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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.

  • Offline in reply to Vatch

    Not sure how to get stated on this forum so thought I would just click reply...i have read all your posts and enjoy the humor you inject into your individual fights. I am Paula I am English but live in New Zealand. On the 3rd of January I found a tiny ulcer on my tonsil I went to the Dr to get signed off work for a few days bit if a scive really... And here I am 20 days later waiting for a biopsy result I have been told will be positive for some kind of cancer in my tonsil and soft pallet. Its growing really fast and u have a huge hole in the right side of my face... They think SCC said hope for HPV but I'm a nurse and everything I've read says SCC... Been reading  about your treatments and am now terrified.. Lol... Any way that's me... Good luck everyone...

  • Offline in reply to paulaw68

    Paula

    Welcome to the forum and I am sorry to hear of your of your diagnosis

    There are many of us on here who have been through this treatment and we live to tell our tale.

    It's not a pleasent journey but we get there and everyone is different in theri ways to get there

    But let come back a bit and wait for the results of your biopsy before we go off at a tangent here

    My one piece of advice is that dont expect all the answers to come from your biopsy test, this may only define what it is or is not, you may have to have a few more test if any sort of treatmant is needed as you cant define the treatment until yu actuiall know what you are dealing with

    This is obviously a worrying time in this, this is one of the worse parts of the process ... i know i've been there, Hang in there you are doing all the right thingsa t the right times

    Let us know how you get on and come back and chat whenever you want

    Vatch

  • Offline in reply to Vatch
    Cheers... Read your blog last night!! Lol.... Of for CT This morning... Got everything crossed....x
  • Offline in reply to Vatch

    Hi just wanted to let you know....so I do have cancer but it is the best kind... Squamous cell with HPV present.. Funny how happy this made me.... They described treatment as rugged and after your blog I know this!  the Dr is confident that my prognosis is now very positive... Only one lymph node seen this is all good news... So I have a way to go but it's the best it can be... Will keep you informed.....

  • Offline in reply to paulaw68

    I’ve just been diagnosed with squamous cell carcinoma of tonsil , soft palate and both lymph nodes , Ive had ct scan and now waiting on mri and X-ray , meeting specialist on Saturday. I know how terrified you must feel waiting on the results , I only got mine 2 days ago. I hope your results are better.  I’m absolutely terrified but this forum has given me a bit of hope x

  • Offline in reply to Newlymarried

    Hi there, I’m new to this group and just been diagnosed with the same things two days ago , squamous cell carcinoma in tonsil, soft pallet and both lymph nodes. I take great comfort in reading about your husbands recovery as right now I’m terrified and not taking much comfort from the way the doctors look at me as it’s with such sympathy and sadness, it’s just not encouraging. I’m trying to stay positive x

  • Offline in reply to John54

    Can I just say thank you to you for your upbeat comforting posts , they have truly taken a bit of my worry away , I’m newly diagnosed with tonsil cancer , in the soft pallet and both lymph nodes, and I have to admit I’m terrified but all these posts on here are encouraging and I’m so happy I found this forum x

  • Offline in reply to LynneM
    Hi Lynne, I got my results yesterday and feel your fear, almost like this thing must be happening to someone else...you sound like your treatment is moving along a little quicker than mine, the wheels move slowly here in New Zealand. I think I have been lucky and I only have one Lymph node but a huge hole in the inside of my mouth, mine is also HPV +ve...yours???....never thought I would be waking up and checking to see if any of my new friends had replied to my moans and groans on a cancer support forum! I have to keep saying the word to make it real....I say it like Harry Potter used to say VOLDERMORT! mine is now called Cyril for my friends and families sake...I am not looking forward to the challenge that treatment will bring or the financial challenge of not being able to work, but it is curable and thats what I keep telling myself...we can beat this thing ...and looks from your photo that you have a very good reason to...so stay positive lol, funny how everyone says that but give it a go, lol...and we can make some of this journey together ...I will let you know how Im doing and you feel free to do the same...xxx good luck
  • Offline in reply to paulaw68

    meant to ask how did yours present? I developed a tiny ulcer on my right tonsil on the 3rd of jan, which opened into a painless crater by the 9th so i went to the dr, i now have a golf ball size hole in my mouth whch reaches across one half of my sof pallett...do you have an open wound?  i cant feel lymph but one shows on my scan ...initially it did not hurt and I thought that was great...last few days the pain has come eating is tougher but im still doing it!!!! and yesterday i woke up with the front right quarter of my tongue numb! bizzare! just wondering how yours started? keep eating everyone keeps telling me, I love food , I love to cook, i will bloody suck food and spit it out before i give it up!  anyway enough from me

    paula..x

  • Offline in reply to paulaw68
    Hi there, thank you so much for commenting on my post . I went to see the doctor just before Christmas with a sore beside my tonsil which just wouldn’t heal , my tonsil was also very enlarged on one side. I was referred that same day to hospital and then was told I’d need to go for an operation to have a biopsy taken and my tonsil removed, but when I was having the operation they discovered a tumour on my soft pallet behind the enlarged tonsil so they didn’t remove it but took biopsy, they also removed the sore in my mouth which has left a rather large hole in my mouth. I got the results two days ago that I have cancer in the tonsil , soft pallet and both lymph nodes. I had a ct scan which showed it hadn’t spread anywhere else but I’ve to have a MRI scan to confirm this and X-ray of my jaw to confirm teeth are healthy before beginning treatment. I’m meeting a specialist on Saturday so I’m hoping treatment will get started soon. Things have moved along quickly so far . I’m struggling to eat much solid food , I can but it hurts and it’s putting me off a bit. I was told this has stemmed from something viral and it’s uncommon in my age group , I was told I’d likely be treated by combination therapy of chemotherapy and radiation and this type of cancer usually responds well to that. I’m just struggling with the extremely sad looks I’m getting from everyone, think because it frightens me but I suppose it must be a hard thing to know what to say. I hope you get your treatment soon and it’s so comforting to speak with someone going through the same thing , it’s truly eased my mind slightly xx

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