Mike so glad to hear you are taking your mum with you. It is good to have another pair of ears listening as sometimes we can't take it all in and the other person hears things we do not or choose not to hear.

I recall a friend of mine pointing out some important aspect of the discussion on inner damage to the throat in the radiotherapy treatment that had passed me by in my quest for other answers. So it's almost two heads being better than one and also helps the medical team to know you have support in the treatment plan.

Hope today is the start of a successful outcome.

Dear friends

I had my full diagnosis yesterday. I have squamous cell carcinoma in the form of a tumour in my mouth.

The good news is, it has not yet spread to my nymph glands as they had thought it might have done. So, its in one area at the moment.

They are planning to cut it out and also maybe radiotherapy afterwards. They have not yet been able to give me a prognosis as they are still waiting for the doctor in Bristol to give his report. But they said that the operation they are going to do for me has been very successful in the past.

Would you believe, my aunt's mother in law and the exact same operation I am having a day before I got my results. Uncanny. She is 70 and has chain smoked her whole life and is doing well post op. So, the outlook for me is good.

The only thing that worried me was that he explained the cells are poorly differentiated, which I seem to remember reading gives one a lesser chance of survival. He basically said that was not good news and that because of that they would have to cut a large area of my gum and under my tongue to get it all.

The main thing I am worried about at the moment is speech afterwards (I was an actor and use my voice now in my training and other drama work) and also just the general feeling of post op.

I have stopped smoking by the way. I stopped for a week but with the pressure of yesterday looming had a few. But last night I put out the last one and vowed not to have another. The Consultant said that is was smoking that has caused my cancer. And that if I carried on, I would get another one.

So, at least now I know what I am facing. I am doing a good job of staying posistive but my mum is having a hard time. She was okay yesterday but today she has found things hard.

Thanks you all for your support.

Mike

Hi Mike, so sorry to hear the news was not what you wanted to hear. There isnt much anyone can say , except we will all be rooting for you & thinking of you in the coming weeks. We have some brilliant oncology teams in this country & they will really do their best for you.
Your Mum will be worrying for you, we dont like to see our Children hurting. Give her our love & keep in touch.

Hello Mike

No spread to lymph nodes is great news. Whether differentiated or not, it doesn't really matter as the tumour still will need to be removed. Focus on getting yourself as fit and well as possible for the journey ahead. You might get a few tips from fat buddha! We are all here to help you through this, anytime.

Best wishes
Vinod

Dear Mike...

Wow... you're an actor! That's awesome. At this point, try not to worry about things like your post-treatment voice. My husband's voice was audibly a little different for the first six months or so... but, now, over a year later, it is only a very subtle difference... and I'm about the only person who can detect it. I think some people can be helped post treatment/healing by Speech Therapy too.

I think it is very fortunate that your cancer seems to be localized (and did not spread to the nodes). From what I understand, the cure rate is much better when there is no nodal involvement. I also have read that, once in remission, the chance of any recurrence is reduced greatly when lymph nodes were not affected.

Were you told what stage the tumor is by chance? If not, they will probably let you know soon... or just ask if they don't mention it your next visit or two.

Obviously we were all hoping your news would be different... however, there are a few positives (such as clear lymph nodes) that can be focused upon already!

As for "poorly differentiated" cells... My husband's diagnostic pathology report stated the exact same thing. I never knew either what this meant until Pauline's explanation post. (I'm still learning little things a year and a half later!) Anyway, please remember that my Dan's cancer is in remission today... in spite of being catagorized as the most advanced stage (4)... lymph node involvement... AND "poorly differentiated" cells!!!

As you have questions in the next days/weeks... remember to ask your docs EVERYTHING... and post notes to us as well. Keep your mind as focused on ridding your body of this cancer as you possibly can... You will DESTROY this tumor... one bad cell at a time, Mike! Follow the treatment plan to the letter... and let people help you out if they are offering... reserve your mental and physical strength for whipping this annoying cancer! YOU CAN DO THIS! One day in the not-so-distant future, like my Danny, it will all be behind you (just a crappy memory, bump in the road) and you'll be claiming back life, health, and your happiness once again.

