Had hemiglossectomy, worried about radiotherapy. Anyone refused it?

Hi Paul and welcome from me.  You seem to have a sensible approach to the quality vs quantity of life equation.  I think for those who have not faced such a situation it is hard for them to understand our management of such things.

I have had the dissection and my tongue surgery was abandoned as the biopsied tumour had disappeared by the time they came to remove part of my tongue - have a look at my profile.  After my surgeries I opted for no CRT due to there being no defined tumour to target nor any hard evidence of cancer cells in the material they had removed.  My choice was evidence driven and you can only make your choice based on the evidence since your surgery (the histopathology) and advice from your clinical team.  I went onto what was called watchful waiting and had that for 4 years (monthly scopes and other checks) before a tumour reappeared that was worth having CRT on.  I was happy with my personal balance of risk vs reward, but each of us are different.

The tongue is vital at moving things in your mouth and post treatment can be difficult to get to all the places you need it to be.  However, over time - and recovery is a marathon - flexibility does come back or you adopt other coping strategies.

As to the dry mouth this normally becomes manageable.  Again, we all manage it differently.  During the day I drink plenty and at night use Biotine gel.  I probably wake once or twice a night to take some more.  Generally I get a reasonable night's sleep and a comfortable day.  As you recognise swallow can be compromised  and saliva is vital to eating.  We all manage that differently.  Little and often is a good maxim to aid eating.  I find water no good as a saliva substitute for swallow as it is too thin.  A beer or a milky coffee is much better and does help me swallow.

I am now 6 years since my first diagnosis and 2 since my last with CRT treatment.  Sometimes I do struggle and I have to choose carefully where I want to go to eat out.  BUT I have a very good quality of life as do many people who post on here.  I travel extensively, go out, still engage in some serious voluntary work  and get run ragged by the grandchildren.  There is every reason to suppose that you would be able to have the same.  Yes there is a new normal, but for me it is a good normal.

Hi Paul. It is a hard decision to make as radiotherapy does affect functioning and can have long term affects. I was not given a choice as I was told that in my case radiotherapy was highly recommended. Discuss the pros and cons with your medical team and then you can make an informed decision. If you do decide to go ahead then you learn to manage the side effects. With the dry mouth there are products that help. Moisturising mouth spray and gels (Biotene, Oral 7) Xylimelts that stick on your gum and slowly dissolve during the night. There are chewing gums that help. When eating you sip small amounts of fluid that help. Some people have very few issues with dry mouth and for others it can be more of an issue as everyone is different. Taste changes are much the same, some people get full taste back and others not so much. You get used to any changes that radiotherapy brings with it and adjust to them. I have had 2 lots of radiotherapy over time, one lot in 2013 and one lot in 2019. I have adjusted to the changes and have found it has not held me back from living a great life. It is the 'new normal' that people talk about it is just a different normal but life can still be good. 

Tough decision to make. I hope you can find a balance that works for you. Don't regret any decisions you make work with them. 

Lyn

Hi Paul, in answer to your question, I said no to radiotherapy three plus years ago; I had jaw cancer, and apart from some difficulties related to the surgery I am still cracking on really well. It was definitely my choice when looking at quality versus quantity, my Consultants definitely expected me to have radiotherapy. I personally do not regret my decision. You will make the right decision for you!  All my very best wishes to you.

June

Paul_W said:

Specifically, I read that RT can turn a mobile, functional flap into a stiff, immobile one, severely impacting speech and the ability to move food around your mouth.

Also, "dry mouth" (xerostomia) sounds minor but is life-altering; it affects sleep, talking, eating (you need saliva to swallow solids), and dental health.

Just to throw light on the other side of the coin.

I have a friend here who had the same op as you, she went on to have RT. She enjoys time away staying at posh hotels eating posh food and while that stopped for a year or so she is now five years clear and back to her old self. I had RT to both sides of my neck (though no surgery) and while my saliva is diminished it is pretty good and I eat well, can still talk the hind legs of a donkey and sleep largely without the disturbance of a dry mouth.

I had no choice in. having RT. You do so make sure you know the chances of those side effects you mention and that your oncologist is informative and honest. For me it would all depend on whether there was cancer found in the nodes and whether the surgery margin was good. Good luck...let us know how it goes

Hi Paul welcome to the group from me. This is a very difficult decision to make. It's best to discuss it with your team and then weigh up the pros and cons. In my case I went along with whatever they told me was the best way to tackle my cancer, which was bi tonsillectomy followed up with 6 weeks RT and 1 daylong session of chemo each week. Without a doubt the treatment is very challenging and does come with side effects, which they can prescribe medication to help with them, however in my case and like many others on this site it did return a good result. It's a good job we do have the choice of deciding what treatment we feel is best for us. All the best with whichever way you decide to go. 

Ray.

Hi Paul, I am in a similar position to you . Had surgery on top lip.and neck dissextion , radiotherapy been recommended for 7 weeks , I am feeling same as you , ie quality over quantity as I am still recovering slowly from surgery xx 

Thanks so much for all the replies.

I said No to the radiotherapy for better or worse.

We all have our limits in terms of what side effects are acceptable and I have reached my limit already.

Oh and they found a micrometastasis in a neck lymph node at level 3 of my neck.

Of course, my odds are not great and any return of cancer is most likely to be in the first year. Any return to the tongue will mean a complete glossectomy at best which I'm not prepared to go through.

Any cancer in my dissected neck will be inoperable because of all the scarring and could lead either to a very quick death if the tumour wraps around an artery - a Carotid Blowout - or a horrible death involving a  tracheostomy if it restricts my wind pipe. Again, not prepared to countenance this.

So I am taking control of the situation by making plans for a VAD (voluntary assisted death) in Switzerland as my plan B.

I will also make an Advanced Directive stating "I refuse a tracheostomy even if my life is at risk" in case I am unable to travel to Switzerland in time.

I already set up LPA (lasting power of attorney) the day before my operation on 23 Nov but it takes a couple of months to process.

My wife, two adult daughters, mother, stepfather are all understanding at least. I'm not saying they would have chosen the same path and neither would I if, for example, my kids had been younger.

At the end of the day though, we all have to weigh up quantity vs quality of life.

From the research I've done I have a 60% - 65% chance of being disease free and alive in 5 years.

With radiotherapy it seems I would have had 80% - 85% chance of being disease free but more relevantly 70% to 75% chance of being alive. That 10% difference can be explained by a number of reasons, one of which is the toxicity of the radiotherapy itself.

Of course, these percentages are probably nonsense.

Hi Paul. You have put a lot of thought into things and have made a considered  and sensible plan for your future. Now your decision is made move forward and enjoy your life. No one knows what the future might bring so there is definitely no point in dwelling on it. I have every hope that in 5 years time you will be looking back on this time and continuing to make great memories. 

Wishing you a wonderful Christmas celebration with your family and sending you positive thoughts for 2026

Lyn