last modified 16th April 2013
take you to the current diary entry - click
have set up this very basic personal home page, firstly to chronologically
record the initial diagnosis and lengthy treatment, secondly to inform/educate
family, friends and fellow tonsil cancer patients, of specifically, tonsil
cancer and the effects of the relevant treatment.
being personally diagnosed with cancer is a serious issue, for myself and
everybody around me, I make no apologies if I offend anybody with some of
the humour and gory detail I have injected into this page, it's part of my
healing process which helps me and the people around me keep positive. So
you've been warned!
page will be updated whenever I have new information to add, which hopefully
should be on a regular basis. Initially the page's format will be very basic
and over the next couple of months will become more detailed with further
links, photos and extra typical web page functionality. I got the idea after
viewing a couple of American websites belonging to other tonsil cancer patients
and the sites seemed effective.
and diary of events leading up to diagnosis
51 years old
Buildings Surveyor, Insurance Claim Surveyor and Build Project Manager
Marital Status: Married with three sons
of residence: Suffolk - UK
24th Aug '03 - I was in my garden, kneeling down with one arm deep
down a blocked drain trying to clear the blockage when I had a sensation at
the back of the throat which made me gag. I started to cough to relieve the
sensation then noticed blood trickling from the mouth. I rushed inside to
have a look in the mirror and saw a lump in the tonsil area. Initially I thought
it was another bout of tonsillitis and had ruptured it when I coughed. Usually
when I have had tonsillitis in the past, fever and aches have accompanied
it, but this time no pain or sign was evident, so I decided to see a doctor
straight-away. I initially went to Worthing Hospital but left there when informed
I had to wait up to three hours to see a doctor. I then made my way to the
local 'Doctors on call' surgery. The Doctor there said he thought it was an
'angry' tonsil, prescribed some penicillin and told me to visit my own doctor
in a weeks time if the symptoms did not subside.
28th Aug '03 - During dinner with family, I started to experience slight
difficulty breathing and talking, also beginning to get agitated and concerned
that this was not usually associated with tonsillitis. I needed to get a second
opinion fast as it felt that the tonsil had definitely grown since Sunday.
was taken to hospital at approx. 20:00 where straight-away a couple of junior
doctors examined the tonsil. One of the doctors had obviously skipped his
patient 'sensitivity' module of his training, as his comment, after seeing
the tonsil was, "my god it's an alien". They then, I'm glad to say, sent me
straight away to be examined by a more senior doctor ( Dr Street) who strongly
advised that I stay in overnight as a precaution, in-case it started to block
the airway. In the morning I was examined by DR Lui of the Ear, Nose and Throat
Department who informed me that the growth was not normal and was not something
he had seen in his textbooks (trust me to be different).
of actual tumour
wanted to take a biopsy but suggested the whole left tonsil be removed, to
be on the safe side and this would be sent away to a number of labs for investigation.
He did inform me then that they did not like to perform tonsillectomy on people
over the age of twenty five due to a risk of haemorrhaging as the blood vessels
in that area had matured and would take longer to heal, but in my case it
had to be done.
3rd Sept '03 - 0730 Arrived at Worthing Hospital for left tonsillectomy.
Wheeled into Op Theatre 12:00. One minute I was awake in the pre-op room and
the next minute I woke up in the post Op room in absolute agony with a female
nurse close to my face saying " Would you like some morphine? " , I nearly
commented "Your not that ugly" but the pain got the better of me. I had ten
shots of it and just when I starting to enjoy myself the injections stopped.
The nurse informed me that the Op took a little longer than expected as I
haemorrhaged and the wound required to be sutured with stitches.
in overnight where I coughed lots of congealed blood (I did warn you) and
then was discharged the next morning, with an appointment to see Mr Harries
ENT Specialist in two weeks for the results. At 0915 my wife arrived at the
front of the hospital and picked up the sorry state of an individual carrying
a carrier bag full of pain killers and anti-inflammatories.
