Dear All

You may recall, if you saw my earlier post (introductions), that my Dad was diagnosed with tongue cancer on 17th October and had been given a choice between RT or surgery. Well we had our meeting with the team on Wednesday, which was in some ways reassuring. My Dad was already 95% certain that he wanted to go for surgery as he believes that he will find it very hard, if not impossible, to get through RT, and the meeting pretty much confirmed things for him. So he has now made a definite decision and will be having surgery (removal of 1/3rd of tongue, reconstruction using forearm flap, removal of most of lower teeth and part of jaw, and partial neck dissection), on 26th November.

Although we wanted a date, and in a sense to 'get on with on', suddenly it all seems very real and consequently very frightening - I'm sure I don't need to tell any of you that! My parents are naturally terrified of what lies ahead, but we'll find a way through. My Mum has agreed to come and stay with me while Dad's in hospital, which I hope will help us all.

Perhaps this is just a typical emotional reaction, but I can't help feeling some anger/frustation and wondering if such radical surgery could have been avoided. Mt father's history with this tongue 'problem' actually goes back ten years when the first area of dysplasia was diagnosed. During the next five years he had two biopsies done, both of which showed pre-cancerous cells, but no action other than monitoring was taken. Then five years ago the current area of ulceration first appeared. The consultant thought (despite the previous history) that it was probably being caused by a rough tooth, so this was filed by the dentist. No improvement, so the process was repeated. Still no improvement and no biopsy and three years ago (despite the dentists disagreement), my father was 'signed off'. Therefore, when the ulcerated patch began to cause increasing discomfort and pain, my father initially didn't act because he thought the consultant would say the same again, and then when he did try and see the consultant, he had to wait ages, go back to dentist and get a new referral etc.

Sorry for whinging , I know it's just a reaction to the situation, which is probably not justified, but I can't help wondering if he hadn't been 'signed off', would this have been detected at an earlier stage?

Anything, thanks for listening and thanks to those of you who have offered kind words and support, it makes such a difference.

Sara
P.S. Ananth - I'm looking forward to the next intallment of your life story! Have a wonderful trip to Australia and Barcelona .

Hi there Sara, for some reason I missed your previous posting. Amazing the deal your dad has had.

My husband was diagnosed in March this year with base of tongue cancer which had spread around his throat and was in his lymph glands. We were told that surgery was not an option as it would be so radical that he would not have any quality of life, that they would have to take away his voice box and all his tongue and that there wouldn't be enough healthy tissue to rebuild. Well here we are eight months on, we were told by his consultant 6 weeks ago that the chemo and radiation had been successful although we are awaiting the results of a CT scan he had last week. I am just amazed, I want to ask the question, what happened to those cancerous cells. Before the chemo, he couldn't move his tongue. His was a stage IV. I know every one is different, reacts differently and their treatments are different but if this can happen with a stage IV cancer, why even think of operating? Incidentally, my husband is 67 and in quite good health. His overweight problem, at 18 stone (now 13.5) has stood him in good stead at the end of the day.

One assumes the learned ones know what they are doing but in your Dad's case?



Sorry if I have added to your dilemma

Hi Sara

So decision made then?i must say i am a little surprised that you had to choose an either or situation as with the extent of the surgery you describe i would have thought it more likely to have been surgery and rad or chemo.

As for the problems that led you to this point,i often think it would be great if we had the American way of being able to ring a specialist and just ask for an appointment when we had concerns.It certainly sounds as if your Dad might have got diagnosed quicker if he had been monitored for longer.

The trouble in this country is that we accept things told to us without question,just as we accept poor service,poor food in a restaurant and poor quality goods,we just don't shout and stamp.
Robin accepted the Dentists opinion about his tongue ulcer for months,and he too had a tooth filed down and a new plate made for his denture.
These people are unfortunately fallible and considering the consequences of their mistakes can be so life threatening it is unbelievable.

