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Squamous Cell Carcinoma of the Tonsil.

John54
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Hi, Anybody else with this cancer? I was diagnosed 1/12/17 and treatment started 18/12/17. Entered a trial, 25x weekday daily radiotherapy plus 5x Chemotherapy. OK until start of week four, but had to start co codomel last night. Appetite has gone and forcing the fortysips down is a real problem, but have found thin porridge with honey to be good. Really find pureed meals inedible. I know it is only going to get worse over next four weeks. Any tips or thoughts. Thanks.

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    Hello John.  Sorry that I cannot give you advice on your problem but wanted to say hello and let you know that it is not the case that nobody was interested in your post - but maybe the person with the right information has not yet seen it.  I feel sure you are going through a rough time and that Christmas was not a great one for you.  If you don't get any results other than the good wishes which I am sure people feel for you then you might like to copy your post into the Ask the Nurses section so they can help you.  Best wishes.

  • Offline in reply to Annieliz

    Hi AnnieLiz, it really was very kind of you to take the time to reply. Mine is classed, I believe, as a rare cancer, so I was not expecting immediate responses. It is a tough time, but at least it was me who contracted it, not one of my family. 

    I am very positive about the outcome and am receiving the best possible from QE Birmingham. Hopefully I can provide useful input to other contributors.

    Best wishes

    John

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    Hi John54

    I was diagnosed with tonsil cancer on 1st December 2017, I am 60 female and live alone in France so was shattered by the news.  I underwent a neck dissection on13th December, I was in hospital a week and have of yesterday been given the outcome.  I had very aggressive cancer on my tonsil but the 12 lymph nodes taken were clear, great news the cancer has not spread. I see the Radiotherapist next Friday meanwhile my Stomologist is making an appointment with a Chemotherapist as I need to have both.  I had a couple of weeks of pain and lack of swallowing after surgery but feel fine and am back to normal now.  I am dreading the radio and chemo, living alone I am not sure how I will cope.  I have a friend who wil take me back and forth for the treatment but the side effects etc scare the hell out of me.  I have been supported by Cancer Support France who help Brits over here with cancer, they have been excellent.  I have a good Polyclinic 15minutes away and they have a new radiology machine up and running as of this month.  I am staying as positive as I can as a new grandson arrives in Australia this month - had to cancel my trip! but will meet him at some point this year.  I have literally trawlled the internet for info as although the treatment I have had and my surgeon are great I am finding I am lacking information and support.  My local GP has told me I can ring anytime but I do feel a bit isolated.  If there is anyone out there who has been through radiotherapy and chemo for tonsil cancer I would love to hear from you.  John54 keep positive, tomorrow is another day, one day at a time - no need to worry about what may not happen eh?

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    Hi there John and welcome!

    My husband was diagnosed with SCC tonsil plus lymph node mets in December 2015 . He is now in remission following treatment - 30 fractions of VMAT radiotherapy and 5 cycles of cistplatin chemotherapy. He unfortunately still needed a neck dissection afterwards but is niw in remission. I am happy to chat and so if youd like to message me that would be fine. 

