Hi I’m new here, diagnosed with tongue cancer

Hi Klarice. Welcome to our community 

There are a few people here with similar cancers. I’m sure they will pop on soon

Tell us a bit more about yourself if you want to and stick with us 

There’s lots of support here  

There is an organisation called young tongues that may help you. I’ll give you a link to their website. 
They also have a lively social media page. 
https://www.uclh.nhs.uk/our-services/find-service/cancer-services/macmillan-support-and-information-service/msis-news/young-tongues-global-peer-peer-support-group-people-who-have-tongue-cancer

Hugs 

Hi Klarice. Welcome from me as well. Sorry you’ve found yourself on here. The links Dani has given you are good. Stick on here as well will all help if we can. It’s the waiting and fear of the unknown. Trust your team snd try not to randomly google you will scare yourself even more. 
Good luck 

Hazel xx

Thank you for your replies. I had a white patch on my tongue for a few years had it biopsied last November it came back as dysplasia. Fast forward to July this year it’s an ulcer with a hole, causinme to lisp and moderate discomfort. This time they put me to sleep for biopsy as I insisted, took quite a good chunk, diagnosed Friday with what they think is stage 1. They want to do partial glosseomy with “ possible “ reconstruction they said about 1/3 of my tongue, aswell as a neck dissection. I am absolutely petrified. They’ve told me I’ll need a trach, but I’ve opted out of that unless absolutely necessary as I’ve spoke to a few people on that young tongues before I decided to come on here, who never had a trach. Apparently each hospital is different, very strange. I’m so so scared, scared to be away from my babies in hospital and scared of how I’m going to feel when I awake from this operation 

what are your stories ? 

Hi Klarice and welcome from me.  I have had 2 neck dissections and they (for me) were relatively easy to recover from.  My surgeons were great at hiding the scars so you really have to look to know I've had them done.  Maybe, for once, age is on my side with slightly (I am being generous with the slightly) flabby neck!!  I was due to have a similar operation on my tongue, but between diagnosis and when they opened my tongue up to remove the tumour it had gone, so they abandoned the operation.  I was assured that I would cope OK post the operation and advised me that I would almost certainly not need reconstruction.  But as it is at the moment I've no real experience of the after effects of that particular surgery.

You can expect to have radiotherapy post surgery if they have not managed to get all the cancer out - what they term "clear margins"  That has its own side effects.  Similar, but at the same time different to surgery.

I found I had post surgery issues for around 18 months.  Nothing dramatic, but the message here is that it does take time, patience and exercise for the body to heal.

Hi Klarice - I'm new here too. Back of mouth and jaw cancer diagnosed, waiting for results of CT scan and MRI and then meeting with surgical team .soon. Part of jaw to be taken away is all I know at the moment. I'm terrified also. So worried about my husband who has cancer also -- up til now I've been his carer. Don't know how to tell my daughter and my 2 beautiful teenage grandsons. I'm in there with you -- such a beautiful world and had so much left to do.  Hang in there -- we'll beat this thing! Sheilagh.

Hi Sheilagh Welcome to the club that none of us want to do my best advice keep off  Dr google You’ll scare yourself  even more than you are. Just be honest with yourfamily. Head and neck cancers are eminently curable treatment isn’t easy but it’s doable. Sorry ti hear your husband is also going through treatment. Please rant on here we never judge as we’ve been there. Any questions just ask. 
Hazel x 

Welcome to the group Klarice. Can imagine the whirlwind of emotions you would be going through. I'm 40, have a 4 year old and was diagnosed with tongue scc in May this year. I had partial removal of tongue, a neck dissection, 3 wisdom tooth removed and currently on week 5 of 6 of chemoradiation. Surely its hard but that's we have to do to survive.

There is lots of support, advice, guidance here. Even if you just want to vent :) Stay strong, start eating healthy and build up and do some light exercise in the run up to the operation. My consultant told me body goes under less stress during the surgery if we do light activity a little more than you do usually. Good luck and focus on well being. 

Thank you so much Hazel for taking the time to reply. Shall read your blog today. xx

Hi H  it will pass a hour or so if your time and help you realise as brutal as the treatment is in living a good life now almost 4 years post radiotherapy and chemo xx

Hazel 

remember we are all different none  if us experience the same side effects xx