An appeal from Michael Douglas
(actor & producer)
(and a video)
“WORDS” (by F R David)
Have you ever contemplated life without words? Try being ‘speechless’ for five minutes or just an hour! Jot down all the things you would have said in those 60 minutes-you’ll be amazed at the copious amounts of writing! You will also be amazed at how many people are unable to decipher your ‘mouthing’ of simple words-ask for a cup of tea as you normally word have but without sound, try telling someone you are in pain, discuss what you want for dinner, try calling for help! I think you get the point by now folks! It will shock you!
Now imagine going into hospital for a 10 minute investigative ‘mini-op’ to check something inside your throat, but waking up 2 1/2 hours later with ‘scaffolding’ sticking out of the front your neck. Imagine the horror of realizing that suddenly, all of that which you took for granted has gone and has been replaced by a piece of plastic pipe, and worse still, you now rely on this piece of pipe for your breathing! It’s a good job that you are laying down for the shock would ‘flat-pack’ you as the ‘full horror of the thing’ sinks in.
You’ve actually undergone a tracheotomy (and/with the possibility of a full 9-10.5hr laryngectomy to come) because when the surgeons opened up your neck they found your wind pipe & food pipe pushed 2 inches back into your neck, thanks to a virulent tumour (quite possibly a rather gruesomely named ‘squamous cell carcinoma’), so they had no option, otherwise you would have died. That which had caused you discomfort, pain, aggravation, restricted your eating, made even swallowing liquids a chore, cut your breath whilst sleeping, caused much shortness of breath doing even the simplest of tasks was a massive tumour in your throat (imagine forcing a golf ball in there!). It had almost annihilated your larynx and was rapidly setting about annihilating YOU via strangulation – who needs the hangmans noose!. The first operation kept you alive but the second (full laryngectomy) was to kill the tumour-‘lock, stock and two smokin’ lymph nodes!
Welcome to the world of the laryngectomee!
After 12 ½ hours of life saving major surgery, being voiceless doesn’t seem quite so bad after all! You still have your life and if you are lucky enough to have the love of a good woman as well, then the upward learning curve begins immediately!
Many will immediately think , “ oh well, if you smoke, what do you expect!” but, would they be right in that assumption?
***All we need are 50,000 x £1 coins!***
A virus spread during oral sex is now the main cause of throat cancer in people under 50, scientists have warned. Cancers of the mouth and oropharynx – the top of the throat – used to be mainly diagnosed in older men who drink or smoke. But increasingly, it is being seen in younger men.
Prof Maura Gillison of Ohio State University in Columbus said the sexually transmitted HPV was a bigger cause of some oral cancers than tobacco.
Your doctor will refer you to your local hospital, ENT department where they have all the equipment to investigate your troublesome neck & throat. This involves a bit of gentle prodding and poking around but if your ENT specialist can’t ascertain the reason for your referral he/she may well employ a very long, thin camera (nasoendoscope) that is inserted into your nostril and gently positioned in your throat so that a clearer picture can be acquired. This may result in your needing biopsies being taken, which involves a quick theatre ‘knock out’ and small sections of the affected area being taken for analysis.
***All we need are 25,000 x £2 coins!***
Though a marvellous invention the nasoendoscope does not give a very good picture, which of course makes the decision of the cancer specialist a damn sight more difficult when in actual fact ‘all-speed’ is necessary
However, technology advances at a tremendous rate and “Olympus” have designed a fantastic new camera known as the “Rhino-Laryngo Videoscope”, which works on the same principle as the above mentioned but with a massive difference.
Micro technology has seen a special chip inserted into the tiny camera which then transports a brilliantly clear, colour picture onto as big as a 30” TV screen. Previous images were 1/10th of the size so you can imagine just how quickly and how much simpler a diagnosis could now be. Imagine tea candle to soup plate!
*** All we need are 100,000 50p pieces! ***
To the patient it means that after chemo/radiotherapy has finished and the throat has healed somewhat, instead of going ‘through the tunnel’ (in which it is impossible to remain absolutely motionless), your consultant can look for himself with the new “Rhino-Laryngo Videoscope” and see immediately if the area is now tumour free; ie no cancer!
