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Hello all, posting on a forum like this is a first for me, I usually post about games or conspiracy theories, but this is the first time I have ever posted regarding something g that is going to touch every facet of my life, something so (for the want of a better word) serious.
I was diagnosed just before Christmas with a T1 M0 N0 neck cancer, localised to the base of my tongue. Since then I have been referred to the Christie and the Professor who is managing my case took approximately 30 seconds to break the news that it was actually a T4 tumour and for reasons unknown it was still M0 N0. The treatment plan they have for me is 6 weeks of daily sessions of radiotherapy, with 2 sessions of chemo using Carboplatin. I’m frightened, I am having my mask fitted tomorrow, and treatment starts on Monday. I’m not actually sure I want to do this! I’ve read up and I’m scared. I’m not brave, everybody and I mean everybody that I’ve been exposed to at the hospital have been attentive, emphatic and understanding. I don’t want to do it though, are there any tales here that anyone can give me that ‘it isn’t as bad as you read?’... Because believe me people, I am very tempted to just f*ck off to a Latin American beach and drink myself to death.
Hi please hang on in there, it is very early in the morning over here so all the people on this forum are asleep, you will get plenty of excellent replies. I would strongly advise not to keep reading from the internet as its so misleading and its never as bad as you think its going to be, im glad you did not use a full swear word in your last sentence as we try to discourage this. Im sure you will be in a better frame of mind tomorrow. Take care.
Its sometimes not easy but its worth it ! Click here to find out more
I'm not unsimilar to yourself,diagnosed may time with base of tongue stage 2 with various nodes affected and M0.
Very good success rate but journey arduous ,finished radiotherapy and two chemo (cisplatin) September 11th and returned to work stages return this week.
The great thing about this site,people are so helpful, as things occurred with me during treatment I was able to come on here,ask questions, read other people's experiences and get some kind of comfort knowing were all in the same boat.
Some people have done blogs and they are really good,by the end of today I'm sure you will have had replies, would go into more detail myself but I am going out the door to work !
I'm nearly back to my old self some things have changed but I'm good, just waiting for my pet scan this month to get the all clear
Good luck with everything, like Chris cays keep off Google, you've found the best place !
Hi Babbinel. You’re in a horrid place right now - the ghastly anticipation of horrors to come which you don’t think you can do......Yep I’ve been there. Mask fitting was fine, the planning scan afterwards was awful and I had a panic attack, went home and told my husband I couldn’t go through with treatment. So I talked to the lovely staff, they cut holes in the mask and despite my fears that I would leap of the table and refuse, everything was easy. Yes my heart was racing, but not a problem to go everyday and receive the treatment - I was 7 weeks of radio and 3 doses of chemo. I make a fuss with a paper cut, a thorn, but I got through the treatment and you will too. During the planning scan get them to talk to you via the intercom, they can do that during radio treatments too.
My advice for getting through treatment is to have short term goals (”I will get through this because my young son needs me”)and to get support from those who know and love you. tell everyone close to you and ask for support - maybe company for the first few treatment visits, maybe calling to take you out for coffee regularly, dropping in meals for you and your son, go for walks whatever. If you’re not working or busy during the day it’s easy to dwell on how the treatment is going - contact friends, get out and enjoy yourself for as long as you can during treatment. Those friends will support you as it gets tougher and be thrilled to see you come out of the other end.
I have made new friends on this journey, good friends and my life, 2.5 years on from diagnosis is different, with things to moan about, but also more fun. Who, aged 50 plus doesn’t want to find they’ve lost 2 stone and can’t put it back on?! And I can’t drink red or white wine now - lucky there are so many gins around as G&T is fine as is sparkling wine - bring on the champagne! (ok usually Prosecco, cava!!)
Talk to the lovely people in your team about the feelings you’re voicing here - you are not the only one to feel them and they can help. I remember being in your situation - terrified, wondering if it was all worth it - but I can tell you, as countless others on this site can that it is definitely worth it.
I'm sorry you've found yourself here. Firstly don't panic. Avoid Google. I don't think anyone here is going to gloss over the fact that the treatments can be pretty unpleasant but they are all doe-able and your medication team will make sure you are not in pain and as comfortable as possible. The condition is treatable and there are a lot of people here, myself included, who have been through it. You will find you have inner strength that you don't know you have. Nobody wants to go through this but you'll be looking back on it rather than forward sooner than you can imagine. Please do ask questions here , take a notepad when you go into see the consultants because they will bombard you with information and you will forget
Good luck with the mask fitting and please keep us up to date with your progress.
8 years on from base of the tongue cancer.
first of all YOU CAN, WILL and HAVE to do this...
I was diagnosed 5th June 2019 with tonsil cancer... I have never been so shocked in my life...did not see it coming at all. I’ve always been reasonably fit, never smoked, drank very little and had no symptoms at all just a swollen tonsil. And so after totally panicking about the mask and the scans and being very claustrophobic I settled into the treatment very quickly. (35 RT, 3 chemo).I had a PEG fitted and used it from 3 weeks into treatment until 8 weeks after but it was no problem. Yes I slept a lot, I was sick for 3-4 days a week after chemo, my throat was painful and continued to worsen a few weeks post treatment..and I felt very bad at times. BUT i was proud of myself when every moment I was terrified of came..was dealt with..and went..I gradually began to feel better and now 18 weeks after treatment I’m slowly returning to work, I’m doing 6 mile walks in the Peak District, I’m still sore and have side effects but I deal with them..AND the best thing is my post treatment scan was clear..no cancer...
you will be amazing and after all this is over...the Latin American beach will be so much sweeter...
good luck...keep posting on here...
and remember it really is just a moment in time...
