Hi... I'm new here.

Hi Nora and welcome. Sorry to see you here but if you have cancer it's a good place to be for advice.

I shall tag LindaWT who had something similar to you and similar surgery.

T2 by the way means that the cancer is larger than 20mm but smaller than 40mm. It's an recognised international staging.

It good that you are HPV positive because it means that if you have to have radiotherapy there is an excellent cure rate.

Try not to worry about other people. You need to concentrate on yourself and let them look after you.

Stick around, there is lots of help and advice here

Best wishes

Hi Nora Welcome from me as well I am almost 4 years post radiotherapy and chemo for tonsil cancer with several affected lymph nodes. You’ve come to the right place for help and advise. Take everything one day at a time baby steps. Put yourself first don’t worry about others . Dani has said the rest. Any questions just ask one of us will always try back to you. Your timelines similar to mine I was diagnosed 6 June 2018 now happily living my life. 
best wishes Hazel 

Hello Nora and welcome from me too, my wife had similar mental health issues to you so feel for you on that front as well.

One bit I'm a little confused over though, have your team made any mention of the possibility of having your jaw cut away if you don't go on the trial, or is it something that your husband has found in his research? I just say that because we have had many cases of tonsil cancer on here over the years and I've never heard of anyone having bone surgery unless the cancer has metastacised there, and you say you have no metastasis.

Researching online can be a scary and often misleading path, we always advise people to avoid it completely if possible, though the temptation is obviously great.

Nora B said:

We (my husband has done a lot of research he is a very thorough guy) found out that they basically stopped doing surgery as it became difficult for people to get over having they jaw cut away and then plated/pinned back in place and often couldn't eat,

The op you refer to is called a mandibulectomy. It’s not an alternative to trans oral robotic surgery TORS. It’s used as Mike says when the cancer has spread and wider access for the surgeon is needed. What is an alternative to TORS is a higher dose of radiotherapy which is what I had. TORS is used for small easily accessible cancers. 
I agree with Mike. Don’t get your information from Google. Ask your team. You’ll get better and more reassuring answers. 
Best of luck 

Nora keep off google there’s a lot of outdated info. I didn’t have any surgery just the standard chemo radiation. 
Hazel 

Hi Nora. Sorry you find yourself in here. I was diagnosed with SCC in my right tonsil plus one affected lymph node nearly two years ago. I was offered the choice of TORS or chemoradiation and they said that both were equally effective - about 85% chance of cure. I opted for TORS as I wanted the damn thing out, which was probably a bit of a knee jerk reaction upon reflection. I had my right tonsil removed and 29 lymph nodes taken out through a neck dissection and recovered from that quite quickly. I was hoping not to need the chemoradiation but the lower margin around the tonsil was ‘a bit tight’ due to it being close to the carotid artery. So I ended up having the Full Monty, i.e. chemoradiation, which to be honest was tough going and took a lot longer to recover from. But to be fair it’s pretty tough going for most of us in here as most of us seem to have ended up having the radiotherapy at least. Eighteen months post treatment and I feel very well, am living life 95% normally again and all appears to be clear. Of course you’re scared - it’s absolutely normal. We’ve all been scared. Sometimes I still am. But this treatment is amazingly effective and more than likely will result in a cure. All the best, M.

Hi Mike, thank you for your welcome I do appreciate it and it is nice to know that there is someone who has understanding of my MH problems as well.. I am pretty good at handling my MH now but it took me a long while to get to understand it and how it affects me.

With regard to the jaw cut away thing, apparently that is what they used to do to get at tumours there as they couldn't get the instruments in the space without doing so, the only reference my consultant made to it was saying that by using robot surgery they don't have to cut through your lip. But they did not offer me anything other that radiotherapy followed by chemo or to take part in the trial and have the robot surgery. I personally have not done any research, my husband does that. 

I have my appointment tomorrow to find out more about the robot surgery trial. I hope you are okay, I see you have had surgery also. 

Hi Nora and welcometo the forum.

I wasdiagnosed with base of tongue cancer in May 2018 and finished treatment in August that year.  My tumour was further down my throat than yours as it couldn't be seen and was missed by all the GPs.  It was only found when the ENT consultant used a nasoendoscope.

Your husband is absolutely right.  Years ago our cancers were treated with a huge surgical procedure but eventually it was found that they could be treated with chemoradiation which had less devastating long term consequences.

More recently many of these cancers have been found to be driven by HPV and affecting a much younger generation.   Research and various trials, plus advances in surgical procedures,  have resulted in alternative methods of treatment for HPV driven cancer which has found to respond very well to radiotherapy.

I was offered the opportunity to take part in a trial whereby I had robotic surgery to remove the tumour plus a neck dissection.  It was hoped I would not need further treatment but during the robotic surgery it was discovered the tumour had attached itself to a vascular vein so I had radiotherapy 6 weeks later to allow the surgical sites a chance to heal.

Robotic surgery  performed by highly skilled surgeons has been found to have a good success rate and is becoming much more widely used in the US and Australia and some specialist units in the UK.  

The surgery was quite long as I was having 2 procedures - 7 hours - and I was in hospital for 11 days - many people are in for only a few days.   My consultant had warned me that my throat would be extremely painful but I would have constant pain relief via a syringe driver that I could self administer.  Unfortunately for me this turned out not to be the case as I had an incident under the anaesthetic which meant I was unable to have strong pain relief and probably resulted in a longer hospital stay.  

My consultant also told me swallowing would be extremely painful and difficult for 4 weeks but after that it would be fine.  She was spot on!

I was given swallow and tongue exercies to do for the weeks leading up to the surgery to ensure they were both as strong as they possibly could be to aid recovery.  I was also given exercises by the speech and language team after surgery.

I was prescribed multiple medications to help with pain relief, including ones to anaesthetise the throat for swallowing, plus milkshakes to help keep up my body weight.

Please don't feel guilty about about your mum and relatives being worried.  Their reactions are perfectly normal and they would be devastated if you didn't confide in them.  My mum is an incredibly anxious person but despite this she was absolutely brilliant during my treatment.  It helped her anxiety knowing she could help and support me.

If you have any questions please just ask.  I'm more than happy to help in any way.

I will just reiterate what has already been said.  Treatment for HPV driven cancers has been found to have an excellent  success rate!

All the best.

Linda x

Linda you are an absolute gem. Thanks