hi all,

For once I am on the asking side with respect to advice. My wife has been having problems with neck and mouth pain and now swallowing and speech. She suffers from empysema and is a heavy smoker and drinker. At her Chest Clinic on Monday she was referred as an emergency to the ENT Ward and had 4 needle biopsies performed in her neck and was scoped up her nose and down her throat. She has been told they want to take a MRI scan and do a deep throat biopsy under a GA. We both know what they are looking for but have no idea even with my own experience of carcinoma of the larynx what the diagnosis, prognosis and treatment could be.

My wife has always had a phobia of cancer losing both her father and mother to lung and bone cancer and her elder sister is now also terminal with neck cancer. I need to offer support as best I can, but first need to know what she may be faced with. I will not divulge any advice I get here until after she has had results and the options from her medical team, but for my own sake need to know what she is likely to face so that I can give reasoned advice and support; I am no medic but I have lived with my wife for 35 years and I know her idiocyncracies and we will have mental health issues as well as physical treatment issues to contend with and she will certainly need counselling if the results are what we fear.

Her symptoms have been extreme pain in right side of her neck/ear and at least two distinct lumps have appeared on the right side of her neck. The pain has so far been treated as a glandular infection with antibiotics on and off since May but it started prior to a minor stoke she suffered in February. More recently but for how long I really do not know she has had soreness in her mouth such that she can no longer comfortably wear her dentures and she cannot now swallow solids with ease. She complains that her tongue feels "numb" and wont "work" properly, her speech is slurred as if affected with alcohol.

As I say I am not looking for a diagnosis that will come in time but what I am looking for is some guidance as to what options she might be given for treatment if it is cancer. My wife is in those band of folks (as was her mother) who feel very strongly that surgery is the worst option for cancer and; in her own case her other conditions relating to her lungs and heart are also added complications for that solution. She is petrified of losing all or part of her tongue, and will certainly not change her lifestyle for she will feel inevitably the damage has been done and the comfort of her habits will be essential for her mental health.

She has no friends outside family and although our elder single son now lives with us again he is seldom there and my employment means she is left on her own from about 7am to 7pm Monday to Friday. She was offered, tried and rejected clubs and day centres following her stroke in February and again I can't see that changing in future. She is very frightened and feeling very alone, leaving my employment to care for her is not an option as we would lose our home (another story). I am very worried what the diagnosis of cancer may do to her mental health and need to know what I might expect to happen.

Any thoughts would be welcome I know what some of you have been through, how can I begin to make my wife feel positive in the face of such potentially frightening scenarios??????? Alan

So sorry to hear you wife isn't well. Although I am unable to offer any words of wisdom, which has always been your domain. Surely, lightening can't strike twice. All I can say is that we are all here for you, as you have been for all of us.

Oh Alan, I don't have any words of wisdom either, but the symptoms you describe of slurred speech and problems with dentures, pain in neck, etc., sound dreadfully similar to my mother's.

Like Angie says, surely lightening can't strike twice !!

I keep you in my thoughts and prayers.

Alan
Just in case you haven't seen the other thread and the worst does come to the worst, I don't know if this might help.

I found it when I was trawling the Internet the other day


Looking Forward The Speech and Swallowing Guidebook for People with Cancer of the Larynx or Tongue 4th Revised edition
Thomas, Jack E.; Keith, Robert L.


.
Paperback; 144 pages | ISBN: 3136662040

Our Poor Alan...
You've always been there for us with your wise words and fond wishes. & you're important to us here.
Whatever the outcome may be we will all help and support you anyway we can.

I'm sure you're aware of the side effects of R/T & chemo. & i'm sure you could find them just by searching through the site.

I expect her treatment would depend on the stage of the possible cancer. & if your wife is set against surgery then chemo/R-T might be the way forward. But thats for your wife, yourself and the doctors to determine.

Unfortunately there isn't anything you can do to make your wife feel positive. Feeling positive is something that has to come from within yourself.
In my darkest days there was nothing anyone could say or do to change how i felt. But it's hard to feel low and iserable when everyone around you is up and positive.

& you know what, whatever this life throws at you i'm syre you'll deal with it in your usual grace and offer her the shoulder you give to al of us.

Could her slurred speach be a result from the stroke perhaps? (clutching at straws).

In the mean time... It isn't cancer until they say its cancer!

Keep us posted.

hugs...
Michelle x

Thanks all, Winnie I will find that pubication and keep it in reserve. Angie/Chelle thanks.

