Hi everybody

Just an update on this thread as I have relised I've been spreading myself around on other threads!

Having now had 5 biopsies and FNA in lymph node, the consultant et al are still getting results back as pre-cancerous even though they are convinced there is a proper little bu**er in there somewhere!
So I'm going in on Monday for neck dissection, removal of tonsil tissue and a deeper biopsy to see if they can find something more interesting...
I stupidly didn't ask what type of neck re-section - dissection or resection? but as he said I will probably only be in for two nights, it may not be too drastic. Although they probably just need the bed and I will be sent home with all sorts of tubes and machines hanging off me!!

So I am eating everything that's hard, spicy,crunchy and dry this weekend whilst I have the chance, before surgery/radiotherapy/chemo starts....we're going to be having some strange meals!
Cheers
Sandy

Hello Sandy

It is usually a neck dissection to check out the lymph nodes.

Good luck for the operation and hope to hear from you that all's well and they found nothing!

Best wishes
Vinod

Sanjan,

I wish you the best of luck tomorrow! I will be starting my chemo as you go thru your surgery!

FYI I could redo the neck dissection any day of the week!

Radiation is worse on the mouth. But as a tip once your staples and everything are out massage your scar when it feels comfortable to do so. Mine was puckered quite a bit, a nurse and my kids dr told me to do that and it flattened nicely in a week but I didn't about a month post op. My scar is not to noticeable looks like someone took a red crayon and drew a line on me.

Any question feel free to ask.

Pam

Thats a normal time line Sandy.Rob went in one day had bilateral neck dissection,removal of secondary tumour in parotid gland 67 lymph nodes removed,56 staples from one ear to the other two neck drains and iv drip,and he was home 48 hours later.the neck drains came out the day after surgery and the iv after 24 hours.

Hi
Well,I ended up being in just overnight.
The neck dissection turned out to be a "selective" dissection,so is only about 4" wide and just one clump of nodes was removed.It is pulling a bit but nothing to bother me.
The only thing that is concerning me is that my mouth is lopsided when I smile or open my mouth wide.The surgeon said he had sectioned off the nerve that controls the corner of mouth, but it may be bruised and that is why it is not working.I just hope it comes back.

Mouth is very sore especially swallowing, but I know that will improve over the next couple of weeks. So I go back next thursday to find out if anything was in lymph nodes and to discuss radiotherapy/chemo plan.
Liz, I can't believe that Rob went through so much in such a short time - it's good thing that they get you out so quickly though, it's much better being at home, as long as you have support.
Pam, I hope you're chemo has started well and hasn't made you sick.Thanks for the masssage tip - I will do that when stitches come out.
I know that radiotherapy is going to be more painful in my mouth, but will the pain be all over instead of just the one side as now?
Cheers
Love
Sandy

Hey sandy

i am not going to bullshit you and say no it wont hurt all over because eventually it will.Maybe not at first and if you are lucky not for three weeks,but as the treatment builds up it will get worse.Make sure you have a contingency plan in place for dry mouth,sore throat,burns,ulcers thrush,painful swallowing ,cant eat, and burnt skin and above all PAIN MEDICATION!!Don't suffer in silence .Let them know your pain levels and dont try to be brave.They will ask you to score your pain levels 1-10 and if it feels like a ten then say its a 10.Read as much as ou can about radiotherapy side effects and keep your fingers crossed you might just sail through it.good luck

Hi
The results from the 7 lymph nodes that were removed showed cancer and the Consultant now says it originated from the right tonsil and on to lymph glands where it was just on the verge of spilling out and onwards. It has been staged as T2N2.
I've got an appointment tomorrow with the Dental Dept and then will be going to get my porno mask made up!
As it's now two and a half weeks since surgery, I'm still concerned that my mouth hasn't returned to normal folowing the neck disection.I still can't smile/talk properly or when I eat something like a cake, I can't get my bottom lip out of the way as it won't move down so I end up catching my lip between my teeth and the food.I know it's caused by damage to the nerve, but it is so annoying and I feel very self-conscious. I've now started covering my mouth with my hand when I speak to people.

Has anybody else had this?

Cheers

Sandy

Sanjan, My bottom lip did the same thing. Massage it to get blood flow going and to relax the nerve and muscle. It will take awhile. As for the radiation it does hurt and gives lots of sores so be aware. There is numbing liquid they can give you to swish to numb so you can eat. I used a lot of baby orajel to help numb my tongue and inside of my cheeks, I have a few fillings whiched caused me to have more sores where the radiation bounced off of them. Also get a humidifier because your mouth will be dry. Any other questions feel free to ask.

First chemo has went fine little achy but other than that not bad. My hair has thinned but I got a wig from the American cancer society.

Pam

Pam

Hi Sanjan,
I am about the same stage in treatment as you and also for tonsil cancer. I had my neck surgery on 18 Dec and will start my radiotherapy next month. I know just what you mean about your lip.
I remember before the surgery being told that my lip could droop downwards and in time it would get back to normal, or that i could have a lopsided smile. Neither of these have proved to be the case instead I just seem to have a lip with a mind of its own if i eat toast,biscuits etc the lip rolls into my mouth with the food. I am told it is nerve damage and will get better in time. for now i dont cut my toast into sqares or triangles and cut it into long fingers and hope for the best as it goes in! Wishing you all the best for your future treatment it will be interesting to see how closely our treatments map out!!!

I was told that my radical neck dissection might result in a nerve which controls some of the movement in my right arm getting damaged.