15th Sept '03 - Appointment with Mr Harries, ENT consultant. My
wife Lee and I entered his clinic and nothing could have prepared us for what
was to happen next. His very first words after the intro's were "There is
no easy way in saying this but the pathology results indicate you have cancer".
He then informed us that the results showed cancer to be present at the periphery
of the tonsil and there was a high chance that some residue was left at the
back of the throat. The tumour had measured 5cm x 3cm x 1.5cm. Prior to our
visit that day Mr Harries had already arranged for me to meet with the Clinical
Oncologist Dr Deutsch at The Sussex County Hospital in two days time for a
further scan of the area and discuss treatment.
17th Sept '03 - 1030 appointment with Dr Deutsch and five others at the
Sussex County Cancer Centre. After a quick investigation , he informed me
I definitely had Cancer of the Tonsil then recommended a total body CT scan
to be carried out in approx. two to three weeks time to see whether it had
originated from somewhere else or sent secondary seeds to somewhere else in
the body. After I informed him that I was part of a private medical insurance
scheme he then managed to arrange a scan for that Saturday. (Amazing what
can happen when you grease someone's palm with silver.) An x-ray of my jaw
and teeth was taken as some back teeth may have to be removed prior to Radiotherapy.
20th Sept '03 - 1130 CT scan at Nuffield Brighton. Upon my arrival
was given a litre of squash to drink over a 45 minute period which had a dye
in it. During the scan another dye was injected into my arm automatically
whilst the scan was in operation. The scan took approximately twenty minutes
in a mobile CT scanner on back of large lorry. Bursting for a pee when it
Results and Required Treatment
25th Sept '03 - 09:10 Appointment with Dr Deutsch at the Nuffield
Points from meeting:
term effects - Key Points:
Radiotherapy will destroy one Saliva gland. Remaining one will try and compensate.
· Saliva will be sticky.
All food will taste very unusual.
Throat will get very sore during third week of treatment and reduce approx.
three weeks after treatment finishes.
Skin outside where ray is directed will become red and burned
Hair at both side of neck (nape) will be lost, but should grow back later
Go deaf in one ear due to fluid build up (now I have an excuse). Grommet
may have to be fitted to release fluid.
wife asked me whether I could put on the special mask at some point and sing
the songs from 'Phantom of the Opera', I said I'll do what she likes so longs
as she doesn't mind me commenting that her cooking now tastes like sh..!
Term effects - Key Points
Beard hair not growing in area of radiation
Slight stiffness of jaw
Dryness in mouth
20-30% chance of the same cancer appearing in lymph gland or another part
of the body.
10% chance of completely separate new cancer appearing in another part of
There is an overall lifetime risk of getting another cancer in the throat
All these risks can be reduced by cutting out alcohol and smoking.
Tonsil Cancer mostly appears to people who drink and/or smoke
I will have to be checked every two months for the first two years after
If there is no reoccurrence during the first two years then there is a very
low chance of it reappearing
25th Sept '03 - 16:45 Appointment with Mr
Keith Altman, Consultant Oral and Maxillofacial Surgeon Informed that
three teeth will definitely have to be removed. A lower jaw wisdom and an
adjacent tooth that had major root canal work done on it some years ago and
an upper jaw wisdom tooth.
informed my general dentist later that day, who almost broke down in tears
when he heard somebody was going to ruin his craftsmanship, then I nearly
broke down when I remembered how much I paid for the root canal work. The
teeth extraction has now been quickly arranged for Saturday 27th Sept under
general anaesthetic. The wounds will have to heal in time before the Radiotherapy
27th Sept '03 - 0930 Tooth extraction at Gatwick Park Hospital.
Had left upper and lower jaw wisdom teeth extracted and molar which had previous
'expensive' root canal work. Left side of mouth will feel numb for the next
- My wife Lee picked me up, carrying yet another bag of antibiotics and painkillers,
commenting that I looked pale and not very well!