I hope all goes well on the 26th i will be deep in thought that day as it will be one year since Robin eventually went to see the Doctor and was reffered to the hospital.

good luck

liz

Hi Sara,

If this site and my mother's tongue cancer has taught me nothing else it has certainly taught me that, God Forbid, if I was ever in a similar situation and there was even a shadow of a doubt about anything being wrong in my mouth, I would kick and scream and seek second / third opinions until my fear was calmed.

It's just a shame that we all have to come here to arrive at this point.

I hope all goes well. It's a terrifying time but somehow you get through it.

Dearest Sara,
Hope I have enough time to write down a few more lines but I guess why bring back old memories and make ourselves miserable.By the way you were in no way winging as you love your Dad so much and anyone who says that has to be nuts.
I am always available on the net and on the net in my phone( now dont ask me how that happens - I dont know!)But anything you'll post will alert me and I will be able to log into rdoc through my phone. Oh! the marvels of the new world!!!!

Take care Sara and here come the xxx along with the hugs and love.
Ananth

Hello Sara,

I guess if I were in your Dad's position pre diagnosis and without experience that I would rely on the professionals opinion, we never want to think the worst, until our own bodies tell us to stop kidding ourselves. That was how it was like for me anyway, looking back serves no useful purpose and causes doubt, fault finding and induces a lack of confidence in the future.

I wish your Dad well somehow I don't think surgery will be the end I feel like Liz that radiotherapy will probably follow (it certainly followd my own surgery to ensure eradication of any diseased cells missed)and you should ask the question now especially if your Dad has elected surgery to specifically avoid R/T as an option.

Of course this may have already been taken into the equation as you imply in your post certainly R/T alone as my wife is likely to get will be more aggressive by definition without surgery but she does not have the option.

Keep us informed, best regards, Alan

Thank you all so much,

As Alan rightly says there is no point in looking back, but I think it did me good to 'vent my spleen' so to speak!
hindsight may be a curse!

I did ask the consultant what was the likelihood of my Dad needing RT after surgery, but he said he couldn't answer that ! Similarly I asked the radiologist about surgery following RT and he said that the RT option would be so aggressive (tongue, floor of mouth and neck), that surgery would be difficult and inadvisable and further Rt would definitely not be possible - if my Dad wasn't already fairly sure he didn't want RT, then I think this response probably made his mind up! I guess whether or not RT is needed after surgery will depend on the results from the lymph nodes, so I just have to keep everything crossed, although having read all the stories on here it seems as if almost everyone has RT, even of it's precautionary, so it's hard to be optimistic about this.

Anyway, I'll do my best to stay positive and keep my parents as positive as possible - doesn't seem much, but its about all I can do right now. My Dad, (similar to your husband, Angie), is 66 and very fit and healthy (apart from the obvious!), so this must be a plus point! Incidentally, he hasn't smoked since he was 19 and only drinks in moderation, so none of the typical risk factors, although it's been suggested that the steroids in the asthma inhalers he has used since early childhood may be the cause! As they say - life's a bitch (I won't finish that)

Thanks again, hopefully the next update will be good news. Best wishes to you all.

Sara

I don't know of anyone with H & N cancer who hasn't had r/t. Bill has never smoked but did like a drink.

Keep your chin up and be positive for your dad.

Angie

Hello Sara

A choice of radiotherapy or surgery is only given where both are for curative intention. Surgery is used if reconstruction will give a good result. If not, it is radiotherapy only. But the radiotherapy has its side-effects, and surgery is not easy after radiotherapy. So surgery is preferred in the first instance if the morbidity is acceptable; it also allows radiotherapy to be kept in reserve. Surgery followed by radiotherapy is for when the surgery margins aren't clear or there are lymph nodes involved. Hope that helps put the decision making in context.

Let's hope for a successful outcome for your Dad. Tell your Dad, it will be difficult but he will get through.

Best wishes
Vinod

Thanks Dr Joshi
Wish our consultant could have put it like that!
Sara