Radiotherapy after Tongue Cancer

That is a tough one.  In reality only you can make the decision. 

I am in a similar place to you after chasing my tumour for nearly 18 months now.  Due to have it removed from my tongue in the near future.  Prior to that I had tonsils and lymph nodes removed.  At that stage my clinical team advised against continuing with radiotherapy and undergoing "Watchful Waiting" to see if the primary showed itself - it has now.  I was told that I had a 70% chance of it making an appearance, but my situation was different to yours at that time.

My personal decision is to stay just with surgery if the histology looks good.  In which case keep radiotherapy in reserve if/when it returns and I need that line of defence.

I will base my decision on an informed discussion with my clinical team one we know what we are dealing with.

I hope my rationale helps you make an informed choice as to how you move forwards.

As Peter says very tough. Radiotherapy in this area can be and most often is brutal, I would again agree him again that if it's an option your team thinks is viable then "holding it in reserve" would be a good choice so that you only have it if you definitely need it. But then again they might say that that "option" carries a higher risk of the RT not working fully. You just need to be led by your team I think, RT is a one time option, you can't have it twice, so needs to be used (or not used) with every bit of information you can get. Wish you all the best.

Agree up to a point with Peter and Mike 

Other  questions I might ask are what is a recurrence likely to involve? Would it be local or is there a chance that it could spread distantly before a local recurrence was spotted. Would  a  recurrence involve more tongue; more lymph nodes and what would the chances of cure with RT at a later stage be? 
Sorry to confuse you 

Let us know how it goes. 

We were told without radio 25% chance of recurrence 15% recurrence  after radio. The doctor said    Generally it would recur locally. I feel at the moment I haven’t recovered enough as had an17hr op then got ventilator pneumonia after two days then on day five had to have flap removed and reconstruction from chest another six hr op followed by seven days in ICU . Just feeling I need to get stronger before radiotherapy so think I am going to wait to see if it does recur then take it then. It’s just a big dilemma what to do for the best really 

Hi Dejavu, well done it getting through your big operation, i know how difficult it can be recovering from reconstructive surgery etc, i was offered radio and chemo afterwards but it came back a year later so all i could have was more surgery as i had used my quota of radiotherapy up, so maybe as the other guys have said it might be worth keeping it in reserve just in case. My radiotherapy was for the floor of the mouth area and edge of my tongue, my experience was pretty good compared to others and to be honest it varies from person to person . I noticed you had to have a flap removed and redone , mine happened as i was just coming around from my second operation they realised it had died /not taken so i was whipped back into theatre. All this was done back in 2008 -2010 and i have made a good recovery. Sorry for waffling on ,i sometimes get carried away, wishing you well in your choice with the radio, take care .

                                                                                                          Chris x

Hi Dejavu

What a difficult decision to make. You’ve gone through a lot with such a big operation and it will take a few weeks before you feel you are beginning to get over it. You might feel in a better place to make a decision about the radiotherapy then as you have said.

Normally radiotherapy does not commence until at least 6-8 weeks after an operation so there is time for healing.

In my case I was told that having radiotherapy would give me my best possible chance so the decision was a lot easier so I went with the experts. I was not given percentages for recurrence. However the cause of my cancer is quite different to yours and in a different area.

I have had 2 lots of radiotherapy one on the right side of my face and 6 years later on the left side of my face for another cancer. I found the first radiotherapy quite brutal but the second lot years later was not as bad.

I know everyone has different experiences with radiotherapy and it is an individual decision about whether to have it but if it gives a better chance of recovery as it did in my case it was worth it.

Best wishes for your ongoing recovery.

Lyn

Hi Dejavu

it also makes sense to discuss scope and intensity of radiotherapy I had surgery as well and had radio + chemo afterwards Often after surgery the treatment is less intense as tumor itself is already removed l (I had 56G instead of regular 70) Even though I spent 23 days at hospital after surgery in 6 weeks I managed to undergo radio/chemo without tubes 

take care

Hi

I had tongue cancer in September and was in the same situation as you.

Tongue surgery plus lymph nodes removed which where cancer clear. 

I have made the descion not to have radiotherapy.

I have a major fear of hospitals. So my stay was torture.,and totally stressful. Which didn't help my epilepsy. 

It didn't make any sense to me waking up from a surgery no longer being in pain. To go back to being in pain. Spending every day in hospital for weeks on end being on a liquid diet. My recovery takes years instead of months. 

I'm now eating normally almost. Living a normal life again as regards covid restrictions let.

If cancer reappears I will deal with as and when.

But as everyone says it's a personal choice.

I will say what's your support network like?

I've done this more or less on my own.

So I'm dealing with it the best way I can.

All the best in whatever you decide xx

My mother underwent radiotherapy 6 years ago for tongue cancer, she was part of a trial for a study into shorter more intensive radiotherapy treatment. She is now over 5 years clear. However in the last three years she has developed a barrage of life altering side effects from the treatment. She is in and out of hospital on a weekly basis with pneumonia or infections in various parts of her body. Her immune system is now none existent and she is still eating and drinking through her peg. The specialists she sees seem to contradict each other on whether she should try and eat and now after 6 years she's been told that she shouldn't have been consuming any fluids orally. We all feel that if she had the standard treatment she would have been on the road to recovery by now but unfortunately she has absolutely no quality of life. It feels like she should have had more support with after care as she didn't volunteer for the experimental treatment it was all that was offered. We now have nowhere to turn to as private treatment is too expensive and we have lost all faith in the NHS as they have misinformed us through the whole recovery process.

PS.....Were your lymph nodes clear?