Hi

I should have introduced myself before posting a question (re: asthma, see below on this board) - very rude of me!

My name is Sara, I live in North Yorkshire with my partner and four children. My father was diagnosed with tongue cancer last week, something of a shock to say the least! In my sudden quest for knowledge I've been trawling through cyberspace and have found this fantastic site. Reading through some of the posts and stories (not to mention the information), I have to say what a wonderful supportive community you all seem to have created here - well done to all involved.

I'm sure that I'm going to become a very frequent visitor and I'm looking forward to getting to know some of you. Hopefully my Dad will also become a visitor once I've taught him how to use the internet! I've persuaded him how useful it can be to him, so today he's gone out and bought himself a laptop - hopefully it won't take long to get him up and running!

We (my parents and myself) have a meeting with the MDT on the 7th November to go through all the nitty gritty and make a decision about treatment. He's been given a choice between surgery and radiotherapy. At the moment he's 90% sure that he's going to go for surgery, but I'd welcome any comments, suggestions, advice etc. that anyone would care to offer.

My concerns (apart from the obvious) are also for my mother and my children. My Mum's already not sleeping, I don't think she's eating much and I'm concerned about how to keep her going through my Dad's treatment. I'm going to try and pursuade her to move in with me while my Dad's in hospital (assuming he goes for surgery), but I know she'll refuse! Also, I'm not sure of the best way to tell my younger children, aged 8 and 9, (the older two (19 and 15) already know the basics). I guess I just have to be honest but try not to make it sound frightening - difficult when you're terrified yourself!

Anyway, this was supposed to be a short hello message and it's turning into an essay, if you've made it this far - well done and thanks for reading my ramblings!

Hope to speak to some of you soon.

Sara

Hi Sara
My mum was diagnosed with tongue cancer in April this year so we are a few months ahead of you. She has had surgery, removal of part of tongue, a flap taken from her stomach to sew onto the tongue, and lymph nodes removed from both sides of her neck. She coped absolutely fantastically well with the surgery - not so well with the radiation.

Her grandchildren (in their 20-30's) coped the best they could as we all are doing, but her great grandchildren aged 7 - 16 coped like all kids do, with simple questions like "when are they cutting your tongue out" and stuff like that !! They see things quite simply and cope better than us thinking adults sometimes.

It's a long haul and there will be some frightening times, but you WILL get through them. Accept any help and advice that is given to you and actively seek as much information as you can for your dad - that has helped me cope as much as helping my mum I think.

Hello Sara,

Troubling times I have not experienced cancer in the mouth either as a patient or carer but waiting for results on my wife. It is disfiguring treatment however and all musty be prepared by knowing what will be done and the consequences of the treatment on daily life.

I had cancer of the larynx which required surgical removal(1995)and subsequent radiotherapy.

I echo Winnie's words on younger children. My own children were mature by the time I developed my cancer but after treatment when walking the dog in the park; children attracted by Lana would ask "what's wrong with your voice, mister?" I would tell them that my voice box [pointing to their own adam's apple] "died" and had to be taken out which left me with a hole in my neck and a gruffy voice. Without fail the children would ask to see the "hole" which I gently refused saying only that I had to breathe through that hole instead of my mouth or nose now and I could not uncover it for fear of getting muck in my lungs. If they persisted and were with adults, I would let them see the stoma which following the explanation did not appear to phase the children in the slightest.

So I recommend honesty telling the young children the basics, then responding to the inevitable questions. No need to fear them with the worst possible scenarios but forewarned is forearmed - and if surgery is to be chosen they should know the consequences and not be surprised after the event and even be allowed to ask Grandad questions should he be comfortable with that. Alan

Thanks Winnie and Alan
Your kind words and helpful suggestions are much appreciated.
Winnie, your Mum's surgery sounds very similar to what my Dad is facing, except that the 'flap' will be taken from his forearm, and we believe that lymph nodes will only be taken from one side.
Alan, I do hope the news is positive for your wife.
I'm sure you're both right about the children - they do seem to be able to take things in their stride much better than those of us who should know better! As a psychologist I really ought to know what to say, how to counsel etc., but of course it's all very different when it's own family!

One thing is puzzling me a little - most people who have had surgery seem to have also had radiotherapy, but my father has been told it's one or the other. Do you think this is common, or is there a likelihood that following surgery they might decide he needs RT as well?

Thanks again,
Sara

HI Sara

I am not a medical person and have little experience, but I was not given the option as my cancer was too far advanced. I am led to believe however that where caught early enough radiotherapy may be effective in reducing the size of the tumor or even eliminating same. Chemo which I never had to endure is a much more invasive and radical treatment for more advanced cancers where surgical intervention would be either not viable or a very risky and/or result in a poor quality of life.

Given the choice I would have elected for the less invasive option of radiotherapy alone had it been recommended, but had no hesitation accepting surgery, the option after all was cleary terminal!