All been said by my friends above Babbinel so not much to add at this point. The time between diagnosis and treatment starting is the difficult bit mentally in all honesty, once you get going it will fly by. It's intense and arduous and painful and tiring but you'll find a way through just like so many of us on here have done.
I'm guessing (because no node involvement and because you don't mention it) that surgery isn't going to be part of your treatment? If that's the case they can hopefully crack on with it quickly; many people, myself included, have to have some degree of neck dissection so the RT/chemo is delayed while they wait for the area to recover.
Have they talked to you about the possible need for a feeding tube of some description? If not it's a conversation worth having, some get by without but others find them invaluable.
And just to reiterate, don't use google and read some of the blogs you'll find on here; I did one and it's linked below, my cancer was in a different place to yours but the treatment was similar.
What is a Community Champion?
Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.
hang on in there. You will do it one step at a time just like the rest of us here. The trouble with this cancer is that we are usually well in ourselves when it’s discovered so it comes as a huge shock. I found my tumour myself and sat on it for only a couple of days then went into overdrive to get it fixed. I am nearly a year post radiotherapy for a T2 base of tongue cancer and although there are a few manageable sequelae I am fine; a work in progress to my old self but getting there. Have a read of the blog but it’s a bit scarey but equally, do you know, most of the pain is forgotten. Take somebody with you to your consults so that they can hear the things you don’t. Good luck. You’ll get there b
Hi This is Hazel I am 16 month post radiotherapy for tonsil cancer, T2N2NM totally out of the blue . I had never been as fit in all my 61 years so was floored for all if a few weeks then though ok positive mental attitude this cancer wasn’t going to beat me. plus Latin America overarrted Christies cancer hospital got a much better vibe !!!
You can do it , like others say treatment is brutal recovery hard but results can be excellent . So yiuve done the hard but got diagnosis joined the forum intoo have a blog when you feel you can cope reading it I tell the good the bad and the ugly bits But I am here to tell it .
any questions just ask
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz,wordpress.com.
i give a honest account of my experiences with tonsil cancer
T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.
It’s heartening to read the replies that I’ve had so far from here, and thank you for asking about my mask fitting today. Everybody at The Christie is lovely! Attentive, approachable and most importantly they projected their confidence into me with their professionalism. With specific regard to the mask fitting, it was a step I was dreading, however, in 2003 I qualified as a Scuba diver including assessments in the lovely cold water off Oban in Scotland. I will be honest, I didn’t find the mask fitting half as uncomfortable or claustrophobic as wearing a neoprene hood, tight dive mask and regulators in cloudy, cold British waters. The therapist is soothing, although the fact that Jimi Hendrix was playing on Radio2 in the background also helped immeasurably. I spent ten minutes thinking ‘this isn’t as bad as you imagined’. It certainly wasn’t a picnic, but I kept thinking that ‘I’ve been through worse for pleasure’...
it was still however, a surreal experience, and then wearing it for an extended period for my CT scan made me reflect on the visibility of the freezing waters of Scotland and I really should set a goal for the conclusion of my treatment. In short, I’ve chosen to do worse things for ‘fun’ and it wasn’t as bad as I had imagined!
No, surgery hasn’t been given as an option, my treatment plan is radiotherapy and chemo. I’m glad because my partial tonsillectomy and lingual biopsy were awful. I’m not brave.
Few of us are "brave" I think Babbinel, we just muddle through as best we can. The oft quoted saying that we are "fighting" is nonsense to me (though it helps psychologically for some).
I agree completely that the tonsillectomy is dreadful, so much pain. I was "lucky" in that my GP had one (not cancer related) at around the same time as I did so felt my pain and acted accordingly.
I have been spoken to about feeding tubes, including PEP and as somebody who likes food, the thought terrifies me. It’s one of the major points of questioning whether this is actually worth it, radiation burns, chemically induced sickness, weight loss, thought of it all is horrifying. I today had my MRI scan, that was hard work! It wasn’t too much any claustrophobic feelings in the mask, but maybe 3/4 or so of the way through it, I got cramp in my jaw so needed a break which they let me have after the cycle before the contrast dye, thankfully they were the last 2.
Hey it will be and is totally worth it!.. all of your thoughts I had...was terrified..but it all came and I did it!...everyone does...you will get through this..all of us are here for support...xx
Hi it’s worth It ! If u can do it anyone can . I am now 16 month post treatment ,ok still have some dry mouth and some meats are hard to eat but rare rib eye goes down well, lamb as well it seems to be in my case the slow cooked meats now that I struggle with in early days they were ok .
its worth doing it to live the treatment is brutal no point lying recovery can be long but I was riding my bike in Spain 8 weeks after ok only a few km , but on our last trip in NIbemebr I was doing 60+ km. I now treat it as a mere blip in our life’s and are getting in with things. People ask if u am still me and I can honestly say yes I am warts and all ! Ok I see ent everyb3 months but don’t dwell in it it’s a check up file it away until next time .
everyone on forum will help you
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