Newly diagnosed tongue cancer - awaiting scan results

Hi LDDR Welcome to our small knit friendly community so sorry  you  find yourself her. I am Hazel almost 30 month post treatment for tonsil cancer with several affected lymph nodes.Its  never the place you want to be  but we will all help as much as we can.Once treatment plan is in place everything falls into place and it’s been heads down and we will all help as much as much  we can.For me I faced it heads on  the blighter wasn’t going to get me.I had too much living to do and now 30 month on lockdown apart I am living my life .When you feel,upto it I have a blog with links to others details below .All,I will say the treatments pretty brutal if yiu end uomonnthe radiotherapy route. But more of that later cancer is only a word and it wasn’t and doesn’t define me.

One question  to ask is is the cancer h p v driven ?

Keep in touch Hazel x

Hi Hazel, thank you for your speedy reply :-) Sounds like you had the right attitude in fighting your cancer! Great to hear you are living your life well. Did you have neck dissection as part of your treatment? And was your speech affected alot?

Our consultant didn't mention anything about HPV although I had read about that. He didn't mention the stage either so I think we should ask that on Friday. Anything else we should be asking at this stage?

thank you, Lauren x

Hi

Welcome and you have made an important first step in taking charge of this cancer. I do believe that you have to take charge and control the situation and not let it dominate you and your husband. That said it will become all consuming for some months as you both worth through his treatment plan .

Many of us have followed differing paths through treating this cancer so all questions and we will do our level best to give you advice as to what worked for us and may be good for your husband. 

Don't forget your own needs. Partners have a tough time during the treatment as you are "only along for the ride " whereas your husband has more contol over what is going on.

Appologies if this makes little sense. I only came round from a GA biopsy on my tongue 3 hours ago!  But it does go to show that what they do to you is manageable, but is tough.

Good luck and we're here for you

Hello Lauren and welcome to our little community. A diagnosis like this of course leaves you scared and apprehensive for the future. Before I can find any words of wisdom I’d like to assure you that oral cancer caught early is eminently curable a fact to which most of  us here will attest to. 
Please don’t try to second guess what might happen next with Google. Dr Google is not one to trust at the moment. Much information is out of date and inaccurate. 
one you have a diagnosis and a treatment plan everything will start to fall in place. 
Fingers crossed for  the next consult and come back to us when you know more. 
We are full of tips and support to get you both through this. 
I was 67 when diagnosed with tongue cancer and I have just celebrated 2 years in remission after radiotherapy. I’m living a full life in splendid isolation in the Welsh countryside. 
Chin up. You’ll get there. 
( look, even Peter has managed to text you from his sick bed with advice....

PS  Macmillan has a section on questions to ask  have a look  they are quite broad but there might be something of use  

Take a notepad in with you and a list of questions  

Make sure they explain anything you don’t understand 

www.macmillan.org.uk/.../questions-to-ask-your-healthcare-team

Hi Peter, thank you and hope you recover well from your GA and hope the biopsy is ok. Yes, we can hardly think about anything else at the moment but that's to be expected as we only found out on Monday. We are lucky to have a good support network around us so we'll definitely need that for the journey ahead. I'll keep you updated, thank you.

Hi Lauren and welcome

I was diagnosed with base of tongue cancer in May 2018.  I had robotic surgery to remove the tumour plus a neck dissection followed several weeks later with radiotherapy.

As has been suggested you'll feel much less anxious once you have a proper diagnosis and a treatment plan is in place.  Many of us have been through similar experiences and are still here to tell the tale.  Lots of support and advice available on the forum when you need it.

Wishing you all the best for Friday.

Linda x 

Hi Lauren no I didn’t have neck dissection as one of my pesky lymph nodes was close to spinal cord .

Questions if radiotherapy hiw many. Are they looking at chemo.whats hospitals policy on peg feeding or n g tubes being fitted. 

Speech nope didn’t affect me in slightest did suggest a bell so I could eat hubbys attention ummm he swore at that suggestion. You’ve made the hard decision getting seen and coming in here 

Hazsl 

yes forget Dr  Google that’s the best advise much of it is out of date and incorrect you will scare yourself silly. stick to tried and trusted sites and people who have been there and done it.

Hazel

Good morning  LDDR, this is exactly what happened to me reference the mouth ulcer and like your husband, i was fit and healthy and a 48-year-old working in a shipyard. My tumour was the floor of the mouth and a small part of my tongue, it certainly is a shock when you come out after the consultation being told you have cancer, i was taken to a side room so someone could talk it over with me as i was on my own. Normally these consultants are pretty good in judging things so it good news that he thought it was localised. I did have surgery and radio and chemo afterwards, my surgery included a full neck dissection removing the tumour and some lymph nodes. I will not go into any more detail about the operation as we don't know what his consultant plans to do as every case is different. All i can say is that the recovery rate is very good with excellent surgeons and support staff plus technology has moved on since 2008 when i had my first operation. Wishing you both all the best for Friday, fingers crossed, take care.

                                                                                                 Chris x