Hey my name is Chris, I'm new to the forum. im 27yrs old and im from Ireland.
5 years ago I received surgery for a stage 2.5 tumour on my tongue. Had half my tongue removed and a radial free form flap, neck dissection etc. following surgery I received 6weeks radiation. No major problems everything was going fine except for my bad trismus and tooth decay until my most recent diagnoses.

A tumour has appeared on the opposite side of my tongue and now they same doctors want to perform the same operation.
This time however I am told I will be left with no swallow and will need a permanent tracheostomy and be unable to speak. I am nervous, afraid and I hate the thought of going through this procedure again knowing this time I wont fully recover.



-Chris

Chris, I am very sorry to hear about your diagnosis, that's awful news to be hit with.

A very effective way to get through this is to understand that all your life, up to this moment, is in the past, and with this moment, you begin another life from scratch.

As one of the first things you do in this new life should be to get a second opinion, you may well find that there are other options. But...

As part of this, try not to attach to any particular outcome and you will not be disappointed, no matter what you hear, it is simply a description of a change in your life. I know you may think that this is easier to say than to do; but it's not. It's your mind, take control of it.

One of the ways to do this is to stop thinking of outcomes as either "good" or "bad' and see them as simply outcomes. Life is what it is; it's not what we want it to be, and it's not what we don't want it to be, it's simply what it is.

Thinking about what was lost serves no useful purpose. None. There is always something left as long as you draw breath.

Think in terms of "what do I have left, and how can I use it to make my life better?"

If you'd like to pursue this, contact me by PM so we don't clutter this thread.

I have a closet full of those BTDT T-shirts.

Hey Chris, I have sent you a PM. I hope this helps.
Are you able to get another opinion in Ireland? Or is this a tumour Board decision?
You will get through this,
Tammy

Hi Chris, is your cancer from HPV16? I have read in quite a few sites that radiation and chem yeilds good results.

Chris welcome to OCF!

Im not familiar with how the medical system in your country works. Here in the US we would advise you to get a second opinion from a top treatment facility. Look for a place where the doctors use a team based approach where all the specialists have meetings on each individual case and then make a treatment plan. Teaching hospitals are usually top notch facilities with the latest in technology. If it is possible prior to having such a life changing surgery get a second opinion. But at the same time, dont waste too much time as recurrences can quickly grow and become very hard to treat. Not that its not possible! Ive had OC 3 times and luckily Ive gotten thru it.

Best wishes!!!

hello Chris - welcome to the family. We are all survivors of oral cancer or caregiver to someone who has it, so we know what you are going through.

Please pay attention to what Bart told you above. He knows of what he speaks. He is one of the first people I met on the forum about 6 months ago and I credit him heavily with getting me through this daunting journey. Take the time to PM him and get to know him and what he has to say. It really will make your journey smoother and less worrisome. I have known other members who didn't heed his advice and their journey was fraught with depression and worry, way more so than it needed to be.

That's really all I have to say. I'm still new to the forum myself, so I don't have the technical experience to give you those words of wisdom. But I do know that this group, this family is who you want in your corner as you travel this journey.

Hang in there, you will get through this time, just like you got through last time. But this time you have a lot of friends in your corner.

Tony

Hi Chris , I'm new to this forum myself and a bit clueless ! Just wanted to say since joining yesterday I've had some lovely messages and great support. Not really in a position to offer advice as learning stuff everyday myself. I'm in UK I think things may be done slightly differently I wasn't offered a second opinion about anything my treatment plan was drawn up for me and I was told the best way forward by the consultant at the hospital I was to be treated at. I had my operation at a different hospital and they said I would need further surgery at the cancer specialist hospital but when I got my appointment they had a different route planned so I went with it.
Wishing you all the best Di

Firstly di66 - I know you've had your treatment at this point but I have to tell you for future use - no medical establishment will ever offer you a second opinion (you are in a country where medicine is socialized - I'm Canadian ours is modeled after yours so we are very similar - a second opinion means more cost to the government and frankly most drs figure they're good at what they do so they know best and family drs. /GPs always refer within their group of peers) If you are uncertain about a dr. Or what they offer you as treatment go back to your family dr. (Or the person who refered you)- and request a referral to someone else. Want to up your chance of getting a really good dr? Do some research. Look up who is the best of the best in the UK for treating your kind of cancer - chances are this person will already be connected to a top cancer hospital - this is who you need to see. Request to be refered to that person specifically - in fact this refers to Chris86 as well. You've had a recurrence at this point you need to make sure you're being seen by the best of the best - they can likely do rads again but I think the first route hey gave you is the best way to go - provided they can operate quickly - chances are this is NON HPV - based a on your age and location so surgery should be your first option - with regards to what you will and won't be able to do after - no one can tell you. However there are people here who've had your surgery (total glossectomies too) and can do it all - speak, taste and breathe normally. My advice - a second opinion FAST - do a bit of homework and find out who the TOP surgeon for its type of cancer (an ENT - obviously) is in Ireland and be prepared to travel if necessary - this is your life. You are young, and you want to have the best quality of life possible after treatment is done. Hugs and welcome to the group.