Awaiting full diagnosis

Not many at all   They used to be routine now seems lije chemo radiotherapy is offered. 
Hazel x

Hello everyone 

sorry I’ve been quiet there’s been so much going on! 

They found the primary cancer in his right tonsil and it is P16+

The consultant said it would be standard in a lot of departments around the country like you’ve said now to do radio and chemo, but they do some pioneering robotics surgery in guilford which is what he has opted for. They say there is a 60-70% chance he won’t need chemo if he goes for this, and the radiation dose would be smaller too. 

they will do a neck dissection via this as well as oropharongectomy (think that’s righ) where they will remove tissue from round the tonsil that had the tumour

depending on what pathology shows will determine whether he just has lower dose radiotherapy or if he needs additional treatment 

the dr says the lymph node seems encapsulated which is good. He said 85-90% of tonsil cancer patients are disease free at 5 years

im still very scared as I know he’ll have a pet ct 3 months after treatment. He could be in metabolic remission at this point but we won’t know if it will come back in that 5 year period before they declare ‘cure’ 

we are going away for the weekend before isolation and surgery a week tomorrow 

Surgery if they can do it is great. It would be marvellous if they could de escalate the RT dose too. As for remission the longer you are NED the  more likely you are to remain so even past the statistical five years. 
Have a relaxing time away and try not to think about it. 
There are masses of us alive and thriving. Keep in touch with how it goes. Best wishes 

LindaWT had robotic surgery and I’m sure she will be along soon to chip in. 

Hi Cat

I had robotic surgery in June 2018 to remove a tumour from the base of my tongue plus a neck dissection.

Have you been given any indication how long your partner will be in hospital for?

Have a lovely weekend away.

Linda x

And don’t forget HPV positive SCC is really sensitive to treatment and cure rates are high. 

Thank you Linda and Dani 

consultant says he sent someone home today 24 hours after surgery. He said his average discharge time is 48 hours. 

I know 85-90% applies to tonsil cancer generally and not necessarily HPV ones so I should try and be positive 

robotics surgery sounds quite cool to me I’m very impressed with the team they’re being very good to us both xx 

As Dani pointed out, HPV driven tumours respond very well to treatment.

I'm sure your partner's team will also tell you but do make sure your partner keeps up with pain meds that are prescribed after the op.  Much better to stay on top of the pain.

Do also ask about gentle exercises to do after the neck dissection.  They help with keeping the shoulder and neck supple.  I was advised to start mine about 4 days after my op.

Linda x

Thank you both 

Hi Cat good to hear from you enjoy your weekend away try not to think about csncer you snd hubby enjoy food snd keep in forefront h p b driven tumours respond well to treatment. I’m sat on deck if car ferry after 9 blissful weeks in Murcia Spsin living my life. I’m 3 years snd 3 month post radiotherapy for tonsil cancer with several affected lymph nodes. Plus I’m 64 snd have ridden 1100 km on my bike. One life life it .

Even better if they can de escalate the radiotherapy, but even if they can’t I did 35 sessions. As Dani says the longer time goes on the less chance we have . Keep the mantra HPV driven tumours respond well 

Hazel x

That’s a good mantra Hazel, I might put it on my walls. 

I’ve booked some good food for the weekend and I’m looking forward to spending time together. 

im hoping the surgery lets him dodge chemo and have fewer side affects. He’s naturally very positive but I can tell he’s scared about the op. 

xx