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.

  • Does it matter if the one which detected the cancer isn't the one carrying out any future operation or radiation?

    No. Not at all 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • Things have been getting worse every 24 hours. Feels like the lump on right just next to larynx is restricting my breathing more and I’m having trouble getting any rest. I’m sounding very nasal now. 

    We’re thinking, if things continue to get worse, of going to a&e, but, knowing the problem is very likely cancer, where should we go:

    Hereford Hospital [35 minutes away, small local hospital with mainly visiting specialists]
    Worcester Hospital [40 minutes away, university hospital]
    Queen Elizabeth Hospital Birmingham [1hr 14mins away, large university hospital serving all of midlands. Had excellent treatment there for non related matter when we lived a little closer, but distance does cause my wife some logistical headaches]

    Be grateful for any advice. Please note that this lump has been there for 2 years, but I couldn’t get them to look, so this is not out of the blue and just panic. I’ve been living on liquids for 10 years due to other condition so plenty of time for things to develop unnoticed. I’m sounding more nasal each day.

    We have a private appointment booked with ent Thursday, and am on 14 day fast track, but we need to prepare that I might not even be able to wait that long.

  • Go to Worcester or QE. QE if you can.

    My husband had a heart attack. I took him to local hospital not realising that they didn't have a Cath lab. He had to wait nearly 12 hours for a transfer to the main hospital I should have taken him to.

    Good luck....just go

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • Thanks Dani. You think we should not hesitate and go today?

  • Go today. You don't want to be in a real panic in the middle of the night.

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Hi as Dani says go over to Worcester or QE Worcester do  have has a neck unit. I know a couple that have been treated so go whichever of those two I wouldn’t go to Hereford. It’s only a small cottage hospital as you know.

    Best wishes 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 

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  • Thank you. We may go to QE tomorrow now as I'm trying to set my wife up on all the bank accounts etc and get packed. All a bit of a rush and very emotional

  • Back from QE Hospital, Birmingham. Member of ENT team examined throat with scope, and could see nothing. No redness or lumps. She went in twice to check on that side. Said that I still need to continue with 14 day fast track referral to local ENT team as I have some symptoms which need further investigation. But I’m both confused but extremely happy they could see nothing.

    She said she looked at the right sinus area, where the London area said that they detected a lump, and could see no lump.

    I still feel something, and cough up blood each morning, so I guess they want to do some more checks via local ENT team. They may want to do CT scan etc.

    Will update this thread was my tests progress.

  • Crikey.....you've had a long night.

    Good luck

    I hope there is a simple explanation 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • So do I. I was so relieved and embarrased yesterday. This morning that spot with soreness is back as is my nasal voice, and I've just brought up the usual mucus blob with blood in it.

    It must be in a corner they can't see - I'm guessing the issue is deeper and hidden by larynx? She said there was no tell tail redness or change in mucus lining, or lack of symmtery that she could see.

    I've been called into the local Hererford hospital for 6th September - I'll push as hard as I can for them to look deeper - not sure how they do that. We need to see where the blood is coming from.

    What should I ask them to do to look deeper do you think? I'm a little nervous about being fobbed off with a flexible laryngoscopy, when that is clearly not seeing the issue.

    (My last naso-endoscopy (all the way to the duodenum) was two years ago, but that was looking at oesophagus primarily.)