Newly diagnosed tongue cancer - awaiting scan results

Hi Welcome to the forum, but sorry you found yourself here.

The feelings of despair and disbelief upon getting diagnosed are very familiar to me, its totally natural and this site has helped a lot.

Your partner is a similar age to myself, though it sounds like your partner has far less spread than i did, the main thing to know is this is very, very curable. I was diagnosed late july (tonsil cancer with spread to the lymph node) and a few weeks ago was told they cant detect cancer anymore in my body. 

Recovery for me was gradual, i would say the first 8 weeks following treatment were quite rough, but i really turned a corner about 12 weeks after treatment and started eating normally again.

It is - eminently beatable.

Other than that all i would say is - as others have mentioned try to avoid googling, and i would ask about HPV when you can.

Given your partners age and non smoking status, i would expect it to be HPV related (but i am not a doctor so definitely check)

Trev

Hi there, thanks for sharing your story, I hope you're doing well. My partner is going in for surgery tomorrow to have a partial glossectomy. He will probably be offered neck dissection further down the line although it hasn't spread to lymph nodes but I think they just like to do this as a precaution. I did ask about HPV and he said it wasn't but I think he might check it again after they take out the tumour.

We both feel relieved that we have a plan in place but are nervous about the surgery but good he's getting it done! He already had some discomfort after his incisional biopsy late December so atleast he has an idea how he'll be feeling but I think this will be much more painful . I will keep you updated! Hope everyone is well. 

Don’t worry about HPV status. It’s important with cancer in the oropharynx but I think only 5% of oral tumours are. I’m crossing my fingers your partner has an uneventful time in hospital and that he’s home soon. Best of luck. 

Thank you for updates as Dani says h p v is more important in orapharangeal cancers towards the back of the throat. Once you’ve got a plan in place everything just follows. Keep us in the loop as and when you can 

Hazel x

Hi all, hope everyone is well. Update from me: my partner had a rough week last week as had lots of bleeding and his uvula was damaged in surgery so made it painful to even have liquids! Went back to get the pathology results on Friday and he's now booked in for a neck dissection on the right side only on Wednesday. Our consultant said it's more of a precautionary operation as the tumour showed aggressive features. They are also taking an extra 2mm from the tongue so they can get clear margins. 

Just wanted to ask does the neck dissection make it difficult to eat? Or is it just limited movement for a while? We had a meeting with the physio on Friday and she mentioned about maybe getting problems with his shoulder.

thanks in advance for any advice!

Hi LLDR

thats rotten that your husband has been in so much discomfort but it’s amazing how quickly the body heals. 
The surgeons are pretty nifty with these neck dissections and place incision lines in natural neck creases. I don’t think it makes eating difficult though there are sometimes movement problems depending on where they go. He’ll get exercises to help that and the swelling that is inevitable. 
Is there any news in whether he is having radiotherapy?

Best wishes

Hi Lauren

My neck dissection made no difference to my ability to eat.

Mine was on the left hand side which made the left side of my face numb including.my ear down my neck and into the shoulder.  Due to the inevitable.nerve damage that occurs I was unable.to lift my arm out to the side and had a very weak shoulder and limited movement in my neck.  I was given exercises to do for my neck and shoulder and also saw a physio at the hospital for several months to help regain  mobility in my arm, neck etc.  

Now that the nerves are repairing I have much less numbness in my face and have regained full movement in my arm although my shoulder is still weaker on that side.

Good luck for Wednesday.

Linda x

Hi Lauren. I had a right neck dissection in October and, like Linda, was numb from my earlobe to my shoulder. I also had a droopy lip and lopsided smile but was assured that it was only bruising to the nerve and that it would right itself. It did after about ten weeks. I also had few problems eating after surgery. 
Feeling is gradually returning but my collarbone is still totally numb and my neck very stiff. This was likely exacerbated by the 30 fractions of radiotherapy which ended in January. I also have a saggy underchin due to lymphodema, yet another little indignity that this disease can throw at us, but I’m following Dani’s exercise clip and doing regular exercises to try to get rid of it, as well as exercises to regain movement in my right arm and shoulder. I’d say movement wise it’s about 90% back to normal. It always hurts more when I get up in the morning or if I’ve been slouching on the sofa watching a film! 
As everyone keeps saying, it’s a slow process - almost imperceptible at times in fact - but things do get better. I’m into week 7 post treatment and there are definite signs of improvement, most noticeably in the reduction in throat pain. 
Hope this helps.

I had a full neck dissection during my first operation, my eating involved soft food and plenty of dairy ie pot desserts like yogurt, trifles with cream, and soups but after about three months i was making big improvements. Again i did get stiffness and pain on my left arm /shoulder due to nerve and muscle damage but a few exercises sorted it out. He might have to have a feeding tube if he is struggling to swallow now it could get worse with the neck dissection His stay in hospital should not be that long as they send the patients home with some of the staples and stitches still in. Hoping all goes well for him on Wednesday, all the best to you and your partner, take care.

                                                                      Chris x 

Hi Dani, no mention of radiotherapy yet, I guess we'll have to wait until the nodes have been looked at post surgery. On the positive side his tongue is looking so much better than last week! Although they are taking a tiny bit more out today!