Tumour found beside abdomen 3 years post treatment for Head and Neck - anyone have experience?

  • 5 replies
  • 46 subscribers
  • 258 views

Hi all, I had 30 days radiotherapy/6 days chemo in 2022 for Head and Neck cancer (T1N2 P16 Positive SCC Tongue base).

Thanks to our wonderful NHS I had a 'complete metabolic response to treatment' in June 22, and have lived a positive and healthy life up until January this year. Following visit to GP/ED for what I thought was a 'stitch', following a ct scan I was informed there was a large malignant tumour between my abdomen and spleen, and a biopsy of a node in my liver lining has confirmed there has been a metastatic spread from my previous diagnosis.

After review , there has been no evidence of abnormality in the head/tongue/neck.

I have been passed between HaN, UGI and oncology, and all have said this is 'very unusual'. I am due to start treatment next Friday, which will be either chemo or immunotherapy.

I found this forum very helpful back in 2022 and was wondering if anyone had any similar experience, or indeed, any advice ?

Thank you 

  • Hi. Have a look at the profile of one of our members who is more than a year clear of Pembrolizumab and still well  

    You’re right that this is rare but there have been good results with immunotherapy 

    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 mentioned, I also had HPV HaN cancer (tonsil) that treated with chemoradiation back in 2020. But then in 2021 a new scan showed that I had developed many tumours across both lungs. At first the oncologist thought that this was an aggressive new tumour, but subseqeunt tests showed that it was metatstic, from the original tonsil cancer the year before. 

    I was put onto immunotherapy at the end of 2021, and what was once a terminal diagnosis has become a bit more uncertain. That is, I'm now no longer on any treatment, and scans to date still show no evidence of disease. That is the immunothearpy had completely reduced the size of the existing tumours, and no new ones have appeared so far. 

    In general, immunotherapy has fewer side effects for most people than chemo. But if side effects do become apparent, they can be more severe and less predictable. 

    If you have any more questions, I'm always happy to answer where I can. But I also blogged about my experiences of having both bouts of cancer here: https://ansmackay.wixsite.com/uclgeography/post/stage-4

  • Thank you very much Crofterlad. You have provided a very clear picture, which is very helpful, and your situation is indeed similar to mine. I may well come back to you further down the line

  • Thank you Dani. Good call and you will see Crofterlad has been in contact.

  • Good luck. Keep in touch if you feel you can. Let us know how you get on. 
    Anson is a great ambassador for Oracle and is an inspiration. We are so grateful he helps out here too

    Thanks  

    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