Starting treatment on the PATHOS trial

FormerMember
FormerMember
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I was recently diagnosed with HPV positive oropharyngeal cancer in my right tonsil and a single lymph node on my neck. TNM classification is T1 N1 M0.

I've chosen to take part in a phase 3 trial called PATHOS and on Thursday 8th April, I'll be having surgery through my mouth (endoscopic surgery) to remove my tonsils (a tonsillectomy). My surgeon is also removing lymph nodes in some areas of my neck by means of a neck dissection.

After my operation, the cancer that has been removed will be sent to the pathology department to be looked at by a pathologist. The pathologist will look at the cancer under the microscope for features that can help predict if I'm likely to benefit from further treatment with radiotherapy or radiotherapy combined with chemotherapy.

I've already been told to expect further treatment but will need to wait on my consultant advising following the pathology whether a) No further treatment is required (unlikely) b) radiotherapy is recommended or c) if radiotherapy will be recommended with our without treatment with chemotherapy.

Wish me luck. Happy to answer any questions about the trial and hear from anyone else who might have participated in PATHOS.

  • Hi the RRC

    Welcome to the club no one really wants to join. We are a smsll knit community who try to help each other. I am 32 month post radiotherapy for tonsil cancer with several affected lymph nodes. I had 35 radiotherapy snd 2 chemo. Look forward to your updates. I’ve a blog details below 

    I  was  T2N2Nm Also  h p v 16 positive. If you do need radiotherapy or chemo as well treatment s hard but I did it snd now living my life to the max

    Hazrlb

    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  

  • Hiya. You have exactly the same diagnosis that I had last August. I too am participating in PATHOS. I finished treatment on January 2nd, am feeling well and eating pretty normally. Good luck with the op Thumbsup

  • FormerMember
    FormerMember in reply to MarkEL

    Thank you, glad you are well and eating normally. Just read your bio which was really interesting and helpful. 

  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Thanks Hazel, I'll definitely have a read through your blog. Glad to hear you're living life to the max ThumbsupGrinningI've started some updates of my own too at www.caringbridge.org/.../rrc

  • Oh, glad it was helpful.  Sorry it’s a bit long - it just grew! I really need to try and turn it into a blog. 

  • FormerMember
    FormerMember in reply to MarkEL

    It was good to get all the info. Just hope my op goes as well as yours seems to have went Thumbsup

  • You’re welcome will give yours a read as well 

    Hazel 

    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  

  • Well I only had the one tonsil removed so there wasn’t too much to heal I guess. Even so, after four days you should really begin to be feeling a lot better. (I’ve often wondered why they didn’t do both while they were in there!)

  • Glad to hear about the 4 days to feel better, had both tonsils and base of tongue removed on weds and feeling a bit rough today although not as bad as I expected. Seems to be the tongue more than the tonsils causing issues, wierd getting my head round swallowing at the moment.

  • Hi Julie. Glad it’s all done. I didn’t have the tongue done so I can imagine that’s quite uncomfortable on top of the tonsils too. Still, you’ll be getting better a little bit more each day. Keep on top of the painkillers so you’re not chasing the pain and you’ll soon start to feel better. You’ll be back home before you know it!  All the best.