Suspected Head and Neck Cancer

  • 12 replies
  • 136 subscribers
  • 638 views

Hi,

First time posting and recently diagnosed with suspected head and neck cancer.  I'm a 51 year male and in early January this year I noticed a lump appeared on the right hand side of my neck. No other symptoms and feeling completely normal and healthy. After getting this checked at the Doctors I was referred for a ultrasound scan at which time they noted the lump in my neck to be an abnormal lymph node and they also took a needle biopsy. After a couple of weeks I was given an appointment with ENT consultant who confirmed the biopsy showed a 5cm Level 2 Node  and squamous cell carcinoma which is P16 negative.  I have a PET scan on Sunday 3rd and MRI scan On Monday 4th with note stating provisionally booked for pharyngoscopy and bilateral tonsillectomy. After a camera down the nose/throat nothing abnormal noted so primary cancer not yet located. Chest x ray came back normal yesterday with no issues noted.

Since been given this information 10 Days ago the fear and worry has been all consuming I was struggling emotionally to talk about my diagnosis my appetite disappeared completely and sleeping was a near impossibility although as more days pass I am improving and managing to eat although more because I need to than wanting to.

The scans this week cant come soon enough to hopefully get a clearer picture of what is happening and what the future holds for me. The waiting and the fear of the unknown is the hardest thing and the feeling of dread and Knots in my stomach jus aren't going away.

I will keep updating as I know more.

P

  • Hello, I'm new on here too - posted yesterday. I had my scans on Tuesday and like you the wait is just awful. Trying to eat normally but it's really tough. Mine is right tonsil that came back showing cancerous cells on biopsy but that's all I know. People say it get's easier once you know what you are dealing with so I'm hoping that's the case. 

  • Hi Coco cat.

    Thanks for your reply. It really does help to communicate with someone in a similar position.  

  • Hi

    Dimitris

    T2N1M0 tonsil cancer HPV16+...Diagnosed Feb 2023...Chemoradio finished June 2023.

    It took nearly 2 years for my diagnosis to be confirmed...due to condition being initially misdiagnosed....I had sleep issues (most of us do) Doc prescribed a short course of sleeping tablets....certainly helped....try to keep Dr Google to a minimum....use NHS, Macmillan sites etc....

    Stick with this group

    Take care and best of luck

    Peter.

  • Hi Dimitrius. 
    The waiting’s the worst park please keep off Dr Google youve  found us on here ask any questions someone will always try to help.onve yiuve got treatment plan everything falls into place  

    Keep busy watch box sets go for a walk. If you need help sleeping see your g p. 

    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  

  • Hi,

    Just an update,had a call from the hospital today. Pre op on Friday 1st and pharyngoscopy and bilateral tonsillectomy operation on Tuesday 5th so things moving on.

  • Hi  

    Welcome from me too. 
    At least things are moving fast. You’re in the good and experienced hands of a team that do this every day. 
    Likely the primary will be in your tonsils and they will find it. 
    Gold  standard treatment for this cancer is radiotherapy and chemotherapy. There are a few different regimes and you will feel better once these are explained. 
    All your biopsy and scan results will be discussed by a diverse medical, surgical and support team called a multidisciplinary team MDT after which you’re likely to be called in. Biopsy results from your surgery should be through two to four weeks after your op. Don’t fret if they are a little longer. A few weeks won’t make any difference to your prognosis ( which is good, by the way) 

    A word of warning. Tonsillectomy in the adult is pretty painful for around a fortnight. Make sure you go home with decent analgesia and take it by the clock. 
    I‘ll  echo other's comments about Google. Leave it alone for now. Ask here or your CNS. 
    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

    Community Champion badge
  • Hi,

    Thankyou for your replies. Its very much appreciated.  A question I would like to ask if anyone could answer is that if no primary cancer has been found yet and scans getting done over the next few days then is it just standard procedure to remove the tonsils as at no point do I recall anybody mentioning or suspecting the tonsils to be a possible primary source.?

    Thanks

    P

  • Hi Dimitris

    In my case most of the offending tonsil was removed via biopsies....radiotherapy zapped the rest of it ....the other tonsil was removed during radiotherapy...also zapped.

    Peter

  • A question I would like to ask if anyone could answer is that if no primary cancer has been found yet and scans getting done over the next few days then is it just standard procedure to remove the tonsils as at no point do I recall anybody mentioning or suspecting the tonsils to be a possible primary source.

    But it very often is. Thats why they remove the tonsils and biopsy them. If they find no cancer  there are options to discuss. 

    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

    Community Champion badge
  • Wishing you the very best with this Dimitris, waiting is the worse thing but once you get started you will feel more reassured. Fingers crossed for you, this forum will be so beneficial as a few people have had this experience and will know how you feel and support you.  X