Hi Jane

I also have just been diagnosed with cancer in the RHS Tonsil area ( I dont have any they were romoved as a kid 60 years ago) to say I am scared is some understatement also I am so emotional, I have no experience of hospitals and everthing scares me to death. I have a tosil biopsy next week , I have had biopsy of node in my neck<positive> and a PET/CT scan showing the primary as tonsil area.

First I was told it would be just surgery, then surgery and Radiotherapy and following the PET looks like just Radiotherapy will be used although they want to see the results of MIR scan before final decision.

As far as I know and was told Radiotherapy is very pecise although it will destroy some of the good guys near the target area but it is not a blanket area that is zapped.

I am scared of everthing and anything, especially the PEG thingy and the side effects that will come later, I have a terible gag reflex in my mouth so its the worst possible place to have people poking me about.

But we have no choice and have to face it head on. Keep strong!!

Hi CB,

Try not to worry. I'm just recovering from tonsil cancer and whilst the side effects of radiotherapy is no joy the survival rate is one of the highest of all cancers.

You'll probably get 7 weeks x 5 days (Mon-Fri, weekends off!) of radiotherapy (10-15 mins & painless), plus a dose of chemo on your first day and one about 5th week in. It's Grade A world class treatment. They'll probably test you for a virus called HPV, which if you have, bizarrely increases your survival rate further.

You'll probably need to arrange lifts after first week or so of treatment, as you'll feel *** for driving. Get a rota in place for people to take you as soon as you get your treatment schedule. Taxis other option if hospital not too far away, wouldnt recommend public transport. 

Pre-treatment you'll have a PEG or some other type of feeding tube fitted to your stomach as you'll be living on medical nutrient milshakes for a while as your throat being nuked by high powered X Rays will be "closed for business". Eventually this will be taken out post treatment and you'll wean yourself back on to normal food over a few months, sloppy stuff to start, then more lumpy stuff then tougher stuff to chew and swallow still later (I'm still on semi-solids 4 months after treatment but PEG removed).

Tips :

1. Don't worry about Radio or Chemo they aren't painful

2. If offered some "sedation" for your PEG fitting, take them (benzos) as it can hurt a bit

3. You'll probably have to a have a few teeth out on the side of your cancer. These are any teeth deemed at risk of future extraction as they can cause problems with your jawbone if extracted after radiotherapy. Restorative denistry is an option, I'm just chewing on one side of my mouth at present.

4. Worst time is last week of radio and the week that follows it. After that you'll gradually start to feel better.

5. Relax, it'll all be fine. They successfully treat up to Stage 4 tonsil cancer and once it's gone it doesnt come back.  

Oh, and I lost my wife to suicide early in my treatment (unrelated, Bi Polar depression) so if I can do it, anyone can.

Hi Hilts911

Sorry to hear about  the suicide  if your wife ,must/have been a very difficult time for yiu. But your words of advisecare somtrue cant comment in the peg as I was told wouldn’t need one so had feeding tube at week 4 for 45 days. 

Keep strong

hazel 

Yeh it's been hell Hazel, the loss of my lovely wife at only 47 years of age dwarfs any of the cancer treatment or effects. I was the one to find her. I am having weekly councelling (private, as public waiting list was untenable). 

I guess thats why I am so sanguine about it all. I can live with the cancer an all it's got to throw at me, although I fear my broken heart will never mend. Got to try and get through each day though and hope for better days ahead. 

Hi 

if I can help at all with the cancer effects just shout out . I fear you are right about broken heart but just try and live for each day slowly slowly. Am a good ear if you want to rant. If I prefer send me a friends request then it’s not on open forum. Otherwise take care 

h 

Thanks Hazel,

Only things I am struggling with (treatment after effects-wise) is ongoing dry mouth, and appetite to move the eating forward more back to normal. I use the bioxtra products and/or water for dry mouth. to be honest unless I'm doing alot of talking thats not too bad but talk alot and I need the gels/sprays/water all the time.

Struggling with appetite for real food, I can eat Spag Bol, Shepherds Pie, mild curry/chilli, soft pasta dishes etc but could do with some motivation to eat more regularly. I think the extra layer of bereavement grief on top of radiotherapy has killed my appetitie and watered down the mission to push myself as much as I should. I rarely get hunger pangs and still have trouble swallowing properly. I know I could do more, but when you're not hungry and mired in grief it's all too easy to reach for a nutri-shake to get your calories in a balanced way. I can eat dessserts but they have lost their appeal having had so many.

Hilts911/Others

Just though I would add a little to what Hazel has helpfully provided.

I totally undertstand re struggling with appetite and I'm week 17 post treatment and still struggle with my appetite and still on ensure drinks.Same with havig no hunger pangs or desire to eat and lost quite a bit of weight. I also just often reach for the suplement drinks as easier trying to force eat, but I'm sure thats just a time thing.

