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.
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HNChelp has always been concerned to raise awareness around head and neck cancer issues.
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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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?
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.
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.
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.
What a year this has been in so many ways! A war in Europe and a cost of living crisis coming after 2 years dominated by the Covid pandemic. Closer to home, NALC has finally run out of funds to sustain paid staff and a London office. The good news is that with its new structure using only volunteers all of its services will continue for the laryngectomee community.
HNChelp has met every month this year, excepting our usual August break, and we finished with a Christmas celebration. Members enjoyed great food, a raffle where everyone got a prize and a Secret Santa. Donations and the raffle more than covered the costs of the event.
We took time to remember a former member, Sandra Curran, who was caregiver to her husband Peter, a laryngectomee. Sandra gave tremendous support, especially to new members joining our group. Sadly she was diagnosed with pancreatic cancer in 2019 and passed away in 2020. Peter has written her story and it is available on the Pancreatic Cancer UK website
Pancreatic cancer is such a difficult cancer to diagnose and Sandra’s story highlights some of the problems that patients encounter in their journey and lessons that need to be learned.
Our October meeting saw a great turnout as we welcomed once again visitors from Severn Healthcare, Paula Barnes and Oliver Davies. They gave an update on the Severn range of prescription items including the latest base-plates.
Much of the time was taken up with the experience of our members of hands-free speech devices. These represent the gold standard in achieving a new voice. They have improved considerably in the past 20 years but some issues remain, including the effects of mucous and coughing on their effectiveness. As always some patients’ anatomy after surgery and things like the pressure reached when using a speech valve can affect their suitability and success.
Perhaps the most important conclusion from the conversation was the need to put in the time and effort needed to learn how to get the best from these hands-free HME devices.
(Professor Vin Paleri)
I can recall when I was told, over twenty years ago, I had cancer of the larynx. After finally getting checked out and having a biopsy I turned up to a clinic to hear the best or worst news. As it happened, it was the worst and I did have cancer of the larynx. I was with the doctor for around 2 minutes and I left the consulting room to await a further appointment when treatment would be discussed. The news was that I had a stage 2 tumour and that radiotherapy was likely to be the appropriate treatment. The news was delivered in a matter of fact way and I heard nothing from the doctor that invited me to share my thoughts or ask questions.
At this time I was reading the book “C because cowards get cancer too”, by John Diamond a journalist who was married to Nigella Lawson. His throat cancer journey did not go well and he died in 2001. In his book he described when he got the worst news of all from his consultant, that his cancer was not curable. “He gave us the news white-faced, nervous and with eyes downcast as if it was something both unsayable and already said”.
In July Channel 4 broadcast a series called Super Surgeons, which featured Professor Vin Paleri, an ENT surgeon at The Royal Marsden Hospital. In the second of three programmes his patient, Peter, had a difficult oral cancer. Several courses of treatment were employed but finally the cancer returned with no viable treatment options left. It was wonderful to see the connection and empathy between Professor Paleri and Peter and his family as his treatment progressed. When the treatment options ran out the conversations were sensitive and extremely moving.
I am sure this part of the care pathway, sharing bad news, has improved since my time. As seen in the programme, Professor Paleri represents the best of the NHS. In the other two programmes in the series, we saw him using robotic surgery to treat a patient reluctant to have a laryngectomy and carrying out a partial laryngectomy on another. I can thoroughly recommend viewing the series of programmes on All4, if you have missed them.
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Our July meeting saw an excellent turnout, though inevitably some were missing due to being on holiday.
As well as catching up with members news there was a very valuable discussion about new laryngectomee products from several manufacturers.
What was clear from our members experiences was that a product that worked well for one did not guarantee that it worked for another. The problem of mucous production was but one that saw a wide variation in individual responses. Being able to mix and match products from the range of manufacturers has always been valuable but it does now seem to be at risk.
We look forward to meeting again in September and have a varied programme of activities and meetings to look forward to.