Partial Glossectomy and Radiotherapy

Hi Krystine

at my hospital Leeds the oncologist decided who had pegs based on his knowledge in my case he said I would maintain swallow but I hadn’t tonagreebto a nasal feedingbtube if needed. I did need ine week 4 for 6 weeks to be honest the staff in radiotherapy were wonderful I also developed a radiation burn in my neck so had to have that cling filmed by them every day prior to treatment they then fed the nasal tube through the mouth of my mask and after each treatment took it back through and fastened everything back together.

Re pains attack’s no I didn’t but I decided early in that I was going to breath yoga style through treatment and take my head off mentally on a bike ride or a walk that we lived I practised rimjngba lies in the bed at home taking between 15/20 mins and honestly in treatment I never got to the end if the ride  plus I made playlist s up on cd s different ones and the staff appreciated some different music I went from Springsteen to ABBA on last day I gave them to the unit  

just remember the treatment is going to save your life and you can do it if I can do it anyone can ! I previously cried if I broke a fingernail !!

i have a blog www.radioactiveraz.wordpress.com where I show pictures and describe my treatment .i am now nearly one year post radiotherapy.

any questions please ask 

Hazel

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Hello Krystine 

Like Hazel I had an NG tube three weeks into RT

I’m glad I didn’t have a PEG. 

The NG tube is so much more disposable and when I could cope without I took it out myself. 

As for the mask maybe you could ask them to cut holes outfit your eyes then at least you can see round. 

You can watch the machine go round you killing the cancer or just lose your eyes when it’s right above you. 

My Treatment room had a soothing screen picture of a waving meadow on the ceiling. 

Best if luck 

Hi Krystine

My husband had much the same surgical treatment as you, except they took the replacement skin from his tummy rather than his thigh. He had a PEG - his consultant said he would not allow him to have the radiotherapy without a PEG or RIG as the impact on his eating would be too high and he would not stay strong enough to cope with the side effects of the RT without it. The PEG was very straightforward as it did not interfere with the mask in any way. He was quite worried about panic attacks and not being able to breathe/swallow as your face tends to swell as treatment goes on; but the staff were very aware of this and there were ways to indicate distress, in which case they would have stopped treatment immediately. In fact he coped very well with it once he got used to it; and due to maintaining his nutrition he made a very rapid recovery afterwards. He is now nearly 4 years post treatment with no recurrence.

I know some consultants seem to fear that if you have a RIG or PEG you will stop swallowing. This seems to be a personal bias - I haven't come across anyone on this forum who has not made a huge effort to keep on swallowing at least water throughout the treatment,  even if they have a RIG or PEG in place. I have come across people who have had to be taken into hospital for emergency drip feeding/hydration because they have got into a bad state as a result of not being able to take in much food or liquid due to the pain. As I said, our consultant was of a different view - he prioritises keeping your body as healthy as possible through the treatment. All consultants seem to be very opinionated, and it is an eye opener how little they seem to discuss with each other the actual statistical outcomes of their different approaches!

My view - if you think a PEG or RIG might be helpful then ask for one!

Especially if an NG tube causes panic; once you are in the RT process they will not fit a PEG and NG is then your only option.

Hello Krystine

Another little tip about the mask which I got from this group and I found helped me.  I was told to practice lying still relaxing at home with something covering my face.  Perhaps a tea towel.  Just have it there for a few seconds to start with and gradually try to keep it on for a little bit longer each time.  I found I eventually got used to the feeling of my face being covered and didn't have any problem with the mask.  

If you're worried about the NG tube then do speak to your medical team about it and see if there are other options suitable for you.  I was reluctant at first to tell them about things that were bothering me but I quickly found that they were often able to find solutions to problems.  For example I used to get very panicky queueing up in the blood test dept but when I explained about that they made other arrangements for me so I didn't have to wait.  So don't hesitate to speak up.

Best wishes for your treatment.  xx

Hi Krystine

how are you? We’re in a similar position, I’m 39, had the same surgery as you and I’ve just finished 6 weeks of RT. No chemo.

i was a nightmare getting the mask fitted! I freaked out to the extent it couldn’t be put on me. We tried anti anxiety meds but that didn’t work. My doctor then decided that as I was only having my tumor bed treated, they could use a smaller mask that didn’t cover the whole face or neck and shoulders. I managed with that one. Actually getting the treatment was a breeze compared to the fitting.

Today I finished my final RT session 30/30.

I started taking morphine in week 4, and now at the end of week 6 I’m on 24 mg/hour via fentanyl patches and top up with 4-6 5ml Oramorph per day. I’m told this is a fairly low dose of morphine. In addition I take paracetamol and use an aspirin rinse multiple times per day.

