Hey Simon,

This is exactly the situation I find myself in at the moment.  49 y/o man with similar situation (left sided lymph not right). I've also had an exploratory surgery to check tonsil mass is operable / biopsy. 
 

I am incredibly nervous about what is coming up - presumably a big op and then chemo/radio so I'd be super grateful for any pointers/tips/reassurance.

Thanks,

James

Hi James,

Sorry to hear about your Cancer. I'm not sure on what treatment you will be having, I had both Tonsils removed and had a Neck Dissection done on my right side to remove the Secondary Cancer that had built up in my neck Lymph Nodes. This was then followed by 6 weeks of Radiotherapy but luckily for me I didn't need any Chemotherapy.  I had my Operation in Oxford by one of the top Consultants there and thankful all went well in the end and I've just passed my first year Cancer free. 

I'm not sure if I had this treatment because it was the best option at the time or whether it was because of COVID as my Operation was done at the end of April last year. The Consultant in the beginning asked me if I wanted to either have Radiotherapy and Chemotherapy first to see if that reduced the Cancer or go straight in and have the Operation, I asked what his thoughts were and he recommended to have the Operation, so I did. 
 

I won't say everything was easy because it wasn't and it's still isn't. The biggest problem I had after the Op was they never put a feeding tube in and I couldn't swallow anything apart from the smallest amount of water for the first 3 days and even then it would burn on the way down. Eventually it was explained to me that the best way to drink was to hold the water in my mouth for a couple of seconds and then swallow, this was because I had to give time for my voice box to close first before the water went down which is why it was burning. Once I got used to that things slowly improved, however it still took me a good couple of months before I could get on to any solid food's again and I lost 3 stone in weight during that time. I still have issues today with swallowing, food can still get stuck and I have to cough it back up and there are times when I drink things like coffee or fizzy and instead of it going down it decides to go up and comes out of my nose, which is a great party trick. I have been told that this is expected and is probably going to be my new normal and under the circumstances and I'm happy with that. 
 

Overall I have definitely had some good and bad days, both mentally and physically, but I'm still here and that's the most important thing. There is a light at the end of the tunnel and you've got to do your best to think positively and fight your way though it but I also know that's easier said than done. Always talk to family and friends about it as it is good to talk and get things off your chest. 
 
I hope that this has explained a little bit of what I went through but we're all different and we all need different treatment. I'm happy to chat some more if you want and I wish you all the best as you move forward with your treatment. 
 

Simon. 

Hi James,

Sorry to hear about your Cancer. I'm not sure on what treatment you will be having, I had both Tonsils removed and had a Neck Dissection done on my right side to remove the Secondary Cancer that had built up in my neck Lymph Nodes. This was then followed by 6 weeks of Radiotherapy but luckily for me I didn't need any Chemotherapy.  I had my Operation in Oxford by one of the top Consultants there and thankful all went well in the end and I've just passed my first year Cancer free. 

I'm not sure if I had this treatment because it was the best option at the time or whether it was because of COVID as my Operation was done at the end of April last year. The Consultant in the beginning asked me if I wanted to either have Radiotherapy and Chemotherapy first to see if that reduced the Cancer or go straight in and have the Operation, I asked what his thoughts were and he recommended to have the Operation, so I did. 
 

I won't say everything was easy because it wasn't and it's still isn't. The biggest problem I had after the Op was they never put a feeding tube in and I couldn't swallow anything apart from the smallest amount of water for the first 3 days and even then it would burn on the way down. Eventually it was explained to me that the best way to drink was to hold the water in my mouth for a couple of seconds and then swallow, this was because I had to give time for my voice box to close first before the water went down which is why it was burning. Once I got used to that things slowly improved, however it still took me a good couple of months before I could get on to any solid food's again and I lost 3 stone in weight during that time. I still have issues today with swallowing, food can still get stuck and I have to cough it back up and there are times when I drink things like coffee or fizzy and instead of it going down it decides to go up and comes out of my nose, which is a great party trick. I have been told that this is expected and is probably going to be my new normal and under the circumstances and I'm happy with that. 
 

Overall I have definitely had some good and bad days, both mentally and physically, but I'm still here and that's the most important thing. There is a light at the end of the tunnel and you've got to do your best to think positively and fight your way though it but I also know that's easier said than done. Always talk to family and friends about it as it is good to talk and get things off your chest. 
 
I hope that this has explained a little bit of what I went through but we're all different and we all need different treatment. I'm happy to chat some more if you want and I wish you all the best as you move forward with your treatment. 
 

Simon. 

Thank you for your detailed reply, Simon.

I grew up in Headington so I know the area really well -  my Dad worked just round the corner.

I'm so glad you made it through albeit with some issues.  I've been told it would be no bad thing to put some weight on - and I'm now at my heaviest ever of around 14 stone so hopefully that gives me a little extra weight to play with!

It's my big treatment meeting today following last weeks exploratory surgery.  I'm nervous as hell, as you might imagine.  At least we'll know more tonight.

