Hypophangeal cancer, tumour in Piriform Fossa

Hi

Just awaiting 100% diagnosis but this has been 'confirmed' I told its quite rare and inaccessible.  Awaiting final biopsies which I understand takes 2 weeks???  Been told I have have level 2 lymph nodes and lingual tonsils????   Can anybody else diagnosed with this explain exactly where it is, treatment and prognosis!  Had all the scopes, under GA, MRI, US guided neck biopsies etc

Absolutely terrified, in considerable discomfort, problems eating and swallowing.  I'm in Eastbourne.

Pauline

         

  • Hi Pauline welcome to the club none if us wanted to join. I am 4 years post radiotherapy for tonsil cancer inside crypt of tonsil  soft palate and 7 lymph nodes. This part the waiting is the worst part it’s the fear of the unknown and the word cancer we’ve all been there. I wasn’t able to have surgery but I had 35 session of radiotherapy and 2 of a planned 3 chemo. Mine was h p v postive and classed as  orapharangeal the hypoharanageal is just lower down .I couldn’t have surgery as one of the lymph nodes was in accessible for  surgery. So please try not to worry. Best advise keep off nDrcGoogle stick with us on here. We will all help if we can. 
    Rant in here when ever you want to. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Thank you.  I am truly terrified. It's been 14 weeks since I saw a GP who told me it was muscular!

    So, what does Chemo/Radiotherapy look like? I know it's different for everybody but what was the duration of treatment?  How was chemo?  How was Rado? Side effects?  Prognosis?

    So many questions!!!! 

    Pauline

  • HimPauline my blog link is at the bottom but briefly 

    radiotherapy was 35/sessions for me Monday to Friday actual treatment is less than 10 mins my chemo was day 1 and day 21 those sessions weee 10 hours I didn’t loose my hair but some chemos do it depends what route the oncologist goes down .

    Treatments hard purely as it effects mouth and throat but my prognosis was cure and cure is what I got.i thought I had pulled a muscle 8n spain we were there 11 weeks it was inky when we got home I went to g p a friend told me to go she had just lost her husband to cancer and was concerned for me. Glad she did as rest is history. I’m now almost 4 years happily living my life inwas 61 when diagnosed. It is a scary time  but our n h s once yiu get into the system has a world class reputation  trust yiur team talk everything over with them. 
    Inhad a mask made for treatment which keeps yiu fixed in one position for treatment it’s not as scary as ut sounds and a nasal feeding tube fitted week 4 as inwas una ie to swallow so all my made uo feeds medication and water went via that for 6 weeks. But here I am happliy living my life almost the same as before. i have one more year to go then I will be declared cancer free at the moment I’m in remission I see consuktantbevery 6 months now .which has got longer as time goes on 
    hope this helps 

    Your treatment may differ you may have chemo first it all depends on your oncologist ,then  a different chemo combined with radiotherapy.I know a another  lady 2 years ago had hypoharangel cancer she got married  same year returned to work and has a 7 year old today she sent me a photo of her and family having Sunday lunch out.

    Of course we are all different and none if us in here can give a clinical diagnosis onky our own experiences.

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Hi Hazel, forgive me for being thick. Why did you think you had pulled a muscle. I had no symptoms when I had my diagnosis, occasional earache which I put down to a bad tooth. Is neck ache/ muscle ache a symptom x

  • Hi Pauline and welcome from me too. Hazel’s gone over chemo radiation quite thoroughly  but it’s a question you have to ask your oncologist. Believe me once you’ve been allocated a plan things slot into place and you’ll feel better 

    The Piriform fossa is a little pocket in your throat just before your larynx. You have two., one each side. Lingual tonsils are little tonsils on the back of your tongue. It’s where my cancer was and I’m now three and a half years clear. 
    I have a friend who had cancer in the hypopharynx. She must be nearly 2 years clear. She married in the middle of Covid  and moved into a new house and is enjoying her life. 
    Hang onto that 

    I couldn't have surgery either (I'm sure that's what your doctor means by inaccessible) 

    I was cured by six weeks of radiotherapy. It's a tough treatment no doubt but doable a day at a time. Most of us make a good recovery.
    There are a few details of my treatment in my blog linked at the bottom of this post. 
    When is your next appointment at the hospital? 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Not Hazel but I know she had a lump in her neck (which was the met to her lymph node) and she thought she had pulled a muscle.

    Swollen painless neck node is a classic presenting symptom. Most people have no throat pain either, but that depends if the cancer is near any nerves though

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi lump in collarbone we had been cycling with side winds for weeks so though I had strained something in neck area how stupid was I. Lol. I had no swallowing issues ear or sore throat. I had just cycled 1100 km could eat anything so cancer was furghest thing from my mind. It was inky a few weeks before we were due hime a friend ad flown over and Larry the lump caused her to say see a g p. Her hubby had died recently from lymphoma.

    Hope you are well and getting in with life xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Hi Pauline and welcome from me.  Hopefully we can all help you get though this period in your life.  Most of us have experienced what you are going through whilst others are carers so see the issues from the other side of the equation.

    You are at the worst stage - awaiting the treatment plan.  Once you have that things will swing into place and you will rapidly move forwards.  Whatever treatment options you take none are easy but with support you will come through them to a good quality of life on the other side.

    My understanding was that the lingual tonsils are at the base of tongue and that is not an uncommon place to have this type of cancer.  Mine was a little higher up the tongue when they eventually found a tumour.  Mostly base of tongue cancer is dealt with by TORS (robotic surgery) to make access through the mouth easier - when surgery is appropriate.  I had a diagnosis from an enlarged lymph node and eventually had the majority on the right of my neck removed.  Sounds terrible, but actually it was not that bad and recovery was relatively swift.  Again surgery may not be appropriate in your case.

    I also had tonsils removed and work on my tongue.  In the end I did not progress to radiotherapy and 2 1/2 years after the first diagnosis I am still living life to the fullest.

    Peter