I’m in a fair amount of pain. My pain is an intense burning / stinging feeling that is worse when eating and after eating. Until the last few days the ulceration was almost all on the left side of my mouth (side being treated), but completely covering that side, including inside of my cheek, lips, soft palate and back of my mouth. The last few days I also now have ulcers on the right side of my tongue. 

For the past 3 weeks my diet has consisted of Fortisip / Ensure, Scandishake, Calogen and chocolate mousse. They’re very pleased with me for managing the mousse, as apparently this counts as real food and will help to protect my swallowing function. I haven’t lost any weight since the start of RT. “Eating” burns like hell, but I rinse my mouth with aspirin beforehand and that enables me to get 2,500+ calories down me per day.

The outside of my face and under my chin is red, but not an open wound. I have the feeling of mucus at the back of my throat but it’s not too bad. No mouth dryness so far, in fact I currently have excess drool! Except for nighttime when my mouth feels a bit dry. I’ve still got some taste remaining, in the part of my mouth that’s not ulcerated. 

Now I’m hoping I’ll be one of the lucky ones for whom things don’t get worse over the next two weeks! 

My doctor was adamant at the start that I wouldn’t need a feeding tube. Although I’m in a lot of pain and eating is extremely unpleasant, it’s not unbearable. He told me that there’s a huge variation between people who have head and neck cancer, in terms of the area being treated, and you can’t compare with someone who’s treatment area is different to yours.

Let us know how you’re getting on with your treatment. I’ll pop back with another update in the following weeks. 

Hi Beesuit

I did have the eye holes cut into my mask and it has helped no end. 

My team also offered me a hypnosis session before my treatment which I did.

I've just completed my first week of RT with no panic attacks.

Hi SW80,

Good to hear from someone who has had the same procedure as me. I'm so glad you have made it through your RT.

I had a hypnosis session before my treatment started and I also had eye holes cut in to my mask. Both things have helped no end. I've just completed my first week of RT with no panic attacks at all

I had the tingly burning sensation on my tongue right after my first session and it hasn't gone away but it also hasn't got any worse yet. I just find myself drinking a lot more to try and relieve it. Also, freeze pops are my new best friend!

I'm already fairly strong pain relief as I have been since my surgery but I'm seeing my GP on Monday to discuss other options going forward.

My dietician is fairly certain that I won't need an NG tube and so I'm going to do my best to ensure I don't.

Please let me know how you are getting on, now your RT is finished, would love to hear all about it. Keep smiling

Hi KB

gkad you’re coping well so far 

it must be so hard if you have claustrophobic tendencies 

i hate to say it but your dietician’s expectations of needing no NG tube might be over optimistic 

Go with your own feelings and don’t try to live up to those expectations 

you need to be comfortable and pain free. Don’t fight 

Well that’s my opinion for what it’s worth

Hi KB21

will do! My pain started as a tingly feeling and got worse. The way I’ve described it to people, is to imagine they’ve gargled with boiling water! The pain isn’t that bad all the time though, if you get your pain meds right.

Have you been given soluble aspirin to use as a mouth rise yet? For me, I’ve found that’s by far and away the best topical  painkiller that enables me to drink the shakes. The relief doesn’t last long, but it’s very effective. If you’re able to take aspirin, I’d ask about that.

Hi SW80,

Just wondering how you are getting on since we last spoke. 

It's coming up for 8 weeks since I finished RT. I'm thankful that I didn't have to have any kind of feed tube in the end and I was able to maintain my weight until the very last week of treatment. 

I stopped being able to eat solid foods around week 5 of treatment and went to yoghurts, shakes, mousse etc. I have been extremely nauseous on and off since then and have at times, completely lost my appetite. 

In terms of pain relief I stayed on my oxycodone but it did increase towards the end of my treatment. I did get some burning on my skin on the right hand side of my cheek but I was given Flamazine to put on it and it had cleared up after a week of my treatment finishing.

Unfortunately, nothing else seems to have improved since then. I'm still unable to manage any solid food as my tongue is still too swollen. The burns on the inside of my mouth effected both sides and are not yet healed and still pretty painful. My tongue itself is starting to return to a normal colour but it seems to be very slow. My tongue is also now rubbing against my teeth which is making eating, drinking and even talking more painful than it was previously.

I saw my Head and Neck Consultant after 4.5 weeks of finishing treatment so pretty early to tell how things are going or for these additional problems to have taken effect. Now I don't see him again until just before xmas and if things haven't started improving by then, I'm going to be really worried.

The worst thing is that nobody can tell you what's normal and what's not normal because everyone is different.

I'd love to hear other people's experiences post radiotherapy, because it feels very lonely at the moment here xx