Sqamous Cell carcinoma, T4N3 back of tongue , lymph nodes on right side

Hi Suziewoos

Glad to hear you're home.

Will you be having another meeting before the TORS?

If they havn't already done so, do ensure the hospital arrange for one of their physios to see you to run through some exercises for your neck and shoulder to keep them flexible after the dissection.

As far as the TORS goes, it would be a good idea to enquire beforehand about pain relief.  Usually they insert a syringe driver for morphine which you operate while in hospital.  Presumably they will be inserting a nasogastric tube for the first few days?   I was also prescribed Oromorph, liquid Paracetamol and liquid Ibuprofen to take at home afterwards.  There are also products which can be prescribed to anaesthetise the throat before eating.  There is Difflam spray which can be sprayed into the back of the mouth which I found helpful, plus Oxetacaine and Antacid Suspension which has a slight minty taste and is swallowed prior to food.

To ensure I was getting enough calories I was prescribed Scandishakes which are fortified mild shakes.

My consultant advised me that it would be extremely uncomfortable for the first 2 to 3 weeks after the TORS but miraculously I would suddenly be able to start eating properly again.  She was absolutely spot on.  

Good luck this afternoon - be thinking of you.

Linda

Hi Linda, 

I saw the physio while I was in hospital & started to do my exercises as soon as the staples were removed this afternoon (about 22). I have difficulty putting my head back at the moment but I'll keep going. I have to say that the pain management for coming home is not great and I also had to buy latulose as this was not managed by the hospital either. 

I saw my consultant also this afternoon and he said they removed 43 lymph nodes and only one had cancer in so that's fantastic news for me. The TORS is booked & I'm attending the hospital at 7am on Tuesday 2nd April for the 3mms tongue tummor removal. I really hope the pain management is better for this one it's making me highly anxious.

Xx

Hi Suziewoos 

I'm pleased the physio saw you and you've started the exercises.  I had very little movement in my head to look up and it only really started to improve recently.  These exercises will be a daily routine for life to help keep the area flexible.

I've experienced a lot of problems with my left shoulder, arm and my neck generally so have continued to see a physio at the hospital every couple of weeks.  I'm pleased to say I'm at last seeing some improvement, especially since my new physio has started manipulating my back, shoulder and neck.  

I hope you managed to discuss pain relief after the TORS with your consultant.  Did they give you any indication how long you'll be in hospital?

I'll be thinking of you on Tuesday.  All the best.

Linda 

just an update on me.

I had my follow up appointment to my Cancer operations this afternoon: I've had both operations now. 43 lymph nodes removed only one cancerous. neck still sore and tender. Not a walk in the park but what a great outcome.  I had the Tors operation on 2/5 to remove what was thought to be  3mms tumor. ... my peg catapulted out of my nose in the evening after the operation. A nurse pulled it out without much warning which ridiculously hurt.and asked if I wanted another one inserted. I said no you are not coming any where near me after that!  I was told the day after the operation that the operation went well. That is all I was told. The consultant found me trying to eat porridge with a teaspoon and trying to drink tea - warrior!  He told me by day 11 all pain should be gone.  I'm in lots of pain still and I'm having difficulty swallowing due to no' back' to swallow on.  My speach is not so bad though.

Yesterday afternoon I had my follow up appointment  with the tongue consultant-  I didn't get the news I wanted. I've been put up to higher group risk C. During the TORS operation they discovered that the tongue cancer was more than 15mms so took a large area not the original 3mms tumour that was expected . This explains the swallowing and pain problems I'm now having. They took a 30x40 section out of my tongue plus took out my tonsils/part pharynx. the consultant said I'd need Chemo.  During the hospital appointment they took blood tests to check I could still have Chemo should it be offered on the trial but meanwhile the Pathos computer has randomised me to have ONLY the radiotherapy at the HIGHER dose rate treatment. I guess it just means for me I get the original standard rate of care. Remaining positive. The cancer was mostly was cut away in the operations. The radiotherapy should mop up any cells left over. It means I don't get the chance to have the belt and braces approach of Chemo and the lower dose of radiotherapy to protect the muscles burn out from the radiotherapy burn out (fibrosis) that the Pathos Lower dose radiation may have given. Staying positive though. 

