Tongue Cancer

Hi Guys, well here I am again asking for some help and reassurance.

As mentioned before 5 weeks ago I had a partial glossectomy, then two weeks later neck dissection on one side.

I have found the whole experience, like probably a lot of other people so traumatic! I think I mentioned before that they removed 20 glands, but sadly I heard today that they have found that one of my glands has been affected.  They are arranging for me to see an oncologist next Friday to discuss my treatment, probably Radio Treatment.

I do not know of anyone who has experienced this, and I am absolutely terrified! I think probably because I expected to get the all clear, now there is another hurdle to climb over.

My consultant has told me that it is very small, and is still at stage 1, so that must be encouraging!

I would appreciate feed back from any of you who can guide me with my through this.

Thanks

CarolAnnSusan

Hi Carol

It’s good news that the cancer is small but having found spread to one of your lymph nodes your team have to make sure they get rid of all of it. 
Radiotherapy is a hard and difficult treatment but doable as so many here can confirm. 
I had six weeks of RT for tongue cancer over two years ago and I’m living well with few but bearable side effects. 
The best thing to do is to come back as and when you need help with things as they crop up as trying to assimilate the whole process is information overload 

Your oncologist will go through side effects with you but nobody has all of them. 
Basically they boil down to mouth burns and ulceration ( called mucositis) and inflammation of the skin of your neck. 
You will suffer a lack of saliva to some extent and it may become impossible to eat to such an extent that you might need a tube to be fed. 
Pain can be mitigated to make your life easier and your team will look after that. 
Don’t panic. It’s not easy but taken a day at a time you will do it. 

Hi Carol 

please don’t stress about it.Radiotherapy isn’t a walk in the park but it’s doable I am a wimp snd I did 35 radiotherapy and  2 chemo. Now am 31 month post treatment my cancer was also in several lymph nodes the treatment zapped it sll. Am living my life to the max even now am still getting small improvements. Take Dani’s advise don’t try and take it in sll at once. Baby steps are the way. Any questions one of us will always  get back to you. You’ve come this far you can do it. 

Hazel x

Thank you Dani, I appreciate you talking me through it. Carol x

And thank you Hazel, I hope I can live up to what you and Dani have been through! Carol x

Hi Carol

you will get there if you want to chat send me a friend request if there’s anything’s you want to chat about. 
Hazel 

Hi CarolAnnSusan, sometimes it takes a bit longer to get to the bottom of any cancer , it took my team three years to finally halt mine . In a way its good they have found these problems now because the earlier they do the better the chances with the treatment and recovery. I had radio and chemo after my operations where i did not suffer any bad side affects , mainly tiredness and the soreness of the surrounding skin. Hang on in there you and your team will get there in the end, wishing you all the best, take care.

                                                               Chris x

Once again Chris, Thank you. I have to say I am totally ignorant of all this, I have heard so many stories about Radio treatments side effects, I just assume I am going to have them all.

I know I should wait to  see my oncologist on Friday to discuss all this in detail before jumping the gun on everything, I suppose I am just so scared I am just not thinking straight.

Anyway, the information on yourself (which is horrendous in itself) has reassured me in some way, that not everyone will have all the side effects that could occur.

Thank you Again

Carol x

Hi

You are very similar to me, but reversed as they found mine via the lymph nodes and over a year later found the primary in my tongue. 

Hearing news like that is a setback, but look at it as the safety checks have done their job and detected a small amount of spread so now they know they need to bring in the next line of defence.  Lots of people can help with the RT as I've not yet had to use that line of defence - and hope not to (just yet)

If it helps you can PM me 

Thank you for your input Peter, it helps me a lot. Carol