As Hazel has alluded to this is no great picnic when it comes to treatment and recocery and it cab be a real challenge so sympathise. To give some confort in al this, I found the actual treatment not too bad and you get used to it and its only 10 mins a day for radiotherapy. It's the recovery after treatment that I have found the most challenging. Chemo is not always part of treatment and will all depend on size/location etc and will be decided by consultant. I never had any chemo and had 30 sessions of radiotherapy daily over a period of 6 weeks.

I started a thread called Radiotherpy for Throat Cancer and its here under living with cancer.
Please feel free to join in as there are quite a few of us who have pulled together in terms of support advice etc.

Like Hazel I have kept and written a blog from the start and logged journery warrts and all.

Please feel free to read my blog as well as Hazel's and will give you an idea of my joureny, warts and all and what potentially to expect and there is also a section with a collection of tips pulled together.

We are all different as will recovery period, but we hope our blogs are helpful and give an insite to our experiences with this.Again, like Hazel we found the challenges worthwhile at the end of the day as we both have had the all clear( mine was 2 weeks ago ) and the light at the end of the tunnel does actually exist.
Please keep us posted and let us know if we can be of any further help

radiotherapythroat.home.blog

kind regards

Ian

Hi hilts 911 I also use the bioxtra products only ones I find that work. Re salivating try chewing sugar free gum with xylitol not sorbitol Holland n Barrett do it and if u can getbtridenr gum that’s good it helps  stimulate the saliva 

on top of everything else it’s difficult  to regain appetite our tummy’s have shrunk  during the atment and no longer can we eat 3 square meal s a day so little amd often is the way to go .

inagree sweet things for me work but don’t want to eat rubbish all the time somso e days but I also have an Ensure justbto get the  calories in. 

I am finding  food from my childhood easier than mild curry’s lol no such thing some days pasta n tomatoes are ok. One tip is toast a soft read cake on one side then in toasted side mashed avocado topped with a poached egg is good and calorific. 

Fried fish in batter also goes down well sontry chippy if yiu have one tomorrow only small portion don’t overface yourself   Tell me to mind my own business donyiu have any children ? If so get them involved if yiu can 

Stew n dumplings go down well plus Yorkshire puddings frozen ones are fine even me a Yorkshire lass have been using them  

Take care

h 

I finished treatement for tonsil cancer and in lymph node in neck on 18th March.  God that was hard, I had radiotherapy for 6 weeks 10 mins approx a time each day and chemo once a week also for 6 weeks.  The first couple of weeks werent too bad then the fatigue hit me.  I had trouble eating most things as acid burnt my mouth so fruit was out and I survived on soup and porridge for weeks and then finally used my PEG to get my nourishment as a top up.  I think I may be one of the lucky ones as I could swallow most of the time bar about 4-5 days and now am recovering well and due to have the camera down next week to inspect the tonsil.  I can eat most things but am very dry mouthed and need water with me all the time and find that the only drinks I can manage are water and tea but tea increasingly makes my mouth more dry.  My taste buds have gone to pot and chocolate tastes horrible to me now and i was a chocaholic so that is hard to cope with and cant manage anything like crisps etc but can eat mashed potatoe with loads of butter and sandwiches if loads of butter on and a filling like tuna and mayo or egg mayo.  I lost quite a lot of weight but have sort of levelled off now and am maintaining and have not used my PEG for weeks. I am just back to work full time this week but get home after a full day and need to sleep for an hour before tea but hope that will gradually improve as I get fitter over time. Only just found this forum or I would have put something on before. I wish everyone well and keep plugging away, it will get better.

I finished treatement for tonsil cancer and in lymph node in neck on 18th March.  God that was hard, I had radiotherapy for 6 weeks 10 mins approx a time each day and chemo once a week also for 6 weeks.  The first couple of weeks werent too bad then the fatigue hit me.  I had trouble eating most things as acid burnt my mouth so fruit was out and I survived on soup and porridge for weeks and then finally used my PEG to get my nourishment as a top up.  I think I may be one of the lucky ones as I could swallow most of the time bar about 4-5 days and now am recovering well and due to have the camera down next week to inspect the tonsil.  I can eat most things but am very dry mouthed and need water with me all the time and find that the only drinks I can manage are water and tea but tea increasingly makes my mouth more dry.  My taste buds have gone to pot and chocolate tastes horrible to me now and i was a chocaholic so that is hard to cope with and cant manage anything like crisps etc but can eat mashed potatoe with loads of butter and sandwiches if loads of butter on and a filling like tuna and mayo or egg mayo.  I lost quite a lot of weight but have sort of levelled off now and am maintaining and have not used my PEG for weeks. I am just back to work full time this week but get home after a full day and need to sleep for an hour before tea but hope that will gradually improve as I get fitter over time. Only just found this forum or I would have put something on before. I wish everyone well and keep plugging away, it will get better.

Hello Jowispa

Better late than never!

