Background and diary of events leading up to diagnosis

Scan Results and Required Treatment

Risks

Treatment Diary

Bone Marrow Depression

Photo Gallery

Suggestions for coping with a dry mouth and taste changes

Why me?

Feedback

Visit or Join - Tonsil Cancer Support - Group

Useful Links

Site last modified 16th April 2013

To take you to the current diary entry - click here

I 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.

Although 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!

This 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.

Background and diary of events leading up to diagnosis

Name: Raphael Stipic

Age: 51 years old

Occupation: Buildings Surveyor, Insurance Claim Surveyor and Build Project Manager

Marital Status: Married with three sons

Country of residence: Suffolk - UK

Sunday 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.

Thursday 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.

I 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).

Photo of actual tumour

He 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.

Wednesday 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.

Kept 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.

Monday 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.

Wednesday 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.

Saturday 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 was finished.

Back to top

Scan Results and Required Treatment

Thursday 25th Sept '03 - 09:10 Appointment with Dr Deutsch at the Nuffield Hospital Hove

Key Points from meeting:

Short term effects - Key Points:

My 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..!

Long Term effects - Key Points

Risks

Treatment Diary

Thursday 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.

I 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 starts.

Saturday 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 few days.

1400 - My wife Lee picked me up, carrying yet another bag of antibiotics and painkillers, commenting that I looked pale and not very well!

Tuesday 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.

See Photo Gallery for picture of mask

Friday 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 helpful.

0915 - Met with Mask team to ensure there was no shrinkage of the mask.

0945 - 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.

At least they are trying to cover all eventualities.

1000 - 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.

Tuesday 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.

Friday 24th 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.

Every Friday 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.

Click 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.

Friday 31st 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'!

Friday 7th 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.

Friday 14th 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 live.

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.

Friday 21st 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.

It's amazing 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.

Friday 28th 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.

Friday 5th 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.

Monday 22nd 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.

Monday 29th 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:

Although the 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.

Monday 16th Feb '04

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

Sunday 20th June '04

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.

Monday 4th Oct '04

Good progress. 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.

Another reason 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.

Tuesday 4th Jan '05

Everything fine, 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.

Friday 6th May '05

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 ago.

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 occasions!

The checkups are now every two months and the last two have been clear. The 'dewlap' has also almost disappeared.

Wednesday 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.

Sunday 12th February 2006

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!

Wednesday 5th April 2006

Everything fine. 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 me.

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.

http://groups.google.com/group/tonsil-cancer-support

Sunday 17th September 2006

Everything great 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.

Thursday 8th February 2007

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!

Currently in 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

 

Monday 21st May 2007

I have added a new link in navigation table to join or visit the Tonsil Cancer Support on Google Groups

 

Saturday 4th Aug 2007

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

Sunday 5th Aug 2007

'Useful Links' page updated

Wednesday 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!

Stay positive 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:

http://www.cancerworld.org/CancerWorld/getStaticModFile.aspx?id=1924

Sunday 7th Dec 2008

Party Time....after 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.

Field Cancerisation - 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%.

Fortunately there 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.

Saturday 2nd Jan 2010

Another celebration.......six 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 sign off.

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.

Osteonecrosis - 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.

The tooth will be extracted on 15th Feb 2010.

Note: Please ensure you all look after your teeth especially after your protective saliva production will have been reduced due to the radiation.

Happy New Year to all

Monday 15th Feb 2010

Had the tooth extracted successfully by Mr Malcolm Cameron, the maxillofacial surgeon at Addenbrookes, Cambridge.

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 clean!!

Best wishes

Wednesday 1st Dec 2010

Success.....the 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 be cured.

Sunday 9th Dec 2012

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.

'Never Give Up'.

Best wishes, Merry Christmas and a happy and healthy new year - Raphael

Tuesday 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.

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