30th Sept '03 - 1450 First fitting of Immobilisation Mask. The
mask is created to ensure the head and shoulders are always exactly in the
same position so the radiotherapy can hit the right spot everytime. The radiotherapy
machine has a two millimetre accuracy range.
Photo Gallery for picture of mask
3rd Oct '03 - 0830 Meeting with Macmillan nurse and Mask Technicians.
First met with Pat Sheilds - Radiographer Counselor, who went through the
treatment and answered numerous questions I was firing at her. Pat handled
my more sensitive questions, extremely professionally and she was extremely
- Met with Mask team to ensure there was no shrinkage of the mask.
- Unexpectedly I was called into Dr Deutsch's office who informed me, amongst
other things, that due to my cancer being Grade 3 and there was a slight risk
to the cancer spreading, he recommended that he included a precautionary course
of Chemotherapy. Initially my mouth dropped but he assured me that the chemotherapy
used was a tolerable strength and would only be administered once a week.
Nausea may be experienced on the day of the injection.
least they are trying to cover all eventualities.
- Sent to Simulation Room where I had to lay down, have the mask fitted and
marked up for the points of radiotherapy. This took half an hour and when
the mask was taken off, my face looked like a teabag as it was covered with
hole impressions from the mask and it took 15-20 mins to get clear vision
back as the mask had been pressing on my eyes.
7th Oct '03 - 1230 Radiography Planning Session. The last planning
session was carried out with a CT scan to ensure that all the marks on the
immobilisation mask were lined up accurately with the head and throat sites
that had to be radiated.
Oct '03 - 0900 Final Check Plan for
Radiotherapy and Info Session with Chemotherapy nurse. Had the final check
for the Radiotherapy. Mask had shrunk by approx 1mm which was a little uncomfortable,
temporarily blurring my vision due to the mask pressing down on my eyes and
my face looking like a tea-bag. All the radiotherapy marks still lined up
and I am now ready for the Radiotherapy next week, although I was not ready
for the next forty minute information session with the chemo nurse.
for the next six weeks I will be injected with a powerful antisickness drug,
then intravenously administered Cisplatin (chemo) for one hour, then again
by intravenous, given 3 litres of a saline solution for two hours whilst I
am being radiated. The purpose of Cisplatin is to sensitise the cancer cells
to radiation and to attack any other cancer cells that may be in the body.
The purpose of the saline solution is to pump up the kidneys to encourage
them to flush out the heavy metal based components of Cisplatin.
The drug attacks
any fast forming cells such as cancer cells but unfortunately it will attack
other essential fast forming cells such as blood cells and blood count has
to be carefully monitored. This is called Bone Marrow
Depression. A blood count will have to be taken the day before the chemo
is administered to ensure that the blood's three main types of cells, red,
white and platelet are at adequate levels before the next dose is given.
The nurse informed
me that tiredness will certainly set in due to the synchronous Chemotherapy
and Radiotherapy for the Throat and Neck Cancer as both therapies will be
attacking numerous cells. I was also advised to be very cautious in not developing
any infections as my body has enough to cope with in fighting the disease,
and catching an infection could put an even greater strain on the body. The
nurse also added that even after the radiotherapy course has finished, the
radiation is still at work in the body for up to a few months after, and side
effects will disappear gradually. It is also possible for the sore skin on
the site of the radiation to become more severe around two weeks after the
radiation treatment has finished.
I am starting
to get a little apprehensive after being told of all the possible side effects
, although bearing all this in mind, everyone reacts differently to chemotherapy
and most people complete the treatment successfully without major complications.
here if you would like a more detailed, simplistic description on Bone
Marrow Depression, it's effects, measures to relieve symptoms and what to
look out for.