Well done on finishing your treatment and sounds as though you are coping and improving having really been through the mill. Any chance of posting your back story as to how you found the cancer, diagnosis, lymph node involvement and any surgery? It may help others who regrettably follow us here.

I went down the purely surgical route for the same cancer of the tonsil, HPV 16+. You are therefore my sliding doors moment as I could have opted just for radiotherapy. a couple of ways to skin my particular cat as no lymph node involvement (however all nodes removed just to be certain).

Cant believe you are back at work so soon..... needs must or are you up to it?

Im sure things will continue to improve for you. Good luck with the camera down.... you will get used to that.

Jane x

I noticed a lump on my neck while talking to a friend.  I had no pain or sore throat or any signs of any problems but thought I had better check out the swelling.  I found out on 21st December it was a squeamous carcinoma on the tonsil and in the lymph node in my neck.  I didnt have a choice of treatment, I was just told I would have chemotherapy and radiotherapy and tonsils would not be taken out.  If when I have my final scan in July they may or may not remove the lymph node in my neck depending on the scan results and if all the cancer has gone.  I am up to it to be honest, if I sit at home I will only have time to worry about the possible outcomes and feel that my mind would be better off used at work.  I do have a sedentary job which helps but after a full day I go home and have a kip for an hour before tea which seems to sort me out.  I have a croaky throat but assumy that is due to the radiotherapy damage but will find out when they have a look with the camera on tuesday.  I am using my work computer to do this as I dont have one at home and I get the feeling everybody is ready to go home so I will be back again tomorrow.  It is nice to communicate with people who have had the same thing and get some idea of what other people are going through.  I will sign off for now but I will be be back.  Oh and I was told it was caused by the HPV virus and I was just unlucky.

Jo

Hi jo thanks for updating am sure scan will be fine. I am now 10 month post radiotherapy still having dry mouth issues but gettingbon with living.

Keep in touch

hazel  

Can you taste better now? does your mouth get sore inside when eating or is this something that wears off over time too?

Hi my mouth doesn’t get  sore but strange as this may sound it gets tired from eating some days. I’ve been lucky re ulcers once my radiation burn healed which took at least 12 weeks post treatment I’ve not had any ulcers. 

Just issues with saliva I have some saliva it’s jyst not normal consistency it’s thick 

hszel

Hi Hazel 

I am currently 16 days post treatment which consisted of 30 sessions of radiotherapy and 2 of chemo over six weeks ,everything luckily seems to be on the mend but I am experiencing some dryness to my mouth caused by the saliva glands being battered ! Has there been any improvement to your dry mouth ? are you producing any saliva ? I am really hoping I get some improvement as this is quite tough to deal with . Obviously everyone is different and some people I have read about are lucky enough to regain some natural saliva production . I just worry about how to cope with this long term .

many thanks 

Peter

I finished my treatment in Nov 18 and to date only a slight improvemnet in dry mouth. I am told "it wll be ss good as it gets 2 years after end of treatment" but it won't be 100%. You'll just have to wait and see/ I had 35 sessions of radio so you might be a little better off thn me having 5 less. 

After experimnting with alos the artifiial saliva sprays and gels I;m not using them anymore, especially the Bio-Extra Dry Mouth which strips the enamel from your teeth (can't velieve this range of products is allowed to be precribed.

I find using the Duraphat 5000 toothpste s often s possible plus the Colgate Flouriguard Dental rinse mouthwash are the best way to keep your teeth safe and help with dry mouth. Find a small sealable bottle and decant some mouthwash into it so you can carry it around in your pocket, it will be enough to last you all day. Also what seems to work exremely well is sugar free chewing gum. It seems to generate saliva for soem reason. And of course drink water but you'll not have to drink that much you are going for a *** every 10 minutes if you use the products above. 

Above all, don't panic, 16 days post treatment you wouldnt expect any improvement in dry mouth, as any improvements can take up to 2 years to appear. The sugar free gum I've only just discovered (don't know why the medics never told me about it) and is a bit of a game changer.

Hi Peter 

it really is early days for you yes I am noticing small improvements in saliva . I use sugar free gun look fir the ones with xylitol as first ingredient as opposed to sorbitol as I find it kinder to mouth . Holland n Barrett do one. I use bio xtra  dry mouth wash  and have no problems as mouthwash but wecare all different. I have  check ups every 3 month at dentist . Keep sipping water 2 years is the magic number when we reach that what we gave us what we’ve got unlikely to get much better but there are always exceptions. When u can eat a bit better than his water based food like cucumber and celery cut into strips help. Keep off all tea  snd coffee as they dry. Also use duraphat toothpaste every time you try to eat as well plus if u can stand them the interdental brushes as lack of saliva causes food to stick in teeth 

I have a blog with more tips 

www.radioactiveraz.wordpress.com

Keep in touch

Hazel 

Hazel , many thanks for the invaluable advice . I will definitely be reading your blog .

Peter

Thanks for some great advice .

Peter