Hello everyone, i have TN2N1M0 left tonsil HPV squamous cell carcinoma. Diagnosed 6th June 2024.

Nise247 said:

I want Cisplatin as it will be less impactful on my body and am worried it’s too late to request a change in treatment plan. 

I don’t know. Is it less impactful? Carboplatin is offered to patients who can’t tolerate cisplatin. I would phone your CNS to get your oncologists opinion before you start 

Hello & welcome!

I completed my treatment chemo/radio in Aug 2023  [right tonsil, TN3 N0 M0 HPV+]. I cannot add anything different to what others have said, although my experience did not involve a need for a feeding tube - I managed without it. I would say though that I personally found that taking one day at a time helped reduce the fear factor. Equally, and after a while, chatting to other patients who I began to recognise while waiting for radio or in the chemo suite. It helps enormously to speak to those who are going thro' it or have been. Reading this blog provided immense reassurance throughout. I wish you all the luck! Take care. It does pass quickly..   

Hi welcome from me I’m exactly 6 years on from my first day of treatment. I had 35?theotherapy and two of the planned 3  chemo theotherapy isn’t the main course of treatment so try not to worry too much about it. I was closely monitored  eye on my best advice is take all the medication that they give you for the anti-sickness questions. We  will always help mg blogswill explain how I got through treatment and I’m now happily living in my  life as I rid I’m held way through a 40 km bike ride in southern Spain 

Hugs hazel

Oh wow! That’s amazing. May I ask, was that your choice? 
my oncologist did say that HPV driven cancer is highly curable, which gave me reassurance. 

Nise247 said:

Oh wow! That’s amazing. May I ask, was that your choice? 

According to my scans I had no nodal spread, which is the cut off. So I was lucky. I spotted the cancer early before it had spread. Nevertheless I had a look at my diagnostic MRI at my last appointment and pointed out a slightly enlarged node. My oncologist glossed over it. I guess he thought the RT would take care of it. He was right. 
I wouldn’t not take the chemo if it was recommended though. 
I would definitely go with the oncologists view. They know much more than I do. 

Thank you. I wasn’t sure if I left it too late. 

Thank you, I’m so pleased yours was caught early

Thank you so much Ray! You have all reassured me so much and my anxiety has reduced significantly. You’re all so kind. 

Hi Nise247

Being anxious sadly is the norm it’s the fear of the unknown but hopefully once you actually start treatment it will subside.

You can listen to music either a radio station or your own playlist on your phone this really helped me as I am claustrophobic.I also go through and plan my dream trip in my head during all scans etc and also remeber favourite holiday moments …. it’s about keeping that anxious brain busy , some people can control their fears and just relax( you can ask for diazapam taken 30mins before which will just take the edge off).

I had a pretty tough time T4 right tonsil spread to base of tongue activity in left and several lymph nodes,7 weeks radiotherapy and 2/3 chemos, spent most of it in hospital but I would do it all again to get the same result……I am one of the lucky 90% with HPV driven cancer that treatment worked for and now just returned from my second holiday and enjoying life.

Still have PEG( saved my life) and other side effects but it was worth it to still be here with my family and friends x

Sending you the strength and believe that you can get through this x

Debbie

Thank you so much Ray! You’re all so kind and giving me lots of reassurance for tomorrow