Oct '03 - 1st week of treatment completed. Five doses of Radiotherapy
and one dose of Cisplatin administered. After first dose of Radiotherapy,
I noticed a slight change in taste, didn't matter what I ate it all tasted
perculiar, but it resumed back to normal the following day. Mask was a little
uncomfortable which had to be opened up slightly as it had shrunk slightly
(or face had got fatter). On the third day I started to notice tenderness
around the rear left side of the jaw bone.
On Friday arrived
for Chemotherapy at 0930 but there was a delay of 1.5 hours due to drug still
in Pharmacy. I was first injected with a strong anti-sickness drug which had
the most perculiar temporary side effect of giving my backside pins and needles.
Next I was administered with the Cisplatin for one hour then a saline solution
was flushed through for the next two hours to flush the kidneys. Whilst the
saline solution was being administered I had to wheel along the intravenous
machine to the Radiotherapy room for my course of radiation. It was a long
day as my wife Lee and I were in the hospital for nearly six hours.
Apart from being
a little tired in the evening after the first chemo course and feeling alittle
nauseous in the middle of the night. The week went relatively well. It is
wishful thinking on my part that this plain sailing would carry on till the
end of the treatment, but being realistic I feel this will not be the case.
My wife and I were amazed and shocked to see how many people were being administered
chemo, the room being full with approx eight people being administerd at a
time and most being cycled every hour. One of the nurses informed us that
The Sussex Cancer Center is planning to expand due to increasing cancer patients.
Cancer is definately becoming an epidemic.
In the Chemo
room I got into a debate with the nurses on which CD album we should have
on the HiFi system. They wanted some Jazz Funk, Matt Monro or Perry Como.
I won in the end chosing 'Urethra Franklin'!
Nov '03 - 2nd week of treatment completed. Five doses of Radiotherapy
and one dose of Cisplatin administered. Taste buds now definately changing
and mouth getting sore on the left side. Consultant viewed the soreness and
informed me that it showed that the Radiotherapy was working. Starting to
hate Fridays now, with a passion, due to the three hour chemo treatment although
thinking positively, I'm a third of the way through the treatment.
Nov '03 - 3rd week of treatment completed. Half way through treatment.
Taste buds now totally dead and an infection has set in on left side of the
throat. I just know within the next week or so I will have to be on a diet
of 'Complan'. I have also lost a large tooth filling on the other side of
the jaw, so together with the three teeth that were extracted at the begining
I'm just left with my 'Central Eating System'!
I have tried
numerous different dishes to see if I my taste buds will pick up anything,
but no joy. It's the most perculiar, depressing experience I have ever gone
through. I can cope with the combined Chemo and Radiotherapy on most days
but not having any sense of taste has got to be the worst for me at present.
I used to live to eat, because I enjoyed my food so much, but I now eat to
My wife bought
me a T-Bone Steak this week to cheer me up a bit and to see if I could taste
it but when I said I could not taste a thing, she said she would never cook
me a steak again and would cook me from now on, dog turds, as I would not
be able to tell the difference.
On most days
outside the cancer clinic, there are numerous cancer patients carrying their
Chemo intravenous stands with them and having a cigarette at the same time.
Re-arranging deck chairs on the Titannic comes to mind, ie; what is the point.
I was going to take a photo for my gallery but thought the better of it.
Nov '03 - 4th week of treatment completed. Two weeks to go. Not having
any sense of taste is driving me ( and my wife) mad at present and the soreness
in the throat is getting more severe. Having to gargle with soluable painkillers
before eating anything. Starting to lose weight, which is something the doctors
warned me against as it could jeopardise the treatment. Not easy when you
can't eat properly. Doctors will be monitoring weight loss closely as chemo
dosages may have to be altered, compensating for the loss.
how you take all your senses for granted and when you temporarily lose one,
you dreadfully miss it, but it is also interesting to note that the other
senses compensate for the loss. My sense of smell is especially strong but
the problem I seem to have at present with this is that my nose says 'that
food smells gorgeous, you must eat it' but my mouth shouts back 'get that
sh.. out of here!.
