Next steps

Hi Lylo. Well at least you have a plan in place. The diagnosis has come as a huge shock and you are bound to be disorientated and worried. The sedatives are a good idea. I have a friend going through similar RT and chemo at the minute and she has tried hypnosis. She has a tape made for her to listen to while she is being treated. I shall ask her to contact you.Don't worry about your mask. It is a really simple procedure and doesn't hurt. You'll be asked to lie down and positioned how you would be for treatment. They use a plastic mesh that is warmed up in warm water to make it pliable. It's draped over your face and pulled into place. It's warm and wet and feels like a warm flannel. It hardens in a few minutes and they take it off. There will be a radiographer sitting talking to you all the time and it really isn't anything to worry about. It covers your whole face and shoulders.

They will scribble some marks on it.

You might go straight on to the planning CT scan wearing the mask, or be made an another appointment to have that done.

You get some Intravenous contrast agent to show the cancer up on the scan. That's not difficult either and you'll get talked through that. Ask them to cut eyeholes in it. It makes all the difference to be able to see out. 

They may give you a tattoo in the middle of your chest to use as a positioning guide . It's just one little dot and not everybody gets them

You'll be fine...

Macmillan have some information on RT masks here........ MASK

It's great that you don't need any dental work. It means they can crack on and get RT organised.

Radiotherapy doesn't hurt but you will get an  increasingly sore mouth from the end of week two. That's to come so don't burden yourself with that yet.

I didn't have any chemotherapy so cant advise you on that but there are plenty of others who have and will be along to hold your hand

Good luck

Hi

I agree with Beesuit. I was also overwhelmed with all the information and anxiety levels were high. I was lucky to know a clinical hypnotherapist who made a tape I could listen to at home and this made a huge difference (he had had throat cancer 12 years ago, so he knew exactly what I was going through). I am slightly claustrophobic, so the mask and the RT also terrified me. They were both a doddle. The mask making is like having a nice warm facial and the RT was only 3 minutes max, so 1 music songs worth. I tried a tranquilizer in the first RT session but did the other 29 without and was fine. You can ask the radiographers to talk to you throughout or play music. I had Carboplatin x 2 (normally it is Cistoplatin) and apart from fatigue for 24 hours after, suffered no ill effects. My cancer was possibly tonsil (they never found the primary) and I did have neck surgery, so my experience may be different to yours. I also found once the treatment started, my nerves calmed a lot. All the very best.

Tricia

Hi Lylo

My tumour was base of tongue.  I did have surgery as the hospital where I was referred had a robot to carry it out, plus I had a neck dissection to remove lymph nodes.  Six weeks later I had radiotherapy. 

The mask sounds like a horrendous ordeal but really it isn't.  Dani and Piya have already given you a good indication of what to to expect.  My additional advice would be to make sure you're completely comfortable in the mask when you have it fitted for the CT scan.  I found it too tight in certain areas, especially on my adams apple, so they cut little areas out and refitted it several times to make sure I was completely comfortable.  They were extremely patient and wanted to ensure that everything was right for the radiotherapy sessions as they're timed appts.   After the first session I weirdly found it quite relaxing and each session is very quick.  The radiologists spend more time adjusting you on the table etc than the actual radiology time.

Good luck next week.

Linda x

Hi Lylo

Everyone has already said I would have said , the mask making us really nothing to worry   about. I gave my mask a name and told her every day the treatmentbwas saving my life and afterwards I would bring her home. Which I did , she was guest of honour at our ruby wedding bbq as without her I would possibly not have been there.Glad yiur hubby was allowed in with yiu it really does help if someone takes notes, as your head in a whirlwind.I had chemo as well at my hospital they give 3 large doses instead of 6 smaller doses l I was fine with it  just took the tablets as I was told to Then later on in treatment when eating became problematic u has the N G tube fitted .I too couldn’t have surgery as one if my lymph nodes was too close to my spinal cord ,but radiotherapy  did what it needed to do.As an example today u e cycled 45 km and yesterday walked 10 km my eating is almost back to pre treatment level seems and life is good. I am now 63 .

Do you know your h p v status that’s a question to ask , we are here if you need us ,all of us are here for you .or if  you want to rant just rant at us .

Keep strong Hazel xx

Thank you Dani for all your advice that really helps..... just on the mask I’m not bothered about eyes as I shut them all the time I’m fine with that .... it’s the breathing do they cut hole for mouth and nose?

Thank you Hazel, I will ask about hpv status.... they mention about feeding tube, how is that put in ? Do you have sedation? Does it hurt? I’m worried about the swallowing and breathing side... also do you bring your mask home once it’s made?

Thank you Linda for your help.... they mentioned wearing mask for scan, but mentioned CT and MRI would I have to wear mask for both of these? The MRI scanner I struggle with already it takes so long? On the chemo is it just a needle in your hand do you know?

Hi I’m Lindsey, similar situation. I’m 45 and have base of tongue cancer caught early and same treatment plan. I have a mask which is great as I have the holes cut out. My lipstick is even smeared on the mouth I’m week 4 chemoradiotherapy. Diagnosed in July and my treatment will be finished at Halloween. One node in my neck which has gone now to radiotherapy. I have embraced everything and everything that people are giving me. Fortunately I am private patient for my chemo which means I can have it at home which I do every Tuesday. I’ve not been sick, I’ve lost about half a stone so far but I’ve changed my lifestyle and don’t drink alcohol anymore as I can’t taste it so not surprised at the weight loss. I have a counsellor, I do have anti anxiety meds but actually not using as I’m coping well. I have told everyone and the support is unbelievable from friends, family and colleagues. I’m still working all though the fatigue is building. I’m trying to eat as best as I can and taking ons when I need it. I’m not on a tube and didn’t need teeth out which was the most terrifying for me. I had my tonsils out and it wasn’t there. It’s HPV positive which is good. I use a therapist in RTT who has made me an audio tape which I listen to at every session and it’s about mindset and mental strength - happy to recommend him on here so I go on the machine, I listen to him and I am string and will beat this and so can you!!!! 

The chemo is six hours but majority of that is saline, steroids and meds to protect your kidneys. The chemo bit itself is only an hour. It goes into a vein in my hand and I sit and work on my laptop while it feeds through. I have to drink a lot and monitor my ursine output. I have not been sick but I prevent it with the anti sickness drugs, steroids etc that they give me. I’m managing my mouth pain with oral morphine and liquid paracetamol and take it religiously to be ahead of pain, not chasing it. I’ve also built in time for me so I’m having a weekly back massage to take the stress out of my back and shoulders, I’m having jacuzzi baths to relax with nice oils, keeping on top of my hair and nail appointments and trying to be the best version of me possible. Sleeping and resting when I need to, turning visitors away and only responding and updating to well wishers when I am up to it.

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