Hello everyone Im new here - base of tongue cancer

Hi 

I ate all of my favourite things before starting treatment....quite excessively....then lost over 16kg during treatment...I could stand it....20 months post treatment now....I maintain a healthy BMI ....eating most things.

Pete

Hi Stephen I was diagnosed with the same in December 2024 , I had surgery which involved a tongue reconstruction & a neck dissection for prevention . However it had spread slightly into my lymph node under the microscope so I am having radiotherapy to give this a big extra kick even though they successfully cut my cancer out . I luckily haven't needed to have any teeth out & I ate loads leading up to surgery . I like yourself was in so much shock & scared as from diagnosis to surgery was 3 weeks . The surgery itself was hard for the first 4 days but improved everyday & I was home by day 12 . So if they offer you surgery please take it as they are fantastic at cutting the cancer out . I was talking & eating 3 weeks after surgery & put weight back on . It's now 8 weeks after surgery & I start my radiotherapy on Monday . I've had a PEG feed fitted in case I struggle with eating down the line but honestly we have to remember why we are doing this & it's quite simple , saving our lives . Hope this helps & I wish you well with your treatment 

Debpad17 said:

we have to remember why we are doing this & it's quite simple , saving our lives .

Hi and welcome to our Community. 
Good luck with your RT. Let us know how you get on. 

Hi Stephen

I too am a recent newbie , my cancer slightly different , stage 2 tonsil cancer,even though They were removed as s child. 

Only sawvdoc 4th jan and totally amazed at how quick they get you tested. 

My journey is taking a slightly different route. I've been offered Tors robotic surgery  plus neck dissection. If they dont get it all then I'll have to have RT and chemo, so fingers crossed.

.

I have found this site so helpful,amazing people all willing to help and support each other, and no question is a silly question.

Good luck in the journey.

Lins

Welcome Lins and best wishes for your journey. Keep us posted 

I will later this week 

Hi All,

ive finished my first week of treatment. 

I had chemo and rt on Monday and rt every day since.

I am totally wiped out from the chemo and have no strength. also the steroid drugs seem to keep me awake. I stopped them yesterday and my pupals dilated.

I am still able to eat but have no appetite and let food turn cold before eating.

does the chemo affect wear off a bit soon? im told in a week

pleas give me any supportive encouragement as im struggling  

My husband went thru being told to eat a lot of fatty foods because he lost his sense of taste and pretty much lived on protein drinks. The loss of taste is awful. He wanted to eat but everything tasted bad. But it’s slowly improving   Also the treatment for this is pretty challenging in regards to oral hygiene. He’s had a full tray of rinses and creams.  But in the end you will be fine. No pain no gain. Good luck w everything

Chemo does take it out of you - more so than RT at this early stage.  I had weekly chemo on a Thursday.  After a couple of weeks I learnt that the chemo wore off by the Sunday evening and I was able to eat fairly normally again. At least for the first few weeks.

What we go through is brutal but in a year from now you will be back on a good quality of life.  I know a year sounds a long time but for what we gain by giving up that year it is a small price to pay. 

As things progress keep asking questions and seeking good advice.  Remember that your RT team is your daily link to help at the hospital. 

Hi Stephen l

Sorry to hear it’s been tough week , it’s really hard to answer how it will be for people as we all have different reactions , varying amounts of Chemo and Days to seven weeks of varying levels of Radiotherapy.

What I can say is having been very ill since my first day of treatment ( spending most of it in hospital) it is very very tough ( for many of us)but also doable…. take one day at a time your doing great you are still eating ( even without any appetite) sadly that also happens to most of us .

There are lots of different anti sickness drugs  but nothing really to help with the fatigue.

I would cross of every day in my head and at the end of the week I would congratulate myself on getting through it . do the same just think it’s a brutal treatment but it has great cure rates for those of us who are HPV+.

I was so tired I as wheeled up and down to daily radiotherapy(7weeks) either in wheelchair or the bed but it was definitely worth it!!

Stick with us Stephen and best of luck for the coming weeks.

Debbie

Primary Tonsil Cancrr T4Nb2M0 +16