Hi all,

I was just referred to this forum by the awareness group in Ireland who told me it's a fatastic site. I am looking for input towards deciding whether to get radiotherapy...

I had surgery to remove a Squamous Cell Carcinoma on the left side of my tongue 6 weeks ago. It was a T2N0 (the tumour was 2.1 cms to be exact, and none of the 44 lymph nodes were affected). The clear margin is 3 mms and I am told that with 2 mm or less I would need radiation, 5 mms or more I would not need it, therefore I am in the 'grey area' and I can go either way.

Obviously it's a tough decision, balancing out the pros and cons: improved chances of not recurring (I am told I can reduce my risks from about 15-20% recurrence without radiation to half that with radiation) vs side effects which vary from person to person, the worst being dry mouth, but I was advised that with the tumour being on the side of the tongue they can radiate without touching the salivary glands that produce 70% of the saliva.

Surgery would not be an option again if it recurred so I would be looking at much stronger radiation + chemo.

I realise I am very lucky to have caught this early enough to have such a choice, but it's still a difficult decision.

I'd be grateful to know whether the same data is given in the UK, any experience you can share and the Doctor's expert views on the matter!

Thank you
Anne

Hi Anne

I had SCC, T2N0M0, on the left side of my tongue. My tumor was 2.9 cm and none of the 50 lymph nodes removed was involved. The post-op pathology report said that, in my case, neither radiation and chemo was warranted. Five years later, I'm still cancer free.

The hospital where I was treated does not use radiation for tongue cancer--they've had excellent outcomes using surgery.

You're right--it's a very difficult decision. Normally I'd say it's better to have something and not need it than to need it and not have it, but radiation has too many risks and side effects associated with it. Also, I'm of the understanding that it's basically a once-in-a-lifetime deal, so if you use it now and later develop cancer elsewhere, that weapon is out of your arsenal.

Sorry I couldn't answer your question better--or at all, really.

Please let us know how this turns out.

Julia

Hi Julia and thank you for your reply.

Do you know what size margin was clear in your case? That seems to be the deciding factor they are using here... all other things being equal, and we seem to have very similar cases...

I had also thought that radiation was a one shot deal, not for the whole body, but per area. In fact I am told it's not true, though of course if used twice it is very damaging.

Were you given any idea of your risks of recurrence with and without or did they just never really discuss the possibility?

Thank you and lovely to hear you are clear after 5 years, I gather after 5 years you are pretty much home and dry, right?

Anne

Hi Anne

Unfortunately, I don't remember the margins. Everything happened so quickly that it's pretty much a blur (42 days from initial doctor visit to surgery). They also cut away enough of my tongue (tip to first molar in length, and from edge to midpoint) that they must have felt pretty confident. It was still pretty well encapsulated, and subsequent biopsies have shown everything to be ok. If my doctor (wonderful guy!) had waited, it might have been a different story. At 2.9 cm, it was a very large stage 2, nearly a stage 3. Had it been stage 3, then the big guns might have been used (and who knows how effective they would have been). It was still pretty well encapsulated, and subsequent biopsies have shown everything to be ok. At the time, I thought the surgery would be a simple in-&-out kind of thing. I was fixated on the word "encapsulated" and convinced myself that I'd sit in the oral surgeon's chair, they'd excise the tumor, stitch me up and send me on my way.

I like to think that I'm all better and that the battle is done, but you just never know. Cancer is an evil, rancid, son-of-a-mother that can hit when everything's at its best. I still have yearly chest x-rays (and probably will til the end of time), and of course whenever I feel a twinge in either my native tongue or in my flap, or get an earache, that sense of dread comes over me.

Welcome to the club!

Julia

Hi Anne,

I was a stage two tongue cancer left side as well diagnosed nov 08. Had tumor removed unsure of size. 25 lymphnodes removed one positive. All margins clear. Did 32 radiotherapies. I have not had recurrance to mouth area at all. I have had mastesis to lungs and left hip though. I am currently getting radio to the hip. I hope this helps you.

Pam

My cancer wasn't on my tongue but I had 42 RTs after surgery. I think, with hindsight, that having the RT was probably the way to go. It did have it's damaging effects but as my dr said when he got all technical and medical on me, "belt and braces son" .
Having said that, it's the sort of question you can only answer for yourself. Arm yourself with the facts and go with your gut feeling, whatever that turns out to be. Hagg.

Hi Anne, If I were you I would also seek advice on the US oral foundation site frequented by many more patients, and a few real experts. I have a feeling that some of the most knowledgeable would advise RT, but better to ask there.

Wishing you well
Cathy

quote:

I had surgery to remove a Squamous Cell Carcinoma on the left side of my tongue 6 weeks ago. It was a T2N0 (the tumour was 2.1 cms to be exact, and none of the 44 lymph nodes were affected). The clear margin is 3 mms and I am told that with 2 mm or less I would need radiation, 5 mms or more I would not need it, therefore I am in the 'grey area' and I can go either way.

Hi Anne

The general advice would be to avoid further treatment as radiotherapy has its side-effects and the lymph nodes were all negative. You would be advised to keep radiotherapy as a back-up if required in future as once used the tissues don't take well to it being used again.

Best wishes
Vinod

hi anne you probably have made your decision by now, but for what its worth i agree with the good doctor, radiation can take a long time to get over . i was treated in st lukes dublin with rt and chemo the chemo being optional,i left the decision up to the doc,s as they are the experts, take care and let us know how you get on. james.