Newly Diagnosed with T3N2 epiglottis: Questions About Upcoming Treatment

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Hello everyone,

I recently received a diagnosis of T3N2 cancer on the epiglottis (HPV related) and have just finished my induction TPF chemotherapy. I'm now preparing to undergo chemotherapy with cisplatin and seven weeks of radiotherapy. I have some concerns and questions, especially regarding the possibility of having a PEG tube fitted.

I'm feeling extremely nervous and anxious about the idea of getting a PEG tube. Can anyone share their experiences with it? Does it hurt during the procedure?

Moreover, I'm uncertain if I should go through with having a PEG tube. Are there any guidelines or insights about when it is advisable to get one?

I'm also curious about the practical aspects of using a PEG tube. Will I have to rely on it for nutrition throughout my treatment, and will it affect my healing process once my treatment ends?

Any advice or shared experiences would be greatly appreciated. Thank you in advance for your support and insights.

  • I can’t speak from personal experience as I went through treatment and recovery with a nasogastric tube which was a life saver. I fed by pump overnight for 8 weeks from the middle of week 4 and made an uneventful recovery. 
    People do report that it takes a week or two to settle and can be uncomfortable till then. 
    You’re having heavy duty treatment and your mouth is going to get sore. If you lose weight you’ll be admitted into hospital which is something you want to avoid. 
    Guidelines? Listen to your consultant. 
    It’s a tough treatment but doable.

    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 Echo123. I had the same Induction Chemo as you followed by a planned 6wks of Chemoradiation, however I was only able to have 4 of the 6 Chemo due to side effects. 

    I have a RIG feeding tube in since end of February - so I can't speak re PEG insertion. I can tell you that I am very glad of my tube. With the loss of taste & the loss appetite in the latter stages of treatment, I would never have managed to obtain the calories & protein required for healing. 

    Everyone is different, there are people who manage without feeding tubes, but I wouldn't have been one of them. My Center puts them in before treatment starts so you have time to recover, but again, each place has its own policy. 

    Tina

  • Hello. I had surgery, PEG fitted then 6 weeks of chemoradiation (6xCisplatin & 30x radio) for tonsil & lymph node hpv 16+. The PEG hurt for about a week after fitting so I took paracetamol. Then the nurse (who came to the house once a week) loosened the clamp & it was fine. She taught me how to clean it, flush it & use it. By the end of week 3 of treatment I could not swallow more than sips of water. I then used the PEG for water, & had all meds in liquid form which I put through the PEG. The nurse suggested overnight feeding. She brought the small pump & trained me on how to use it. All liquid food was on prescription & was delivered to the house. I changed to a lactose free one after a week & it was fine. Yes the PEG was time consuming BUT it kept me alive. It took the stress of eating away & allowed me to attend appointments & rest in the day knowing that I was getting all the necessary calories. I taped the tube to my body & tucked it into joggers etc to keep it out of the way. I experimented with various soft foods each day, a tiny teaspoon at a time. Recovery is slow & distressing at times. You feel that you’ll never eat again. But little by little you heal & are able to eat. I had my PEG out at 11 ish weeks post treatment. I then supplemented with Scandishakes. I am now 17 months post treatment. 
    Feel free to ask anything.