New here, trying to find my way

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Hi, I’ve had tonsillectomy and awaiting radiotherapy + chemo treatment. Im struggling, frankly. Very keen to find people to communicate with about all this. If I’m on the right track - if I’m in the right forum even ! Please let me know.

I have squamous cell carcinoma (I’m told). One tonsil removed and the other inoperable. My cancer is P16 positive - which the Drs seem pleased about. I must have radio therapy for six weeks and chemo concurrently once per week. I have pain from the tumour hitting a nerve in the side of my face. Taking codeine and Oramorph - which is on one hand keeping me sane and on the other becoming an addiction. I will happily wean off when and if this is all over.

I have tried to give you a bit about myself and my condition. I feel very lost and confused and I’m very willing to communicate with others. 

so - just putting this out there. Please feel free to respond Pray tone1

  • Hi  

    Yes, you are totally in the right place. There are lots of us here who have survived treatment for throat cancer and are now thriving. There are quite a few in your position or still in treatment. 

    You will feel better once your plan dates are set and you have something to focus on. Once treatment starts the pain in your face should ease pretty quickly but will, I'm afraid, be replaced by the pain of treatment. That is a little easier to bear psychologically I feel.

    Don't worry about addiction. We don't get addicted to opiates for the short time we are on them. Yes, the body gets physically used to them but there's no mental aspect to it. We have to make sure that withdrawal is slow and managed.

    I'm a whisker away from five years clear and living really well 

    My few words of advice might include....Do everything the team tel you to do, if you are offered a feeding tube have it. It might save your life. Mine did.Don't be brave, you are allowed to be frightened but you don't need to be in too much pain. Tell your team if things aren't working. HPV positive cancer responds very well to radiotherapy and is CURABLE in 90% of patients

    Stay with us. We have your back. 

    Best wishes

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Zenkodo I can only say what Dani has already said. There are many of us on here who have had the same, had the treatment and are now back to living our lives. There is light at the end of the tunnel. I too would advise you to have a feeding tube if you are offered one, they are a real help if eating gets difficult, during your treatment and recovery.  We are all here for you, so ask any and as many questions as you want, someone will always answer if they can.

    Ray

  • even though I'm still waiting for my treatment, I'd like to reiterate what has already been advised about the feeding tube.. for me it's a no brainer.. dehydration and/or malnutrition are definitely not what I want to experience on top of everything else should it become too uncomfortable to swallow. stay positive, trust your team, you are not alone.

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Hi and welcome from me.  Lots of advice and support on here so keep asking questions, or just rant.

    Peter
    See my profile for more details of my convoluted journey
  • I can say am with you on this one...had a growth took off vocal chords now waiting g for my treatment  ti start..30 sessions RT and chemo 2 sessions..where they cut my growth off has also caught a nerve which constantly  gives me severe ear ache and like someone has punched me in the jaw, I have been told it's a nerve that has been damaged, hoping it will go away when have treatment. 

    On Tramodol for pain which just holds it dont want anything to strong as I have problem with my bowels.

    Just want to get cracking now.

    • Hello Zenkodo, you're definitely in the right place here, this group was so helpful when I was going through treatment a year ago (I'm fine now, touch wood). Hang in there and try not to worry - easy to say I know but it doesn't help. As others have said, HPV+ SCCs are curable. We're here for you to ask anything or just unload. 

    Catriona

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Dec 2023 one year all clear. See my profile for longer story

  • Hi Zenkodo Youve  found the right place many of us have been there read the book got the T  shirts so to speak. Sorry you’re here but we will all try to help hov 16 positive tumours respond well to treatment. Ask any questions we’re all happy to help. I’m over 5 years post radiotherapy and chemo for tonsil cancer with lots of affected lymph nodes. Happily living my life. 
    once treatment plan is in place everything falls in to place take it one day at a time,tell your radiotherapy team any issues they are your first point if call daily. 
    Can only echo what Dani has said. 
    Hugs  Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hello , your in the right place , a very warm welcome from me , I'm awaiting treatment due to start 6th December 30 days  radiotherapy and 6 weeks of chemo. Stick with the forum they are very helpful and friendly 

  • Hello

    I finished radio 5x/week + chemo 1x/week for a tonsil HPV+ve squamous cell carcinoma 11 weeks ago. The treatment is not a barrel of fun - I had about 3 weeks when all I could swallow was water. But, with good pain management and fantastic nurses it never felt undoable. By about 4 weeks post treatment I was eating soft food, and came off Oramorph about 5 weeks post treatment and codeine 10 days later. 

    Withdrawal symptoms only right at the end. Felt somewhat achy, shivery, mild diarrhoea for a day or two. It was only after it had finished that I realised what it was (I assume it was withdrawal). 

    Well on the road to recovery - started a bit of work, taking an interest in life, feeling well. 

    best

    Mike 

  • Hi Z

    I was diagnosed with Tonsil cancer in February 2023

    Treatment will be tough but worth it, I finished chemoradiotherapy in June, recovery was, and still is, slow....my throat and mouth were ulcerated and painful...I was reliant on Oramorph and slow release morphine, PEG tube feeding stabilised my weight, night bolus feeding not pleasant, taste will go for most and mouth will be very dry....

    Many low days when things will seem to be overwhelming

    But ...things will slowly but surely improve...taste can return over time ...meds to help with mouth dryness help immensely...morphine withdrawal was tolerable.

    Macmillan staff and oncology teams are fantastic listen to them.

    I have just returned from the Canary islands, started playing golf again, a little bit of swimming and walking...things I would not have thought possible 3 months ago.

    Enjoying my food more day by day....Tunnock's teacakes and a cup of tea are one of life's little pleasures.

    We still have to live in the shadow of cancer but life can be pleasant again.

    Good luck

    Peter