    Best wishes

    Emma

  • Offline in reply to LesBeatrix
    Hi LesBeatrix, thanks for making contact - the Tonsil cancer club has a very small membership. Like you, the words ' your have cancer ' was akin to walking into a brick wall - six weeks earlier I mentioned casually at a routine meeting with my GP that I had a sore throat and now I'm being told that I have a chance of a cure, because the NHS would not spend the money on me if they were not going to get bang for their buck. Clearly, though, you have been hit far worse than me. I did not have an operation, but went straight into radiotherapy and chemotherapy. Like you I decided to adopt a positive attitude from the outset and am lucky to have my family local and fully on board helping me. It was still difficult - my 63rd birthday was on Christmas Day and there was a definate elephant in the room when they were all round for the day. Enough of my waffling. Your immediate concern is the radio/chemotherapy. I hope you find my experiences useful and can maybe get some comfort from them: 1. I had no experience in this area, so decided to place 100% faith in the people who knew what they were doing - one less problem to worry about. 2. I decided that it made sense to do everying they advised me to do. 3. You will have a mask made. Plastic strips are melted over your face so the mould can keep your head immobile during radiotherapy. The mask making process is quite relaxing, painless and should hold no worries for you. 4. Read all the literature they give you and write down points that require clarification. 5. Assuming the process is the same is pretty much the same in France, you will have familiarastion visits to the radiothrapy and chemotherapy wards. They are bright and full of specialists who know precisely what they are doing. Ask questions - uncertainty will only breed uneccessary worry. 6. At the meeting with the lead consultant, do not be afraid to stop him/her if anything requires clarification. 7. The first visits to the wards will be like everying else you do for the first time - a bit of a blur. By visit two you will be an old hand . 8. Take plenty to occupy yourself - you will have a lot of time. 9. As for the processes, first Radiotherapy. Forget any thoughts of claustrophobia. The mask will fit tightly on your face and you will have to close your eyes, so apart from the bed movement and slight reduction in light, you will not be aware of going into the machine. The only effect at this stage is that you may have some blurring of vision for a short while as the mask has pressed quite tightly on the eyes. 10. Chemotherapy. The actual process is sitting down, have canula fitted, receive liquid through tube. Catch up on reading. Place bets on dodgy horses from your tablet and eat/drink. 11. What I cannot stress enough if that the actual treatment is nothing to worry about - unless like me you spend more than you online shopping. There is no pain. 12. For the first week or so you are unlikely to experience any symptons from either process. You will be given anti nausea tablets to take. I have not had any sickness, but take them religously. 13. I lost my sense of taste at the end of week one, though most people seem to be affected a little later. This was no more than an irritation and I countered it with added Worcester sauce or mustard. Drink plenty, particularly water. 14. Over the whole process, break everything down into small sections. Every time I am wearing the mask, I add 4% to my total completed, 20% for chemotherapy. I am currently at 76 and 80 % . 15. Bearing in mind the above, I am not going to talk about the later stages of treatment. We can do that as you approach/ reach them. 16. You will almost certainly be the only person there with tonsil cancer ( we have beaten odds of something like 40,000 to 1 to get into this select band. Buy a lottery ticket to celebrate). Because of this and because not even two tonsil cancer patients will have the same treatment or reactions, do not waste time talking othet patients. They will only want to moan or compare note about who has got the biggest growth. Put your nose in a book and ignore them. I'm sorry, I seem to have been waffling for ages about things you may be aware of. My message is that this is not a process to worry about. You are in the hands of professionals, they are paid to do your worrying. I would be delighted to talk with you throughout your treatment - I'm four weeks ahead of you - if you feel it would be useful. There is no disguising that we would rather not be in this position. But we are and have to suck it up. I am sure that like me, you would rather have than one of your close family members. Let me know how you get on and we can get through this process together. Please excuse my direct approac Best wishes John54
  • Offline in reply to Newlymarried
    Hi Emma, Many thanks for taking the time to respond. My course finishes a week today and my main concern is eating over the next few weeks. At this stage, what was your husband managing to eat/swallow? How long before his taste buds returned? How long before he could eat relatively normal meals? The possibility of an operation is not something I am am looking forward to. However, I am trying to take this whole process in bite sized chunks, so as this route is 3-4 months ahead, I am not wasting time second guessing what might happen. However, I will be back in touch to pick your brain as I move along the process. I am glad your husbands cancer is in recession and hope you and he are feeling well. Once again, thank you for taking the trouble to respond, it is comforting to be able to get the insight of other members of the very rare Tonsil cancer club. Sincere best wishes. John
  • Offline in reply to John54

    John and les

    welcome to the club that no one wants to join .... it’s a special club though full of very special people

    i was diagnosed with throat cancer and am now 3.5 years post treatment

    i wrote a blog about my whole experience

    it guides you through the process I went through, what I had to deal with and the many wayand changes I had to make to get through it

    it also gives advice on recovery and the after effects of the treatment

    shout if you have any questions and I hope it helps

    gammaraygary.wordpress.com/.../

    vatch

     

  • Offline in reply to John54

    Hi John 

    So glad the members of the very small tonsil cancer club are getting in touch to give you support. As you say it is like being hit in the face by a brick wall when you hear the words. We had no idea it would be cancer and as a nurse I had never cared for anyone with it either. My hubby is a fit,non smoking , tea- total , vegetarian so it was even more if a shock. 

