.  What are the signs to look for?

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(Click to enlarge the poster)

Peer Support

This post has been prompted by two seemingly unconnected events this week.

I saw by chance a laryngectomee that I first met more than ten years ago. He was about to have the operation and I spoke to him at the request of my local hospital. I have been supporting patients in this way for more than 20 years and it is one of the most important things I do. A laryngectomy can be a terrifying prospect which a few will decline, but it is a life-saver. Seeing what it is like on the other side, after surgery, can be a source of strength in deciding to proceed and provide reassurance when it is most needed. It is also  helpful to family members who may be present at some meetings.

The outcome for my friend was not the best. He has no voice as a valve was not an option, due to the nature of the surgery required, and he cannot use an electrolarynx. Additionally, he has swallowing problems and cannot eat a normal diet. Despite all of this he has no regrets about having the operation. He took out his phone and showed me pictures of his grandchildren who he would not have lived to see without the treatment he was given.

The second event was a request to review the proposed new website of the Royal College of Speech and Language Therapists (RCSLT). One section, covering laryngectomy guidelines for the RCSLT, mentioned enabling meetings between patients and those who have previously been on this journey. I cannot overstate how important I feel this is. For the SLT, working under pressure, setting up such a meeting can take much time and effort. The patient may also  have reservations, how hard should the SLT try to convince them of the potential benefits?

For me, the pre-laryngectomy meetings with patients don’t make great demands on my time, the challenge is to respond appropriately to  someone you are meeting for the first time. As my friend demonstrates every time we meet, the meeting for him was of massive significance. Since the publication of Improving Outcomes In Head and Neck Cancer in 2004, the value of such peer support meetings has been widely recognised in peer review measures and cancer strategy documents. Recent events such as the Covid pandemic have made implementation difficult but surely this is now in the past?

 

Listening To Patients

 

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For many years HNChelp have had an excellent relationship with Severn Healthcare. Their representatives have joined our meetings to update members on new prescription items and other products.

Last year we reviewed the range of Romet electrolarynxes, supplied by Severn.  Sadly we felt the devices did not allow speech at a large enough volume. In social situations laryngectomees are constrained by not being able to contend with background noise when trying to speak,

An updated version is now available from Romet and at this month’s meeting members were able to try it out, We were delighted to find the problem had been remedied and the electrolarynx now provided a much larger range of volumes.

Severn Healthcare, and Romet deserve great credit for the value they place on securing patient opinions and acting on them.

Valuable Head and Neck Cancer Survey

Last year saw the formation of a UK Head and Neck Cancer Coalition. Its members include patient support groups, research charities and clinicians’ professional groups.

Amongst its aims is the desire to raise teh profile of head and neck cancer and improve the patient pathway. One if its first acts was to commission a survey of patients and clinicians seeking their opinions on what is happening now. The results are well worth reading.

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Annual Report 2022-3

After an AGM on Tuesday 14 March the Officers were all re-elected. The report below was presented to the meeting:

Covid  We have had a full range of afternoon meetings but with some changes compared to our former pattern. The Eyre Chapel has been used as we are not mixing with the public as we would at The Olde House. Seventeen members have attended during the year. We have had no social meetings in the evenings at the Olde House because of concerns around covid.

The Chairman and Secretary have provided information and support to 7 new patients by means of hospital visits, telephone and email but none of these patients  have chosen to attend group meetings. The website continues to be busy with over 60,000 page views, including our resources pages, during the year.

We have welcomed Severn Healthcare representatives to two meetings. In March they demonstrated a new range of electrolarynxes and a new hands-free speech valve. In October the range of HME adhesives were demonstrated and there was a further lengthy discussion about getting the best from hands-free valves.

At the request of Cavendish Cancer Information Hub Sheffield we have established a working relationship with the Hub. There is a head and neck group in Sheffield but it meets only infrequently in the north of the city, in Hillsborough.

We held our usual Christmas celebration in December. The raffle and donations more than covered the cost of the event.