Tonsil Cancer

Hello from me. I had base of tongue cancer (you have tonsil tissue in your tongue) three years ago and had 30 sessions of RT. It's not a walk in the park but doable. Your oncologist will know if your tumour is HPV + because the test is done at the biopsy stage so you could ask again...but as you say, most likely.

I'll tag Hazel RadioactiveRaz who had exactly the same as you. We both have a blog that might be helpful , the link to mine is at the bottom of this post, and if you look at Mark's profile here in the community his is an excellent diary of what you might expect Mark's diary

Stick around and ask about anything you need to know. No question is silly and somebody will be around to help

Best wishes

Hi from me as well. I’m also a member of the female h p b 16 + tonsil cancer with several affected lymph nodes club. My h p v was told to me by my lovely oncologist he was 99% sure at first meeting at 2 nd meet results were in and I was. . I was 61 when diagnosed now 3 years snd 4 months later still here happily living my life looking forward to our 3 rd post cancer Christmas .As Dani says it’s doable it’s not a walk in the park but if I a wimp can do it anyone can. My blogs below any questions just ask always  happy to help. 
Keep in touch let us know how Wednesday goes. This part the waiting’s the worst bit fear of the unknown.

hazel 

SpecRad said:

I meet the team on Wednesday so will have more of an idea of what's going on.

I know these days you can’t take somebody with you but take a notepad. Make sure they explain everything to you. Some people record the meetings on the phone. Good luck and let us know how you get on. 

Hi,

Welcome to the group. I'm 48 and about one year down the path from you, I was going through diagnosis this time last year. It was hpv+ tonsil cancer on my right side with 1 affected node. Been in remission since summer. 

Might be worth a quick call before your appointment. I went to the first on my own, but then they said my husband could come too as there is so much to take in. Even with covid restrictions he could also come to my weekly clinic during treatment. Worth asking. I always took a note book too, with questions I might forget and then for all the answers. 

It's a scary time, but this is very treatable is most cases. The folk on here really helped  me get through. 

My blog is linked in my profile if you tap my name. It rambles lots sorry!! 

Take care, Gill 

Hi SpecRad from me too and welcome to the forum.

I was diagnosed with base of tongue cancer (HPV driven) in May 2018 and had robotic surgery and a neck dissection followed 6 weeks later with radiotherapy.

Good luck when you meet your team Wednesday.   Hopefully you'll also get to meet your specialist Clinical Nurse.  Do get a contact number as they are brilliant as a first port of call for any questions or advice.

Linda x

Hi

I am a 61 year old woman who was diagnosed with HPV16+ tonsil cancer in August after finding a small lump in my neck.  I completed my 30 RT and 5 chemo on 5th November. I found this forum so helpful for answering all the questions I had. I am now in my 6th week post treatment and gradually finding I am getting stronger and able to eat more. Still a way to go …. 

Hiya! There are plenty of us in here who’ve been through this and can help you, so do keep in touch. It’s going to be a bumpy old road at times but it is doable and has an excellent track record of success. I don’t know about current policies on spouses accompanying patients, but my treatment ended nearly a year ago and my wife has still never met any of my team! To be on the safe side though, take a list of questions along with you, along with a note pad to jot down what they tell you. 
Be positive, stay fit and trust your team. One day this will all just a bad memory

Well done Marwari.  You’re doing really well.   I remember weeks 6-8 post-treatment were a real turning point for me. Onwards and upwards!  

Thank you everyone :) I met my nurse today and on Wednesday I meet everyone else. I've been told I can take my husband with me but it'll mess up the school run so I'm going alone. I'm not too worried about that though. My nurse has said she'll be there too to support if needed and I have a notepad full of questions! 

I'm so pleased to hear that this has had a positive outcome for you all and I can't wait to join that club too

Hi Excellent news. Our n h s do a wonderful job   Even now 3 years in my Macmillian nurse is stil available to me if I need her Good luck for Wednesday let us know how Wednesday goes when you’ve time.

Hazel