It reminds me
of the internal fight between Gollum and his alter ego Smeegle in the film
Lord of the Rings - Twin Towers.
I was informed
on Friday that my taste buds should start to come back approx. two weeks after
my treatment has finished which means I should be able to taste Christmas
lunch. I really hope so! although the throat will be very sore still. I can
put up with that.
Nov '03 - 5th week of treatment completed. One week to go. Throat getting
very sore, inside and out. Everytime I sneeze or cough it feels as though
part of my throat wants to fly out with it. Taste buds still dead. Looking
forward to end of next week.
Dec '03 - 6th and final week of treatment completed. Due to severe side
effects setting in and the effects of the Radiotherapy will reach it's peak
in approx 10 days time, the consultant decided not to give me the last dose
of Chemo. Yippee!!!. He also said that the treatment seemed to be working,
the odds were in my favour and the prognosis looked good. My saliva is getting
very sticky which is a sign that the salive gland on my left side is on it's
last legs and the glands on the other side will start to compensate. My beard
hair on the left side has also ceased to grow. Not a big issue, actually abit
of a bonus as the power on my battery powered razor is lasting twice as long
as it did before. The neck area on the outside has got very sore, which is
now being covered with special gels and bandages to stop skin from splitting.
To balance out
all the different stress levels, we're actually moving house from Sussex to
Suffolk next week! A bonus is, I have been reffered, for my follow on treatment
to a Head and Neck Tumour Specialist at Addenbrook's Hospital in Cambridge
which is close to our new home and the Hospital has close links to Cambridge
University. I will be going to Addenbrooke's every three months for check
ups for the first two years. Will keep you posted.
Dec '03 - First follow on check/consultation post treatment. Saw two Head
and Neck specialists at Cambridge who checked the back of my throat with an
endoscope. Everything looked fine and as expected. There was an ulcer from
the radiotherapy treatment but this was normal and should heal in time. They
were pleased with my progress and in the first year would see me every month.
They also informed me that the tonsil cancer responds well to the treatment
that I recieved. I was feeling alittle more positive as the last few weeks
I was getting a little depressed especially that the taste buds were not showing
signs of returning in time for Christmas. If the cancer does not appear within
the next two years then there is little chance of it appearing after that.
I will be monitored for the next five years when I should, hopefully, be given
the all clear.
Dec '03 - Taste buds starting to return and hoping to have them mostly
back in time for New Year's day lunch.
Now that the
six weeks treatment is complete, it is important that I add the following:
tone of my website appears that I have been positive and taken this all in
my stride, it has not always been the case. This has been a very difficult
time for me and my family because during the course of my treatment, generally
I have been a grumpy old bastard!
There have been
times that I have been difficult, disrespectful to family members and argumentative.
The treatment has been very difficult, leaving me feeling sick and tired,
never knowing whether the chemo and/or radiotherapy was working. If I can
give any advice it is to find a 'buddy' to support you through the difficult
times and an outlet to express your feelings other than your nearest and dearest.
I would have been absolutely evil and extremely depressed if I was on my own.
My wife was my
'buddy' and I extremely appreciated the support she gave me as she went through
difficult times as well. This website helped me put my feelings down. I could
have written poetry kept a diary, gone to support groups etc but having some
sort of outlet is important.
I will update
the site shortly with new photos, tips on what to eat during the treatments
and as of when important milestones have been reached.
Hope you all
have great New Year. I intend to put the last twelve months behind me.
Taste buds are
now back, thank god. I have posted an extra page on suggestion for coping
with dry mouth or taste changes, plus some new photos in the gallery
So far, so good.
The past seven monthly tests have been extremely positive and consultant very
pleased with healing process. Back at work since February, no fatigue problems,
enjoying occasional drink of beer and wine, fingers crossed for the next 18
months whilst in the most critical period. Will keep you posted.