James

I hope everything went well today...

A good day, thanks for asking.

It's a HPV positive tumour - which means surgeon thinks my chances are 85-90% at one year.  I'm really relieved.  Having a gin and tonic - first drink for nearly a fortnight.  

I've got a tough run through to Xmas though - surgery on the 18th provisionally, then a few days in hospital and recovering at home until fit for six weeks of chemo/radio. 
 

Asked if I want to participate in the PATHOS study which is a complicating feature. Basically a random allocation to three groups, one of which has no chemo and one has a reduced level of radio.  Not sure about this yet.

Good luck to all of you with your treatment.

I found it, the treatment, to be the least frightening part of having cancer. It actually gave you something to focus on in your efforts to get better. The most frightening part for me was the run up to the diagnosis, the not knowing, and then the whole world being turned upside down. But hopefully you're past the worst of that now.

The more you learn about the disease, the less it seems like a bogeyman. And when you get through your treatment, which you will, you will have achieved something you probably thought too horrifying to imagine in the blissfully ignorant days before cancer ever knocked on your door. Over time, you will come out of it with a much more mature and profound understanding of life - and a new sense of what is important in life.

For situational reasons, I was treated by removing first the left tonsil, then on identifying a separate non-metastatic cancer 9 months later, the right, each with a precautionary neck dissection, which both turned out to be clear. With clear margins and a clear neck dissection, I avoided chemo & radio therapy twice.
 

My consultant says I was exceptionally lucky to identify tonsil cancer while at Stage1 not just once but twice: the sword of Damocles still swings above me, but in reality it swings above everyone's head. It's just that most people don't know it's there!

I was 49 at the start of it all. HPV positive.

2.5 years since 2nd operation.
2.5 to go.

Bon courage!

Hi James,

It's good to hear your in a slightly more positive place with your treatment and you know where all here if you need us..

Hi there. I have been reading this thread, and find much hope in doing so. My wife (who iam hoping joins this blog thingy) has been diagnosed with HPV + Tonsil which has spread to 2 of her Lymph nodes. She too has been accepted on the Pathos trial... I was just wondering how you have found it. Kind regards 

So, this is quite topical as I dropped out of the trial yesterday. The PATHOS study is an entirely reputable one exploring lower levels of intervention.  Basically if they can cure you with lesser levels of radio or without chemo then that's good because it minimises serious possible side effects. I would have preferred to stay in it for the higher level of monitoring and the sense that in some way I was helping future patients  

The reason I dropped from the study was that the study admin team repeatedly didn't answer my emails asking for allocation (in my case this only meant whether I got chemo on top of radio).  Effectively since my radical surgery I was left entirely in the dark about what was up ahead.  Of course I appreciate the pressures that everyone is under but for me,  the uncertainty was really getting to me and making me very anxious.  I already had provisonal appointments for chemo pre-assessment and my first chemo session booked in within a few days.  It made absolutely no sense to me that they hadn't allocated me to a branch so I knew what lay ahead.

When the trial coordinator finally got hold of me 3 days ago and told me I still hadn't yet been allocated and told me I would have to get in a car for a 2.5 hour round trip to the hospital where I'd already been twice that week "to get allocation rolling", that was the final straw.  I burst into tears and told her I wasn't in the right state to be setting off in the car to do something that could and should have been done weeks ago.

So there isn't clear evidence to inform my choice but I am going down chemo + radio + PEG.  I figure that I'd rather live with adverse consequences of over treatment than worry if I had a recurrence that chemo might have prevented it.

So now I know to expect,  I've got dates with first chemo/radio on the 29th at - apparently not allowed to specify name of hospital in the NW.

Although I was thoroughly *** off by the way in which the study participation was handled, since then I have received three phone calls to check to see if I'm okay and that I understand what's happening next, which has been nice.  It's a shame it took me throwing my toys out of the pram though!

Feel free to message me if you or your wife would like to chat.  It would be quite nice for me to share my thoughts and feelings with someone in a broadly-similar boat.  

Onwards and upwards!

Hi. Thank you for your reply, I feel your frustration with the trial team. My wife's treatment thus far has been exceptional starting with the GP, through to ENT and finally the Head & Neck team Consultant / Nurses.However we were not contacted until 2 days before Surgery (w/c 15th Nov) by the trial team, which meant there was no time for baseline tests, it certainly adds to the anxiety. It seem you are a couple of weeks ahead of my wife, she is really struggling with the pain after tonsil surgery and neck dissection this week. Not sure when we find out about what tranch she will be in, obviously hoping for reduced Radiation as the side effects seem tough. I hope you have found comfort in having a solid plan in place for your treatment. When my wife is feeling better she will join this group, I'm sure she will find it helpful over the coming months to compare notes. Best wishes. 

Please accept my friend request and I'll DM you my mobile if you or your wife would like to chat.
 

My post-op pain was really bad but three weeks on I'm not taking any pain meds and even eating crisps which was unimaginable a little while ago.

 James.

Friend request accepted. Thankyou James.