This has massive benefits to not only the patient but to the hospital as well. The patient gets to know the outcome of the chemo/radiotherapy a lot quicker for although the ‘scanner’ can say there are no tumours/growths left it is not a sure fire solution-especially if the tumour is lurking in the trachea or larynx. Decisions for Head & Neck cancer patients are difficult enough at the best of times, so any time delays exacerbate the stress of those decisions. It is always better to know than to be left guessing! It means that patients can move onto a surgical procedure much quicker which not only relieves the stress factor but curtails the growth of the offending tumour. I would surmise that it will also tell the Head & Neck cancer experts whether bothering with radio/chemotherapy is actually worthwhile, therefore giving an option of going straight to surgery.
Secondly it can save the valuable time of your consultant and the cancer specialists, for faster diagnosis means less time spent per patient thus more economical for the hospital concerned. This is not to say that your consultant, or any of the team, will deprive you of necessary time concerning any part of your treatment, merely a fact of life that even though smoking has been on a reductive trend since the 1960’s cancer prevalence has steadily increased in the same period: more patients need to be seen in the same amount of time! For instance, the smoking ban was introduced on July 1st, 2007 yet in that year alone we saw a 4% increase in cancer cases (M) & 3.75% (F) (Office of National Statistics). Therefore it is imperative that specialists are able to diagnose correctly and speedily for all concerned.
***All we need are 250,000 x 20p pieces!***
This new technological breakthrough comes at a price however, but there is never gain without pain! At £50,000 a time the “Rhino-Laryngo Videoscope” is not a cheap investment but it IS the epitome of ‘on the spot diagnosis’. The mere fact that a patients larynx etc can be seen so clearly on such a large screen can only be a bonus as any ‘untoward cells’ will be easily spotted by the experts-thus treatments will be quicker. Imagine looking at a picture on a tea candle and then on a soup plate-that is the difference this superb piece of kit makes.
It is obvious that with us being in the grip of ‘government austerity’, expensive items like this are not exactly on the ‘urgently required’ spending list, but they should be for they can go where only investigative surgery went before. Investigative surgery is expensive, time consuming and can be extremely distressing for the patient (and also includes post operative care), this wonderful innovation can save all of that.
*** All we need are 10,000 x £5 notes! ***
It is not only the ‘spotting’ of cancerous tissue that this machine will perform as skilled speech therapists will be able to assess throat muscles in dysphagic clients (clients with swallowing problems to me & you!) It provides the clinician with accurate information and the client with an informed choice-mega important, as I have found out since November 2010!
Voice therapy can also be trialled, ie, exercises to improve laryngeal movement and therefore improve voice quality. This therapy will also have an impact on improving speech quality if it has been affected.
This assessment is particular useful to perform with clients who have had head and neck cancer, ie, those that have undergone oral and/or oral pharyngeal surgery as they have reduced sensation and can tolerate the assessment better those that haven’t had surgery. This advancement in technology is incredible as it opens up a completely new visual world concerning Head & Neck cancers.
It is a ‘must-have’, simple as that.
Do you know how I know all this, not being of the medical
profession? Because had this technological advance been in use in April 2010, I would not have suffered as I did (no fault of the specialist team I hasten to add) until November of that year when firstly I underwent a life saving tracheotomy and then, two weeks later, a full scale 10 1/2 hr laryngectomy!
This piece of equipment would have shown any consultant that the chemo/radiotherapy had not killed off the tumour which was slowly strangling me. It was almost 7 months before my consultant opened me up to find that said tumour had forced my windpipe & food pipe 2” (two inches) into the back of my neck!
No wonder I was struggling to eat, breathe and even sleep!
No wonder driving the car was becoming a ‘no-no’ as it made me
No wonder a brisk walk to the post box seemed like a marathon all of a sudden!
*** All we need are 5,000 x £10 notes! ***
This new “Rhino-Laryngo Videoscope” would not only havepicked up any abnormalities in my laryngeal area, it would have magnified them onto a 30” screen for all to see. I sometimes wonder how much all those hospital visits and check-ups actually cost the NHS during those horrendous 7 months?
*** All we need is your help! ***
Technology means that the sooner this piece of equipment can be paid for the sooner patients can receive the best treatment possible from their dedicated Head & Neck cancer specialists.
