Newbie with new diagnosis

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Hi All.
My story; sore tongue on RHS for 2 or 3 months and getting worse. Made Drs appointment who called me in there and then. I was fast-tracked to Addenbrooke’s Hospital.

About 6 weeks later, and after several appointments with Maxillofacial and ENT depts, CT scans and biopsy, I went for a tonsillectomy as RHS tonsil is enlarged with 29mm ‘lump’.  Just before I was due to go to theatre, consultant tells me the biopsy result is back, showing cancer. Tonsillectomy was cancelled there and then as it was deemed not necessary.

MDT meeting the following day decided I should have an urgent dental assessment (Wed 29th), then ENT appointment on 5th Jan. Not formally on the ‘pathway’, but biopsy shows “likely carcinoma”. Biopsy referred back to Histology.

Still feeling a bit numb, to be honest. Not sure how to feel. One thing I do know; I want treatment to start as soon as possible, as I’m fed up with the pain now. It’s getting worse by the day, albeit slowly. Doctor prescribed Oxycodone, and that is very good indeed. Looking forward to reading other people’s experience too.

Regards. 

  • Hi Barney. Welcome to the community but so sorry you’ve found yourself here. 
    I can’t quite see why the histopathologist is having another look but likely they are just making sure. 
    It’s just a case of waiting. Some advice I’d give perhaps is to keep busy and stay off Google. The best places for advice are your team first then here. 
    Let us know how you get on 

    PS. As you are on Oxycodone which is an opioid you are at risk of constipation  so don’t forget your laxatives. 

    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 Beesuit, and thank you.

    When I went for my tonsillectomy, they still hadn’t got the results of my biopsy from 21 days earlier. The surgeon/consultant chased them and I think they had a quick look at it there and then and gave him the initial diagnosis? That’s the impression that I got, anyway. It was enough for them to cancel the unnecessary tonsillectomy, but maybe the MDT feel a more detailed/lengthy look at it was required?

    I’m guessing…

  • Yes. It probably hadn’t got processed and somebody did give it a quick look. Not everybody has tonsils out anyway. My cancer was in the tonsil tissue at the base of my tongue so there was no need but others have had just RT. 
    Horrid but it’s wait and see. If the PET shows cancer they might just go back and whip your tonsils out anyway. 

    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 Barney Welcome from me as well, yes will echi what Dani  said please keep off Dr Google  stick to us in here.I had tonsil cancer with several affected lymph nodes.I only had biopsy then 35 rounds if radiotherapy and 2 of planned 3 chemotherapy. Once you’re in the system things do move along after m d t will usually be oncologist then dental check mask made, mri with contrast ,some of us have a pet Ct scan as well. Then the wizards in radiology do your individual planning. Any questions just ask someone will get back to yiu between us we cover most eventualities.

    Numb feeling us about right, weird dreams etc all par for the course. The waiting is the worst part.

    keep in touch 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/

  • Hi Barney. Look here at the link I made

    Mask Making Video

    When you have radiotherapy the X-rays have to be targeted accurately every time so you have to be in the same position at each treatment. You have a plastic mask made which anchors you to the treatment table under the radiotherapy machine. Don't be alarmed. The fitting feels like a warm flannel on your face and the techies talk you through it. Some masks come with pre cut eyeholes but if yours doesn't ask them to cut eyeholes. It reduces claustrophobia no end

    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
  • Hey Barney Rubble, just wanted to say hi, so sorry you find yourself here. I had my treatment at addenbrooks too (HPV tonsil cancer) Once diagnosed I had a week and a half before starting treatment so was very quick for me, hopefully will be for you too as the waiting is horrible. I had no surgery, I had 30 radiotherapy and chemotherapy along side. It’s going to get rough for a while but you’ll come out the other side

  • Hi Barney and welcome

    Hope your dentistry goes well today.

    I was diagnosed with base of tongue cancer in May 2018 and completed my treatment in August that year.

    Lots of help and support available on the forum if you need it from people who have been through similar.

    All the best.

    Linda x

  • Thanks you all for your messages. My dental assessment today has ended up with me requiring 2 extractions. One of them deemed “at risk” after my radiotherapy (which starts in 3 weeks), the other one is a badly botched root canal done by a dreadful NHS dentist some years ago. 
    Consultant: “Even without radiotherapy, I would recommend removing that tooth. It has been done very very badly and has a chronic infection”.

    So, that’s something to look forward to next week…

    I took a peek at the computer screen while in the chair, and it seems that the 2nd look at my biopsy has confirmed SCC.

    Last Christmas was kidney stones, this Christmas, cancer. Can’t wait until Christmas 2022 SmileRolling eyes

  • Good to get that dental work done promptly.  I wonder whether the infection is causing some of your pain?

    My husband had kidney stones a few months ago - he was in agony so don't envy you that!

    At least you've had your biopsy results confirmed too.  Hope your meeting on the 5th goes well.

    Fingers crossed for an uneventful Christmas 2022 healthwise!

    Linda x