George had partial glossectomy, reconstruction, radical left neck dissection and radiotherapy (by the way, he had a PEG tube through all this - I'm surprised at how many don't - hard to see how weight or any sort of normal life can be maintained without it, especially during / after radiotherapy) for squamous cell carcinoma on left side of his tongue in 1999. I've forgotten grade/level numbers, but at the time, the prognosis was very poor. He didn't, and still doesn't, want to know the numbers. We took this, not as any sort of prediction, but as an indication of how seriously to take this - that life needed some radical changes. He had several visits to the Bristol cancer care centre, which I cannot praise highly enough and there were big changes in his attitude to life and our relationship - helped a lot by going to buddhist meditation classes. There is a huge amount to be said for Robert's Positive mental Attitude (PMA). And, of course, extra attention to diet etc - although as a non(never)-smoking, vegetarian who drank very little and grows his own organic veg, we had thought we had this covered.
Against all the odds, he was cancer-free until May this year, for which I can't be grateful enough.
However, in May, he had a new tumour removed from his tongue, with all the reconstructed flap. Then in September, another tumour removed from the remaining right side, and a week or so later, the bit of that they missed and a lump in his neck.
We were told to consider the possibility that he may need total glossectomy, laryngectomy etc and have been trying to find out about this on the net.
Yesterday, we finally had the meeting with the team (N. Staffs Hospital) to get histology & CAT scan results. Some aspects still a little hazy, as George fainted during this, so discussion ended. He has cancer on the back of his tongue and gullet (?) and, most worryingly, the neck lump was a soft tissue deposit rather than a lymph node. They are of the opinion that the time and life quality impact of the surgery would be too 'cruel' as the chances are the cancer will pop up somewhere else soon.
George had psyched himself up to facing the surgery and still feels that if we can remove the cancer that is there, he still has some hope of beating the odds again.
We would be very grateful to hear from people who have had this surgery and their quality of life afterwards and any other help anyone one can give us with facing up to all this.

Hello Joy and George

The article below might help you get an insight into the difficult decision you are contemplating:

Survival, function, and quality of life after total glossectomy
RUHL C. M.; GLEICH L. L.; GLUCKMAN J. L.;
Department of Otolaryngology-Head and Neck Surgery, University of Cincinnati Medical Center, Cincinnati, Ohio, ETATS-UNIS

quote:

Advanced tongue cancer is associated with poor survival despite aggressive therapy. In an attempt at cure, many patients undergo total glossectomy, which significantly affects function and quality of life (QOL).

This study was designed to determine the survival rate and QOL of patients who had undergone total glossectomy. A total of 54 patients underwent total glossectomy, with or without total laryngectomy, for advanced tongue cancer from 1970 to 1996.

Patient outcomes were assessed for the following: 1. disease-free survival, 2. function, utilizing the Performance Status Scale (PSS), and 3. QOL, using two general cancer questionnaires (FACT-G and EORTC QLQ-C30) and a series of questions specific for head and neck cancer patients.

Corrected actuarial survival was 51% and 41% at 3 and 5 years, respectively. Functional assessment using the PSS demonstrated significant deficits in speech and deglutition. QOL questionnaires revealed problems with eating, speaking, socializing, and shoulder function. However, the overall responses demonstrated that these patients have adjusted to their deficits and have a good QOL.

It was concluded that total glossectomy, with or without total laryngectomy, can result in meaningful survival and an adequate QOL can be achieved in selected patients.

You can also find out more through this Google search.

Best wishes
Vinod

Many, many thanks Vinod.

On the face of it, the surgery option, although terrifying, looks much more promising than the palliative approach, or even the new treatment regimen (re-irradiation, cisplatin etc) you posted details of elsewhere.

There are so many variables / unknowns. I suppose we need to work out how typical George's picture is of the sample in the surgery study, what is meant by 'selected patients' (eg whether those with the sort of soft tissue spread he had would be selected. He'd certainly score well on motivation) but he beat worse odds than this to survive from 1999 to 2006.

Are you a colleague of Mr Worrall's at Bradford? He was George's consultant in N Staffs in 1999 and I think his good outcome was due in large part to the skill and positive attitude of Mr Worrall and his team. I can't thank him enough for giving us 7 good quality years.


Joy

As you may have noticed from my other message topic - George is going ahead with surgery on tues (21st).

Wishing you both all the very best for a succesful outcome on Tuesday.

my dad has got throat cancer and is undergoing chemo and radio..the doctors have installed a feeding tube in his stomach..his cancer is in the route of his tounge his throat his voicebox and his larynx glands..if the radio therapy doesnt work the only other option is to have his whole tounge out his larynx glands and his voicebox out..we have been unbable to find anyone who has undergone the same operation (gettin everything removed) would be grateful to hear from anyone who has had this op done or knows someone who has.

Hi Gordon

I'm so sorry to read about your dad's trouble. I think you'll find that the people on this site are really wise and helpful.

Off hand, I can't think of anyone who's had a total glossectomy along with a laryngectomy and all that other "fun" stuff, but I'm sure there is someone.

Remember, this isn't a site just to get help for the person with cancer, it's also a fantastically supportive place for their families and carers. If you need to vent, do it. If you feel more like lurking until you feel comfortable, that's fine too. I truly hope you find what you need here.

Julia

my husband, neil has had a partial glossectomy, its called partial but all of his tongue was removed, as well sa the bottom of his mouth,and the front of his jaw, the surgeons took a piece of muscle from neil,s stomach and put it in his mouth, with a slight bump at the back so that his food would have something tohelp it to fall down his throat.We never expected neil to be able to talk or eat normally ever again but his speach is very good, and his eating is great, as long as there is plenty of sauce or gravy, sometimes its a bit limiting, but compared to 'baby food'its fantastic.