I didn't have radiation or chemo after my hemiglossectomy and resection. I am increasingly of the impression that this is quite rare. Is there anyone else out in MCF-Land who didn't need "the big guns" (as I call them)?

Thanks.
Julia

Hi Julia

I just had surgery for my tongue cancer last October - the tumour was taken from my tongue and I had a left-sided neck dissection. I was expecting to have a tongue flap but when they came to it the tumour was smaller than they thought, so I didn't need one after all. It was still major surgery, though and I had a tracheostomy and a PEG tube. My consultant said that they can now keep the flap in reserve in case the cancer comes back.

Having read everybody's stories on this site I am really glad I did not have to have radiotherapy. My doctor told me that they often find the effects of radiotherapy are worse than the surgery. He also said they would keep the radiotherapy in reserve as well!

I think there are a few of us on this site who have not had radiotherapy, but certainly it doesn't seem to be many.

Cheers
Gwyn

I can't imagine not having a flap. The way it was presented to me, there wasn't an option (and, frankly, I don't think I'd be too happy with only half a tongue). :P

Hello,
My husband firstly had a hemiglossectomy (part of tongue removed) then went on to have the flap put in after another operation.
He managed well with the hemiglossectomy, just had some difficulty clearing his mouth and saliva build up!!!

Good luck

Hi Moira

Did your husband have radiation or chemo?

He had the hemiglossectomy and resection seperately? How long a wait did he have in between? Is his flap working well? My work was all done at the same time, and took the better part of the day (or so I'm told--I was asleep).

Hi Julia,
My husband had his first op in Australia and neck dissection, we were living there at the time.
We came home and he had another op here. I think the total time between ops was a few months. He had radiotherapy and chemo and sadly nothing worked. He was 36yrs old.

Moira

Hi Gwn

I'm a left-sider too. The day before surgery, my doctor did radioactive injections into the afflicted side of my tongue and the floor of my mouth (hurt like a son of a pup, and I have a really strong gag reflex)--did you have to go through that little bit of fun? I guess I'm curious about how it's done in different places.

Julia

Hi Julia
My Dad had surgery for tongue cancer in November. When he was diagnosed he was given the option of either surgery or radiotherapy. He opted for surgery, which sounds the same as yours. Partial glossectomy (about a third of the tongue), also left side, reconstructed with a flap from his forearm and neck dissection (he also had all the left side lower teeth removed and a sliver of jaw bone). When all the results came back (not until January!), thankfully there was no evidence of C in any of the 45 lymph nodes they removed, and all the tongue/mouth margins were clear. Therefore he has not required any radiotherapy, and like Gwyn it is being 'kept in reserve', although he's already made it very clear that he won't have it no matter what happens! Also like Gwyn, when they operated they found that the tumour was smaller than they had thought and they downgraded it from T2 to T1. Unfortunately, unlike Gwyn, they carried on with full works surgery.

My Dad has managed very well, all things considered. He didn't have a tracheostomy or a peg, although he hated the nasal tube and had it removed after five days. He's eating well, mainly softish stuff and it takes him a long time, but this is as much down to the lack of teeth as to the flap. His speech is better than we expected, a bit slushy here and there, but perfectly understandable.

He is having a lot of pain and discomfort in his neck, shoulder and arm, but his first physio appointment is tomorrow, which will hopefully help - yes it has taken three months for an appointment!!! It probably doesn't help that he keeps trying to do things that he probably shouldn't. For example, a few days ago he decided to tackle cutting their back hedge. This is not a little garden hedge, but a field hedge full of all sorts of trees and bushes and about 10ft high. So he went up a ladder and spent several hours waving the loppers around. Then he complained that he had put his shoulder out completely and could hardly move. To cap it off his little finger has swollen to the size of a tennis ball, and is agonising. I think he's broken it, but of course he won't go and get it x-rayed! Stubborn old *******. When I take him to physio tomorrow (he's insistant on driving himself, but I won't let him), I'm going to march him round to A & E at the same time!

Sorry, I've just realised how much I've rambled, so I think I'd better shut up now!

All the best,
Sara

Hi Sara

Your dad does seem to be having a bit of a time of it! Hope all goes well tomorrow with his physio appointment and also that he gets his finger sorted out.

Regards

Gwyn

Thanks Gwyn,
He has really suffered with his shoulder ever since the surgery. In fact it's caused him far more pain and discomfort than anything in his mouth - has anyone else experienced this? The problem is that this causes him a lot of frustration, as he's used to being very active, so then he just does stuff anyway, which undoubtedly counfounds the problem. On the other hand I suppose that this is preferable to him giving up, vegetating in a chair and feeling sorry for himself!

I'll let you know how it goes tomorrow.

Sara

hi julia
i fortunatly did not require radiotherapy after major surgery in august 2007. had trachy tongue tumour resection ngtube ect but still suffer realy badly with stiff shoulder and facial nerve pain i have been told today by pain consultant that this will be a chronic condition and may not improve at all i just wish that i knew this before surgery as i am now on disability have worked as a nurse for over 20 years and i just dont know what will happen now regards work as i have been left with a palsy in my arm only time will tell and it is just great to have the time
love bevx

Hi Bev

My pain was all before surgery, and almost all of it was in my left ear (referred pain)--it felt like someone had shoved a letter opener or knitting needle in my ear and gave it the occasional THWAK! just to make sure it was still there. I had a trach for a month (during which time I had a cold--such disgusting laundry!), and an NG tube.I'm so glad those days are over.

I didn't have shoulder pain after the neck dissection, but my mother noted that my left shoulder seems a bit lower than my right. It really is a matter of time until it's cleared up. My only nerve pain issue isn't so much pain as confusion. Three years post-op and I still have a weird cool sensation on my flap when I touch the left side of my lower lip.

My flap is made from my right forearm (which is quite hairy), and so I have hair on my flap. This doesn't bother me, but on a recent dental visit, my dentist picked up a small pair of scissors and gave my flap a haircut. It wouldn't have been so bad if he'd asked me, but it felt like assault. I don't mind the hair.

Julia

Hi Julia and Bev

I didn't have any radioactive injections before my op - thank goodness, they sound awful.

I was in pain before surgery as well but mainly on the actual site on my tongue where my tumour was.

I have been lucky with my neck dissection as well, as the only residual effects are a slight stiffness and numbness in my neck which don't bother me at all. I find the numbness in my tongue slightly more disconcerting.

Love

Gwyn

Hi Gwyn

The purpose of the injections was to see where, if at all, the cancer had spread. (Thanks to all positive forces, it was encapsulated and restricted to my tongue.) If I could have sworn when that was being done, I'd have said "HIT!" or maybe "HUCK!" or even "HON OG A IG!" It didn't help matters that my tongue wasn't sufficiently numb and that my doctor was losing patience (no pun intended).

Is your speech ok? I chose not to talk immediately post-op (freshly sutured tongue, didn't seem like a good idea), but when I started back at the behest of my doctor who took away my clipboard and said "No more of that, young lady" (he's from Feb to April older than me; gotta respect my elders) I was a bit self-concious. It helped that my cat moved in with my parents while I was recovering (long story)--I could talk to him and not feel stupid. Not only did I not need speech therapy, but at my last visit to my doctor, I had the opportunity to play Show and Tell for one of the speech therapists here at the University of Michigan. She wanted a new trainee to hear me. I think I surprised her; I sound almost like I did before Flappy was "born."

Julia

Hi Sara

Hope your Dad got on all right today. Was his finger broken?

Gwyn