We shall wait for the results and take it from there: meantime I pray for wisdom and the strength to support my wife and respect her decisions whatever they may be. Maggie knows litte of what could be in front of her and the initial shock is turning into fear. I cannot let her anywhere near this site just now for she is a pessimist, and does not share the depth of my Faith whereas I have been the optimist and believer much to her distaste at times. God give me that strength and wisdom to help her bear her fear and show her the depth of His love and care as Cookey showed Robin.
I hope it turns out to be benign. How I pray to my God that He is merciful, but it does not work that way. I will not allow my Faith to be destroyed because this life is not the be all and end all, well not for me yet if death is the end then there can be no regrets after your dead for living life believing there is a force infinitely superior to our puny species willing us to love and care for each other, what harm could ever come of that.

It can only be harmful when those who think they believe also think they know God's will better than He does, foolish; dangerous thoughts which drive the misguided and vulnerable to their own death and the destruction of innocents in a perverse search for personal glory instead of giving praise and glory to God: may God have mercy on their souls as He surely will on their victims.

Chelle we await on tenterhooks your own results, we did not get your news report up here in the North, but you are the voice of thousands, we must give encouragement for all who are afflicted until this disease is eventualy beaten as it surely shall be in the future, just as night follows day.

I will keep you advised, and take succour from your kind thoughts and wishes for my wife and I, Alan

alan
you have always been so supportive to us here and now it is time for you to offload your worries and fears but you will overcome them becouse you have such faith and strength and you are a very strong person we are always here to listen and offer advice . love bev

Hi Alan,
Just don't have the words to say how sorry I was to read your post.
Your wife's symptoms sound almost identical to what mine were until I had my back tooth out and the cancer presented itself. I truly hope the results will not be the same.
I found that one of the main issues I had, was that no one prepared me for the possible amount of facial disfigurement that can occur through surgery.
If the worst comes to the worst and I'm praying it won't, please make sure that if surgery is needed, that this is an area that is discussed fully. I know we should not make differences between male and female but from a females point of veiw, I found the disfigurement very hard to cope with at first and still have bad days.
At fifty, perhaps I should not let it get to me so much, I tell myself it would have been far worse if I'd been in my early twenties or so and just starting off thinking about settling into a relationship and such things. Unfortunately it is NOT an age related issue, espeicially in these days of visual immage being promoted and expected as it is.

On a brighter note, I have an updated photo. (Yep got my student ID and the photo is much better than the one on the site at the moment) With Krishans help I hope to update it soon. Would you believe not for vanity sake either. I just thought it might help others who have surgery see that in time things do improve.

I will be thinking of you both.

SusieR

quote:

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Dear Alan
I've just found your post and feel totally deflated. Whether or not it is your worst fears founded, how can this happen to people who have already been through the trauma and stress of cancer.
I have no words of wisdom, Alan but please know that you and your wife are in our thoughts. I know your faith will give you comfort however it doesn't necessarily lighten the load.
Love
Deborah and Trevor

Hi Again Folks,

Maggie has been given a MRI scan appointment for this Wednesday at 1100 am, no word yet on the GA biopsy.

Susie I appreciate what you say about disfigurement and know like you Maggie would find that hard to take. I do not think any woman whatever their age Maggie will be 60 in January, would react differently. I recall with my own Laryngectomy I was well prepared to lose my voice but no one thought to tell me I would have a stoma and breathe through my neck for the rest of my life: that I only discovered on admission, came as quite a shock. We are used to it now of course but it is still enough to make some people wince when they realise I have a hole in my neck. It took Maggie the best part of 18 months to bear to look at me without a covering over my stoma. By the way I would have thought you were significantly younger from your photo and am looking forward to see the update!!

Deborah and Trevor it will be a knock if both of us have to suffer this afflication which I would not wish on anyone and is why Pauline I hope that there is room for an alternative diagnosis. I will not suggest anything to Maggie except that the suspect growths may be benign, as it would be too cruel to give her hope and then have those hopes dashed.

Surgery will, apart from the prospects of disfiguration, have to be carefully considered as an option in any event due to Maggie's history of emphysema and two small strokes. But I read over the weekend however that there is a new chemical treatment which is generally available in Scotland though not yet in England and Wales for neck and oral cancers which might be used where other options are not available.

In any event Maggie seems destined to have many decisions to make over the next few weeks and I appreciate the thought and prayers of all my friends here, thank you all. Maggie does not share my strength of Faith but you folk only help to confirm that the Holy Spirit is alive and well and at work through each one of you and your support demonstrates his infinite love for his Creation. May God continue to pour his blessing on you all and all whom you love, Alan.