    Well done for getting this far as the treatment is no walk in the park! You say you are about to star your last week  and I gave to say it does get more difficult for the next 3-4 weeks. My hubby had a RIG - feeding tube - and was probarbly only managing soups and high protein drinks by now. This did deteriorate and as we were warned he couldnt eat at all by 10 days  post finishing radiotherapy so had a feeding pump to provide his nutrition. As for the pain again this steadily got worse and so we went from dispersable co codamol to oromorph and fentanyl patches to control it. 

    He lost all taste except fir bizarrely celery ! This has very slowly come back to a degree however he says that its not the same as before - he had a really sweet tooth before but now if he eats something sweet it seems to switch his taste buds off . Consistency of foods have also taken time to improve ve- he always has water with him and ar first couldnt eat  bread , cakes, anything dry - fruit, fruit juice etc. We found gluten free bread and wraps much easier for him to manage along with foods with sauces. 

    Have you tried mannuka honey ? We found this helpful as Pauls throat got more painful until he couldnt swallow it and he still takes it now.

    Anyway please feel free to come back to me with any questions and wishing you loads of luck for the rest of your treatment.

    best wishes

    Emma

  • Offline in reply to John54

    Hi John

     

    Thank you so much for your reply and the details - I feel so much better and it was so worthwhile to me - I am at a bit of a loss and don't have anyone to talk to about it here in France and I don't want to burden my son at this time - baby due any day!  Cancer support here is good coming to appointments but more on the what I can claim side of things more than practical info as to what to expect! You have added to my positivity and I thank you for that.  I was just so unsure as to what to expect from the radiotherapy - not so much the chemo as I went through this with an ex mother in law.  All your 'waffling' is wonderful news to my ears and very helpful.  I have pre-empted the dry mouth and ordered tablets.  Post op swallowing was hell but I found egg and milk and honey good to get down and healthy and fresh banana milk shakes.  I am worried about weight loss - 5.3 and 7 1/2 stone - in old money lol - I have lost 5/6lbs which puts me now at 7stone and really don't want to lose anymore - have you had a huge weight loss?  I have protein powder which I am adding to all my liquids, I was also pleased to read you had no nausea. Have you a mouth guard to protect your teeth?  I was sorry about the NHS decisions towards you - I am well aware I am lucky here in France they have an excellent cancer care record and the kit is state of the art together with their specialists.  I live 15mins away from the hospital in what is not a large town by any means but they have all the latest bling!  Love your approach to treatment - I see I may be snapping plastic big time and become more than familiar with the Amazon delivery driver?  Please keep me posted as to your own ongoing treatment and how you are coping and feeling, I think as individuals we are strong and it is our family who take the hit worse than us.  I am thinking of you and know you will keep positive.  Again thank you so much for taking your time to respond and reassure me, it means so much - best wishes to you and your family

    Lesbeatrix

  • Offline in reply to Newlymarried

    Hi Emma, I really appreciate your getting back to me!

    I must admit I'm feeling a bit of a fraud at the moment. I've had 20 radio and 4 chemo sessions and seem to have escaped lightly so far ( tempting fate, I know). I lost pretty much all sense of taste at the end of week one, turned into a mucus producing machine and am now largely limited to fortijuice and porridge - strange you mention mannuka, I had never eaten honey in my life, but my daughter bought me some at Christmas and I am now addicted. I had no pain until early this week and the occasional cocodomol has sorted that out. I am under no illusions, however, that things can and probably will change quickly, so am hoping for the best, but planning for the worst, over the next four weeks plus. As a Wolverhampton Wanderers supporter, I have had over 50 years practice with this mindset.

    I have discussed your very useful food tips with my wife and have incorporated them in the plan of action. That said, any hospital that makes me endure treatment that means I enjoy celery, can expect communication from my solicitor.

    Joking apart, I am really grateful for your input and that your husband is making good progress. I will be back in touch as any feedback/advice I can get from those who have been through what I am about to face, is invaluable.

    Many thanks

    John

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