Hi, my dearest brother was diagnosed with cancer of the tongue last year, he has had chemotherapy and radiotherapy, he was due to have surgery but his surgeons could not come to an agreement amongst themselves if it was in his best interest to go ahead with such drastic surgery so he was referred for a second opinion to the Royal Marsden cancer hospital in London. After further scans and biopsies he is now facing the decision of whether to have palliative care or to have surgery and they say he may live for 18 months. This is a dreadful decision for any one to have to make, he is only young and has a wife and children. The surgery would involve removing the whole tongue and other, they told him that the concerns after the op would be aspiration of saliva etc. any advise

Hi DJ1

I am so sorry for your brother and his family. It's unfortunate that his doctors couldn't come to an agreement on how to treat him--do they communicate at all?

I do apologize for not being able to offer any advice or counsel, but I'm certain that one of the site's wise contributors will be along shortly.

Julia

Hello dj1
I'm really sorry to hear of your brother's, and your own sad story.Sadly I'm not one of the wise contributors Julia mentioned, but just wanted to sent you my very best wishes.
Cheers
Deborah

Hi there, sorry you have had to come here but you will find lots of help and advice.

What dreadful decision to have to make, I guess it comes down to quality or quantity. Do you know what stage the cancer is?

let us know what happens.

The problems you mentioned are pretty routine for anyone who has such major surgery to the oral cavity and problems with aspiration are often quite long term and can be a bit of a mine field..I think that what should really be the deciding factor in his treatment choices are 1)the stage of the cancer 2) The spread ie:how many lymph nodes are affected if any 3)Is his chest and brain clear on mri scan.4)How does HE feel 5)What is his general health like
and most of all what quality of life will he have post operation.

Surgery and treatment for tongue cancer is traumatic and dangerous,but dying from an untreated lesion is not a pleasant way to go either.I think most people here given the option would give it a go,but thats a hard decision only he can make,and he should have all the facts at his disposal before he makes it

good luck

dj1, sorry to hear of your brothers situation. Having had my tongue removed the swallowing scenario is a tough one. With the flap that was taken from my arm, I'm able to manage (cough a bit now and again due to saliva going into the windpipe), but I'm gainfully employed and would encourage to go for the treatment. (By the way, I've not put much stock in Dr's prediction of future outcomes) They are deriving this based on the odds and data at hand. One thing for sure, everybody has a different story. After a third recurrence, docs said maybe 12 months for me (50/50 chance). Well after four months of additional erbitux I'm working and beginning to once again "plan ahead".

Be encouraged that your brother is not alone, and he's not the first to make the trip. Would encourage him to be as agressive as he can endure.

ady (Ain't Dead Yet)

Bob