I'm going to contact them on Monday.. I'm confused. I didn't see my usual oncologist.  I saw a lady who said she had lots of people to see and needed to to get the pathos re consent form resigned quickly.  She really didn't want to revisit my pain meds (as my Consultant said she would) but she did in the end! I did not get the chance to pull out of Pathos.  Not that I'm sure I want too, but I did not get a chat with someone to talk through options as I was led to believe I would have by the Consultant and by my SC research nurse.

All the best to all . xx

Hi Suziewoos 

Thanks for the update.

I'm pleased to hear the operations went well.  You've obviously got some decisions to make regarding your next treatments.  Do make sure you get to sit down and talk it all through with the consultant and the team so you can make some properly informed decisions.

All the best.

Linda 

Hello everyone! 

A bit of an update with my treatment. 

I had the PEG in a few days ago .. I didn’t expect it to be so painful! Took me a couple of days to get used to it also the headaches are back making my life and sleep miserable! 

The mucositis set in after the last chemo, making it difficult to talk , swallowing is weird and sometimes painful. I have to change my toothpaste - I heard Biotene is good , anyone has any recommendations? Mouthwashes and/or something to numb the pain please? 

Radiotherapy got delayed and I’m also concerned because my neck is swollen, the mask might not fit anymore! Hopefully no more delays.. 

I have no idea how I’ll deal with more pain from the radiotherapy plus once a week chemo.. i know i have to get through it! Please share from your experience with anything similar. 

 All the best and good luck to everyone going through their journey! I know we’ll eventually get there! 

All the best 

Ana77 x

Hi Ana 77 can’t help re the peg as I didn’t have one l but toothpaste yiu need your dentist to prescribe duraphat toothpaste but. bIITEne mouth gel and I found biomxtra mouth wash the best one for me. Plus toothbrush bought via amazon curaprox really gentle 

I have a blog www.radioactiveraz.wordpress.com I am 8 months post radiotherapy for tomsilmcancer. Accept any pain relief they offer yiu as yiu will needs it ,as for neck swollen try ibuprofen ?

good luck ask any questions

hazel 

Hi Ana. My tip for a gentle toothpaste would be Oranurse (bought online). I was finding Duraphat really stinging by week 3 of 7 chemoradio, and Oranurse was amazingly gentle. I used it throughout the rest of treatment and the weeks beyond when my mouth was too sensitive for anything else. It’s so important to keep your mouth really clean throughout treatment, and that’s a challenge. So do get a gentle toothpaste and soft brush as radioactive raz recommends and try to find a way to clean between your teeth as well - floss or brushes. The food left behind doesn’t help with the mucositis.

Don’t worry about the pain to come. Your team will advise you on increasing pain relief. It doesn’t stop at Orarmorph either, as I thought it did. There’s plenty more, if you need it and not everyone does. At the end I had a syringe driver with morphine going into my system 24 hours a day - it was brilliant. You wil manage this because you’ll have good advice and support - although you may need to Pester a bit if  things aren’t immediately forthcoming.

best wishes for the treatment to come

Hilary

Hello Hazel , 

Thank you for your kind advice. I’ll check those products out. 

I’m taking ibuprofen when I need it although sometimes the neck and headaches need something a lot stronger like oral morph. 

 I did check out your blog , quite interesting! 

Best wishes, 

Ana x

Hi Hilary, 

And thank you for your advice! Seems there are a few toothpastes out there suitable for every need and that’s good to know.

Even now I feel my electric toothbrush is too harsh on my teeth, so I definitely have to change it. I’ll need pain relief for sure, at the moment when I have headaches , even pressing my head on the pillow feels painful. And oramorph doesn’t work every time - slight increase of dosage or something else , like you suggested. 

 Thank you , I’m feeling a bit more confident about radiotherapy! 

  All the best to you ! 

 Ana