No signs of any re-occurance. Consultants every month use an endoscope to
view and film the back of my mouth and throat. Not a pretty sight when going
through my nose. Site of former tumor totally clear. Have a copy of the endoscope
film and will be posting a snapshot of the former tumor site shortly.
Two months back
I was getting alittle concerned that the dewlap under my neck was feeling
a little too woody and I was getting the occasional slight pain in that area.
This has now stopped and the dewlap has started to reduce in size.
Note: The dewlap
is a lump on the neck around the site of the radiotherapy which comprises
of lymphatic fluid and fatty tissue. The lymph fluid does not drain away as
freely as before due to the lymphatic system in this area becoming sluggish
during and after the radiation. It takes about 12-18 months for the dewlap
to disappear and the sluuggish lymphatic system in the area to regenerate.
Some people massage the area regularly to try to reduce the swelling.
I have taken
up regular running and this has helped the dewlap to reduce in size. It seems
that exercise, which stimulates the lymph glands and sweat glands, has assisted
me in speeding up the recovery. Although the recovery is going extremely well,
I am regularly anxious that the cancer may come back but the running helps
me clear my head of any such thoughts and keeps me positive for longer periods.
The saliva glands have improved although when running the area of the dead
saliva glands can get dry, but it is not uncomfortable.
for running was to lose some weight. All the weight I lost during treatment
I had almost put back on, because when I got my taste buds back I ate for
England! I am running regularly between 12-16 miles per week now and taking
part in the Great South Run, which is a 10 miler. Feeling quite proud of myself
as I never used to run more than 2 miles when I was at school.
Will keep you
posted and hope you are all coping well.
test results great and first year, out of five, now completed and clear. First
time in two years that I have fully tasted a Christmas lunch, well worth the
wait. I have added a page called 'Why me' , my interpretation on how I could
have possibly got this cancer.
Hope you and
your families have a great year and keep healthy and positive.
The last four
months have been clear of any complications and have been very busy. I ran
the London Half Marathon in March and the London Marathon a few weeks back.
Although the second half of the London Marathon was painful due to an injury
I picked up, I would not have missed it for the world. I managed to raise
over £2000 for Cancer Research UK. I felt I had to give something back
to the organisation that possibily saved or prolonged my life, as without
the recently improved treatment to this cancer, I do not believe I and other
tonsil cancer sufferer's would be here today, if they were diagnosed ten years
The only reminder
during the marathon of my treatment was that the side of my mouth where it
was radiated , got quite dry, but that was to be expected. I didn't help that
five water stations had run out of water by the time I had got there. I will
do it again in a few years, when I have lost some weight, the main motivation
being that I cannot get out of my mind a 'Rhino' passing me on a couple of
are now every two months and the last two have been clear. The 'dewlap' has
also almost disappeared.
30th November '05
The last six
months have been all clear and the 'dewlap' is still hanging on in there,
but it has reduced by half since May. Over the last year I had been experiencing
some intermittent ear ache in the left ear and this was causing me some concern,
due to the fact that re-occuring cancer can show symptoms via an ear ache.
After a number of months mentioning this to the consultant, he agreed that
an MRI scan would be arranged for the head and chest. The scan came back totally
clear. It appears that the left hand side of my neck/face took some battering
from the radiation and every time I yawned it affected the jaw muscles and
associated ear muscles/tissues which would have caused the ache. The consultant
has advised me that whenever I yawn, to prop my hand under the jaw, so as
not to yawn too wide. That'll teach me for not getting enough sleep!
I have just been
made redundant from work and now busy looking for a new project management
role before the start of the new year. This hasn't helped stress levels, but
fingers crossed, should be back on track shortly.
I have also updated
the 'coping with taste and dry mouth' page after
an excellent idea/tip was forwarded to me by a fellow tonsil cancer patient
Larry Judd from the US.
Have a great
Christmas and New Year.
