The waiting is a nightmare

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So just recently I heard the words from my consultant that I had been diagnosed with squamous cell carcinoma. I have a 4.2 cm lump in my neck which is secondary. The search is on to find the primary site and I had a PET scan yesterday - awaiting the results.

If no visible site is found, then I'll be booked for a robotic tongue base mucosectomy. I had no idea how stressful the waiting is and how it just takes over your thinking and focus from everyday tasks. 

I know I'm no different to anyone else on here and we all experience this. The waiting for 1st biopsy results. Waiting for the 2nd biopsy results. Waiting for the CT scan. Waiting for the MRI scan and now the PET scan. The journey to get a treatment plan in place seems never ending. 

  • Hindi h try not to stress the neck lump also classed as a secondary it’s not like in other cancers. Often head and neck cancer we don’t know we’ve got it until a lump appears in the neck.  It’s the most common symptom for a lot of HNC. Ask re your HPV stays as well , I was HPV 16 positive

    Mine was like yours I called it larry the lump  I had no idea I thought I had pulled a muscle cycling I had no issues swallowing etc. my cancer turned out to be in my right tonsil hidden away. The waiting’s pants but once you get a treatment plan your head goes to a better place. Exactly 6 years ago I was in a similar position to you. Niw am living a great life. Any questions please  just ask were a friendly bunch on here. Blog below might help n


    Hazel aka RadioactiveRaz 

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

  • Hi Hazel

    Thanks for the reply. I've also read your blog. That was quite a journey.  

  • Hi.Rich. Thank you. I did it and so will you, one day at a time and remember once treatment finishes recovery is a marathon not a sprint. You’ll see your radiotherapy team every day they are your first point of call if you’re having issues tell them. We’re all happy to help on here, you cant beat  first hand experience.


    Hazel aka RadioactiveRaz 

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

  • Hi Rich

    T2N1M0 HPV16+ tonsil cancer ChemoRadio finished June 2023

    Swollen tonsil and neck lump....I was sent for an urgent referral in Feb 2023....first lot of biopsies were inconclusive....had to go back to ENT for another batch of biopsies....confirmation of cancer....then mask hospital for x-rays and some extractions....MRI scans....PEG tube fitting....Abbott nurse training for tube feeding etc....late April before treatment started....

    Yes stressful times but we have no real choice....

    Stick with this group....lots of experience.....good people ...and great advice during your treatment journey.

    Take care and best of luck 


  • good evening Rich999, to this day i never knew my primary site and never did find out, maybe they never found it. All i was interested in at the time was getting rid of the cancer, i just kept myself busy and accepted the fact that i had cancer and was in the best place with the right people to sort it out. I went to work up to the day before my first operation as it helped me with the waiting game just taking time off for the scans, biopsies, x-rays ,etc. You could ask your doctor for something to help you relax or a sleeping tablet if you are not sleeping well.  I know we all cope differently with stress, anxiety, and going into the unknown with the cancer diagnoses but your team will look after you and will be only too pleased to answer any queries, you are always welcome to re-post here as we have all been there and come through it all. We wish you all the best for your test results and treatment plan. Take care.



    Its sometimes not easy but its worth it ! 

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  • I’m with Chris on this. Yes the waiting seems interminable and can take over your life but there are things that can help. When it happened to me I spoke to my gp who gave me some sleeping pills (Zopiclone) and a low dose of antidepressants (Citilopram). The change was incredible and I was able to ditch them after I’d got the full diagnosis and the journey was underway.
    Embrace the pharmacology, I say. It’s there to help you, along with the painkillers, PPIs, laxatives, high calorie drinks, mouthwashes, toothpastes, etc you’re going to be taking along the way. Good luck. 

  • Hi Rich999

    Welcome to the group …..yes sadly the waiting is horrific Im a therapist and I felt soooooooo anxious my brain just wouldn't stop !

    Try and keep busy do all the things that bring you joy, ( and you can still do) eat your favourite foods watch some Netflix or boxsets but the key is keeping your brain occupied.

    For most of us once the treatment starts the anxieties lessen as we feel we are actively participating in the plan . I really struggled with sleep and still do tried everything but zopidem sleeping tablets every few nights really hep.

    There are no daft questions on this site so feel free to ask anything and lots of very supportive people with a wealth of knowledge and lived experience always happy to respond as soon as they can.


  • Thank you so much. I should get the results of my PET scan any day now, so hopefully I'll know where all this started from soon. 

    I think this group will be a godsend moving forward

  • Fingers crossedstick with us Rich999, believe me it will x pulled me through since last September and now Im booking holidays and loving life again 

  • Hello Rich999, I know what a horrible anxious scary time this is, just sending love & solidarity. I'm another one that got through it. i went in for a thoat mucosectomy but as soon as they looked, my primary tumour was obvious and treatment all clicked into place from there. It's nasty but it's do-able. I found this forum so helpful so stick with us. 


    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