The Leicester Royal Infirmary (Kinmonth Ward) leads the way in plastic reconstructions for cancer patients and for all head, neck & throat cancers therefore patients from all surrounding counties will benefit from the speed & advanced definition this new “Rhino-Laryngo Videoscope” will bring to sufferers of this terrible disease.
Now you have read all the above, please take a moment to watch this marvellous video clip of Jeremy Vine’s throat & voicebox! This is what a laryngoscope can show you!
Please donate whatever you can to this worthy cause for the sooner this piece of equipment is in situ, the sooner ENT patients will get a quicker & clearer diagnosis which will save them much worry and the overstretched hospital staff valuable time, not to mention the NHS considerable expenditure-
it’s a WIN/WIN situation all ways round!
Please note that we now have a “20-20Voice” cancer appeal branch in Wokingham, Berkshire: Isleham & Sutton (nr Ely), Cambridgeshire: Buntingford, Hertfordshire: Loughborough, leicestershire: Are you able or willing to help in some small way where you live? If so, please contact me at email@example.com asap
Please note that we now have a “20-20Voice” cancer appeal branch in Isleham, Cambridgeshire (between Ely & Mildenhall). Are you able or willing to help in some small way where you live? If so, please contact me at firstname.lastname@example.org asap
The Operation & Post Op
This next part is not for the faint hearted, but as with all illnesses there are gorey parts. We have included this video to show you exactly what cancer does to a larynx and when you see it after it has been removed you will see how vital it is that we strive to buy this essential RhinoLaryngoscope for future head & neck cancer sufferers.
This will also enlighten you! (This is truly unbelievable)
HPV-Positive Oropharyngeal Patients Show Overall Higher Survival Rate Compared to HPV-Negative Patients
Tue, Feb 25, 2014
Scottsdale, Ariz., February 20, 2014—A retrospective analysis of oropharyngeal patients with recurrence of disease after primary therapy in the Radiation Therapy Oncology Group (RTOG) studies 0129 or 0522 found that HPV-positive patients had a higher overall survival (OS) rate than HPV-negative patients (at two years post-treatment, 54.6 percent vs. 27.6 percent, respectively), according to research presented today at the 2014 Multidisciplinary Head and Neck Cancer Symposium.
The analysis included 181 patients with stage III-IV oropharyngeal squamous cell carcinoma (OPSCC) with known HPV status (HPV-positive = 105; HPV-negative = 76), and cancer progression that was local, regional and/or distant after completion of primary cisplatin-based chemotherapy and radiation therapy (standard vs. accelerated fractionation (AFX)) in RTOG 0129 or cisplatin-AFX with or without cetuximab in RTOG 0522. Tumor status was determined by a surrogate, p16 immunohistochemistry.
Median time to progression was virtually the same for HPV-positive and HPV-negative patients (8.2 months vs. 7.3 months, respectively). Increased risk of death in univariate analysis was associated with high tumor stage at diagnosis (T4 vs. T2-T3), fewer on-protocol cisplatin cycles (≤1 vs. 2-3) and distant vs. local/regional recurrent (for all, hazard ratios (HRs) >2.0 and p<0.05). Risk of death after disease progression increased by 1 percent per cigarette pack-year at diagnosis. Rates were estimated by Kaplan-Meier method and compared by log-rank. HRs were estimated by Cox proportional hazards models and stratified by treatment protocol.
In addition, HPV-positive and HPV-negative patients who underwent surgery after cancer recurrence also experienced improved OS compared to those who did not undergo surgery. (The effect may have been more pronounced among HPV-positive than HPV-negative patients.) Recurrence is most commonly in the lungs for both groups of patients.
“Our findings demonstrate that HPV-positive OPSCC patients have significantly improved survival after progression of disease when compared with HPV-negative patients. Median survival after disease progression was strikingly longer for HPV-positive than HPV-negative patients,” said lead author Carole Fakhry, MD, MPH, assistant professor in the Department of Otolaryngology Head and Neck Surgery at Johns Hopkins Medicine in Baltimore. “These findings provide us with valuable knowledge to better counsel and treat patients.”
* This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.