About to be diagnosed

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I have extreme swallowing problems that they put down to a pre-existing condition. On barium swallow they've found a large filling defect exactly where I've been describing for the last two years.

It's in the right pyriform sinus. Given 14 day referral to ENT. Lots of tears. Bad symptoms in that area - feeling of significant lump when swallowing, burning etc.

Wake up in early hours crying (of trying to). Family very upset and we're assuming the worst, as it's been there so long.

Not sure how I'll cope with being told. Scared. I'm 54, male. Married with a daughter. Been ill with a pre-existing long term condition, which can affect swallowing, for about 10 years.

  • Hi  

    Welcome to our community but oh so sorry to see you here. Waiting to know what’s likely is so hugely stressful. We here all know how bad that is 

    There’s not much point in saying don’t worry because you will but hold onto the fact that most referrals are not cancer and of the ones that are, throat cancer is curable. 
    Dont Google. There is nothing there but alarm and rabbit holes. 
    Ask your GP for something to help you sleep. Get out and about as much as you can and keep busy. There is absolutely nothing you can do about it. 
    Stay here to have a cry and a shout. There is always somebody around

    Best of luck and hugs. 

    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
  • If there's anyone out that that has survived cancer in this area please reply!

  • Hi Jbloggs

    I had exactly the same symptoms as you, it started with hoarseness of the voice (which I ignored as it didn't hurt at all. Then I started to feel as if there was a 'lump in my throat' sometimes.  Finally, the lymph node on the left side of my neck came up, but again, I didn't worry as I had had a cold and put it down to that.  Then, I went away on a pre-planned 6 week trip to visit a friend in Andalucia, by then the hoarseness was constant (instead of coming and going as it had been.)  So, on my return I made an online consultation and they asked me to go down to the surgery there and then.  Of course I was concerned then.

    When I got to the practice they asked me a load of questions and looked in my mouth.  I was told that due to the 'symptoms' they were going to give me a two week referral.  A few days later I got an appointment to go to ENT for a Nasal Endoscopy.  I had that done and then the doctor said I should wait in the waiting area and they would do an Ultrasound examination.  I then had that done and they said to me that it all looked OK but to be 'on the safe side' he would do a Fine Needle Aspiration (Biopsy.)  I was again called back for a follow up appointment to discuss the results with the consultant.  Long and short, they had discovered a small growth on my left tonsil and lymph node and said it was a Squamous Cell Carcinoma.  I now have to go in for an tonsillectomy on Thursday 29th August and treatment to the lymph gland.

    This support forum has given me all the support I need and even though I know it's a cancer I no longer have the fear I had at the outset.  The waiting, worrying and Googling is the worst, but everyone on here has been so kind and supportive that I am no longer worrying if 'I'm going to make it', I know that I will.

    Take comfort in the fact that the cure rate is one of the highest (as I've been told by the good folk here who certainly knows a thing or two and the consultant.)  My thoughts are with you as I was in the same state that you are in right now about two weeks ago,

    Sending hugs.

    Hazel x

  • If there's anyone out that that has survived cancer in this area please reply!

    Yes. One of our community champs Mike  had cancer of the piriform sinus. I’m sure he will be along at some point to tell you 

    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
  • Dani you are amazing you know all the people on this forum and are so so helpful to all. Thank you for all your quick responses and attention. Jackie xx

  • Thanks Hazel. I think where mine is the cure rate isn't so good.

  • Hi welcome from me easy to say hard to do please keep off google you’ll scare yourself even more. If you do need us we are a friendly bunch. As Dani  says head and  neck cancer do respond well to treatment. In meantime want in here we’ve all been there.don’t assume the worst until you know you’ll drive yourself mad  

    Hazel . 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Dani you are amazing you know all the people on this forum and are so so helpful to all. Thank you for all your quick responses and attention. Jackie xx

       and I are old lags JoyJoy 

     As are  and  

    We try to help where we can so thank you. Mike will be along to say…. Hey! Not so old. 
    Wink

    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
  • I think where mine is the cure rate isn't so good.


    Maybe but Mike is still alive and kicking ten years down the line

    Anyway, please don’t second guess. You don’t know yet 

    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
  • Helio Jb, I was (as Dani said) diagnosed with primary in the same place, my consultant called it the piriform fossa rather than sinus but same thing...that was in 2013 and I was fifty-three, still very much alive and kicking!

    I don't know where you're getting your info saying cure rate not so good, because I've met many people in the last eleven years, both here and in the flesh, with a similar diagnosis, and all are doing well, cured or on the path to it.

    Let's hope you don't actually get a diagnosis......but if you do there will always be people on here who'll know what you're going through and how you feel.

    The worst bit is definitely the waiting, if/when you have a diagnosis and a plan it'll get easier.

    The blog that I wrote through my treatment is linked below, may be of some interest to you. Try not to worry too much.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/