Hi!
I've just been diagnosed with tonsil cancer. I have had a lump on my neck for 3 months which now is the scondary sight.
I am booked in next week for removal etc.I am going to have a "peg" which will help me eat.
I have been told by my consultant about thing that he may find and possible problems with my neck muscles and shoulder muscles post op.
Any suggestions on how I will feel after?
Annew

Anne I'm really sorry to hear you have to go through all of this. Try not to be frightened and ask lots of questions however silly they feel. Make a list of questions so you can ask without missing the vital question.

After the op you'll have a really very very sore throat. I had a tonsillectomy at 21 and it was very sore. 30+ years later I had a secondary SCC lump in my left neck removed. Despite no tonsils that felt like a one sided tonsillectomy. You know that strepsil advert where everything is so rough well it will feel like that.

For four days or so you throat will be super super sore inside. This won't sound nice but when you wake up you may spit blood. No one told me that at 21 and it was alarming, but is normal.

Then daily over a few weeks the throat will feel less sore. It is a sightly different sore throat than a strep throat. About 8 days after the second op I recall slowly eating a full roast pork dinner when family visited. Slowly mind and I was last to finish! Food (meat)after rads is adiff matter though.

Not sure why you are having a peg so soon. I can assume you are having the peg as they plan on doing radiotherapy quite soon after. I'd ask about that. You get the sore throat all over again and worse when you have the radiotherpy. But somehow you take each day as it comes and cope.

Only have personal experience of a nasal tube not a peg. One problem with peg or nasal feeds is that you feel full and stop taking table food orally. I'd advise to try to eat with the mouth if possible and believe I have a good swallow now due to not having a peg take over everything. Oral ingestion helps keep the area working even if it is difficult to swallow and bites are tiny or purees.

Anne you may feel rough now or have felt off colour for ages. A word of comfort when the lump is removed I felt personally better in myself than I had done for over a year. If your eyes are dull looking now they will regain a new brightness and if your hair has been a disaster suddenly within a week it will behave itself. You will probably also have lots more energy within a few weeks. I had forgone my fav activity of shopping for months then two weeks after the op suddenly was at the sales all the time. I think I slept most of the previous 6 months away dozing off all the time.

It may be different for others, but that's how it was for me.

Dear Anne, I can only answer from a Spouses point of view, but here goes.
My first bit of advice is to take things one step at a time, its easier to cope that way.
My Husband also had his Peg tube put in 2 days befoere the Neck disection. He found it painfull in the evening with trapped wind, but was given good pain relief so dont be afraid to ask for pain relief if you have any.
After the Op. he had a couple of drainage tubes from his neck into drainage bottles, a Morphia pump which he controlled himself(its set so you cant give yourself too much he & felt no pain at any time) & a bladder catheter which was removed next day.
Its usefull to have a small toilet bag with handles to pop the drainage bottles into when you go to the toilet(or a dressing gown with 2 deep pockets).
All this sounds awful, but he was up & about the next day, ate a Salad the next day!! & was discharged on the 4th day with his clips still in to be removed later & only on Panadol.
You should have a visit from a Physio who will show you how to excersize your shoulder to keep it mobile & a Dietician to help you with the Peg tube.
Well I think thats enough information for you to absorb for now. There will be lots of other things you may want to know in the coming weeks, if I can help you in any way, pleas ask away.All the best

Hi Anne
Sorry to hear your news, I too had left tonsil ca which was found last Jan. Problem was I had the lymph removed 1st then had to have another op to remove tonsil so I didn't end up having the major lymph node surgery that it sounds like you are having. I think they just pre warning you of any side effects of surgery, as you have alot of nerves & muscles in the neck area.
I can only comment on having the PEG fitted which I also had. this is prep for radiotherapy and is a godsend. Try to eat for as long as you can, soft foods like fish and mincemeat type meals, mash potato etc, soft foods that don't iritate the mouth or throat. Your dietician will work out the feeds you need to take for size & current weight and the milkshakes give you all the nutrician you need. I personally didn't find not eating a problem but then I had enough fat reserves and really its been the best diet I have been on (well thats my little joke I used to get me through it!!)
Good luck hope everything goes well for you, everyone on this site are fantastic keep in touch.
Take Care
Yvonne
x

Hi Yvonne,
thanks for your message. Being informed is the best way for me to deal with stuff. I'm being admitted Monday so won't be around for a while. I'll let you know my experience- good or bad!
Keep smiling
Anne

Good luck Anne and hope everything goes as smoothly as possible. spk soon

Anne... We are all pulling for you! Along with those who are physically there with you during this difficult time... Just remember that WE, (the members of this special website) collectively send out our love and support too... which we hope you'll wrap around yourself like a warm blanket... a constant reminder that you are not alone. Others have taken the same steps before you... and now share powerful stories of hope and healing... proof that cancer is NOT always an end, but rather a detour (albeit hugely challenging) along the journey. May God hold you in the palm of His hand.

From my heart,

Melanie

Hi, I'm back home after 10 days in hospital.
Had a very dodgy night after op but settled down after alot of help from the medical staff.
Throat not sore, neck ok. Lost feeling down left ear never to come back. Bottom lip is a bit wobbly but getting better.
Have been doing lots of physio and can now lift my arm up.(There was a fear that I might have to have the trapesius nerve cut but now only badly bruised.
Had to have tooth out today as Ive had alot of toothache this week and I need my mouth in good condition for radiotherapy.
Still, ticked off the first stage bring on the next!
Anne

Well done Anne. Keep fighting and good luck with the next hurdle

Hello Anne

Keep your chin up. You will get throught it all. Now you have to nourish yourself well and fortify yourself for the next stage. Try and put on some weight now as you will soon shed it off.

Regarding care of your mouth and teeh, I advise starting now to keep (as for patients following radiotherapy) a very high standard of oral hygiene : brushing four times a day (after meals?) using interspaceto scrub the teeth at the gum margins circumferentially and interdental brushes to clean in between teeth, followed by 1 minute of fluoride mouth rinse ( FuoriGard AF (alcohol free) ), and additionally at night before bed a 5minute scrub of the teeth with a Fluoride gel(e.g. Colgate's Fluorigard GelKam).

The water-pik is useful in washing out food debris if the mouth gets sore during radiotherapy, but it won't shift plaque so the fluoride mouthwashes are a must. Brushes used properly are still the best.

You will find the tips and advice given in past discussions on mucositis useful. When the mouth is sore, sometimes there is only so much one can do and that's okay as long as you revert to a good standard of care later when the mouth feels better.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Well Done Anne, keep positive and remember we are all here if times get difficult.
Take Care
Yvonne
x

Hi there!
Been to see oncologist today and am to start chemo and radiotherapy in 2 weeks time. Having mask fitted next week. So got a couple of weeks to have a good time . Off to Wimbledon next week . Hope I have a seat weher I don't have to move my neck too much!
Anne w

Had a good day at Wimbledon but hard work sitting all day. The shoulder pain was immense!
I'm much better if I keep moving about.
Off to have my mould done today for radiotherapy.
See you!
Anne

Hi Anne
Glad you had a great day out, days like that keep you positive.
Hope the mould fitting went well, I also had chemo/radiotherapy, (I celebrated my 1st aniversary post treatmentlast week) so any questions I will try to help/answer!
Good Luck and all the best
Yvonne

Hi there!
everything ok so far. Ilooked up your profile and I am having same treatment as you.
How sore/sick did you get.How long did it take to recover? A year on are you back to normal?
I like to plan ahead!
Anne