In my case radiotherapy post surgery was precuatioanry as my surgeon was confident they had removed all the malignant cells, but to be sure the adjacent area was irradiated and to be frank I was not going to second guess my medical team and twelve and a half years later I am still here.

I suggest your Dad simply asks, why the options what if he elects for non invasive treatment could surgery be a fall back any way, why are both being offered just now as alternative treatment? What are the pros and cons? He may have already asked all these questions and so has made an informed decision, but given the choice I would certainly have wanted to know as much as possible prior to choosing which treatment to go for.

I am not suggesting your Dad change his mind but only to be sure he is fully aware of all the ramifications of each treatment in order that his choice is based on reasoned judgement. May your Dad know the power of the love of God through you and all the family Sara, Amen

Many thanks Alan.
We will indeed ask all these questions (and many more) at our meeting on the 7th Nov. It appears that the consultant's first choice/option was for surgery, and that originally he was going to say that this was the only option, however, apparently when the radiologist viewed the case notes/findings he felt that he might be able to "deal with it" through radiotherapy, which is why this has been offered as an alternative. I'll keep you posted.
Sara

Hi Sara
i am amazed to read in your introduction,that Doctors are expecting your Father to make such a choice.
If he is being treated at a Cancer Centre then he is under the care of experts who have potentially dealt with many cases such as he has.Their experience and knowledge will be vast and with all the information from radiology and pathology they have acummulated,they will, or they should know what is the best way to tackle the disease.

I would have thought they would be giving you their recommendations,discusssing the consequences and outcomes of treatment and asking you if you have any questions which you no doubt will have in spades,not asking you to make choices at such a highly emotional time.

In my humble opinion if you have Oral Cancer diagnosed you need to be informed of the stage of the disease,the type of tumour,wether it has spread to any other areas,what the chances of cure/recurrance are,the long term after effects of treatment,and then you throw everything but the kitchen sink at it.

Get all your questions down on paper before you go on the 7th and make sure you ask them all,and get them answered to your total satisfaction.If there is one single but,or maybe think very very carefully.This disease doesnt play nicely or by the rules,and you need evry available weapon to fight it.Make sure you get them Sara.

good Luck

love Liz

Sara,

I really cannot overemphasise the value Liz's advice especially the writing down of questions for the most sensible and probing ones normally come to our minds when we are not in the presence and in awe of the "specialists"!

Then take the time out for reflection and consideration, the specialists are that - but at the end of the day they can only proffer an opinion and advice - not fact for they are not infallible. Alan

Sara,
My mum was told that surgery was definitely the only way to go with her tongue cancer and, depending on what they found when they examined the lymph nodes in the lab, she MAY need radiotherapy. The cancer was found in one or two of the lymph nodes they took out, but none of the others. It was decided, as a belt and braces operation, that she should have radiation, and that's what happened.

Hello Sara and welcome,

My husband Robert was not given the option of surgery as he was diagnosed with base of tongue cancer and the surgery would have resulted in a poor quality of life. He was therefore given a large dose of chemo and radiotherapy which seems to have done the trick.

I think a lot depends on the location and stage of the cancer.

Please let us know how the meeting goes.

Lorraine

Thank you so much to all of you for your support and advice.

I have indeed been compiling a list of questions, and I have urged my parents to do the same, although I think that they are perhaps too overwhelmed by the situation to think that rationally.

Liz, I agree, to be given a choice of such magnitude without the information to enable you to make an informed choice seems almost cruel! From what I can gather the principal consultant was going to say that surgery was the only option until the radiotherapist intervened and said that he thought radiotherapy might be an option.

Additionally, it seems harsh to me to make him wait so long for this vital meeting. He was diagnosed on the 17th Oct and originally the follow up meeting to discuss the options was to be on the 24th, however this was put back to the 7th Nov. as not all the team members could make the 24th. At the same time he was told that whatever decision was taken, treatment must be started within 31 days of diagnosis, which effectively gives us only a week after the vital meeting to both make a decision and for treatment to be started!

My father wants to give it one really good shot, which surgery seems to offer. The surgical proposition would involve removing part of the tongue, all the lower teeth, part of the jaw, reconstruction of the tongue using a flap from the forearm, and neck dissection to remove some lymph nodes. However, radiotherapy would only target the tongue, which suggests to me that further treatment/surgery would probably be required, even if it was only precautionary.

Also, my father has said that it will be one chance only - in other words (I hope he changes his mind), if it doesn't work or recurs, he will not undergo further treatment. Therefore, we absolutely have to do as much as possible first time!

I will continue to compile my question list - and will add to it as the suggestions occur on this forum, and will let you all know what happens at the meeting.

Thanks again - I can't begin to tell you all what a godsend this website/forum has been to me - but there again I probably don't need to tell you!

Sara

Sara i am just off to spend the weekend in Hampshire to mark my husbands birthday with his family.I hope you continue to find information and compile your question list.Catch up on tuesday when i get back.

good luck

liz

Thanks Liz,
Hope you've had a great weekend.
Best wishes,
Sara