So far so good,
the last three months have been all clear. Now check ups will be every three
months, but under National Health now rather than private. The main difference
being that I have to wait a little longer on the day of the appointment.
Got a new job
now which is great, as I am now no longer under my wife's feet and she is
no longer under mine!
Hope you are
all keeping well!
5th April 2006
Dewlap now disappeared.
I regularly receive
many emails from other tonsil cancers sufferers asking more questions or if
I am able to be a 'cancer buddy' to them. Unfortunately, my work now, as a
contractor, gives me very little social time, plus I spend at least two nights
away from home. I am also studying to be a Suveyor/Home Inspector , therefore
I apologise for not being able to respond to anybody who has tried to contact
I receive approx
2500 hits a month on the website, so what we intially thought to be a rare
disease has proved to be the total opposite.
My wife Lee
and I have now set up a Tonsil Cancer support message-board on Google, for
all the people who have contacted us over the past three years, to share information,
experiences and stories plus offer support to fellow sufferers and their family.
Any newcommer is welcome to join by clicking on the following link.
so far, the last six months have been all clear. (I missed the last 3 month
check) From December check ups will be every six months. Alot a pressure at
the moment training to be a surveyor and contracting. The family managed to
get a couple of weeks on the croatian coast as a well earned rest and it was
fantastic. It took me three days to get out of the depression due to returning
home from the vacation. I have inlcuded a family holiday photo
in the gallery.
Best wishes from
Raph and Lee.
So far all clear
and well. Had a checkup on 6th December at Addenbrookes Hospital and everything
fine. Next checkup 6th June 2007 and then only two more after that before
I hopefully get the all clear in Dec '08. Even after all this time I still
think about living with the cancer on a daily basis but we are living with
it and as always, trying to stay positive. Fingers crossed!
between jobs and still studying to become a home inspector. Neck muscles a
little tight on the left side and I have to be a little careful when yawning
but I was told that this would have been the result of the radiotherapy. The
intermittent earaches I used to get over the past two years has now subsided
and are almost non-existent. I now understand when people say that radiotherapy
is damaging, although you have very little choice other than to have the treatment.
It's still worth all the initial pain and discomfort to go through the treatment
to ulimately extend your life.
Best wishes and
stay positive from Raph and Lee
I have added
a new link in navigation table to join or visit the Tonsil Cancer Support
on Google Groups
Had checkup 6th
June and everything clear and fine. Still have the occasional slight earache
but thats to be expected after the radiotherapy. Another three checkups before
I hopefully get the all clear. It's funny that the memory of the treatment
has now become a blur, but on the other hand, on a daily basis, you remember
that you are still in remission.
It's really great
to see the support group flourishing and the amount of positive assistance/support
it is providing tonsil cancer patients and their families. Four years ago
there was hardly any support/info available on the subject, and alot of people
were suffering in silence. We have come along way in a short time. A great
big thanks to all.
Best wishes and
stay positive from Raph and Lee
5th Dec 2007
Had checkup 6
monthly checkup and everything clear and fine. Another year to go before the
'all clear'. I will have to start planning the party!
and thanks for all the positive words of encouragement from the support group.
Keep it up.
Some of you
may find the following article interesting:
five years in remission and an investigaton with an endoscope, my ENT consultant
informed me that I am now 'cured of the tumour' and I was now one of the fortunate
70% that are cured of this tumour. It was interesting to hear that they do
not like to say cured of cancer.
He told me to
stay healthy and fit, in particular, keep my immune system in top form by
sticking to the minimum five portions of fruit and veg per day. Limit alcohol
consumption and do not smoke, which I don't anyway. For peace of mind, Addenbrookes
ENT have suggested two more checkups, one every 12 months, then I do not need
to attend again.
