Malcolm Babb, NALC President, speaking at a recent head and neck study day for Liverpool University Radiotherapy students
Liverpool University is one of several that invites NALC to provide laryngectomee speakers to contribute to their relevant courses. These could be in the areas of speech and language therapy or radiotherapy.
The student response to such contributions is invariably very positive. They welcome the opportunity to hear and question patients about their concerns regarding treatment and the problems they experience in what may be a complicated cancer journey.
The recent study day in Liverpool provoked a wide range of questions and some thoughtful concerns expressed by the students.
There are several alternatives for speech after a laryngectomy but none of them comes without disadvantages. Patients’ circumstances vary considerably, not least the extent of the surgery and its consequences for future speech options.
Recently there have been several computer generated speech options proposed that employ recordings of the patient’s speech before larynx removal. One of the latest is reported below
This looks like a useful addition to the options available, though as the article concedes the time and resources needed may be a problem.
At our AGM on Tuesday April 9th approved our Annual Report below.
The charity remains in a strong financial position with income slightly more than expenditure over the year. We have received a donation from the Rotary Club of Clay Cross and held two fundraising events, a hospital stall and a Coffee Morning. Members have made generous donations and contributions to the cost of events and one large donation was made to support the purchase of boogie boards.
Meetings and Membership
As in the previous year our membership has grown. We have held our usual 2 meetings per month, with large attendances at the afternoon meetings.
We were joined by visiting speakers at two of our afternoon meetings. A representative from the East Midlands Cancer Alliance listened to our experiences as part of the process of revising their head and neck pathway. Fiona Robinson, of Severn Healthcare, gave a very informative presentation much appreciated by members. We held our usual Christmas Lunch and Summer Meal and there were trips to the National Memorial Arboretum and to Matlock. Five members attended an International Head and Neck Conference in Nottingham in November.
Work With Hospitals
During the year we had several requests from Chesterfield Royal to meet with patients facing a laryngectomy and we had a stall at their Information Point in June. Having started with Chesterfield Royal we have begun the process of providing boogie boards to QMC Nottingham and Doncaster RI.
Local partners include the Nenna Kind Drop-In Centre, Derbyshire Voluntary Action, Heads2Gether, Derbyshire Cancer Steering Group and more recently the Be Cancer Safe Project.
Our Secretary continues to serve as NALC President. The CompARE study, which we helped get funding, continues to recruit well and is the first head and neck study which delivers immunotherapy to patients in the UK.
Our website currently attracts around 1000 visitors per month. As well as reporting on our local work a news section provides information on head and neck cancer developments and the site is mentioned on many other relevant websites. We thank 34SP for hosting our site for free.
Itzhak Brook, MD, MSc, Professor of Pediatrics and Medicine, Georgetown University School of Medicine has written recently about his experiences in joining a laryngectomee support group.
At the end of the article he states: Helping others and making a difference helps me cope with my own handicap and overcome the hardships I face.
His experiences in many ways mirror my own. After my surgery I eventually returned to work having coped well in my rehabilitation. A few years later, after taking early retirement I finally attended a support group meeting. Like Professor Brook, I gained so much and have continued to benefit from sharing experiences with so many others around the UK.
As reported in a post last month, we are seeing more evidence of the increasing contribution of HPV to incidence of head and neck cancer.
Last year in the UK it was announced that boys, as well as girls, would be vaccinated against HPV. So far the suggestion of a catch-up programme for boys who have missed out has been ignored.
Daily Mail Article
Many parents who wish to protect their sons may find the cost of a private vaccination prohibitive and the decision of the DHSC will cost lives.
I was a typical patient when diagnosed with larynx cancer, though at the younger end of the spectrum being just 51. I had a 30 year pack a day smoking history, to which I attribute my demise.
A recent small-scale study has given an indication of what may be seen in the future. The incidence of head and neck cancer has increased for many years, despite changes in smoking habits. because of the contribution of the human papilloma virus (HPV).
The increase in cases has been accompanied by a change in the age profile, with patients presenting at a much younger age than before. The recent study into glottic cancer revealed many of the younger patients were non-smokers but tissue analysis revealed high-risk strains of HPV.
The research is reported here LINK
Painkillers Increase Survival Chances of Head and Neck Patients
Several UK papers have reported research has recently been published that demonstrated a significant survival benefit for head and neck cancer patients who take common painkillers such as aspirin or ibuprofen (NSAIDs). The Daily Express reported researchers from UC San Francisco have found 5 year survival is increased from 25% to 78% in some patients who take NSAIDs regularly for at least 6 months. Aspirin was the painkiller most commonly taken by patients in the study.
However this benefit is not seen in all head and neck patients but only those with a mutation of a particular gene (PIK3CA) saw the increase in survival prospects. Around one quarter of head and neck patients have this altered gene.
This news may not be as good as it first appears. There are many people who cannot take NSAIDs. The drugs can have some unfortunate side-effects. Aspirin can cause bleeding and others significantly increase risks of stroke and heart attack and raise blood pressure with prolonged use. The proportion of patients who are tested for the gene mutation is uncertain so it may be that very few patients would be aware if taking the painkillers would benefit them.
The research paper is available HERE
The Express article is HERE
One of the reasons why survival statistics for larynx cancer are better than for many other head and neck tumour sites is down to presenting clear symptoms at an early stage. In my case it was hoarseness that led to a speedy hospital check and diagnosis.
Recent evidence indicates there are other things to look for:
The article reporting the research findings is published in the British Journal of General Practice and so will hopefully be widely seen by GPs.
It is important that literature produced to raise awareness of the public about early signs of cancer is updated to reflect this news as well.
The research paper is here BJGP
At last proton beam therapy ( PBT) has made it into the treatment options available to UK cancer patients.
Christies Hospital Proton Beam Therapy
This is tremendous news. The treatment of cancer results in collateral damage to the patient, apart from what we want it to do to the tumour cells. This new therapy minimises such damage.
The primary concern about cancer treatment will be for its curative success. A second concern, for head and neck patients , will be the permanent devastating effects that surgery, chemotherapy and radiotherapy can have on basic functions such as speech, swallowing. and nutrition. PBT is far superior to radiotherapy in this respect.
However, it is expensive and for many years it will only be available at a small number of centres across the country. How high will the needs of head and neck patients be on the priority list for deciding who receives this treatment?
The second edition of The Swallows patient book is out now
It provides useful information and patient stories to help along the head and neck cancer journey.