I wish you the VERY BEST in what is undoubtably the challenge of your lifetime. My continued prayers will be lifted daily for you, Mike... and your sweet Mum too! Hugs for you and her both! Be a strong team... together!

From my heart,

Melanie

Hi Mike,

It is now Monday and just a note to let you know you are not alone.

Whatever transpired Friday you are still the same person today and you will be tomorrow. Illness is never easy and critical illness is hell to bear even with Faith.

Like Melanie thinking of you today.

DWR

My point about the cells was directed at maybemike when he was initially looking for clues in his consultation. When I was told, it was virtually the only unfamiliar phrase I was given along with the words Squamous Cell Carcinoma at my diagnosis the week after the neck FNA biopsy and just prior to surgery. My consultant was upbeat and said cells which were poorly differentiated needed further investigation and were not always what they seemed on first investigation. He said things sometimes showed differently during surgery. I saw the card that I recall taking to the doc who gave me the Fna and it just had that simple sentence on it. Like maybemike I wanted to know more yet sometime circumstances of the event don't allow that. It was more or less all I had to go on. I was alone when I was told all this and you don't take everything in having to relive it days after as you make sense of it all.

On the morning of surgery he asked if my lump had by any chance disappeared. So in some case I think it must be that there is a misdiagnosis for the lucky few.

No one ever told me I was occult just that they couldn't find the primary. I picked that phrase up overhearing doctors telling others about my notes, but knew enough latin to grasp their meaning. I think the internet was a wonderful and at the same time frightening medical dictionary of information. I read every crank remedy along with every cut burn and poison comment (surgery, radiotherapy and chemo).In the end I stopped reading and just put my faith in the team knowing I knew the right questions to ask and aware of what stages might occur in the future. Not a pleasant thought, but armed with info you can react differently.

So maybemike please look on the brightest side possible. You now have a diagnosis and can work from there. You will get lots of support from this site I'm sure.

Hi Guys

I go for my pre-op assessment tomorrow (today as it's 1:30am here!) and will try to get online to let you all know what's going on.

I have been well distracted this past two weeks with moving house and I am so glad I have managed to do it before the op. Managing to stay positive and am getting lots of support.

Still get moments when I forget this is happnening to me, but soon get bumped back down to earth when I feel that lump in my mouth.

I love to come back here and read all the great messages from you all from time to time and just wanted to log on and say thanks once again. You have been great.

Will send news as soon as I can. Thank you for your thoughts and prayers.

Much love

Mike

Good Morning Mike,
Your problem sounds rather like my experience of two and a half years ago.Your positive attitude will help a great deal,keep it up.You mentioned speech in one of the earlier postings,it is true to say that everyone's case is different.Most people have some difficulty at first,I think we all go from sounding a bit brain damaged to being able to communicate quite soon and then there is a steady improvement over the next few months.My first post op meal was a daunting task,my hand seemed to have forgotten where my mouth was so I shovelled a good deal of the food down my shirt front, over my shoulder,in my ear and a little bit where it should be.I solved this by putting a mirror on the table,it was as good as a sat. nav.my natural guidance system soon took over again.When you have a problem use this site to ask the questions,someone will have the answer.
I hope all goes well,a lot of people are thinking about you so please keep us posted.
Keep Smiling
John

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Hey Mike...

You're doing it buddy!... One day, one phase at at time. Proud of ya!! You will be "de-lumped" soon enough... Tumors don't stand up so well to the radio/chemo combo... They "shrink", then "crumble"... then DISAPPEAR!!!!

My Danny just had another scope done yesterday. Still "all clear" at the old tumor site (tongue base). He's just now off to work this a.m. and smiling

You will be A-okayyyyyyy!!! Looking forward to your posts whenever you can write them... but don't feel any pressure to "answer" all of the notes you are receiving. Just read our good wishes, "bask" in our love, and stay focused on the task at hand! Praying for our Mikey daily!

From my heart,

Melanie

Hi Mike Can I just join with all the others as we hold you in our thoughts and prayers for your coming op. Most of us know only too well the jumble of thoughts and emotions beforehand but put all your faith in the medical team, ask all your questions, but be guided by their wealth of experience. Take each hour (and strange situation) as it presents itself, knowing that it is one less to face and one nearer to getting home and getting well. We are with you all the way. God bless Bx

Hi guys

Just wanted to give you all an update.