There is a very
small risk that the cancer may appear in the same site and a less than 10%
chance of tumors apprearing in the respiratory tract, in particular in areas
which show a field change. Basically patients with oral squamous cell carcinoma
(OSCC) are at risk of developing second or multiple primary cancers as a result
of field cancerization in the upper aerodigestive tract.
- concept explaining the high incidence of a second malignant mucosal tumour
discovered during the diagnostic investigation or follow-up of the first carcinoma
in the respiratory tract. Smoking and alcohol abuse irritate the entire mucosa
of the respiratory tract, inducing premalignant and malignant lesions. This
has led to the concept of 'field cancerization' or 'condemned mucosa', initially
published in the context of the oral region, but can be extended to include
for the entire head and neck mucosa. The reported frequency of such a second
malignant tumour ranges from 10 to 35%.
was no evidence of any field change.
This has been
a long road for me and my family but I feel we have made it through the over
side. The treatment, although agressive, has definately proglonged my life
and I will be making some more changes to increase my chances of longevity.
Stick with it
and I wish everybody connected with this disease, best wishes for a healthy
and long future. Rest assured the site and message board will definately be
kept operational and updated as and when new information is available.
years cancer free now, since treatment finished end of 2003!
Although I had
the formal all clear Dec 2008, I have one more checkup in Dec 2010 before
Only issue I
have had is that I cracked a front lower incisor recently. I did not allow
my normal dentist to extract the tooth as I wanted to ensure the tooth was
extracted cleanly by the maxillofacial surgeon at Addenbrookes and to ensure
the risk of osteonecrosis setting in was reduced.
- This is due to if a tooth is removed after a jaw has been radiated then
there is a risk of the jaw bone not healing after extraction and a major infection
could set in, meaning potential further surgery and antibiotics for the rest
of my life.
tooth will be extracted on 15th Feb 2010.
Please ensure you all look after your teeth especially after your protective
saliva production will have been reduced due to the radiation.
New Year to all
15th Feb 2010
Had the tooth
extracted successfully by Mr Malcolm Cameron, the maxillofacial surgeon at
Didnt feel a
thing, other than the needles!!
It appears that
because the radiation missed the area of the jaw where the tooth was extracted,
the odds of Osteonecrosis setting in are low, but best keep an eye on it.
If a tooth needed to be extracted from the area of the jaw that was radiated
then that would pose a greater risk of Osteonecrosis setting in.
Had a partial
denture made but having difficulty getting used to it. Now likely to have
some proper bridge work done in the near future so I dont have to live with
this uncomfortable plastic attachment in my mouth.
Keep those teeth
1st Dec 2010
all clear. After seven long years in remission, I have finally been discharged
from all routine checkups at Addenbrookes Hospital - Cambridge. Going forward,
I just need to keep an eye on any unusal changes within the throat, mouth,
neck and ear area, although the risk of related cancer returning is very low.
To anyone starting
out or currently on their own journey through the treatment and/or remission
is 'Never Give Up'. Stick with it and I wish everybody connected with this
disease, best wishes for a healthy and long future. This cancer/tumour can
It was 9 years
ago today that I finished my treatment and other than this support forum,
there is very little to remind me of that period of my life. The occasional
earache and occasional dry mouth are all but gone now, although I still have
to be careful when yawning and ensuring regular stringent dental care, but
these are minor irritations.
My old pre-cancer
weight had returned but I am now 28lbs lighter due to giving up totally drinking
alcohol six months ago and improved exercise.
I have to thank
all the support forum members for their support for each other, it has been
truly inspirational and heart felt and I definately feel setting up the support
group has been one of my best decisions in life.
Merry Christmas and a happy and healthy new year - Raphael
16th April 2013
A dedicated 'closed group' facebook page has also been set up for Tonsil Cancer patients
and the family members.
A Facebook 'Closed Group' is where anyone can see the group and who's in it. Only members see posts.
If you would
like to join......in facebook, search for 'Tonsil Cancer Support Group, send
a friend request and I will include you in the facebook group.