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.

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 

Hi Peter no problem any questions please  ask either me or someone will get back to yiu

good luck 

hazel

Hi Peter no problem any questions please  ask either me or someone will get back to yiu

good luck 

hazel