Movement did seem very restricted to start with.I was told the nerve was bruised but not permanently damaged.
My right arm,neck and shoulder felt severely weakened and painful for a few weeks before it slowly began to regain more mobility/flexibility.
The radiotherapy to my neck gave me some very tingly effects to my lower limbs when I moved my neck up and down. This was extrememly worrying until a consultant told me that some of my radiotherapy had been close to my spinal chord and had temporarily effected it. - Phew!!
This lasted for 6-9 months or so.

After 5 yrs plus I sometimes wonder what more side effects may arise!

cheers Tony K

Hi Pam

So glad to hear that your chemo isn't toooo bad.
Did you get your head shaved in the end or did you go for the wig to just cover up the patches?

I was wondering what sort of wig you chose - is it like your own hair or did you go for a waist length black hair one?!! - not very practcal with the kids!

When you had the radiotherapy, did the redness on your face look natural(in as much as it can) or was it a definite rectangle sort of area?

Also did you use the creams they gave you or did you find something better. I have read about the Radiance cream on here which it seems can also be used in the mouth, so I think I'll get some.

Hi gd

It's very interesting that we do seem to be at exactly the same stage. Let me know what you have done and we can compare notes!
What you say about your mouth is exactly what mine is doing! As you say, it is not drooping down but curling up over my lower teeth and I have to hold it down when I'm eating certain foods. One of the Doctors said I look as if I have a wry smile!
Do you know when you will be having your mask done? I'm feeling very nervous about having it made up and having my eyes and mouth covered.
How do you feel now following your neck surgery, and what type of disection did you have?

Tony
Luckily my arm hasn't been affected. It's just the muscle at base of neck that is aching, especially when I'm lifting carrier bags full of shopping out of the car!
The first thing the surgeon said to me after the op was - shrug your shoulders - and that was no problem.
Sounds scary about the radiotherapy being so near to the spine and getting tingling feelings in your limbs. I can imagine you must have been imagining all sorts of awful scenarios! I know that most things that seem terrible at the time, do gradually improve, but unfortunately I am not a patient patient!

Cheers
Sandy

Sanjan,

I didn't go for a waist lenght wig. Most of the free ones were gray and older lady looking. My husband picked out a highlighted blonde. My hair is brown with blonde and red highlights but everyone says it looks good on me. I got red from my nose down to the top of my chest. I used the Eucerin Aquaphor ointment only after treatments. Go in with clean skin or the ointment will turn to oil and fry you like an egg. I used it 3 times a day after I got home. I used baby orajel in my mouth so the sores didn't hurt. And dr prescribed a numbing swish to numb while I ate.

Feel free to ask me anything. I did shave my head it didn't get patchy from the chemo just kept getting thinner and thinner it was all over me and the house. Got on my nerves.

Pam

Sandy,
I had my mask done yesterday and it wasnt too bad at all, I laid on a bed and there was soft music playing whilst a large mesh like sheet was put on my face and smoothed round 0my face, it was really warm to start with and then I had to lay there for 20 mins whilst it set. My husband came in the room with me and i could listen in whilst he talked to the staff, although i wanted to join in the conversation when he kept getting the car regestration numbers wrong when they were sorting me out a car parking permit. It isnt something that i think would be bothered about if it had to be repeated.
I then went for a CT scan wearing my new mask.
I had a radical neck dissection and an extended tonsilectomy on 18/12/09, I am told the cancer was localised to the left hand side and I should only receive radiotherapy (combined with chemo)to the left hand side of my neck, this will start 15/02/10. I have had a peg fitted which I do not like at all but I am told it will become my friend in the weks to come!! Like you I am getting the radiance cream, I have also paid a visit to my dentist and got some supplies in for my teeth health. I am impressed by you doing the shopping I have hibernated a little and dont tend to go too far without someone with me. If you wish to send me a private message and we can compare further notes.
Take care

I got through my mask making ok. It is a very pretty lilac coloured mesh and comes down to half way over my chest. It feels very tight over my face and throat and I feel a bit panicky when I try to swallow.I'm sure I'll get used to it after a few times.
My husband thinks it looks like a beautiful piece of art and wants to hang it on the wall when I've finished with it!

I was told I'd be starting radiotherapy in a couple of week's time, so it was a bit of a shock when I got a phone call this afternoon to say I am now going to be starting tomorrow!
It has been decided that I won't be having chemo as well ,but an extra rads each friday.

On a different note - I read about a new product called Sensitrol Bud, which are cotton buds containing Potassium Oxalate.They are meant for people whose teeth give them pain when eating hot or cold food. They say that they are a powerful de-sensitiser that immediately block pain.
I wondered if they might be useful on mouth sores - does anyone know?

Cheers
Sandy

Hi Sandy,

Reading your post really took me back. I had my radiotherapy back in April, 2008. I didn't have a mesh mask but a full plastic one with the eyes, nose and mouth cut out.

I also had to have a gadget in my mouth (it was a cut down syringe) to keep my tongue down. When they made the mask they also made a mould of my teeth and I had to grip on that whilst I had the mask on.

It will feel very tight to start with but mine loosened up as I lost a bit of weight. I am assuming that they bolt you to the table in the mesh mask like they did in mine. So I didn't panic, I just kept saying to myself this has to be done, hundreds of other people have had it done, it only lasts a matter of about 5 minutes so be brave.

I wish you all the luck in the world, you will be fine, let us know how you get on.

Sorry but I have not heard of the product you refer to.

Best Wishes
Sue