base of tongue cancer

Hi my hubby came with me every day. I was at Leeds cancer centre. We have suites  for radiotherapy my hubby stayed in  waiting room. My chemo days were  a lot longer  than your as Leeds cancer centre do chemo on week 1 wek 3 and week 7 I had 7 weeks radiotherapy. My husband was allowed into chemo ward he stayed a few hours in day 1 and came back for me  by my 2 nd  chemo he stayed all day and helped me navigate my way tj radiotherapy by that time I was getting tired as well  the mask is big but it did its job  I used to lie on table snd take my mind elsewhere either a bike ride or a favourite walk  I also took my own playlist in as they had a c d player  

you can do it once treatment starts you just get on with it  any questions just ask we’re all happy to help 

Hazel. 

Thankyou  it really helps having all of this support from survivors xx

That’s a fair old trek….and you have to get through Hull. We were up near Brid, but at least it was all cross country.  Yes, I had one of the dreaded masks. Actually I didn’t find it too bad. I just closed my eyes and listened to the sounds the machine was making and tried to block out the awful music they played! Give me Bach any day.  They offered me the mask to keep at the end of treatment.  I declined politely. Never wanted to see the thing again!

My husband came every day with me..,and was car parker in chief . Although you won’t have to pay for parking either at the Queen’s centre or anywhere else on site, actually finding a slot can be a nightmare..

And you’re right: it’s as tough, if not tougher, on our partners than on us.  I know mine went through the wringer.

good luck with the treatment. Happy to share my experience if it helps .

Liz

Hi Liz thankyou so much for your support..everyone on here have been so positive and thats what I need..im calling all of this the cancer cure and remind myself when I have panic moments that there are people farworse off than me bless them..I am delighted you have both made it through that awful time  :) stay healthy and happy  xxxxx 

Hi Susie, have they diagnosed P16+ SCC, if so that is treated by radical radiochemotherapy and no surgery. 
I had that and even though my tongue cancer was quite complex with a large tumour and couple of neck nodes impacted, the month long treatment killed off all of the cancer.

Stay positive 

Mark 

Markie 

Surgery is still in the mix for HPV driven OPSCC, in fact it's quite common. It depends on the anatomy of the cancer and surrounding tissue. 

Thanks for that ! 
Didn’t realise it was a different cancer. Wasn’t mentioned on the post.

Fingers crossed !

Hi Markie thankyou so much for your message,im gutted this happened to you too but delighted you have came out of the other end you don't realise how much hope this has gave me thankyou this forum is amazing with lots of helpful survivors.yes i have been diagnosed p16 plus t4 n2 m0 im not getting surgery ,ive suffered with losing my voice and just getting told possible Laryngitus etc for a while now and it was only when the lump at the side of my tongue appeared and wouldnt go away i thought this isnt right.the tumour is at the base of my tongue and they reckon it may have started there .I have had that mask fitted and not keen,a lovely person on this suggested i could ask about them cutting eye holes in the mask as i did feel a bit panicky in it even though i just said im fine every time they asked lol i will be getting 5 sessions of chemo/therapy and 25 of radiotherapy spread over 6 weeks as iwill get the weekends off.i have already opted to get the feeding tube fitted which is happening on the 8th Aug..Can i just say thankyou again and any tips would be much appreciated :)

Hi Susie, 

I am so pleased you have the P16+ strain. Surgery is not required at this stage because the radiotherapy is designed to kill off all the bad DNA cells. My course was 4 weeks of 30 days radio and 2 chemo. As for the mask, it can be very tight so please tell them if it feels TOO tight. They can loosen it by a couple of mm like I asked and it made all the difference. The actual radio session is only short, with the first 5 mins max taking pictures of your head and neck and then a few mins treatment. So, very short really. 
I also had base of tongue like you plus those 2 nodes in the neck which is all dealt with at the same time. 
What hospital are you at ? 
Following your treatment, they allow the radio to continue working in the body and will take PET and MRI scans 2 months later. My treatment was in Jan, scans in April and results in May. They will monitor you every 2-3 months after and make sure they scan you after 6 months as the first 2 years is the risk of return critical period. Then annual scans normally up to 5 years. I also have the RIG which is normal and it’s fine. It’s really important to keep your skin area on the neck well hydrated as it is likely to go all red - mine did. It recovers quickly though afterwards. Monitor your symptoms - you know your body best. You will probably suffer during treatment from saliva build up or dry mouth which is normal. Ice cubes or lollipops best for dry mouth. Different options for saliva build up including steam bath or meds. Keep in contact.

Markie said:

They will monitor you every 2-3 months after and make sure they scan you after 6 months as the first 2 years is the risk of return critical period. Then annual scans normally up to 5 years.

Hi Markie  Are you in the UK?