Firstly, thanks for all the support you have given. It really does mean so much to be able to come here and read such lovely, positive messages.

My Op date is the 15th June. I will be admitted on the 14th and then the operation will happen the next day.

I had a very emotional night last night with my mum (me doing the crying!) and feel much better after having let off some pressure.

Obviously feeling nevrvous about the op, but determined to keep bright. They are planning to take a skin graft from my left wrist to put in my mouth. However, they have found that the circualtion in my left wrist is quite poor. This could mean they have to take it from the right, and I am right handed. Apprantly, there is some discomfort or ache in whatever wrist they graft from. So, bit worries about that. Anyone had this procedure and can offer advice?

If they can't take from either wrist, they will go for the chest or the back. This is a back up as the skin there is obviously tougher and the Consultant said it would feel like a big lump in my mouth and would cause permanant speech problems.

Really pleased to hear John that you started to communicate well quite soon. It is one of my big worries (along of course with getting rid of the cancer completely) and its nice to hear your story.

My family are being fantastic and I have had great support from friends as well as from you guys here.

I will try to give a quick post on Tues, but if not, as soon as I get back online after the op, I'll let you all know how it went!

Much love

Mike

Good Evening Mike,
Good to hear from you again.In case you are thinking that the operation is something the chaps in the white coats cobbled together in a hurry think again.It is a well established procedure which is carried out (in hospitals dealing with mouth cancer) several times each week, the surgeon who did mine has been doing one a week for nine years so he is a bit of a dab hand at it,and most of his mates will have similar experience. The next thought is "I will have a lot of pain when I wake up",forget that one too.I had very little pain in my mouth,my arm was uncomfortable but after two days I asked them to remove the morphine drip and give me a couple of paracetamol at bedtime that was all I needed.
No one likes hospitals,the worst aspect is boredom so take plenty of reading matter,you will be allowed to use things like a lap top but probably no internet connection.
Remember what I said in my last posting,if you have any questions ask them, someone will have an answer for you.Keep in touch Mike there are a lot of people thinking about you.
Keep Smiling
John

Hi John

Thanks for that. I thought maybe they did this operation a lot because they kept saying, "its usually mondays or thursdays..." Didn't realise that there were so many people who had similar problems.

So glad to hear that you were not in major pain afterwards. Its one thing I have been worrying about.

John, did you have speech therapy after or did you manage to get along okay on your own with that?

Dear Mike,

I know you are anxious (and understandably tearful), especially now that there is an actual date for the surgery looming closer. You and Mum will have your ups and downs in spirit, but I'm so glad that you seem to have a tight bond and will weather this together.

John's post was particularly comforting (even to me!) and so full of truth. (He's a solid icon on this message board!) I have no doubt that you will do every bit as well as he throughout the surgery, and beyond.

Warning...
When the operation is all done and you commence the recovery/monitoring segment of your hospitalization... Do not... I repeat - DO NOT flirt excessively with the sassy nurses!

My best in-hospital tips of the day...
Make your presence clearly known... Keep the docs and nurses on their toes... Demand (in a nice way that your every need be met (even the "silly whims")... Ask for whatever you want... Expect top-notch service (but be tolerant when there are staffing issues)... and remember, the sweeter you can be (even under difficult circumstances), the more "pampering" you will receive from the hospital staff. (I doubt you will have any problem with the latter... You seem quite pleasant by nature and it comes though in your posts.)

Will be thinking of you. (Tell Mum that she's in my heart as well.) There will come a day when all this is safely behind you, Mike. While life after a cancer battle may not ever be QUITE the same as before (there's no denying that from my own experience), joy WILL return to your world. (It'll creep back in before you even realize.) Human resilience and determination is powerful. We instinctively learn to adjust and adapt. We look for ways to be content in our worlds despite the odds (sometimes brand new ways). We discover the depth our own character and the scope of our amazing inner strength.

You are going to be just fine!!!!

FMH,

Melanie

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