Update on No Primary

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Hi,

Just an update on my journey so far.

After enlarged Lymph node on right side of neck diagnosed to be cancerous end of January quickly followed by  PET CT /MRI Scans /Tonsillectomy/Biopsies of various areas and finally neck Dissection and Mucosectomy 2 weeks ago I have been advised that no Primary found in any of the biopsies/scans.

Consultant advises that either my immune system has dealt with the primary and surgery to remove the Lymph node structure has removed the cancer which was in 1 Lymph node with no further spread or the primary is so small that it is currently undetectable.

I have now been advised that I will have 30 sessions of Radiotherapy over 6 weeks and 6 sessions of chemotherapy starting in around 4 Weeks. I have an appointment again tomorrow to go through the finer details.

Hopefully another step in the right direction on the road to recovery.

Regards
Paul

  • Hi Paul

    Good luck with the treatment....not an easy gig....some tolerate the treatment better than others ....hope that you are one of the lucky ones.

    I had 30 radiotherapy and 4 out of 6 planned chemo (cisplatin)....PEG feeding tube fitted....which was a lifesaver.

    Take care and best of luck

    Peter

  • Hi Paul. I have had a tonsillectomy and a neck dissection. On Monday I start 30 sessions of adjuvent RT - 'belts and braces' as they believe that they got all the nastiness out but they want to flatten anything that might be lingering. 

    My neck dissection has healed well (6 weeks post op) and I feel great, but not looking forward to the next part of the treatment.

    Good luck going forward Paul Thumbsup tone3

  • Hi Paul There’s  lots  in here who have gone through chemo And  radiotherapy any questions just ask. It’s not easy but if I can do it I was 61 and niw fast approaching 6 years. Take it one day at a time m take all medication as directed my advise if offered a peg take it. My trust didnt routinely offer pegs but u consented to a ng tube if needed and it was my lifesaver from end of week 3 .

    Hazsl x

    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  

  • Paul

    Have a look at my profile.  Similar to your situation at the start.  It may offer you some food for thought.  If I had my time again I would make the same decisions.

    Peter
    See my profile for more details of my convoluted journey
  • Hi Paul, all the best with your treatment, it's good that they are throwing everything at it, to make sure they get rid of it. We're all here for you, if you have any worries or questions, just ask.

    Ray. 

  • Hi everyone, Many thanks for all your replies and words of encouragement  its much appreciated.

    After a meeting today to discuss my treatment I have been advised that the plan is to target the radiotherapy on only the right side of my neck were the initial lump was avoiding the throat area and left side of neck.  I was also advised that due to this they do not think I will require a feeding tube. Still going through the process but perhaps hopefully a little less  intense than first thought although I'm under no illusion that it is going to be easy just perhaps a little more manageable. Or am I been overly optimistic?

    Dental checks next week and treatment expected to commence in around 4 weeks.

    Regards

    Paul

  •   I was also advised that due to this they do not think I will require a feeding tube.

    Hi  

    it’s good that your team thinks the side effects of the RT won’t give you too much pain. Do please get confirmation from them that they will speedily place an NG tube if you do run into trouble. Best foot forward. 

    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

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  • Hi Paul

    I was not offered a RIG or an NG tube either as my radiotherapy was aimed at my jaw and not at my throat. Everyone is different but I found it was still a very difficult road  My mouth was full of ulcers making it very hard to eat. I was given some pink mouth deadening mouth wash that deadened my mouth for about 5 mins so I could try and eat some puree as fast as possible before the pain started again. It was not easy and I did end up  losing 10k.g. I wish that I had been offered an NG tube as I would definitely  have taken it. I was on a few pain killers, paracetamol, morphine and Fentanyl patches for a while On the plus side recovery from the radiotherapy for me was a lot quicker than for those who had it targeted at the back of their mouth and throat. I still  had the fatigue and pain but I did recover quite well about 3 months after treatment finished. It would seem it can be much longer for those who have it targeted at their throats as their swallow is affected whereas mine wasn't.

    Take the pain killers regularly as this does help and if you do end up being offered an NG tube go for it.

    Best wishes for your treatment.

    Lyn

    Sophie66

  • Hello Paul, just popping up to share my experience of chemo & RT which you can find on my profile. They had no problem finding my primary as it was advanced/T4. Treatment was tough but 18 months on I'm fine, touch wood. Wishing you the same luck!

    Catriona 

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Dec 2023 one year all clear. See my profile for longer story